O. K. M.

Not certainly the last. But perhaps, maybe.

2011-04-11T15:45:00.000-07:00

(Based on an email I sent out to friends and family last week...)

Greetings!

I have not blogged since Fall/Winter and have been feeling the urge to post an update on Owen. I started back at Grounds for Change (our coffee roasting business) part time in December and work out of the GFC office on Mondays and Thursdays and at home as time allows throughout the rest of the week. The time I have available to blog is very limited as I am investing much of my "spare" time in GFC. I have spent the last several months reconnecting with old friends, establishing new friendships and taking more time to rebuild our social foundation. While I am not sure I'll get back to blogging, as most of you know, I AM on Facebook and really enjoy it for what it is - a way for me to stay in touch with so many friends and family. I'm grateful to those of you who choose to post updates, photos, etc. It's meaningful to ME. So if you've not connected with me on Facebook - please look me up!

http://www.facebook.com/profile.php?id=1137955460

Now that Elliot is two years old as of February 4th, he's much more active, inquisitive and requires significantly more of our time. Gone are the days when eight Kelsey or I could have a quiet phone conversation or sit for five minutes without constant questions and requests. Elliot and I are in a Friday preschool class (parent and child) which he very much enjoys. That said, his favorite thing lately is to join me on the occasional Mondays at GFC. He knows everyone one there and excitedly lists everyone's name off - repeatedly - during our 10 minute drive to the roastery. We get together with friends pretty regularly for play dates and he already has a couple of buddies that he regularly asks to play with.

Owen's recent 24 hour video EEG (last week) revealed that he is currently seizure-free. This is such joyous news for us and for now, we're just sitting with that knowledge and enjoying this time where we have one less thing to worry about. It's impossible to convey the peace that this news brings to me.

We still have ups and downs as it relates to Owen's overall comfort although it's getting a tad easier every day. His sensory issues are so significant that some days he is greatly upset by the wind or by loud noise, and other days, he is upset by too much quiet and too much heat. His sleep DID improve greatly after his tonsil and adenoid removal in early January. He falls asleep pretty readily each night with the help of a significant amount of melatonin. Our biggest sleep-related issue now is that he sleeps for 3.5 to 4 hours and then is awake the rest of the night. We'll be meeting with a sleep specialist next week to discuss this issue.

Our biggest concern continues to be Owen's spine and right hip. His hip is close to full dislocation (due to the fact that he does not walk, the socket that the hip seats into, was never formed by the force of his body weight) which will mean hip surgery. The orthopedist, however, is against doing any such surgery without addressing the spine (since it's obviously all connected). Without the ability to sit or support himself, Owen's spine continues to feel the force of gravity and his scoliosis continues to worsen. With this, we take it one day at a time. It's certainly an issue that weighs heavily on our minds.

Owen and I are in PT and OT therapies each week and I'm hoping that he'll soon be able to use the switch with the iPad that he received as a Christmas gift. I came across this blog recently, http://babieswithipads.blogspot.com/, one of dozens of sources "out there" that focuses on utilizing an iPad as a alternative communication device. My good friend, Laura, has been using one with her son, Victor, and she's been the absolute best resource available to us!

----

The day after I sent this update out, I learned that Owen's roommate at Lucille Packard Children's Hospital at Stanford, where he was admitted for four days in 2008 to begin the ketogenic diet, passed away suddenly. Lueza and her mother, Jody, became part of our community during that stay in 2008 and Lueza's passing has left a hole in my heart. While she was several years older than Owen, Lueza and Owen shared so many characteristics including a wonderful, infectious smile. We'll miss you, Lueza.

On a much lighter note, another friend and member of this wonderful community of ours (the one full of fabulous, unique kiddos and their families from across the country), has recently devoted a section of her amazing, funny, intuitive, intelligent and insightful blog to pediatric equipment.

http://birdonthestreet.com/equipment/

If you haven't already paid Katy a visit, scoot on over. You won't regret it and your life will be richer and wiser because of her.

I don't know when I'll blog next, but I'm not ready to say goodbye just yet.

Thank you - ALL of you - for your support the last *almost* four years. We appreciate your love and your interest in Owen's life. It means a great deal to us.

Warmly and with love,

Stacy

Keepin' it Real.

2010-11-08T14:22:00.000-08:00

What did I manage to accomplish this morning, perhaps while many of you were working on your computers, teaching classes, running businesses, crunching numbers, and in meetings? I kept both of my children alive. I made sure they were fed. I changed their dirty diapers. Okay, I also gave them a bath... Definitely the "cutest" part of my morning.

After twelve o'clock, noon, after cleaning up vomit and diarrhea and toys and dirty clothes and after putting in several batches of laundry, I showered. I ate. I had some cold coffee.

Elliot has been sick since Saturday and has been coughing so much that he's been throwing up. I just had the carpets cleaned three weeks ago and in three days he's managed to vomit on every single carpet in the house.

Next house. No carpet. Perhaps we'll just throw down some straw.

Owen is sick as of last night as well. Congested. Snotty. Coughing. Mild fever. He's actually on antibiotics for an ear infection he has from the last cold that both boys had two weeks ago. Fingers crossed.

So... I'm, for real, keeping the blog postings off of Facebook. I know so many bloggers, especially bloggers who have children with delays, seizures, life-threatening illnesses, and medical complexities, who feed their blog postings into Facebook. I read these everyday and am so appreciative of these connections. But now that I've been able to get back into blogging the last few months and have reconnected with many of the people that I "lost," I'm reclaiming Facebook as my own space. Not as a place where I update everyone on Owen and our family, which is really the original intent of this blog. I've been dragging my heels for a couple of months wondering whether there was someone else out there who, when I had to pull the plug on the blog last winter, was cut-off and wondering... "What happened to Owen?" I don't ever want anyone to have to wonder that...

So, you've been warned. If you want to know all of the juicy details of our ups and downs and arounds with appointments and seizures and therapies and equipment, or, if you're a parent who wants to make a connection, and connections are ALWAYS welcome, you've gotta check the blog. We actually appreciate you checking the blog and hope you'll stick with us, in sickness and in the health...

But all of the above said, about my "mommy morning," things are going quite well. Elliot and I both absolutely love his preschool and have made a number of really wonderful, new friends. Kelsey is loving the parent education night (for real!) as, the last I heard, he and a few dads will be getting together for social hour prior to each one every month. Oh, and at the last session his suspicions about sleep were confirmed. Five hours just doesn't cut it. Parents need eight. Ha ha. Yes, of course they do.

I was recently invited to join a committee to help plan and develop a Farm-to-School program at Suquamish Elementary where 45% of students are on free or reduced lunches. This project has been spearheaded by some really amazing teachers and community members, all of whom are passionate about providing children a nutritional and educational foundation through food cultivation and experiential learning. I cannot think of a better extra-curricular activity for this mama. I'm very, very excited. I was closely involved with the Suquamish Environmental Education Boosters while I was still at Grounds for Change full time, through our membership with 1% for the Planet. The "Pond Kids" used the donation made by Grounds for Change to attend Islandwood on Bainbridge Island - something that otherwise, might have been out of their reach. I'm excited to have ended my four year hiatus with these fabulous kids.

Owen has been doing great at his PT and Speech sessions at Harrison Pediatric Rehab Center in Silverdale. The facility is beautiful and the staff, excellent and incredibly skilled. It is a perfect fit for Owen. Finally. He is currently being fitted for a stander, to help alleviate both the VERY tight hamstrings (the source of the acute pain episodes he was having) and try to mitigate any further hip issues. Owen's PT told me that even having children standing at a 30% angle, placing weight on the feet and legs, can have a significant, positive impact on the hips, hamstrings and spine.

The two volunteers from the Make-A-Wish Foundation, both attorneys, will be meeting with our family on November 21st to help us finalize Owen's wish. Interestingly, but perhaps not so surprising based on their experience, they made a suggestion that we are very excited about and will probably choose. We're not ready to spill the beans just yet, however. Through the Make-A-Wish Foundation, we've also had the pleasure of connecting with a family up in Port Angeles whose son is very similar to Owen, just a couple of years older. Owen is a rare-find and we are always so eager to make these connections, connections which are much more difficult to cultivate than those that occur simply by attending a Parent and Child program at the local preschool.

Off to tend to my little guys...

Peace and warmth to all.

~ S

Strippin' down.

2010-10-20T16:46:00.000-07:00

Elliot and I just returned late Monday night from a lovely, fun-farm-zoo-aquarium-football-sister-Auntie-filled week. I miss my sister. A lot. She loves to laugh. Loves to be silly. She's whimsical. She's also kind, compassionate and has a big heart that is just oozing with love for her family.

It was harder for Elliot to adjust to the three hour time zone difference than I thought it would be, and our sleep was pretty limited, but flying with him was a piece of cake. He loved the indoor train and moving walkways in the Detroit airport. He perfected the word "pizza," given several opportunities as we passed by the numerous California Pizza Kitchens in the Minneapolis airport, to smell it and then demand it (I swore by the third one, that he could read). He made countless weary passengers smile and laugh, including an older Indian couple who were straight-faced as they sat down in the seats behind us and who, a few minutes later, were playing peek-a-boo and tickling a squealing twenty month old through the spaces between the seats. Out of all of the possibilities, he chose a woman from Vashon Island, our neighbor on our flight out East, as his favorite friend and asked about "Margie" for days, even mistaking another woman on our flight back home for this sweet woman. No meltdowns. No crying.

Dad was happy to have him return home and they have resumed their father-son breakfasting.

Owen. I missed him so much, his absence in my life amplified by the fact that we had just recently spent so many intense hours and days together throughout the last three months. I was so happy and ready to return to my two-of-three guys.

Owen was perfect while I was away. Slept great. Smiled a lot. Janet, Leslie and Herb enjoyed spending time with him and he benefitted greatly from their grandparent love. Kelsey was super-Dad and sent a number of photos of the two of them that kept me from missing them beyond way too much.

It's impossible to convey how much taking Owen off of Keppra has changed him - brought out his personality, made his eyes brighter and his smile more vivid. It has changed our lives. He'll be completely off of it in another week. The Keppra was most likely the biggest contributor to two years of agitation and fussiness. From the very first day we started Owen on Keppra, a broad-spectrum seizure medication, he responded with "Kepprage."

Why do they call it "Kepprage?" This was written by a grown man who had to endure it.

And I thought another comment left one of the epilepsy forums summed it up perfectly: "There is a term. I believe it was created by patients and parents not doctors, called "kepp-rage." It is used to describe the emotional spells caused by the side effects of Keppra. It seems that anger, and bouts of crying are the most reported."

Of course it's not coined by doctors.

It's tough, though, when your child is diagnosed with debilitating seizures, the worst form of pediatric epilepsy. Evil vs. Evil.

Another drug soon to be out the door... Clonidine. Owen is down to 1/5 of his highest dose and we will have him off of this sometime in November. The use of this medication, initially prescribed in June of 2009 as a sleep aid, has done nothing except make our lives miserable. It is a loaded gun for Owen, causing seizures when used at higher levels and causing withdrawl effects when not taken every six to seven hours. Way too volatile for a little guy whose life is already full of so much unpredictability and discomfort.

And, yes. We also took him off of Baclofen. It did nothing for the pain episodes he was having and actually increased his spasticity (most likely his response to its side effects). Dr. M in the Neurodevelopmental clinic told me he didn't believe it would work. I should have listened.

Just going through the list of what we are taking him OFF of makes me a little jittery and in need of fresh air. It should not happen OR be this easy that you find yourself looking at your son who is on too many, and too many of the wrong kinds, of medication. Too much. Too many.

The outcome of our appointment with the otolaryngologist (ENT surgeon) yesterday in Bellevue... Tonsils = small and not contributing to airway obstruction. Adenoids = large. As he was manuvering the scope through Owen's nose and into his throat and airway, the ENT doc says, "Wow, guys. Good news. He has big adenoids. Look at the size of those." I'm considering keeping a quote book from our specialist appointments.

So. Another hospital stay. Sometime in November or December. The surgeon said he is certain this procedure WILL improve Owen's sleep apnea. We just won't know how much until after the surgery. He reminded us that Owen has SEVERE sleep apnea and that even a decrease to moderate apnea would be a really good shift. He's hoping, as are we, that it will result in a shift to mild apnea (no apnea is not very likely given Owen's lack of tone/CP). According to the specialist, apnea at this current (i.e. severe) level causes irritability, cognitive dysfunction, inability to retain information and, long term, can lead to heart failure and respiratory distress. *sigh*

It will be a two night, three-day in-patient stay at Seattle Children's Hospital, the lengthy visit mostly due to Owen's CP and the fact that he runs the risk of fluid build-up in the lungs post-operatvely. They will monitor him in the ICU for a bit and then transfer him when he's stable to keep a close eye on him for another couple of days. It will be another week of recovery at home. Then, a healthy, restful Christmas at home. Yes, yes.

This is good news - the large adenoids. The surgery. It really is. It is something we can do. We are hopeful.

I will save a discussion on the other interventions, especially "Number Three," for some day when I am reflecting on how wonderful the adenoid surgery ended up being for Owen. How it helped him sleep better and made all of us happier and healthier.

But, the BEST news! After three months of waiting, we finally received the call this morning to let us know that Owen was approved to have a "WISH" granted from the Seattle Chapter of the Make-A-Wish Foundation. These granted wishes are reserved for children who are diagnosed with a life-threatening medical condition. Owen's underlying seizure disorder and severe cerebral palsy put him at risk for a short life-span. This is a hard pill to swallow and one that we don't dwell on. Instead, we celebrate his life and this news that we received today is just one more opportunity to do just that. Working with the Make-A-Wish volunteers over the course of the next couple of months to determine what would bring Owen great joy, is going to be so, so fun.

We'll keep you posted on what Owen wishes for...

~ S

Up and down and back again.

2010-10-01T15:25:00.001-07:00

Owen has severe sleep apnea. No surprise there. Thankfully, three months ago, in my sleep deprived state, with the support of my sleep deprived husband and in the company of my sleep deprived eldest son, I requested that this recent sleep study be performed. Because, I kept saying to all of the specialists, "NO ONE IS SLEEPING!"

What is surprising is that Owen had ninety (90) sleep apnea episodes in a four hour period. He was roused from stage 2 and stage 3 sleep ninety times. He never entered REM sleep, the restorative sleep that we all need to grow, learn, heal.

The data they were able to collect was both fascinating and the most helpful of any, from any specialist, to-date. Owen has a very distinct neurological response to these apneic episodes. If you look at his EEG absent of the sleep study data, you see bursts of "multifocal" activity which, taken out of context, are highly irregular. But when the sleep study data is laid down on top of the EEG tracings, as the sleep specialist pointed out, you can see where Owen's sleep apnea initiates (appears just prior to) these irregular EEG patterns. His brain is very angry about the fact that it's being ripped out of sleep for the ninetieth time.

We also learned from the sleep study readings that his oxygen saturation is excellent (except when he's not breathing due to an apneic episode, of course) his CO2 exchange is normal and his lung/chest exertion is rhythmic, strong and in concert with the work that his abdomen is doing.

One good thing about being in the "severe" category for anything (although I really think it should be referred to as "exceptional") is that you get priority loading. Owen will be seeing an Ear, Nose and Throat specialist at Children's very soon to discuss a tonsil and adenoids removal to open up his airway. This works much of the time to open up the airway enough to resolve the apneic episodes. The scar tissue from the removal also helps to strengthen the tone of the airway, making it less floppy and prone to collapsing during sleep.

So another inpatient stay. A surgery. Seattle Children's. But not for a few weeks. Elliot and I are leaving in a week and a half for a week-long, much-needed, play date with my sister in D.C.

And word from the orthopedic surgeon. No growing rods.

I've lost more sleep over this issue than any other, I think. If I have slept, nightmares.

Kelsey and I were both shocked. Elated. It's not even the case that Dr. S. said that it was optional and that we chose the chicken path. Dr. S. said it's not necessary. He said he won't do it. He's not concerned right now. He was direct. Knowlegable. He had talked to our pediatrician. To the neurodevelopmental pediatrician. He knew we were coming.

He showed us the final read of the spinal films. He measured and compared. What matters, they've discovered (the spine guys), is the flexibility of the curve, the degree of curve during the traction film. Owen's is thirty-five degrees at the point of the greatest curve. They start to become concerned at fifty. He indicated that Owen's curve has not actually increased much at all in two years. This is good, the spine guy said, since the spine grows most intensively from birth to age three (and again in the pre-teen years). It's all arms and legs for awhile.

Organs. Fine. Lungs. Fine. Neither are much at risk right now, especially the organs which are flexible and can shift and float around. One kiddo, curve much greater, older, had a kidney removed which increased significantly, his lung capacity (crazy what you learn...). Lungs are compromised with much greater degrees curves and, especially, more rigid curves. He was pleased with Owen's flexibility - in his spine, hips and legs.

Oh... the hip. Dr. S., also a hip guy, said the hip is not only far from dislocated, but that it's pretty well seated still and not causing any pain. This meshes with the read from two others (Owen's chiropractor who provides cranial-sacral therapy and his feldenkrais practitioner, who is also a physical therapist).

Speaking of... Resuming regular cranial-sacral sessions has almost eliminated Owen's acute pain episodes. Too much "sacral-sitting" in a poorly fitted car seat (a common problem, I guess, according to Owen's new physical therapist at the Harrison Pediatric Rehab Clinic in Silverdale). Pinching of nerves between L5 and the sacrum. Tight illopsoas and hamstrings. These things discovered by touch. Trained hands. Owen's chiroprator and cranial-sacral provider. Thank you, Mari.

My "musts" for Owen. Cranial-sacral. Feldenkrais. Massage. And his new physical therapist is fabulous.

And, yes. The new office in Bellevue is indeed, quite fancy. Lovely, really. But it's good to be heading back home. Again.

~ S

Another day.

2010-10-01T08:58:00.000-07:00

Over in the city. Hours full of appointments. Clinic rooms. Hospitals...

Kelsey is with us on this lovely, sunny Autumn day. We'll be receiving the sleep study results from the sleep specialist (pulmonologist) in his office in Issaquah. Then, we'll be making a trip up to Bellevue, to the fancy, new offices of the Seattle Children's satellite clinic where the orthopedic surgeon has his fancy, new office. Bellevue's a fancy place. We'll be hearing, directly from the orthopedist, whether surgical intervention - growing rods along Owen's spine - are necessary, right now, at age three, to help maintain his respiratory health and keep him from suffocating under the weight of his own body. Serious shit. I can't even begin to articulate the fear, anxiety and saddness I feel surrounding this issue.

It's a serious one. A serious concern. Owen caught a cold this week from Elliot. We've been up every night with him, suctioning the mucous out of his throat to keep it out if his chest. Fear. But, this time, it seems as though he'll be fine. Hope.

~ S

It's been a long time...

2010-09-14T11:53:00.000-07:00

Since we've received news this liberating and wonderful.

Owen's infantile spasms (seizures) are "on their way out," according to O's neurologist and a fellow neurologist who also did a read of the EEG. They only saw a "couple" of seizures. Two. I carefully took notes, indicated times, gave detailed descriptions of Owen's "suspicious" posturing. I pushed the button. None are seizures. None of them. I feel as though I could both laugh and cry and I said that exact thing to the two neurologists who gave us the good news.

Trust me, the infantile spasms, as everything we read about them in October of 2007 indicated, have left their mark. At the time, Owen was having over a hundred seizures a day. Children with IS typically lose any abilities they had prior to these seizures (such as head control in Owen's case - I still torture myself by looking at video of him, on his belly, holding his head up) and gain very little in terms of developmental milestones. This also does not mean that Owen is not at risk for future seizures - new and different. He is. But the diet worked - it reduced his seizures to practically nothing and kept new ones at bay, for the most part. If the newest research on the Ketogenic Diet proves consistent and accurate, it may have even initiated permanent changes in Owen's brain, making him less susceptible to seizures as he grows older. Now, we get to slowly and carefully, under the guidance of a nutritionist here at Swedish, over the course of the next year, wean Owen off of the diet and slowly introduce whole foods.

Owen's neurologist suspects involuntary muscle spasms (brought on by increased spasticity) are one of the causes behind his wakefullness and difficulty falling asleep and is going to suggest doubling the dose of baclofen (he indicated that we're using a "tiny" dose right now).

The other probable cause of Owen's lack of sleep... sleep apnea. His "slack tone" likely also creates an airway restriction problem We'll be meeting with the sleep specialist to discuss the results of the sleep study and talk about sleep positioning and a potential tonsil and adenoid removal to open up Owen's airway (a fairly minor procedure).

The neurologist attributed the rest of the arching and sleeplessness to "irritability." Actually, it's more so the case that he's stubborn, strong and opinionated and he's not afraid to let us know what he thinks... And this, I will celebrate.

The sun is up! Well... almost.

2010-09-14T08:13:00.001-07:00

I'm looking out from the 9th floor at Swedish, across the east side of First Hill and out over Cherry Hill. It's a lovely view, classic Seattle, although the way the fog is settled in, between the houses and buildings, it looks like a cold day in late October. But judging by the people I see, walking the streets below, it is still a relatively warm day in September. This is how one gauges the temperature from inside a hospital room...

I just recevied my A La Carte breakfast from the cafeteria. Scrambled eggs, toast, bacon (!) and a LARGE coffee. Owen slept from 9:45 pm until 12:45 am last night and then from 5:20 am until 7:45 am. This is how it's been since late July.

Our neurologist is due for our in-room consult at 11:00 am to discuss the findings and, The Plan. Hopefully (please, please, please), the EEG technician will arrive around noon or so to start to wind things down and begin the hour-long process of removing the leads. My hope is that we are on our way home by 1:00. It never seems to go that quickly or smoothly, so I'll be elated if I can eat dinner, tonight, at home with my family.

Since the neurologist can view the EEG remotely, and does so throughout the twenty-four hour period, he has a good idea of what things look like - whether he needs more data or if we can be set free soon. We have been able to capture two of the "acute pain episodes," so will know definitively if these are seizures. This is a very good thing.

The other possibility is that we stay another night. Long story, but we requested in June that a sleep study be done in conjunction with the 24-hr EEG as Owen's sleep is so poor and we absolutely must try to help him sleep better - so that he can learn and develop to his potential. My sense from our night and the data that was collected (the sleep study technician stays in the room all night to assess and fine tune the data and was forthcoming about what he saw) is that Owen may have sleep apnea - either induced by seizures or the one of the underlying causes of his seizures. We suspected this.

Strange as it may sound, it is exciting to have all of this data - practically every square inch of Owen's body was covered in leads, sensors, and monitors assessing his breathing, body movements, fluctuations in muscle tone, respiratory functions, the data from all of which will be used in conjunction with the EEG tracings to create a picture of what his body and mind are doing and how this is affecting his sleep and seizure activity. I have developed a love-hate relationship with all of this medical technology. Beeping, bright lights, internal fans cooling computer processors... Regardless of my emotions, I also appreciate this technology and most oftentimes, it makes Owen's life better and his experience, clearer. What IS clear, and now confirmed, is that he's having increased seizures (the horrid and insidious infantile spasms) as he falls asleep. We noticed this increase a few weeks ago, some days the increase more pronounced than others.

So the combined studies should tell us why he's so wakeful. Pain? Seizures? Sleep apnea? Uncontrolled muscle movements?

Then we make The Plan.

SkeletomuscularScoliosisFlexorsHamstrings... Oh my!

2010-09-10T12:46:00.001-07:00

I should be napping right now. If I was able to nap (I've never really been able to sleep when it's light outside), I'm sure I'd be dreaming about warm, sandy beaches. It is a chilly, damp, cloudy sixty degrees. I have never, in my thirty-eight years, fifteen of them spent in the Pacific Northwest, experienced a Six Week Summer. I'm not a big fan.

So, since the boys are sleeping and my pineal gland is really the one in charge, I should probably consider relaxing with my headphones and new agey music. Giving myself quiet time, although sometimes difficult and, lately, almost impossible, is always - always, always - beneficial when the weight of navigating medical issues and clinic hallways seems overwhelming.

Instead. I'm blogging.

Owen is still in pain. A short break, three or four days, late last week when he seemed to be more at peace. That's all he got.

The AFOs (foot orthotics) helped to stop the spasming in his feet. The baclofen hasn't done anything just yet, but did improve his sleep for a few days. We're not quite at our target dose, but if this is the pharmaceutical solution to Owen's larger pain issues, I'll be very surprised. I do, however, think it is a good choice for long-term spasticity management.

Owen is back to only sleeping a couple of hours a night. He still has episodes of acute pain when in his stroller and is just generally, very, very uncomfortable. He arches in my arms, arches in bed, arches in his stroller. And cries. And cries. Those who know Owen, understand the significance of me talking about these behaviors outside of their normal context. The intensity, consistency, and tone are all very different. Cuddling or relaxing in his bed, listening to HIS new agey music, no longer works much of the time. Once again, the medications we have for calming him, are not working.

There is an underlying issue that we've not discovered yet. I know this. Whether or not this process of discovery results in insanity, remains to be seen, but some nights at two o'clock in the morning it feels like a real possibility. Fortunately, then, the sun comes up and for that, I am grateful.

We are now seven weeks out from when Owen became increasingly trapped inside a body that hurts and does not work.

So I have a (another) call into the orthopedics clinic at Seattle Children's Hospital. We are running out of possibilities but my hope is that we're finally getting closer to understanding what is going on since we've ruled out almost every other possibility that exists. It seems as though there are multiple issues, probably all brought on by increased spasticity and as a result of Owen's cerebral palsy. I've been spending quite a bit of time the last few days reading about skeletomuscular complications that occur as a result of cerebral palsy. Stuff I should already know intimately, but that's not "easy reading" in the evening when there's no acute issue and you just want some good fiction.

1. Right hip? Owen was diagnosed with mild subluxation of his right hip two years ago. Dr. W. in the orthopedic clinic two weeks ago was concerned about this hip, and after a thoughtful review of Owen's films from this August, suggested additional x-rays and bracing. In a subsequent follow-up visit with the orthopedic surgeon, Owen's hip was given secondary status, to the curvature of his spine and the growing rod surgery. No one is right or wrong - it's a tough issue. I was encouraged to "feel" the difference in this right hip, compared to his left hip, when at Children's Therapy Center last week (see below), while Owen was seated in his chair. Left hip - set within the socket and the musculature. The right hip - a bony protrusion. The PT there strongly believes that his hip might be the cause of significant discomfort, especially when seated. (The x-ray above is NOT Owen's but does illustrate what hip dysplasia looks like in a child.)

2. Tight hamstrings (hamstring contractures)? This is also a very common problem in children with spastic quadriplegia CP and can be both painful - even more so when the contractures are significant, the muscles are shortened (both due to CP) and when the child is in a seated position.

The hip flexors are connected to the hamstrings are connected to the calves are connected to the feet. And all of this, connected to the spine. Of course, then there is the neurology behind it all... Throw in spasticity and hypotonicity and you've got serious potential problems (or really good band names).

We decided to follow through with a recommendation we received in February to see the wonderful, compassionate, talented folks at Children's Therapy Center. There, on Wednesday, Owen was measured and casted for a TLSO (thoracolumbosacral orthosis) and a SPIO suit (the one generously given to us by our friends, the Leemans, does not fit Owen anymore). We are choosing this direction, external bracing, with the hope that we can keep Owen flexible, keep him "moving," and, when not actively moving or exercising, can keep him straight. Then, in his early teenage years, spinal fusion will most likely be necessary to stabilize the spine once it has stopped growing (around 11 or 12 years of age). We've been told by the surgeons that external bracing does not work. They may be correct, but we will explore this route first, with a careful eye to any increasing curvature.

Owen and I will be in for a two-day, inpatient stay at Swedish Medical Center (Seattle) on Monday and Tuesday. We scheduled a VEEG (24-hour video EEG) and a sleep study three months ago, for the 13th and 14th of September, to establish a baseline prior to Owen coming off of the ketogenic diet. Should he have any increased seizures as we wean him off of the diet, we'll have a "pre-wean" EEG to better understand any possible correlation. Parents are required to remain in the room at all times, 24/7, since monitoring is part of the process (I need to push a big, red button should he have any questionable episodes that might resemble seizures - no pressure, right?). Owen and I have been away so much these last few weeks and these stays are so far from home and far away from my two other guys, it's hard for me to think about doing this in just three days. Please feel free to send some cheer our way early next week. I'll be on Facebook, have my phone, access to email... I can even send out our room number if any locals want to join us for an all-nighter. Just kidding. I've got a button to push...

Xo,

S/K/O/E

A Lesson in Spasticity.

2010-09-02T07:07:00.000-07:00

It was all about uncontrolled spasticity.

We have seen an increase in Owen's spasticity over the course of the last several months, mostly during periods where he was very uncomfortable - with illness, fatigue, constipation, teething, and reflux from the high fat ketogenic diet. We are fortunate to have a long-standing, wonderful relationship with Dr. M., an expert in spasticity management at UW/Seattle Children's Hospital, and this spasticity had been managed pretty nicely by him over the course of the last two and a half years with Diazepam. What we realize now, is that the pneumonia and GI distress quickly and acutely escalated Owen's spasticity to a level that was both painful and severely distressing to him. We now have an intimate understanding of how this type of muscle spasm/disfunction becomes both increasingly worse and more frequent during an acute phase like this when left untreated. We also learned that spasms in the feet - due to the number and complexity of muscles, tendons, etc - are especially painful. What Owen was experiencing was similar to a prolonged, intense charlie horse, most likely in both his calves and feet.

This is the issue that we suspected was at the core of Owen's discomfort, but not having experienced this type of acute escalation, and all of this on the heels of Owen having pneumonia AND the GI issues AND being on the ketogenic diet (which has it's own pretty serious, potential risks) AND being prone to seizures, it was absolutely imperative that we rule everything else out.

Botox injections are not an option for Owen's spasticity as they are really only effective in cases where there is very specific areas of spasticity. In Owen's case, they would have a difficult time determining whether to use the treatment in his hamstrings, calves or feet. And with "generalized dystonia/spasticity," Owen will probably never be a good candidate for botox both because of the nature of its (specific) application and the fact that it needs to be repeated on a regular basis. But never say never, right? So, Owen started oral baclofen three days ago. While oral baclofen does have side effects (which is why we've held off using it), we've been assured that it is "perfectly suited" to children like Owen (keeping in mind that no pharmaceutical is perfect) and the best thing for him right now. It will decrease the spasticity in his entire body but once he's adjusted to his dose, won't sedate him. His body will be free and his mind available. That is our hope.

In addition to baclofen, Owen was fitted yesterday for foot orthotics which will keep his feet in the neutral position. We have been trying out his "old" orthotics the last two days, which are much too small for him now, to see what effect they would have. They don't decrease the spasticity, which is to be expected, they do eliminate the extension of his feet into the downward flexed position. This has completely stopped the "episodes" of pain. The new orthotics will arrive later this week.

We were seen in the orthopedics clinic at Seattle Children's Hospital yesterday for Owen's spine and hip consult. The final read of Owen's spinal x-rays, the one from Fall 2008 being compared to the one from August 2010, indicates that his curve has increased from 41 degrees to 48 degrees. A decent increase, but certainly not terrible given the circumstances. The curve is in the lumbar region of the spine (curves in different locations affect different functions and organs). Growing rod surgery is most likely in his future, but we're not willing to say, right now, that it is a definite. But, thankfully, this procedure does exist. There are some risks, including fracture of the ribs where the upper screws and hooks attach, and dislocation and breakage of the rods. We will decrease the likihood of these happening if Owen's spasticity is better managed. MUCH better managed. It is obviously a long and complex surgery and they also prefer to see kids at a healthy weight in order to prevent any issues while under anethesia and to prevent infections. Plumper kids do better. Owen is far from plump. They indicated that he also has a good deal of flexibility in the area of the curve and if we are able to maintain this, keep his curve from worsening and maintain his very healthy pulmonary state, then there is no urgency to move forward with the growing rod procedure. These are challenging things to achieve in a child with no head or trunk control. What is most at-risk for Owen are his internal organs and the effectiveness of his pulmonary system - both of which can be compromised when scoliosis becomes severe. As a child with unsupported/untreated, significant scoliosis grows larger and heavier, the weight of the unsupported child compresses the organs and lungs. So we will keep on with stretching exercises, keep on with feldenkrais, keep on with cranial-sacral appointments, and with regular warm baths (he loves these so much, and relaxes so much, that a jacuzzi tub may be in our future - not a bad thing for ANY of us) and massage, massage, massage... Owen will have orthopedic follow-up appointments every six months and, in addition to the one we have scheduled in March, he will have a CT of the spine (under general anesthesia) to determine if, at that time, there is any deformity of the vertebrae which would make growing rods a more urgent issue.

After repeated blood tests, ultrasounds, several x-rays, numerous exams, consults, ER visits, in-patient stays and countless hours on the internet, what we have learned, and what is not at all surprising to us, is that Owen is actually very healthy. Aside from needing to gain significant weight (which we've been trying to advocate for for months now - calories are being limited by the ketogenic diet), and, of course, the curve of his spine, he's a sturdy little guy. He really is amazing.

I realized when I was forced to give up Owen's blog for several months earlier this year, that I blog not only for him, but for us, for our family, friends and for all of the families that we stay connected with. I always receive such valuable input and feedback when we go through these issues that are new to us - we feel like we're not going it alone. And we're not just receiving feedback and ideas from other parents with SN kids - which is always valuable in a very specific way - but also from so many of our friends and family members. We are so grateful for all of the support we've received these last few weeks. It makes such a huge difference. I only hope that these LONG posts, and the focus on Owen's life and complexities (as a family, we do tend to be pretty private people so this isn't always a comfortable process for me), assist other families in feeling more comfortable reaching out and finding solutions.

So now. We relax for a few days. Maybe even an entire week. Time at home. I need to get my hair cut. Elliot needs his hair cut. I need a massage. Elliot starts preschool, a Parent and Child Program, at Kingston Co-Op Preschool, on September 17th. Owen starts communication and motor therapy at Cascade Children Therapy on September 21st. I'm even more excited about this program now, knowing that Owen's spasticity will be better managed and his mind more relaxed and available (fingers crossed!). He and I will be in Seattle (Mill Creek) for his "school" every Tuesday.

Elliot and I read one of our current favorite stories this morning to Owen. Owen smiled and smiled. He is feeling better and, just as quickly as life became difficult, it has become easier.

We leave you with a little Moo Ba La La La.

S/K/O/E

Letter.

2010-08-31T11:24:00.001-07:00

I just emailed a letter to the neurodevelopmental pediatrician who we adore and who we've worked closely with at Seattle Children's the last three years. This letter explains what we are certain it is that has been causing Owen's discomfort. I'm going to paste it below.

Tomorrow is our consult for Owen's hips and scoliosis and hence, our conversation with the orthopedic surgeon about the "growing rods." Will keep you posted...

Thank you - everyone - for your support via email phone, in person, via Facebook, Owen's blog... We've had offers of hugs, housing, food, hugs... It means so much. It gives us strength.

----

Dr. M.,

It seems as though, through various clinic visits, home observations, videos, ER visits (the first on August 16th, and a second one yesterday), in-patient stays, etc. over the course of the last three weeks, we have finally determined what lies at the heart of Owen’s overall discomfort AND his acute episodes of pain.

We are in absolute agreement that Owen’s spasticity has increased and needs to be better managed. This increase in tone, especially in his legs and feet, has been developing over the course of the last year and his recent pneumonia/GI discomfort, in late July, created a shift from what had been variable tone to consistent high tone (again, mostly in his legs and feet), leading to a great deal of physical distress.

We are also certain that Owen has experienced an acute stress injury in his left foot, as a result of the almost constant downward flexing of that foot during these periods of high tone and flexion. His left foot has consistently, for the last two years, been the point of initiation for his full-body extension, especially during periods of distress (when sick, when receiving his food, when tired). We have witnessed now, over the course of the last four days (after an intense episode late Friday night), that full, strong flexion of this left foot causes pain, which causes increased tone which then causes increased pain, and higher tone until he experiences a great deal of pain in that foot and has” the episode” of being “paralyzed” with pain. The “episodes” that we’ve been seeing for three weeks now. During this acute episode, his foot “locks” in this flexed position. Breaking the extension by flexing him at the knee seems to help some of the time, although there are times when he is so stiff and extended, that we cannot even flex him at the knee. If we are able to bend him at the knee and break this pattern, his left foot then quivers, slightly flexing upwards and downwards until it finally “quiets.” His loud screams shift to constant crying. His left foot, for minutes and sometimes hours following these episodes (the prolonged one he experienced on Friday night lasted 30 minutes and almost prompted me to call 911), is incredibly sensitive to the touch – especially at the arch and the lower part of his heel. You are obviously intimately aware of the fact that Owen has absolutely no control of these episodes. They are terribly distressing to him. As I’ve mentioned, these episodes are now occurring even when he is in a good mood, alert and well-rested.

I have a couple of questions that I would like to address, as soon as possible, to make Owen more comfortable and to avoid any additional injuries and pain. We do also have an appointment with you on November 10th, so will obviously follow-up on these issues, and current interventions, at that time as well. As I’ve also mentioned, we’ve been unable to get him out much of the time the last three weeks due to his discomfort and the unpredictability of these acute episodes. This has impacted Owen, and our entire family, to an enormous degree.

1. The increase in Diazepam, which we have been using in conjunction with you for two years to manage Owen’s spasticity, DOES indeed help to alleviate the acute episodes where Owen becomes stiff with pain after repeated flexing of his left foot. Unfortunately, though, it also heavily sedates him. It has been necessary to administer upwards of the additional 2 mL that you suggested last Tuesday (your suggestion was to use as little as possible, but as much as needed, of that 2 mL),the last couple of days, to avoid these acute pain/left foot extension episodes (in addition to the 5 mL used previously for spasticity management). The administration of this additional dose is oftentimes necessary even when his overall demeanor is calm and he is well-rested and happy. This is distressing to Owen, to myself, to other members of his family as he is mush of the time, happy and calm otherwise. That said, the Diazepam dose stops the flexing of his foot. Once the additional Diazepam is administered, Owen is then frustrated at being over-sedated, and in a state where he loses what clarity he does have, cannot sleep and just whines and whines in his bed. How can we calm his body without sedating him and also calming his “mind?” I ask this knowing that the two are virtually inseparable…

2. I would like to discuss the possibility of botox injections for his left foot (and possibly in both feet since his right foot is now also increasingly involved in the flexion episodes) in conjunction with fitted orthotics for his feet to decrease the muscle spasms and pain and to try to eliminate the flexion and extension through his feet and legs. My sense is that if we use orthotics exclusively, Owen will continue to flex his feet and apply pressure to the orthotic, further aggravating the pain in his foot.

Sincerely,

Stacy Marshall

Four weeks.

2010-08-26T21:10:00.001-07:00

July 23rd: Owen diagnosed with his first bout of pneumonia. He's prescribed two, heavy duty antibiotics. Kelsey and I say between ourselves, "Wow, the fact that this is the first real episode of respiratory illness, bodes well for Owen. Hopefully, the antibiotics will knock it out quickly." We listen to him gurgle, crack and cough the next several nights.

July 28th: Severe GI distress and diarrhea from the antibiotics. SEVERE. This is also the start of severe sleep deprivation for Owen and his parents. Elliot sleeps perfectly. Twelve hours a night. Uninterrupted.

Late July: Owen begins having spells where he gets really fussy, arches, cries, goes rigid, gets red in the face and then screams and screams with a look of terror on his face. He becomes paralyzed with pain. Is it pain? Fear? This happens most frequently when he is upright in his stroller or in his car seat. So. We stop taking him anywhere unless we absolutely have to. We take video of the episodes and start looking for answers. Elliot has taken to running up to Owen, when he hears him crying out, saying "Owen, Owen," and then "Pat, pat." He pats him gently on the chest hoping that this will soothe him.

Early August: We are giving Owen probiotics, soaking him in epsom salt baths, trying to get him to his cranial-sacral and feldenkrais appointments. But inevitably, while in the car, he has a spell. I have to pull the car over, take him out of his car seat and try to soothe him. What ARE these episodes and why can't we think our way out of this one?

August 16th: Enough of this. Off to the ER. Pack up Owen. To Seattle Children's Hospital. Pack up Elliot. To Oma and Grandpa's house. X-rays, blood draws, oxygen saturation monitors. "We can't find anything wrong. If the episodes get worse or more frequent, come back." "No. You don't understand. I can't get out of the house with him. Something is wrong. He's horribly uncomfortable." They agree to admit Owen. We stay two days.

August 17th: Day of discharge. Owen is constipated. So much so that the attending physician, during rounds, says to the team while showing everyone the films of Owen's little abdomen, "Folks, that's a lot of poop." He also has eight teeth coming in and when he has these "episodes," clenches down on his erupting molars and surrounding tissue so much that they are a bloody mess. He opens his mouth and looks like a prizefighter. Miralax for the constipation. Tylenol for the teething. Home.

August 18th: At home the episodes persist. No sleep for anyone except Elliot. And Dutch. Lucky dog.

August 20th: Make calls and send emails to specialists' offices at Seattle Children's. "Owen is trying to tell us that something is wrong. We need help figuring out what is going on. Will you help us?" One is kind enough to see us the following week, even though he's booked out through 2010. Thank you, Dr. M.

August 24th: Dr. M. says, after viewing Owen and looking at the video. "We don't want to mask this with medication. We need to find out why he is in pain" Thank you. "Owen is trying to tell us that something is wrong." Thank you. More labs ordered. More blood drawn. Another abdominal x-ray. Abdominal ultrasound ordered.

August 26th: At Seattle Children's Hospital again, all day, except for an 8:30 neurology follow-up at Swedish. Owen and I have crashed at the Silver Cloud at Broadway and Madison Wednesday night (eight down pillows PER bed!) since trying to do an appointment while overnighting at home would have required a 4:00 a.m. wake-up call from Dutch. Nope. Neurology visit goes well. Owen will begin the year-long wean off of the ketogenic diet in mid-September. IF we can stabilize him. Owen has an abdomnal ultrasound to look for problems with kidneys, pancreas, gallbladder... At his orthopedic appointment, after a review of the spine and hip x-rays, we learn that his scoliosis is bad. Really bad. Fifty-five degree curve. They recommend that a "growing rod" be attached to his spine. A metal rod that is surgically inserted and screwed in at the top and the bottom of the spine. On the ferry, on our way home, Owen has another episode.

I say, "enough already!" Geesh.

Happy Birthday to you...

2010-07-13T00:01:00.000-07:00

Wow. Three years...

Joy. Heartache. Wonder. Courage. Hurt. Fear. Amazement. Awe. Uncertainty. Doubt. Growth. Change. Adoration. Love. Reflection.

Being a parent. Universal, yet each experience, totally unique.

Happy Birthday, sweet Owen.

Homemade cupcakes c/o Grandma Janet.

Elliot and I giving Owen a long, birthday-eve massage.

Alba Botanica Hawaiian Coconut Milk Body Cream. Nothing but the best... Do you think he likes it?

Catching the cool breezes on vacation last week on the Oregon Coast (Thank you, Great Aunt Connie!).

With Dad and Elliot at Girabaldi Fisherman's Terminal.

Our work at home.

2010-06-04T13:32:00.000-07:00

Thank you all for the wonderful feedback from the last post. I hope that those of you involved with feldenkrais (or other interventions that work for your child), will continue to share information and valuable feedback so that these posts can serve as a resource for other parents.

I also wanted to make sure to mention that feldenkrais is very much for adults as well and can be beneficial for individuals with Multiple Sclerosis, for those with Fibromyalgia, Stroke and Parkinson's and also for improving balance and mobility in older adults.

Some of you asked to see what exactly we are doing with Owen, so as time allows (as I either juggle the video camera OR I have someone else to help hold it), I will post short clips of some of the work we're doing at home. This will be a good motivator for me as well so that I can document Owen's progress.

Here are a few clips from today...

In these first two, I am mimicing the play and exploration that babies do with their hips, legs and feet. I am gently grasping Owen's ankles and feet, and slowly lifting his hips off of the ground while encouraging his hands to touch the opposite knee as his legs come towards him. I try to work in as much cross-lateral movement as possible. (If you imagine a line going down the middle of your body top to bottom, anything that crosses over that midline can stimulate all four lobes of the brain. Repetitive cross lateral movement, such as crawling, also strengthens and integrates the left and right brain.) I am also crossing one foot over the other knee and encouraging him to bring the lower leg up so that it lifts both legs off the ground. Owen was doing this on his own in the last segment of the video that I posted on June 2nd - which is why you hear me cheering him on at the end.

One of the "basics" that we've learned from both Ingrid and Marsha is the importance of "planting" Owen's feet whenever possible, to provide the opportunity for this feedback through his feet, legs, hips and spine.

Here is an easy exercise that we do multiple times everyday:

This last one is a nice way to keep the spine limber and provide sensory input to each side of the spine and rib cage. The key is slow, gentle articulation of the spine, alternating sides and moving up and down the rib cage. We've been doing this exercise for well over a year - you can tell how much Owen loves it. (I apologize for the noticeable heavy breathing in this one and the first one - I was literally holding the video camera in my mouth for some of these. Thank goodness for the iPod Nano.)

Feldenkrais, feldenkrais, feldenkrais!

2010-06-01T12:30:00.001-07:00

Owen is currently working with two feldenkrais pracitioners, one on Bainbridge Island and the other based out of Port Townsend (about 45 minutes away from our home in Indianola) and has been actively participating in this "somatic education" since October of 2009. Our goal is to eventually have him in feldenkrais appointments twice a week, perhaps sometime this Fall. For the time being, we are at appointments just once a week due to other commitments both boys have during our busy weekdays. We also work with Owen at home each day - anywhere from 15 minutes to an hour, once or twice a day - as his mood allows.

(Important note about feldenkrais: It is all about allowing the participant to lead the way. The movements are not forced and should be enjoyed. For most children, sessions are kept short, from 15 to 45 minutes so that the child does not become overly tired or frustrated. Multiple, short, daily sessions are better and more productive than longer sessions, thus the importance of caregiver or family involvement at home.)

Currently, Owen sees Marsha Novak once a week on the island and Ingrid Musson once a month when she travels to the island from Port Townsend to see clients on Bainbridge Island and the Kitsap Peninsula. Our introduction to feldenkrais was with Ingrid in Port Townsend. She is really the person who laid the groundwork and set the path for Owen and his success with feldenkrais. She has an incredibly sensitive touch and deep understanding of infants and children with movement/motor issues.

We learned about Marsha and her recent graduation from the Anat Baniel Method training course through my chiroprator, Mari Ellingsen, who is also the very gifted woman who provides Owen with his cranial-sacral sessions (also on Bainbridge Island). I have been seeing Mari for almost ten years and when she mentioned her friend and cohort, Marsha Novak, who was interested in working with Owen, I was both excited and curious as Bainbridge Island is closer to home and closer to Owen and Elliot's grandparents, Leslie and Herb, who now care for Elliot each Thursday when I take Owen to see Marsha.

Both women, Ingrid and Marsha, are incredibly talented, compassionate and completely connected with Owen during his sessions. Each brings their own experience, and gifts, to their practice. Ingrid worked in a birth to three program for ten years, as an early intervention physical therapist. This experience with babies/children brings to her feldenkrais work, a core understanding of the necessary sequential milestones and associated developmental movements. And according to her resume, in the last 29 years she has "...accumulated over 2000+ hours of continuing education, which include Feldenkrais, visceral manipulation, cranio-sacral therapy, Mulligan’s mobilizations, orthobionomy, soft tissue release, neuro-structural integration, Total Motion Release and therapeutic healing touch." She has worked as a physical therapist for almost 30 years and as a trained feldenkrais practitioner for over 15 years.

Marsha has been practicing physical therapy since 1985, an impressive twenty-five years, and is well-known and respected on Bainbridge Island as both a physical therapist and feldenkrais practitioner. She became a Guild Certified Feldenkrais Practitioner in 2003. She recently completed the Anat Baniel training and is a certified ABM Practitioner. Her passion for feldenkrais and her drive to assist children like Owen in achieving milestones and to help make possible what others might believe to be impossible, is evident in each session we have with her.

I've included a couple of recent shots of Owen working with Marsha. (Note he is looking to the left in the first photo and laying on his right in the second - I will discuss the significance of these positions later in this post.):

Although currently, feldenkrais is not a "conventional" intervention for children like Owen, neither is it one without its scientific, validated, measurable merits. It has the ability to create significant, almost immediate, percievable changes in the way that people move and feel, including children with severe motor impairments such as Owen. What is key for Owen is that in addition to increasing overall PURPOSEFUL movements, feldenkrais helps to transform existing, random and mostly uncontrolled movements into productive ones.

What Owen was NOT doing as of October 2009/What he IS doing since feldenkrais:

* Turning his head consistently to the left, towards light, sound, stimulus. For most of the first two years of his life, Owen NEVER turned his head to the right.

* When lying on his back, lifting his hips up from the floor/bending his legs in the "frog" position and moving each independent of the other. Prior to feldenkrais, he was almost always straight-legged and stiff.

* Opening up both hands consistenly - "scanning" with his right hand. His fists remained in tight balls for the first two years of his life. He is now able to reach and touch a switch with BOTH hands.

* Rolling over from his right side, the side that prior to feldenkrais, initiated the extensor pattern, and one so extreme that he could not break out of it.

* Comfortably spending time on his stomach and lifting his head up into midline positions. This is THE skill that Owen needs in order to develop trunk and head control. By strengthening the muscles that run along the spine (Erector Spinae), he will develop the strength he needs to hold his trunk and his head up (trunk control comes first, then head control). The key here is that feldenkrais forces the brain to recognize and pay attention to the less dominant/less active side or parts of the body which in turn creates new pathways for this new, learned behavior. Right now, Owen's muscles on the right side of his spine are so overactive (due to cerebral palsy, spasticity, dystonia) that they override the left side's ability to work properly. This has caused severe scoliosis AND made it difficult for him to gain enough muscle control to support his trunk. Since starting feldenkrais sessions, Owen has become not only tolerant of, but very agreeable to, being in the prone position (stomach). He is increasingly bringing his head up and, on occasion, up and into a midline position. There is now a new pathway in the brain to receive the information coming in from a different part of the body.

These developments may be hard for many to contextualize or fully appreciate, especially for those unfamiliar with children who have significant, global developmental delays and severe motor impairments. Most children (typically developing children) put the pieces of the puzzle together so rapidly that one often doesn't even notice the leap from one milestone to another - it is almost unperceivable. But if you slow the shutter speed down, you realize that there are shifts of the body so slight and movements so small, that they are almost lost. These threads are vitally important to development and achievement of milestones and this is what our work with feldenkrais is all about - helping Owen to feel these, learn these and put them all together so that he is enabled to make his body work for him.

A valid argument might be that these were developments that would have occurred, regardless of therapy/intervention. But... Owen had made little, if any, progress with physical therapy sessions and the development and timing of these new patterns and movements were so perceptible and so intimately tied to his feldenkrais sessions that is was obvious that this was the catalyst for these changes. In fact, watching Owen during these feldenkrais sessions is a treat. He smiles, focuses, perceives the movements... You can see the integration happening at both a physical and neurological level. A significant component to the feldenkrais method is that the participant/child be able to allow the movements and that these movements be "guided" by the practitioner. Nothing is forced. Feldenkrais works with the child's unique movements and within a framework of the natural developmental steps, to create purposeful, constructive movements. It all makes so much sense...

Here is an example of how this works for Owen:

Owen never tolerated laying on his right side prior to feldenkrais (you'll notice in the video and in the still photo from above, however, that he is happily laying on his right side). This is due to the fact that it is/was a major trigger for his extensor pattern. Prior to feldenkrais, if he was on his right side, he would receive signals that would cause him to arch - fiercely. He would extend his left arm, tilt his head far backwards. His left leg would straighten out and become stiff - unbendable. He would be STUCK in this position and become very agitated. Through the use of feldenkrais movements, Ingrid and Marsha have helped Owen feel his body and understand that he can bring himself out of this pattern. They have allowed him to FEEL the series of movements that bring him onto his right side and those that can return him to a back-lying position. Although it is not yet consistent, Owen can now lay on his right side without being sent into this extensor pattern. As you will see from our video, he has even been able to learn how to work with this pattern and to use it constructively - to use it to learn how to roll over.

If you want to read and understand more about feldenkrais here is a great piece written on the subject (and it mentions my friends at the Avalon School!), and another at the Anat Baniel web site.

A couple of excellent, detailed videos on the subject:

Video 1

Video 2

And here is OUR video. This video is less about the feldenkrais techniques that we work on at home and more about Owen and his demeanor throughout the time we spend doing this work. I was holding the video camera, so for the majority of the time it was impossible for me to film the movements and work with Owen at the same time. This video does illustrate how receptive Owen is to feldenkrais and how it very much engages all aspects of his development - language, visual perception, spatial abilities. (Note that this video was taken during the floor exercises that we were doing (feldenkrais) yet Owen does spend a good deal of time in his chair and is learning to use a communication switch as well. More about that later...)

I could write until midnight on this subject, but I have sleep to find and dreams to dream. If anyone has any feedback or wants to know more, or talk more, or share your own thoughts on or experiences with feldenkrais, please email me or leave a comment. It won't be the last time I blog on the subject.

And speaking of physical therapy, I had to toss in a shot of Elliot taking a few lessons from Grandma Mimi on the subject. It is important to exercise and do your daily PT assignments - even at age 90!

Oh, and I couldn't resist including a recent shot of the boys...

Cheers!

A long overdue update.

2010-04-01T17:51:00.001-07:00

Owen is fully mended from the nasty stomach bug in mid-March which resulted in a two day PICU stay at Miller Children's Hospital in Long Beach, CA. It was a pretty scary episode - probably one of the scariest we've ever had. He caught the bug on the drive down to Hermosa Beach where my siblings and I had rented a house to celebrate my mother's 60th birthday (she drove down with the boys and I since Owen cannot fly - Kelsey and other family members flew). Elliot caught the bug two days later. Both boys had high fevers and Owen vomited fiercely - to the point of vomiting blood and becoming severely dehydrated within a short span of time. Needless to say, since returning home he has been doing fantastic - actually, better than he has in a long time, perhaps ever. This is likely due to the medication changes we've made recently and the fact that he's not had partial seizures in 2.5 weeks (we discovered what was causing these and as soon as we made the change, on the 16th of March, they disappeared). For those of you who didn't know, Owen's life (and ours) has been wrecked with partial seizures since late December. Some of these clusters of seizures were followed by periods of "passing out" for up to 15-20 minutes. Crazy, scary stuff. I'm happy to share what we learned about the medication Clonidine if anyone is interested.

Our life has improved tremendously since the abatement of the seizures. We did have a pretty demanding, busy week this week, with various follow-up appointments, blood draws at Seattle Children's Hospital (two, on two separate days), etc and are looking forward to getting into more of a - carefully orchestrated - routine starting next week. Owen is back to regular feldenkrais appointments - THE thing that has really helped him with his range of motion, turning his head to the left side, etc. He has these on Thursdays and had a wonderful, productive appointment today. It is obvious that when he is calm and feels good, he can absorb the sessions and integrate the movements. He was recently given a very cool, supportive yet stretchy, vest by his friend, Victor, in Seattle (see photos) whose parents have become close friends of ours. Thank you, Laura, Gary and Vic! This has helped him so much with the floor work and feldenkrais movement exercises we do and he's more able to sit in his chairs without needing a harness to keep him straight and supported. We are exploring options for him for school (1-2 days, one of which I will attend with him as a volunteer) in the fall and have an exciting possibility that we'll know more about in June.

Elliot is full of energy, knows quite a bit of sign language and uses it regularly (milk, eat, wind, rain, flower, tree, airplane, bath, etc) and now RUNS. He also loves to dust the floors (see attached photo). He recently began giving hugs to everyone, including his stuffed animal friends, and loves to give kisses to Owen (see attached photo). The stuff that makes your heart melt... He's precocious, independent, loving and totally fun. He and I will be attending a Parent-Child preschool program at the Madrona School on Bainbridge Island (a Waldorf school) on Fridays starting in September for the 2010 - 2011 school year. There are only 8 students accepted into each class and the Madrona School, located on Bainbridge Island, has an excellent reputation. Elliot and I will also soon, for the summer, be spending Tuesdays in Seattle while Owen stays with his Grandma and Grandpa Chalupa. I'm looking forward to reconnecting with close friends and getting back into a city that I love. Elliot will enjoy going to the zoo, aquarium, Children's Museum, spending time in the International District, at the Pike Market. He thrives off of new situations and is extremely social so these outings will be great for him (for BOTH of us). He and I recently went to the Point Defiance Zoo for a belated birthday celebration for him since Owen was having seizures the entire day of Elliot's birthday (February 4th) and required most of my attention. (I've included a photo of Elliot watching the sea otters.) Elliot and I attend Kindermusik classes on the island on Wednesdays - he's a born musician and especially loves the drums. We will continue this indefinitely as he really loves the class and the social interaction.

Kelsey will be taking Fridays off mid-April through mid-August and he, Elliot and I plan to hike, camp, backpack, bike - most of which Owen cannot do since he requires predictability and a regular nap schedule. Owen will stay with his his Grandma and Grandpa Chalupa on this day as well. We've been unable to do these things for almost three years and are totally giddy to get back out into the woods (can you hear me laugh with joy at the simple thought of a day hike!). We do hope to get Owen out in the Burley trailer, along with his brother, behind our bikes, a few times this summer. Janet (a.k.a. "GrandNanny") has been with us four days a week and has agreed to go to three days a week in exchange for watching Owen over a few weekends this summer. We will be going to Portland and to Vancouver, B.C. for two, three day weekends. We hope to also do a couple of single overnight camping trips in the Olympics. Oma (Leslie) and Grandpa Hethcote (Herb) will be taking care of the boys on Thursdays, spending time with Elliot in the morning while Owen and I are at his feldenkrais appointment and watching both boys in the afternoon while I have a bit of "me" time. Monday is my day with the boys, alone. We stay in our pajamas late, read books, make good food, take long baths, garden and have a grand 'ol time. It is great for me to have this time with them and to give them my focused attention. I don't take it for granted and am very protective of this day of ours.

The parting shot... Elliot on Lanikai Beach on Oahu. A long overdue vacation we took in January.

We hope this update finds all of you well, happy and as thrilled as we are for the warmer weather and longer days.

With love from our little corner of Indianola,

S/K/O/E

A little piece.

2009-11-13T00:18:00.000-08:00

I've been working on and off the last two weeks on a little piece that incorporates some of the video clips that I've taken recently of the boys. I just finished my friend Pam's slide show a month or so ago, a photo journey of India, Nepal, Laos, Vietnam, Cambodia, Poland and Guatemala, using images she took on her 10 month trip, and was feeling the need to put together one of my own while I was still pleasantly warm from the whole experience.

The video was taken on Owen's iPod Nano (5th generation) - the quality is quite remarkable given that the iPod is about the size of a credit card.

Pam is a lovely woman who lives as she travels - intentionally, with thoughtfulness, vigor and compassion. She possesses a zeal for bringing people together that is truly remarkable. She has almost two decades of experience in public relations and marketing (for a major PR firm in Seattle) and is currently developing and running tours in both India and Costa Rica. She's also skilled in the realm of social media and, most recently, has decided to pursue (another) career as a life coach. Just drop me a note if you find yourself saying, "Hey, she's got what I need!"

Happy Thanksgiving!

Cuts.

2009-11-02T15:26:00.000-08:00

It is extremely difficult to give Owen a haircut. He makes rapid, unpredictable movements, often arching or kicking his legs out or turning his head so fast to one side that it is almost impossible not to cut an ear off. So I don't cut it very often. Besides, he's got fabulous locks, silky and reddish-golden, and I really hate to cut them. But I did finally give him a haircut today as it had been several months and well, he's going to "school" now on Wednesdays so I thought I'd best spiffy him up a bit. It only took me an hour. One hour. What is totally heart-warming, heart-MELTING, about this photo is that he was looking right at me. Straight on.

I have also cut back on the amount of time I spend blogging about Owen. This is partly because we've just come through an exceptionally rough period and I've just not had the time. Now that we're out of this rough period and both boys are happy, (Owen smiling, eating and "laughing," and Elliot crawling, talking and almost walking), I so desperately want to spend every last bit of time with them - rolling around on the floor, laughing, being silly - instead of spending it with my nose in my keyboard. Time goes so fast and right now, I am having so much fun being a mother. It's totally dreamy.

Lastly, I'm not posting as much because, well, it's kind of nice to be a little more private and not blog about our every up and down and doctor's appointment, new medication and new intervention. I had to laugh, knowingly, at Elizabeth's post a few weeks ago about "compassion fatigue." Sometimes I find that I tire just telling everyone about it all, the minutia, the things that probably set us apart from others, knowing at the same time that EVERYONE has their ups and downs and that we're all in this together, paddling our boats through the sunshine and the storms.

So if you don't hear from us for weeks or months, please know we're okay. We're just being our "normal" selves. You can always connect with us by email (srm@tiny-giant.com) or through Facebook. We'd love to connect about food, films, kids, coffee, the changing of the seasons.... or just hear how YOU'RE doing.

Happy Belated Halloween!

Where oh where have we been?

2009-10-05T16:36:00.001-07:00

So I have another post that I've been working on the last several days that relates to Infantile Spasms Awareness Week, which is October 11th through the 17th. But I just had to jump in and do a quick post today while the boys are sleeping.

We've been busy the last six weeks, which have included:

1. Owen going on Topamax.
2. Owen going off Topamax two weeks later.
3. Owen starting a wean off of Vigabatrin.
4. Owen finishing his last dose of Vigabatrin one month later. Yay!
5. Connecting with one of the co-founders of an amazing school in the Bay Area, The Avalon Academy, to learn about their education model.
6. Connecting with several moms via the blogosphere regarding schools, AAC (assistive and augmentative communication) devices, music therapy, etc.
7. Starting the process of exploring our options for school/education for Owen when he leaves the birth to 3 program in a mere nine months.
8. Writing a letter to Owen's neurologist to request that we start to wean him off of the ketogenic diet.
9. Taking Owen to an amazing naturopath in Seattle.
10. Connecting with a fabulous family in Seattle who have a son, Victor, who is very, very similar to Owen.
11. Obtaining a fantastic, life-changing, new piece of equipment, a Thevo Therapy Chair, from our friends at Exomotion.
12. Elliot getting the flu and running a temp and vomiting for six days.
13. Writing a letter to a new neurologist in Woodinville, asking him to take Owen on as a patient even though he has a two year waiting list.
14. Working with Owen's speech therapist to get him hooked up with switches so that he can learn cause and effect and, via the switch, ask for things like, "more water."
15. Connecting Owen with a feldenkrais practitioner in Port Townsend who has worked with the pediatric population for years. She's amazing!
16. Starting Owen on daily, small portions of lentils, carrot juice, cod liver oil (through tube), blueberries and vegetable broth - all except the oil, he loves and takes orally!

To summarize...

Vigabatrin, in the 16+ months Owen was on it, did nothing to control his seizures. He is AMAZING without it! He's alert, present, smiling, holding his hands in front of him, looking from side-to-side, scanning spaces, tracking. O is now only one ONE seizure medication! We will be trying a slight increase in this one, Keppra, to see if we can eliminate the remaining seizures. But so far, no new or increased seizure activity now that he's off of Vigabatrin. He IS a new little boy, however.

The Ketogenic Diet has been a life-saver and yet we are ready to try a wean. We were never interested in using it long-term. Owen has become increasingly intolerant of the high fat diet and has learned to retch and vomit up his formula. The diet is totally lacking in brain builders and in foods that heal and help him grow. He's weighed 20 pounds for the last nine months. Sure, we are anxious about the seizures coming back, but we always have the option of putting him back on it. He LOVES food, especially the fresh carrot juice, and handles it like a superstar. As a mother, it feels so amazingly good to start giving him foods that nurture his body and soul.

The Leemans! Victor is four and is so much like Owen. We connected with these fabulous folks through BL at Exomotion a few weeks back and just had dinner with them at their house in the Sunset Hill neighborhood of Seattle this weekend. Laura has been a shining star and has shared with me so many resources, including the name of the naturopath that Victor sees... Thank you, Laura!

Miroslawa Witalis is Polish and practiced as a physician in Poland and Switzerland before coming to the States where she received her ND at Bastyr. Her approach is rooted in science and her knowledge of neuroscience, neurophysics, biology, chemistry and physiology is incredible. We are seeing her to have her assist with getting Owen on foods that will help him heal and develop, to help with sleep issues and issues relating to bodily functions. More on this at some other point, but I've been searching for a naturopath who understands Owen, understand his history and who approaches him with sensitivity and thoughtfulness. I've finally found her!

Owen will transfer from the Birth to Three Program next July and his education will then be through the North Kitsap School District. We have so many things to think about relating to this... For another year or two do we work with private therapists (out-of-pocket expense) or have Owen go to a public developmental preschool? If the latter, here or somewhere else (which would probably mean a move for us)? What are the teacher-to-student ratios? Do they have the kinds of therapies and equipment that we want and that Owen needs? Many, many issues to consider.

We love Exomotion! We first connected with BL and Dutch, the owners, last year when we had Owen fitted for a Jazz EASyS stroller. We needed to have the stroller adjusted recently, so much so that I took it to them in South Seattle. This is where I (and Owen) fell in love with the Thevo Therapy Chair. They refer to the chair as "dynamic seating" as the back of the chair literally moves with the child. There are several "ribs" along the spine of the chair and along these ribs are dozens of small, articulating pads (think gecko toes) that move with the child. Instead of a rigid seat, which Owen ALWAYS fights, this seat provides the child with sensory input, even when they are sitting. Owen's response has been incredible. He no longer arches and fights when we put him into this chair, he is alert, awake, present and the hi-lo base allows him to be at floor level, playing with us or his brother or at the dining room table while we eat or at the kitchen counter as we cook. It has changed the way he perceives his world AND how others perceive him. I've included a number of photos below from our weekend stay with our dear friends (and family), Kevin, Kathryn and Lily. Owen was so accessible to Lily and to watch her interact with him and PLAY with him, read him stories and to watch HIM respond to her was so incredible. Thank you, Lily!

The other things on my list... well, I think they're self-explanatory. We've got so much going on right now and it all feels so good.

Coming clean.

2009-09-09T21:41:00.000-07:00

We are coming off of fourteen really rough days, which just ended this last weekend. Saturday, to be exact. As Kelsey said, it reminded us of the first few months of Owen's life, an uncomfortable, unpredictable, unwanted blur of sleeplessness, fear, crying, crying, crying.

We decided a few weeks ago, before leaving for vacation, that once we returned we were going to try to eliminate the last remaining seizures that Owen has, a "mere" 6-10 as he falls asleep for naps and at bedtime. Just to be clear, that's upwards of 30 seizures a day. This, of course, down from the 120+ a day that he was having before he began the ketogenic diet, a year ago last month. So, in conjunction with his neurologist, we decided to try Topamax, one of the few we've not yet plugged into his little system. The reason behind this renewed enthusiasm for pharmaceuticals - we are desperately trying to get a handle on his discomfort. Read "fussiness." Unpredictable fussiness. Every day.

I'm a firm believer in that one's perspective shapes one's reality. So typically, when people ask how things are going, my response is usually very positive. Great, good, very well... Because, well, they are. I have an amazing family. Two adorable boys who own my heart. A husband who is my soul mate. A business that is thriving and that reflects my values. But the last two weeks, I've been telling the other side of the story, because, well, I am exhausted. S o m e t i m e s i t i s r e a l l y , r e a l l y h a r d. I wonder if people are put-off or if they silently remind themselves to steer clear or, if they feel like one of my close friends did recently when I told her how difficult life with Owen can be. She felt relief. She admitted that she knew, suspected, and that she felt relieved that I had actually come clean.

Owen's irritability stems from his lack of sleep, his seizures and his GI issues. We can't seem to get a handle on any of these, try as we might. We've had well-meaning individuals suggest natural remedies for irritability, for seizures, for spasticity, for sleep, for his tummy. Just to set the record straight... THERE ARE NONE. At least none that are accessible to us right now. Owen has a seizure disorder and his brain is not like most other brains and he is on the keotgenic diet and we can't give him supplements, oils or herbal remedies. There is no tincture that will make his body stop jerking as he falls asleep. I don't mean to sound callous, but that's our reality.

So Topamax didn't work. Owen cried and cried and cried during the day and screamed at night. We carried him around like a wooden plank, his little arms and legs stiff and stretched out, his fists clenched, the spasticity taking complete control of his body. So we discontinued it on Saturday. A few hours later, he couldn't stop smiling.

I hope he knows that we are doing the best we can. The best we know how.

Chosen.

2009-07-13T09:21:00.000-07:00

I recently came across this piece online:

"Did you ever wonder how a child ended up with a specific mother? According to Sufi mysticism, the soul of the child looks down at the world and sees every soul that resides in every woman. When he finds the one that will be able to help him fulfill his life's purpose, he makes his choice. The relationship between the mother and child is no accident."

In the last two years, we've been told by numerous people that Owen "chose" us as parents. This notion, regardless of my belief in a literal translation of it, gives me comfort. His little family loves him so much.

Happy 2nd Birthday, Owen.

Good stuff.

2009-07-09T20:03:00.000-07:00

I've been dreading this day for weeks, since the very day I scheduled the appointment, in fact. Owen had his first EEG in 14 months today, at Swedish Medical Center in Seattle. The last one was in May 2008 when we realized, after two LONG series of injections of ACTH into his little legs each morning, for weeks on end, that his infantile spasms had returned for the third time. That last time, last May, we were in the hospital for a day, for a full 24 hour video EEG. I'd say that was the longest 24 hours of my life, but since Owen's birth, I've had a few of those experiences.

He didn't fall asleep during the hour-long monitoring today, so they weren't able to record the half dozen or so spasms we know he still has as he falls asleep. I had to laugh when I heard the reminder message they left on my phone the day before, suggesting we keep him from sleeping at least four hours prior to the EEG so that he would be tired and so they could record the brain activity during the transition to sleep. If I only had that much control over when Owen does and does not sleep. Ha.

I cried this morning. I didn't let anyone see this except the owner of the crepe shop in Kingston. We got in line for the ferry, the boys had just fallen asleep, and I told Kelsey I needed to get some coffee. I walked into the crepe shop and I just couldn't hold back the tears. I was weeping as she handed me my change and I mumbled something about a birth injury and seizures and an EGG today. She said, "It is so hard to be a mother." Yes.

So I got my double Americano and walked and cried and walked and cried until I saw that the ferry was about to dock. I got back into the car and felt both a sense of relief, feeling as though I could make it through the day, and and urgency to grab control of the car and steer us home, away from hospitals and wires and the smell of that sticky stuff they use to ultimately make Owen look like Frankenstein.

The EEG stirs up so many difficult memories of Owen when he was just a few days old, electrodes all over his head, his eyes shut, Kelsey and I wondering if he was ever going to "wake up." The first EEG, when Owen was just a little over 24 hours old, showed very little brain activity. I told the neurologist to give it to me straight. He said is didn't look good - at all. Then Owen had a second EEG a few days later which showed a very small amount of improvement, but still looked bleak. He had a third EEG a few days later. Same thing. The level of anxiety, the magnitude of stress, having to watch the test, wait for the results, see the red marks and adhesive where they attached the leads... it was almost too much. You think you can't go through another one and then you do, because what choice do you have? I was always so eager to wash his hair and get all that horrible, ugly, sticky, smelly, invasive stuff off of my baby. He was, after all, just a baby.

Today's EEG went just fine. In fact, it went great. It revealed no new seizure activity. Owen was a champ, even giving them a few flinches at the waist, a few arches, a little lift of the legs, body movements that have been suspect by some. "Oh, there was a jerk," the tech would say. "Mmmm, he's just trying to get up a bubble," I would say. "He just had his milk and the Ketocal is so hard to digest. It just sits in his stomach and makes gas bubbles." "He just raised his legs," they said. "It's not a seizure. He does that when... Never mind. I just know. I'm his mom." They laughed. Owen's neurologist told us in our meeting with him a couple of hours later that Owen's EEG looked good. No seizures. He said that the movements, flinching, etc that the tech noted were not seizures. "I know," I said.

Happy Early Birthday, Owen. May you be blessed with more of the "good stuff" in your third year of life.

Sharing...

2009-06-17T18:23:00.000-07:00

From the NY Times blog, "Motherlode," that I follow:

Clouds on a Child's Future.

Recent photos of the boys.

Hope everyone is enjoying the summer. Ours finally arrived in late May and today, at least in Indianola, we broke a record... 29 days with no rain. Thankfully, for the garden, there are sprinklers.

Reflections of a Rainbow in His Eyes

2009-05-18T14:01:00.000-07:00

We recently purchased a colorful, 8 feet in diameter, beach umbrella for Owen. Our yard gets so hot in the summer, we wanted a shady place for him so that he can enjoy the sights, sounds and smells along with us. To make his experience even more enjoyable and beautiful, we wanted something that was bright and eye-catching. He and I have spent a good deal of peaceful afternoons lately under this rainbow umbrella.

Peace is good and finally came to me a few weeks ago. I know it will not be the last time that I take a few steps back (or down) only to once again work my way back up again. The first few weeks after Elliot's arrival were difficult. Not in that we now have two babes at home as Elliot, compared with our experience with Owen, is easy. Not because we weren't happy because, truly, we've not been this happy in almost two years. Not because we were sleep deprived as Elliot has always been a good sleeper and our experience with Owen has trained us - if we get 5-6 hours of sleep, we consider ourselves extremely lucky.

These weeks were difficult because we finally had a normal experience and it has been so easy and so good and so happy and so full of joy and we wondered, "Why couldn't we have had this with Owen?" It is different, seeing other people's babies and understanding that yours is different. But when Elliot came along, it put a very intimate magnifying lens on the experience we had with Owen. No throwing up, no constant fussing, easy to bond with, nursing so naturally. No intensive care units, no tubes, no monitors, no seizures (which had just started when Owen was three months old, Elliot's current age). Elliot now makes eye contact with us, smiles and is giggling, splashing in the tub, clasping his hands together, playing with toys, "talking." Owen smiles, but the rest of these behaviors, we may never get to see.

So we mourned the loss - again. The loss of a normal experience with Owen. The loss of certain functions he will never have. The loss of never hearing him say, "Mommy," or "Daddy," or having him reach for my hand when he needs me so that I can help guide him. It is really hard and it really, really hurts.

But you pick yourself back up, and you are stronger than you were before and once again, your perspective has changed. I am even closer to Owen than I was before Elliot was born - both Kesley and I feel this way. When Owen looks directly at Elliot and smiles, it is beautiful - in the purest sense of the word. When Elliot smiles at Owen, we know that there is now one more person in this world who will really know and love Owen. It is hard to explain the joy this brings us. And now that there are "the two brothers," I cherish my time alone with Owen more than ever.

So in honor of Owen and our peaceful times under the umbrella, I wrote a poem.

Reflections of a Rainbow in His Eyes

Do you see what I see?

I see a boy, who has seen the halls of the neonatal intensive care unit, the walls of children's hospitals, the ceiling of the surgery room...
yet I see a boy who stills knows innocence.

I see a boy who struggles to communicate with sounds and his body and the harder he tries, the harder the language is to master, the signals always reaching a roadblock...
yet I see a boy whose voice is clear and whose language I understand.

I see a boy who stiffens and arches and is tormented by the curve of his spine, the tightness of his hands and the limpness in his neck...
yet I see a boy whose body moves in water with the grace and fluidity of a dancer.

I see a boy who has a hole in his stomach, who recognizes the sound of the food pump and who cries with resistance to being fed...
yet I see a boy who eats up smiles and laughter and music and hugs.

I see a boy who cries because he is confused and frustrated and angry and he hurts...
yet I see a boy who smiles when he feels joy.

I see a boy who sees unlike most of us, in fragments and pieces and in shifting patterns...
yet I see a boy who sees rainbows and I see those reflected in his eyes.

Reaching for the stars

2009-04-28T21:43:00.000-07:00

Jaime, I hope you don't mind if I share this also...

To You, My Sisters

by Maureen K. Higgins -

Many of you I have never even met face to face, but
I've searched you out every day. I've looked for you
on the Internet, on playgrounds and in grocery stores.

I've become an expert at identifying you. You are well
worn. You are stronger than you ever wanted to be.
Your words ring experience, experience you culled with
your very heart and soul. You are compassionate beyond
the expectations of this world. You are my "sisters."

Yes, you and I, my friend, are sisters in a sorority.
A very elite sorority. We are special. Just like any
other sorority, we were chosen to be members. Some of
us were invited to join immediately, some not for
months or even years. Some of us even tried to refuse
membership, but to no avail.

We were initiated in neurologist's offices and NICUs, in obstetrician's offices, in emergency rooms,
and during ultrasounds. We were initiated with somber
telephone calls, consultations, evaluations, blood
tests, x-rays, MRI films, and heart surgeries.

All of us have one thing in common. One day things
were fine. We were pregnant, or we had just given
birth, or we were nursing our newborn, or we were
playing with our toddler. Yes, one minute everything
was fine. Then, whether it happened in an instant, as
it often does, or over the course of a few weeks or
months, our entire lives changed. Something wasn't
quite right. Then we found ourselves mothers of
children with special needs.

We are united, we sisters, regardless of the diversity
of our children's special needs. Some of our children
undergo chemotherapy. Some need respirators and
ventilators. Some are unable to talk, some are unable
to walk. Some eat through feeding tubes. Some live in
a different world. We do not discriminate against
those mothers whose children's needs are not as
"special" as our child's. We have mutual respect and
empathy for all the women who walk in our shoes.

We are knowledgeable. We have educated ourselves with
whatever materials we could find. We know "the"
specialists in the field. We know "the" neurologists,
"the" hospitals, "the" wonder drugs, "the" treatments.
We know "the" tests that need to be done, we know
"the" degenerative and progressive diseases and we
hold our breath while our children are tested for
them. Without formal education, we could become board
certified in neurology, endocrinology, and psychology.

We have taken on our insurance companies and school
boards to get what our children need to survive, and
to flourish. We have prevailed upon the State to
include augmentative communication devices in special
education classes and mainstream schools for our
children with cerebral palsy. We have labored to prove
to insurance companies the medical necessity of gait
trainers and other adaptive equipment for our children
with spinal cord defects. We have sued municipalities
to have our children properly classified so they could
receive education and evaluation commensurate with
their diagnosis. We have learned to deal with the rest
of the world, even if that means walking away from it.

We have tolerated scorn in supermarkets during
"tantrums" and gritted our teeth while discipline was
advocated by the person behind us on line. We have
tolerated inane suggestions and home remedies from
well-meaning strangers. We have tolerated mothers of
children without special needs complaining about
chicken pox and ear infections. We have learned that
many of our closest friends can't understand what it's
like to be in our sorority, and don't even want to
try.

We have our own personal copies of Emily Perl
Kingsley's "A Trip To Holland " and Erma Bombeck's "The
Special Mother". We keep them by our bedside and read
and reread them during our toughest hours. We have
coped with holidays. We have found ways to get our
physically handicapped children to the neighbors'
front doors on Halloween, and we have found ways to
help our deaf children form the words, "trick or
treat." We have accepted that our children with
sensory dysfunction will never wear velvet or lace on
Christmas. We have painted a canvas of lights and a
blazing Yule log with our words for our blind
children. We have pureed turkey on Thanksgiving. We
have bought white chocolate bunnies for Easter. And
all the while, we have tried to create a festive
atmosphere for the rest of our family. We've gotten up
every morning since our journey began wondering how
we'd make it through another day, and gone to bed
every evening not sure how we did it.

We've mourned the fact that we never got to relax and
sip red wine in Italy . We've mourned the fact that our
trip to Holland has required much more baggage than we
ever imagined when we first visited the travel agent.
And we've mourned because we left for the airport
without most of the things we needed for the trip.

But we, sisters, we keep the faith always. We never
stop believing. Our love for our special children and
our belief in all that they will achieve in life knows
no bounds. We dream of them scoring touchdowns and
extra points and home runs.

We visualize them running sprints and marathons. We
dream of them planting vegetable seeds, riding horses
and chopping down trees. We hear their angelic voices
singing Christmas carols. We see their palettes
smeared with watercolors, and their fingers flying
over ivory keys in a concert hall. We are amazed at
the grace of their pirouettes. We never, never stop
believing in all they will accomplish as they pass
through this world.

But in the meantime, my sisters, the most important
thing we do, is hold tight to their little hands as
together, we special mothers and our special children,
reach for the stars.

The Ceiling (part 1)

2009-04-08T08:49:00.000-07:00

Thank you all for the ceiling decorating suggestions!

I have decided to paint the ceiling blue, add some fluffy white clouds and hang origami paper cranes, butterflies and dragonflies, in varying sizes and colors, from it. I think I'll also try to incorporate foil paper on the undersides to make them even more visually appealing. We have a small fan that I'll attach to the shelves in his room to make them fly about.

I'm really jazzed about this and will post photos when it is done.

A recent shot of Owen in his new hat.

New and recent things.

2009-03-26T14:03:00.000-07:00

Owen's new Converse.

Six dollars at a consignment store. Now we're looking for some cool sandals for summer and any suggestions for a two year old would be greatly appreciated.

Owen on his recent vacation to L.A. and Manhattan Beach.

The last shot is of Owen in his Phil & Teds Metro backpack. It is totally cool and the best part - he TOTALLY loves it. It is so comfortable to wear him in this as the pack is designed to be lightweight and fully adjustable. It will be brillant for the trails this summer.

The L.A. trip... Owen and Elliot did remarkably well, although the trip was not without its challenges as one might expect traveling with ANY 21 month old and 5 week old (we drove as will probably be the case with most of the trips we take this year). That said, it was smooth enough to give me the confidence to now be able to pack both of them up, by myself, and take them out on adventures. And as a family, we are already planning several trips with them soon - one to see Grandpa Marshall and Nai Nai and stay at the cabin in late June/early July, a bike trip in Southern B.C. and one in Oregon. We realized on the trip down to LA that we've not been stimulating Owen enough the last few months. Sure, he may experience overload sometimes and may get fussy when he's had too much, but watching the big trucks go by the window, with their colorful cabs, listening to Daddy's music all day in the car, meeting new family members, attending parties and dinners and sharing a room with the rest of his family, made him overall more attentive and, most noticibly, helped him sleep so much better at night. So now that it is getting warmer and I am no longer pregnant, our plan is to get both boys out so much more and for Janet (Grandma Chalupa) and I to plan all day outings each Wednesday.

We were gone for two weeks in L.A. and had a wonderful time at Kelsey's Grandma Tutu's 90th birthday celebration (a 3 day weekend full of events) and a lovely, sunny, five day vacation at a beach house on Manhattan Beach. It is good to be back home and although I DO miss the sunshine, I just noticed today that many things I planted in the garden have come up and soon, it will be warm here as well.

Owen's new brother.

He's growing and eating like a champ and now weighs 10 pounds, 10 ounces. He's easy. He sleeps well - most of the time - is cheerful and has started to smile and laugh.

Owen's new ceiling? We are considering a mural or stenciling Owen's ceiling. Since we are not artists per say, but ARE resourceful and can muster up creativity on occasion, we're soliciting any do-it-yourself suggestions. Send us a message with your thoughts. We need to incorporate big images and bold colors so he can easily see the design from his bed.

No new seizure activity. No drama. No surgeries. No new emergency interventions.

Good.

Growing up

2009-02-11T09:20:00.000-08:00

Our baby is no longer... he's now our little boy.

With all of the struggles with weight gain and the fact that Owen has little head control, no trunk control and, unlike most other 20 month olds who are walking, needs to be carried from place to place, we've found ourselves a bit stuck in time. Owen has, up until Elliot's arrival, still seemed like our little baby.

I've shed a few tears these last few days, looking at my little boy and realizing that he's growing up. We cut his hair yesterday for the first time in months and I cried - again. He has such beautiful locks and the longer hair made him look so sweet. Things were starting to get a bit unruly, though, and so I decided to finally him a little boy haircut. He looks even sweeter but, alas, that baby look is gone. I am slowly becoming okay with this as I know that all of this means he is growing into his role as big brother, as much in our eyes as in his.

More photos....

2009-02-08T16:11:00.000-08:00

Elliot & Family.

Everything continues to go exceptionally smooth. Elliot is having increasingly more alert times and it's been fun to watch him make faces and pay attention to his environment. He is a champion eater/breastfeeder and it makes me unbelievably happy to say that this relationship is going perfectly. He eats every 1-2 hours and finishes every last drop. Not conducive to sleep, but certainly to a healthy growing baby.

Xo, S/K/O/E

Elliot Andrew Marshall

2009-02-06T14:40:00.000-08:00

...was born on Wednesday, February 4th at 11:52 am at Swedish Hospital after a smooth and uneventful labor and delivery.

The numbers:

8 lbs 5 ounces
21 inches

Owen hears his brother, goes still and quiet and then smiles and smiles. He approves.

Friends doing great things.

2009-02-03T18:19:00.000-08:00

I thought I'd take this time, while we attempt to patiently wait for O's brother's arrival and when there is not much new to report with Owen, to spread the word about some great people doing great things. I hope that one of the positive outcomes of the economic "crisis" is that we pay more attention to where the things we purchase - whether it be our pottery or our canine companions - come from and who and WHAT those dollars support.

Our friends, Mark and Ginger, are big fans of big dogs, especially mastiffs. They recently volunteered to foster an English Mastiff named Nelson. Ohhhh, he's a cutie. They are so close to keeping him for themselves, but really want him to go to a home where he can be with people during the day (versus left alone while the humans go to work). You can find out more about Nelson here. Let's help find Nelson a good home!

Elisha, of Elisha Rain Photogrpahy, specializes in maternity and newborn photography. She is a wonderful soul, engaged community member (Indianola) and incredibly talented photographer who captured our pregnancy with Owen in a loving and beautiful way. I treasure the photos she took of Kelsey and I when I was 38 weeks pregnant. Not only do these photographs make lifetime keepsakes, but if you are looking to support a local business woman and artist and want a shower or mother blessing gift that will always be treasured, a gift certificate from Elisha is absolutely perfect. She lives in Indianola, her studio is located in SoDo District of Seattle and she works out of both locations. She also has exhibits of her work at the following businesses.

Dani Spins. I've known Dani for over ten years, dating back to our Portland days. I was absolutely delighted when we visited a couple of years ago to learn that the pieces of pottery that were casually sitting on their sideboard, that I was oogling over, were made by Dani. She has an excellent, creative eye (as she should since she is also a very talented graphic designer) and the glaze style she uses on her pieces is stunning. These pieces are truly unique and absolutely gorgeous. They are also very affordable. The next time you are looking for a wedding gift, I strongly urge you to visit her site.

And, if you are local to Seattle or Kitsap...

... visit Ginger. You can read about them here. We bought a piece from Myorian Studio last year with some money that was given to us - the stipulation was that we not spend the money on bills, or expenses, but that we instead buy something that makes us happy, gives us joy. The piece we have is similar to this one. It's huge - more than six feet across and three feet tall. It is BIG, BEAUTIFUL and makes me so happy every time I look at it. Dave and Kelly of Myorian Studio create metal and glass pieces that fit well with indoor spaces (sconces, railings, wall hangings) as well as pieces that make a lovely addition to the garden (gates, large sculptures). They also do custom work so don't be afraid to ask! All of the business partners at Ginger live in Indianola.

A number of OKM readers already know Shannon at Cerebral Palsy Baby. She and I connected via the blogosphere, and as it turns out, she and her family live in Port Orchard, only 30 minutes from Indianola. Her Esty store, Small Grapes, is a favorite of mine. Yes, many of you will recognize some of your holiday/shower/birthday gifts when you visit this site. I just love Shannon's stuff.

Please spread the word and share these links with friends and family. I know also that there are so many others out there that I didn't mention. PLEASE share this information with us so that we can, in turn, spread the word about other individuals/small businesses doing great things. They are the foundation of a healthy, creative, sustainable economy!

Cheating... a bit...

2009-01-28T10:58:00.000-08:00

I'm going to copy and paste the same message on the blog that I just left on my facebook page, along with a few photos...

----

Thank you all for the emails, voice mails and facebook messages. We so appreciate all of the good thoughts and best wishes... No news just yet, but we will certainly post an announcement and photos once babe #2 has made his arrival. I have my 38 week OB appt tomorrow... Right now, all's well, I feel good, the baby is doing great and we are very ready and excited to meet the newest member of our family. I'm about to post a few photos... an "almost 38 weeks" belly shot (per several requests), a shot of sweet O in the bubble baths we share regularly and one of Dutchy riding in the back of the new double-seater, Burley bike/cross-country trailer that we received from our families for Christmas.

Happy Holidays from our neck of the woods...

2008-12-30T10:04:00.000-08:00

Since the last posting...

We had a lovely, four day, relaxing Thanksgiving with Mac and Margery in sunny Bend, Oregon. It was such a treat to spend so many quiet days with them, enjoying good food, conversation, watching football (well, Margery and I were not as involved in the latter). A few days earlier, we had a fun turkey day celebration with Leslie, Herb, GG Mimi, Jen, Megan, Mary, Steve, Kathryn, Kevin and Lillian on Bainbridge Island.

Owen came down with his first major virus just before we left for Bend. He probably picked this up at Holly Ridge when he had his oral/motor feeding evaluation. He had a temperature of 103 and ended up with congestion and a cough. Kelsey and I both caught the bug and it hung around our house for three weeks, ushering us into our busy holiday season at GFC. With repeated coughing bouts lasting 1-2 hours, Kelsey spent a few nights on the couch as his hacking was so severe that it would shake the bed like a major earthquake. As is the case with kids like Owen, although he defied the odds and handled the cough/congestion just fine, the virus caused a substantial spike in his seizure activity and for the first two weeks of December, we struggled to get these back under control. Our saving grace ended up being the addition of MCT oil to his diet, nightly doses of Melatonin and a strict nap/sleep schedule. It was a rough few weeks, but by Christmas he was back to his (mostly) cheery self.

O actually has pudgy cheeks, legs and arms! I love that there is so much more of him to hold and cuddle. He loves to look at his high contrast board books by Peter Linenethal (Look Look! and Look at the Animals) that cousin Jen got for him a couple of months ago. They are perfect for where he is at in his visual development. We sit him on our lap, open these up and he gets wide-eyed, scanning the pages, devouring the high contrast images. We also now have a fun game that we play called "spiderhand." With O on his side or back, we wiggle our fingers a couple of feet above his head, moving our hand from side to side as he tracks it, slowly bringing it closer to his face while saying, "Here comes spiderhand." He loves it and smiles repeatedly in anticipation - a new development for him. We then bop the tip of his nose as spiderhand reaches his face. This usually produces a BIG smile. This might seem very basic for an 18 month old, and it is on the "typically developing child" charts, but for Owen, it is a wonderful achievement.

Kelsey very successfully managed another busy - fortunately, given the economy, even busier than last year - holiday season at Grounds for Change. Our staff was amazing and it was so nice for me to be able to have the flexibility to help out for a couple of weeks during our busiest time. We've been spending much of our vacation (during the annual GFC closure from the 24th through the 4th), sleeping in late, lounging in bed with O and spending time with family on Christmas Eve and Christmas Day. We did get an opportunity to have an adult overnight (DATE!) in the city on Sunday/Monday. Janet and Coop (Grandma and Grandpa Chalupa) did a practice run for when O's brother is born and took Owen overnight while Kelsey and I treated ourselves to a stay at the Inn at the Market and dinner with our friends, Sara and Joe.

We woke up early Monday morning to our water view of ferries coming into Seattle and the lit "Public Market" sign ready to greet the few who ventured out into the city between these two major holidays. We were scheduled to be at our ultrasound appointment at 9:00 am to peek in on O's brother at 34 weeks with a f/u OB appointment at 10 am. Although I've only gained 20 pounds, I've been telling everyone that I feel like I am growing a giant. Well, indeed... the radiologist had to come in afterwards to confirm the technician's measurements. We were a bit nervous at first, not knowing why he was doing this, and so asked what was going on. He proceeded to tell us that the baby's numbers were well above average, telling us that the measurements coincided with a 37 to 38 week old baby versus a 34 week baby. The head circumference, abdominal measurements, etc put this guy in at the 87th percentile. I laughed and said that I didn't know if this was a blessing or a curse. The radiologist and our OB doctor said that they only thing this indicates is that this little one is growing well. Our OB doctor said to plan on keeping the 8th of February (versus the 13th) as the due date. Based on this, I've only got 5 weeks left to go - thank goodness. All other measurements - blood flow through the cord/placenta, amniotic fluid levels - looked great as well.

I've posted some photos from the last month on Smugmug. These include some photos of the beautiful snow we had just in time for Christmas.

We love to hear from all of you and have appreciated the holiday cards and letters. Leave us a comment or send an email (srm@tiny-giant.com).

We hope that your holidays are great and that all of you have been able to cuddle your babies and enjoy your families.

Peace and love in the New Year,

Stacy, Kelsey and Owen

We knew he could do it!

2008-11-21T16:14:00.000-08:00

Owen had his oral/motor feeding evaluation today at Holly Ridge, the EI center that he is enrolled in. He did FABULOUS! He was calm and happy - even during and after D., the speech therapist, used a rubber toothbrush in his mouth while she held him still (to gage his oral sensitivity). He has recently LOVED to have his teeth brushed so the fact that he did so well was not much of a surprise to me. I thought perhaps that he might feel a bit cheated since the toothbrush did not have the yummy, Weleda kids mint toothpaste on it, but if he did, he certainly didn't make a fuss about it. I did feel there was a good chance he would become unhappy when placed in their "feeder" chair, in a room that was foreign to him with sounds of very active toddlers emanating from the hallway. But he was a champ and smiled a couple of times at us before we even got started on the feeding part...

Just like at home, he opened up like a little bird each time I showed him the spoon and tapped him on his lower lip with it while saying "open" and "more." He happily took several spoons of applesauce (with butter) and marinara sauce (with lots of garlic and olive oil, of course). And as he typically does, he even smiled a couple of times after the marinara sauce. That's our boy. Yes, O loves food and the more garlic, the better. D. did note a "weak swallow," something that we assumed was the case given his CP and low trunk tone. Fortunately, according to D., this ability can be improved upon over time with practice. She was not worried about it too much because he swallowed several times with each "bite," swallowing all of his food, slowly, and not spitting any of it out. He is indeed very thorough and careful (and tidy) when he eats. D. said he did excellent - much better that she anticipated he would given how long it has been since he's taken the majority of his food orally - and that she was surprised at how much he enjoyed the food and how calm he was during the evaluation. She was very happy that there was no feeding aversion and no choking, coughing or noticeable aspiration.

Since aspiration can be "silent," before moving on to substantial oral feedings, and per the neurologist's request (he will not "approve" oral feedings or release oral feeding recipes that adhere to the ketogenic diet until we move forward with the next step), we will have a swallow study done at Children's Hospital in the Spring. D. explained the process to me today - they mix barium into a couple of his favorites foods that we prepare and bring for the study. O will sit in a feeder chair, like the one he used today, and I will feed him enough food for them to obtain images of the efficacy of his swallowing, but more importantly, images that will also tell them if any of the food is being aspirated into his lungs. The trick with kids like Owen is that they have trouble coordinating the closing of their airway with the opening of their esophagus when they swallow food. Any food that is taken into the lungs has the potential to cause serious infection. In talking with one of the experts on this at Children's a few weeks ago, a wonderful occupational therapist who has seen Owen twice and who is well known across the country for the work she does, it seems that Owen is not a very high-risk kiddo for this type of complication. Even if he does aspirate a bit of food, R. reminded me that we we ALL do this on occasion and since O has shown that he is very healthy, is not prone to infections, including respiratory infections, the risk relating to minor aspiration, (if he is aspirating at all), is greatly reduced.

Since I am pregnant and the swallow study involves a series of x-rays, we will wait until after February to perform this next test. Until now, we have been given the thumbs up to continue exploring tastes and helping O to improve upon his swallowing abilities.

After a LONG week of MANY appointments, this totally made my day.

All's well.

2008-11-16T20:28:00.000-08:00

I apologize for once again not posting in several weeks.

We are all very well. Owen is stable and happy the majority of the time. There are still periods during the day when he is fussy and it takes a bit of juggling (from one seat to the next, to the bed, to the Ergo Carrier, to holding him...) to get him calmed. He is so much more aware of his surroundings and when sitting in his beanbag or Special Tomato seat, his gaze follows us across the room. This is such a HUGE milestone for him. He pauses and then turns towards the voice when someone he knows enters the room and he hears them. When I touch his nose and slide my finger from his nose to his lips then to his chin and say "Where's that smile," he smiles. He is, in fact, becoming so much more aware of himself and his surroundings that Kelsey and I feel that most of his fussy periods now are a result of his frustration at the lack of control he has over his body.

He vocalizes A LOT. His sounds are often very throaty and we can tell he is trying very hard to make the whole system work. He just can't get the vocal cords to operate like he wants them to. We encourage these sounds and let him know that we hear him and understand. It is the best we can do for now - to give him the confidence and encouragement he needs to keep trying.

When he is calm, he's full of smiles. It really gives us a sense that he is happy and that he loves us. It is difficult when you don't have this love reciprocated in the usual, tangible ways - through eye contact, smiles, coos - as we experienced for the first several months of O's life. What's funny is that I know O is looking at me when he looks just above my head or just to the side of my face. This is how it is with kids with CVI - they "see" better out of their peripheral vision. So when he looks at the top of my head, or my ear, I know he's actually focusing on my face. This has become "normal" for me - I don't even give it a second thought anymore.

O's neurologist has a new nurse - she's fabulous. Knowledgable, responsive, kind. She told me the other day that I must remember that Owen is a child with seizures, not a seizure-child. She reminded me not to let the seizures define him. This was in response to me letting her know that after our December 1st appointment with Dr. S for a f/u visit, we were going to be taking a few months off from appointments, tests, etc. so that we can have some peace at home both before and after his brother is born. We COULD have an EEG to see what is going on from this diagnostic stand point. We COULD have a swallow study (video flouroscopy) done to take a look at the efficacy of O's swallowing. Instead, we will continue to have blood draws each month at his pediatrician's office on Bainbridge Island to make sure he is still tolerating the keto diet well and get his weight checked every so often to make sure he is gaining well, but not too much, too fast. We will pass on all of the other non-emergency tests and appointments for a few months. I KNOW that if Owen could talk, he would say that he is just fine with this plan.

We DO have an oral/motor feeding evaluation set-up at the EI center this week. This will be performed by one of the Occupational/Speech Therapists there and will give us a better idea of Owen's oral feeding tolerance and abilities. Honestly, I think he'll do great. We've been giving him small tastes of keto-friendly foods (a mixture of unsweetened applesauce, butter and cinnamon, for example) and he chews and swallows slowly, but with ease and without choking or gagging. Sometime in late Spring, we'll have a swallow study done to ensure that no food or liquid is being aspirated. Once he's passed that "test" with flying colors, we'll work with Dr. S to incorporate some oral feedings into his day. Mealtime is such a social event and food (and cooking), such an important part of our lives - we want O to be able to share in these joys as well.

The ketogenic diet is still working great.

I've been in full nesting mode the last few weeks - cleaning, cleaning, cleaning, painting rooms (no VOC paint), organizing and rearranging. Every surface in our house has been wiped down and every drawer and closet cleaned out and organized (a big thank you to Janet for all of her help with this). I'm trying to get many appointments out of the way before the holidays AND in anticipation of my February 8th due date. This week is a busy one with appointments each day - EI f/u, PT, cranial-sacral, OB/GYN, oral/motor evaluation. We are looking forward to spending an early Thanksgiving on Bainbridge Island on Sunday with the Marshall/Hethcote/Kelly family. Next Wednesday, we leave for Oregon for five days to spend the actual Thanksgiving holiday with Mac and Margery (Grandpa Marshall and Nai Nai). Upon our return, we'll jump head-first into the busy holiday season at GFC (we have yet to feel any major effects from the economic mess and hope this continues) until we close for the holidays on the 24th. We've decided to lay low in January and work on getting lots of sleep, finishing up projects at home and staying relaxed. It will be good for the three of us to have some quiet time together before O's brother arrives.

I was reflecting this weekend, on my sentiments from this time last year - my posting included a reminder to give thanks for your children, their health, your spouses and lovers, your family, your friends. I received a call from my friend, Angie, this last Saturday. A friend and former co-worker of ours, in her late 50s, passed away unexpectedly last week. I had just spoken with C. on the phone a few months ago. Her daughter had been trying to have children for years - with many losses late in her pregnancies. C. was so excited when she called me - she was finally a grandmother. So once again, at this Thanksgiving, I am reminded to be thankful for all that I have - right now.

Happy Thanksgiving to you all!

I have great faith in a seed.

2008-10-26T11:05:00.000-07:00

I planted my first winter garden this year, albeit a little late. Fortunately, mother nature is on my side and the mild fall weather we are having has helped my seeds along quite a bit. The radishes, green onions, kale, spinach, two types of lettuce (including a wonderful winter hardy, deep red variety called "Merlot"), arugula, roquette and garlic are all up. I confess... I planted 283 cloves of garlic which, yes, will hopefully equate to 283 heads of lovely hardneck and softneck garlic come next fall. All that remains to be "seen" is the watercress. All of the varieties are winter hardy and in researching vegetables for my winter garden this past summer, I learned that the majority of these varieties survive the cold temperatures by producing extra amounts of sugar which act as anti-freeze. Winter veggies can actually be sweeter than summer ones. Go figure. I don't know if any of these vegetables will mature enough to harvest before February, but I DO have great faith in a seed and will be patient.

I am currently enrolled in a Northwest Earth Institute course, "Menu for the Future." Any individual can arrange to hold/host the course in their home. The class I am attending is being held at Leslie and Herb's house every other Monday through mid-November. Although, as Herb noted after the first session, with our group in particular the readings are really preaching to the choir, it is interesting, thought-provoking and engaging none-the-less.

I wanted to share a few links that I hope some of you might find useful and interesting:

Good Food: "An intimate look at the farmers, ranchers, and businesses that are creating a more sustainable food system in the Pacific Northwest."

You Grow Girl blog and book.

Seed Savers Exchange: Based out of Decorah, Iowa. Offers over 11,000 varieties from an extensive "living collection" of seeds saved throughout the generations.

Slow Food USA's Ark of Taste

In Owen news... We had our long-awaited orthopedic visit at Seattle Children's Hospital on Wednesday. I was really nervous about this. Owen is so high tone, his spine already significantly curved and his muscle spasticity such an issue, that I feared the worst - - MAJOR interventions (surgical, drug, etc) at only 15 months of age. In the end, Dr. S said that Owen looked great, is very healthy and is solid and sturdy! He said that he still has excellent flexibility in his neck, spine, hips and feet and that he would like to see us back in a year. As is the case with children like Owen, he said that every child is different and that his curvature could remain the same or could become problematic. Only time will tell. There is no sign of hip dysplasia - a huge relief. I KNOW that all of the work that Barb has done at the PT visits, the time she has put into positioning and the time we spend almost every morning on stretching and exercising, has helped tremendously.

I recognize there are probably a number of people out there who read this blog, who haven't met Owen, who wonder how he is doing developmentally. As I just told Barb last week at O's PT visit, hope reigns supreme around our house. That said, we are also realistic. Owen is significantly developmentally delayed. He has little control over his extremities, except for a bit of volitional use of his right hand. He has little head control and no trunk control. He still has periods each day where he is very fussy and uncomfortable due to being overstimulated, constipated or overly tired. He does not regularly make eye contact and will often focus his gaze on the brightest light in the room (common for kids like Owen with cortical visual impairment).

But, if you read between the lines, or have been following this blog the last year, he has changed so much given where he's come from and what he's been through. His smiles are now slow, sweet and more deliberate (and heart-melting). He recognizes voices and loves it when Daddy comes home. The occasional "use" of his right hand is becoming more focused and frequent. He recognizes Dutch. His vision is improving very nicely and he scans faces and spaces now versus holding his gaze to his right side. He no longer shows signs of nystagmus. He is slowly gaining more head control now that he is no longer having as many seizures and we have time to focus on this important skill. His severe reflux is gone. When people ask how Owen is doing, I say "great" and follow it up with "it is all relative." He IS doing great.

Owen's weight has been such an issue the last eight months. He lost quite a bit after getting the tube, vomited more frequently and was fussy during feedings, so we backed down on the volume for days at a time. Then the spasms returned in May which complicated feedings even more. He was down to 15 pounds this summer. At our weigh-in on Friday at the pediatrician's, we were delighted to see that he is now a whopping 16 pounds 11 ounces! He has gained 21 ounces in the last four weeks. Since he is stable on the keto diet, we are hopeful that this trend can continue.

While he is currently stable on the ketogenic diet, he continues to have 5-10 seizures each day as he falls asleep. For most parents, any seizure activity is a scary thing. For us, 5-10 seizures compared to 120-150 is not only amazing, but it is also something we are okay with for now. O is almost completely weaned off of the Vigabatrin which has eliminated the partial seizures we had been seeing (rapid, small jerks of the head in clusters of 4-5). Owen's neurologist suspected that the Vigabatrin was causing these and since we all felt as though it wasn't doing anything for his spasms, decided to try a wean. This wean has also been really beneficial for his level of alertness and his ability to focus and learn. Seizure medications are so rough on kids and have such major, debilitating side effects. The lesser of two evils.

If you are a parent who is considering the ketogenic diet for your child, here are a few tips:

1: Constipation is a HUGE issue and can be significant enough on the diet to be both extremely uncomfortable and dangerous. Owen just had his first BM yesterday, without the use of suppositories, since leaving Stanford eight weeks ago. Kelsey and I have never been so happy to see a big pile of poo in our lives. A few weeks ago, we suspected a bowel impaction and had to do a clean-out so that it didn't turn into a bowel obstruction. Scary stuff.

2: Miralax can be great for relieving constipation but be aware of the fact that it can produce VERY loose stools, making your child extremely uncomfortable. Although the recommendation was to continue to increase the Miralax dose, after a few weeks we could see clearly that this was causing TOO loose of stools and making O very unhappy. We stopped using this and went to a magnesium supplement. His flexing at the waist and stomach discomfort dissipated within a few days of discontinuing Miralax. The Magnesium supplement seems to be working for his constipation and is beneficial in so many other ways.

2: Probiotocs. These were a life-saver for Owen! Leslie reminded us of the importance of a balanced flora in the belly and just a couple of days after starting Owen on these, his overall bowel health improved. Just be sure, as with any supplement, that you check with your dietician or ensure that there are no fillers or added carbohydrates that would alter the 4:1 ratio and potentially throw a child out of ketosis (and spike seizure activity).

3: Mineral oil: This was recommended as a way to lubricate the intestines. We did not know, however, until reading more about the use of this on the ketogenic forum that mineral oil can actually inhibit the absorption of medications and all of the fatty vitamins. It is also not suggested (by an NIH article) for long term use.

4: The Ketogenic Diet by Dr. John Freeman: Essential! We had a wonderful experience at Lucille Packard Children's Hospital, but there were a few things they didn't tell us that would have helped us quite a bit these last few weeks. We ended up pulling out The Ketogenic Diet a few days ago to get some of these questions answered. We found the answers and more...

5: Free fluids: For the highest level of ketosis and best seizure control free fluids must be controlled and somewhat restricted. There is a fine balance between dehydration (which can cause kidney stones) and adequate hydration to avoid this complication while also maximizing the benefits of the diet. The book lays out the ways in which to calculate fluid intake, measure hydration and how to watch for complications. We had been giving O too much water with his medications, when we flushed his tube, etc and have adjusted these amounts within the last two days.

6: Mixing of the Ketocal formula: We wondered for two months why the Ketocal seemed like it was not properly mixed and the last 2-3 ounces would not flow through the tube/pump. We learned in The Ketogenic Diet, that the formula will only completely dissolve when mixed with water at 113-122 degrees - mush warmer than what we were using. This has dramatically improved the consistency and the flow of the formula through the pump.

7: I would highly recommend the Yahoo Ketogenic Diet Forum. I have had so many of my questions answered by thoughtful, knowledgeable parents. I don't know what I would have done without this resource.

Update on Owen's sibling: We have moved forward with completing the process to save his cord blood. Whether this will be used for Owen in the future, for O's sibling or whether it will simply sit in cryogenic storage for a hundred years, remains to be seen. We felt it was both a logical and easy decision to have it saved, however, especially since Swedish has a streamlined process set up for collection and delivery to Cord Blood Registry. (Addendum, post-post: Karen Gerstenberger is always so thoughtful about leaving comments on O's blog. As she reminds me, cord blood can be used by other individuals, including cancer patients.)

I had my 23 week OB appointment this Thursday. Everthing looks great. Dr. Burdick reviewed the quad screen results and said that they are perfect. I have gained 11 pounds in 23 weeks although the way this one is kicking, I feel like he's already significantly larger than Owen was at this point. My only "complaint" with this pregnancy is that I am definitely more tired the second time around. But my pregnancies, so far, knock on wood, tend to be so easy that I feel like, if that's my only issue, I'm doing pretty damn good.

And Kelsey? You never get to hear from him... We'll, he has perfected both the sourdough baguette and the rosemary/salt loaf with the "mother sponge" sourdough starter that we've had going now for a couple of months. They are divine - we now get to have fresh bread on a regular basis with his loaves plus the one we pick up from Judith here in Indianola on Wednesdays. Judith is an amazing baker/foodie. She used to own a cafe and bakery in Kingston but now works out of her dreamy, commercial kitchen in Indianola. It is like walking into a rustic kitchen in Italy with a huge, central wooden slab as a work surface, wood beams stretching across the kitchen ceiling, fresh mozzarella hanging from the beams, dripping into buckets and a Hobart mixer as tall as I am. She recently started selling locally raised chickens - we bought four at four pounds each. Janet will be bringing her chicken shears next week to teach me how to cut them down. She picked them up along with our bread order last week as we were at O's ortho appointment and told me afterwards that she hasn't seen chickens that fresh and that color since she was a girl on the farm. They are a beautiful, healthy pink color - nothing like the chicken you see in the grocery store.

Back to Kelsey... he is actually in at Grounds for Change today, working to get things in order as we enter the busiest time of the year, November and December. Things are going great at the biz - we are so fortunate to have such amazing staff and we know this year will be our best yet. Our goal, come February, is to have Kelsey stay at home on Fridays so that he can have more time with both kids. We are really looking forward to having three days a week together as a family. Kelsey is my rock. Nothing much really changes with him although I believe he does continue to improve with age - like a fine wine.

I installed the "subscribe" feature on the right hand side of the blog for those of you who kindly check the blog each day only to be disappointed by my posting negligence. This way, you can sign up and receive a notification when I've entered a new post.

Also, there have been a few parents who have wanted to have direct communication by email about various treatments, experiences, etc, relating to Owen. I have now attached my email address to my profile so that you can email me directly with these questions.

Lastly, I will try to get better at labeling my posts so that the links on the right side will have some meaning. I know many parents have found this blog and use it as a reference for their own experiences. Hopefully, the labels will make it easier to find postings that may be relevant to the issue at hand.

Cheers and love from Indianola,

S/K/O

----

"The more I read and the more I talked to other parents of children with disabilities and normal children, the more I found that feelings and emotions about children are very much the same in all families. The accident of illness or disability serves only to intensify feelings and emotions, not to change them." - Judith Weatherly

As promised...

2008-10-10T08:28:00.000-07:00

The photo of my sister, Laura, taken on October 28th, 1982, with the gigantic pumpkins she grew that year on our two acre parcel outside of Iowa City, Iowa.

Happy Halloween!

Ooooooo, baby.

2008-10-02T17:55:00.000-07:00

I am so excited.

Janet and I (and Owen) had a chance to take a look at the Burley D'Lite in person yesterday at REI. I have spent the last few months reading up on double bike trailers. The D'Lite also converts to a pull-behind with skis for our annual Methow Valley x/c ski trips and has consistently received excellent reviews from parents, including a few who have kids with CP. One such parent said, ""I recommend this product to anyone in the market for a trailer. I use this for trailing, walks, zoos, parks, jogging. I am a stay at home mother that has a child with cerebral palsy that cannot do anything independently (including sitting). I wanted her to experience bike riding and needed a safe, secure, and comfortable ride for my daughter. This is the ONLY product on the market that I would put her in."

I am NOT being paid by Burley to post this - I swear. It's just that we LOVE to bike, love to travel, Owen loves to ride/move and this trailer will get all of us out of the house. It's a double-seater and holds two kiddos for a total of up to 100 pounds. We hope to get this sometime this winter and will retrofit it with the "Baby Snuggler" padded harness/slings for both kids. This kit is used for smaller tikes who have less head/truck control and will really help to secure both babes in their seats.

We've looked into trails (some of them nice, flat railroads that have had the tracks pulled up and converted into bike trails) across BC, on Vancouver Island, in the San Juan Islands, in California and here in WA State. So many possibilities! Owen (and his brother) will be able to hear the birds, smell the fresh air and see the beautiful sights as we all cruise along on our wheels. Now we just need to get our road/mountain bikes down, dusted off and tuned up.

Owen has really been enjoying his Ergo Carrier the last three weeks - so much so that sometimes this is THE ONLY place he wants to be. And I love it. After so many months of seizures, sleeplessness and fussiness, it is lovely to be able to take him into a public place like REI (where we were for two hours yesterday) and have him calmly experience the sights and sounds. He even managed to fit in a nap while we were there. I have joked that I am going to keep him skinny just so I can continue to carry him around and keep him close to me.

We met up with my mother's cousin and her family (Mary, Tim, Madison and Sarah) at the Puyallup Fair a couple of weeks ago. My mother grew up raising livestock for 4H and all of us, having grown up in Iowa, enjoyed experiencing the quintessential summer reminder of our roots. Owen's favorite, hands-down, was the cow barn. He immediately went quiet and got wide-eyed when we entered. The beautiful, mocha-colored Jersey cow that we stopped next to was nice enough to let out a timely, long, sweet "moooooo." Owen loved it! I know the smell was also new and wonderfully intense for him - the warm hay mixed with a bit of cow funk... I wanted to include the strip from the black and white photo booth that he and I got cozy in at the fair. Me and my sweetie... well, one of my sweeties. I have a few of these strips of Kelsey and I to document the booths we've cozied up together in, in our almost 19 years of couplehood...

I've also promised some that I would post ultrasound photos, so here they are. The ultrasound was on September 11th, so a full three weeks ago. My pooch continues to grow, and Owen's little brother continues to kick. No more of the barely noticeable, gentle movements. These are now the unmistakable bumps and kicks of a frolicking, growing baby within my belly.

Reflections.

2008-09-26T22:00:00.000-07:00

We began this blog a year ago this month...

A year ago this October, at four months of age, Owen had his first bout of seizures, a rare and serious form of epilepsy known as infantile spasms. We were terrified when we recognized the distinctive movements as both Kelsey and I had read online and been warned by Owen's first neurologist, that they were very difficult to treat and almost always indicated a serious underlying problem.

Last October, Owen was plagued by severe reflux and would projectile vomit 4-5 times a day, losing up to a third of his much needed calories. I changed both of our clothes at least twice a day and did dozens of batches of laundry each week. When awake, Owen would cry incessantly. He was confused, scared and trying to make sense of this world that seemed to him, so overwhelming. (A bit of a side note: Owen's fussiness is pretty standard for children who have experienced a major brain injury. I feel confident now saying that it isn't part of his underlying personality, it is an expression of his frustration at attempting to sort out a very confusing world.)

October 2007.

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October 2008.

Last October, Kelsey and I were both struggling to adjust to our role as new parents which, as others can attest to, is a big deal by itself, even without all of the layers of complications that Owen's injury brought with it. I was having these feelings that I believe most new parents do, that my autonomy was completely gone. No longer could I go anywhere without being responsible for this new life - and Owen's fussiness, seizures and reflux made it impossible for me to go anywhere with him except to his appointments. Janet had just started helping out one day a week last October and was surprised at what it was really like to try to manage Owen's needs throughout the day. She still shakes her head, herself a mother of three and says she "had no idea."

I rarely left the house last fall, and spent my time sitting with Owen during and after his feedings, trying to help him keep everything down. We sat for HOURS each day. I remember the disappointment when he would start to retch and most everything would come back up. We felt so helpless. Days would go by and I would realize that I had not left the house in a week. I felt disconnected from friends and community although both reached out and attempted to stay in touch.

Overnight I had to adjust to the fact that I was no longer a "professional," a full time business owner, communicating with our customer base across the country each day and marketing our programs to other potential customers. I was no longer able to talk with dozens and dozens of people a day about something I helped to grow, that had become my passion and that I had poured so much of my time, blood, sweat and tears into. This separation and transformation was difficult and would take months to adjust to. It really started to hit me last October when I knew we were entering our busy season, knowing that my help would have been welcomed, but realizing that I could not juggle these two lives as I had thought I would do prior to Owen's arrival.

Last October, Kelsey was attempting to manage Grounds for Change and not only deal with the busiest season of the year, but trying to catch up from the two weeks he spent at the hospital and then the short hours he put in after Owen came home, attempting to keep me from going insane. We were both tired, stressed, and scared.

I find myself reflecting on all of this, not because I feel we are "in the clear", because we're not. Our life has permanently changed and has been infused with challenges that most parents will never know or understand. I am reflecting because as I recently discussed with my friend, Angie, who herself has experienced tremendous challenges the last few years, and who could relate to my sentiments, I can now look back on the last year and say, "We got through that. It was incredibly hard and scary and it is behind us now." It IS behind us. The constant fussing. The vomiting. The total uncertainty. The struggle to shift identities. I think back to the constant weight checks, visits to the pediatrician, the daily ACTH shots, the NG tube, the PEG tube surgery, the MRI, the myriad EGGs, the GI tests and appointments, the in-patient stays for neurological and developmental assessments and the day our suspicion that Owen was visually-impaired was confirmed (one of the worst days of my life). All of this is behind us.

My new role as a stay-at-home mom, which a year ago was so foreign to me, is now a shoe that really fits. In fact, I love it and am thankful everyday that Kelsey and I were able to build Grounds for Change to a point where I can be home with our children. I take walks with friends, fit in a bit of yoga here and there, garden, cook, can and am able to get to all of the household chores and errands that we never seemed to have time to deal with when both of us were working at GFC. Most importantly, I am able to devote the time and energy to Owen that he both requires and deserves, advocating for him on the phone, at his appointments, connecting with other parents who face similar challenges and who are willing to share their stories and advice. I get to be with him each morning when he wakes up, and sit with him in the rocking chair while I wake up and sip my cup of coffee, watching him stretch and come to life. Although it is not a path I envisioned for myself prior to Owen's birth, I now realize that I am so fortunate to have this opportunity.

And Kelsey gets to be the business owner that he told his parents at an early age he wanted to be. It's not that we didn't work well together at our little business, but I believe that the separation of our roles has enhanced our respect for each other. I am amazed at what Kelsey can juggle each day and at the thought and attention he puts into all of the business decisions he makes on a regular basis. He tells me that he is thankful for the work I do at home, caring for Owen and managing the household miscellany, making it easier for all of us to enjoy our time together as family.

So as I reflect on the past year, I realize that we've come so far, made great progress and I am thankful we are where we are at, this October.

Thank you to all who have checked in on us and who have been so supportive of our family this last year. Huge love to all of the mamas out there who I've connected with since launching this blog, who tell the stories of their sons and daughters with love, grace, honesty and who continue to give me the strength to believe in the possibilities.

----

"Life is either a daring adventure or nothing at all. Security is mostly a superstition. It does not exist in nature." - Helen Keller

Our traveling friends.

2008-09-25T11:34:00.000-07:00

We have two friends, Pam and Cinnamon, each on two separate journeys across various parts of the globe. Pam left her long-standing career at Parsons Public Relations, THE best, woman-owned and operated, sustainable, green business-focused PR firm in Seattle (in my humble opinion) on sabbatical in early September and will be traveling for 10 months throughout Nepal, India, Laos, Vietnam, Poland (to meet family), and then parts of Central America. Cinnamon, a single mom, wanted to give her two children, both in their early teens, an experience living and working abroad. They left in August and are traveling through various parts of South America for a year.

And we continue to enjoy Owen (whose seizures are still down to just 6-10 a day), grow babies, bake bread, can preserves, grow our sustainable business and enjoy our life here in Indianola. That said, the current situation with the economy and the mortgage/lending crisis has us very, very worried. And I continue to dream of the possibilities for my children, this country, and the planet with an Obama/Biden administration.

A good time for good things.

2008-09-11T20:34:00.000-07:00

We've had several people ask about Owen the last week or so, saying with a bit of hesitation that they've been checking the blog but haven't seen any new updates. I admit it... I have been a bit hesitant to post, not because things aren't going good, but because things are going great. With so many unsuccessful attempts at controlling O's seizures, I am cautiously going to say that the diet seems to be working. Actually, right now IT IS WORKING. His seizures continue to be down to just 6-12 a day. Before we left for Stanford, they had crept back up to over a hundred a day. He continues to tolerate the diet perfectly with no adverse effects. We check his urine every day for ketone levels, pH levels, specific gravity (hydration) and blood (there is a slight risk of kidney stones which is detected by blood in the urine). All of the numbers have been perfect. He is sleeping much better - we ALL are sleeping better - and he is overall much more content. All of the hours on the phone since June, the coordination during the weeks leading up to the trip, the travel time, the hospital stay - it was all so worth it for the peace that Owen is currently experiencing. We are hopeful that it will continue.

We had the 17 week ultrasound today to peek in on Owen's sibling. Although I am a full 17 weeks as of today, all of the measurements came back at 18 - 19 weeks gestation, which means that the baby is growing very well (despite the fact that, according to the scales at the OB/GYN's office, I have only gained one pound in the last five weeks). Our OB/GYN said that based on the results of the ultrasound screenings, my blood draw results and my specs (weight, blood pressure, etc) all of our "options" are open, meaning that the pregnancy is healthy and an unmedicated birth is still a possibility should we choose this route. She wants to do another ultrasound at 32 weeks just to make sure there is adequate blood flow through the cord and an appropriate amount of amniotic fluid - two things she wants checked as precautionary measures. We so appreciate her attitude - not overly concerned about performing a lot of unnecessary tests, but especially watchful and attentive to this pregnancy given O's history.

During the ultrasound, the baby was kicking and bouncing around all over the place, just as O was at the same age. We saw legs, arms, fingers, toes, a lovely head and spine, all sorts of organs, including the four chambers of the heart and... the equipment that can only belong to a little boy. Yes, Owen will be having a little brother come early February (my new due date is February 8th). We had no preference at all one way or the other, but it is fun now to be able to talk about "him." And I have to admit that I have become quite smitten for my first little boy and excitedly welcome a second. I guess it is the "mamas and their boys" thing that I've heard people talk about. Or perhaps it is just that I love being a mother? Kelsey is thrilled that finally, the boys will significantly out number the girls (including Dutch, the score will soon be four to one).

We had an excellent visit with Laura and have added some photos from her stay as well as from our trip to California/Stanford. Included also are some photos of the fate of the 80 pounds of roma tomatoes that Janet and I made into red sauce and roasted tomatoes earlier this week (which we purchased at the Puyallup farmer's market for $70!). They are now sitting quietly in the freezer, all 50+ pints, along with the 50+ pints of pesto and several quart bags of frozen berries from our garden. Bring on the winter rains!

I am feeling great now that I am entering the 18th week of pregnancy and all three of us are enjoying being home again. We've been busy catching up and getting back into our routines the last couple of weeks. We are so grateful and appreciative of the incredible support we have received from all of our family this last year, but especially the last several weeks. We had so much support for getting O started on the keto diet and for making the trip to Stanford and when we told all of our family the news about our pregnancy, not knowing fully what the overall response would be, we were amazed. The excitement, hope, encouragement, support and love came from every direction. We are so fortunate and blessed and their support continues to enrich our lives.

The weather has been glorious since our return - 70 to 75 and sunny - and the forecast for as far as they can predict is for more of the same. The big leaf maples are turning, the pumpkins are almost ripe (bring on those recipes!) and the air smells of fall. It is our favorite time of the year.

Peace and love,

S/K/O

Homeward bound!

2008-08-28T09:07:00.000-07:00

It is 9:00 am and we are in the final stages of packing up our hotel room. O tolerated the 100% ketocal PERFECTLY and is about to start his second day of the full strength formula. Dr. Olson, the NP and dietician were all so surprised yesterday morning to read the nurse's report from Tuesday indicating that Owen had no problems whatsoever with the 2/3 strength formula. As I've mentioned, this is very atypical for kids who have a history of severe GERD. And now he's passed the 100% test and we are free to leave for home.

Last night was so great. Owen had one period of about twenty minutes where he had probably 10 seizures, but on two other occasions, fell asleep with NO seizures. This has not happened since early May. We all got about seven hours of sleep. Remarkable.

I'm always so hesitant to feel such great joy and relief when things seem to work for Owen's epilespy but, you know, I have a really good feeling about this diet and believe that it will work.

And now our sights are set on Indianola...

With much love and appreciation for everyone's support,

S/K/O

Our little peanut.

2008-08-26T17:07:00.000-07:00

Owen's metabolic study yesterday morning revealed that he is running at 170% of what his age/weight calculations predicated - so almost double what would be typical for a kiddo his size and age. It was a perfect study - he was sleepy and laid under the ventilated hood, still the entire time while they took measurements of oxygen consumption and carbon dioxide production. The numbers are quite accurate and give us a really good idea what his RMR (resting metabolic rate) is. This number is important in the keotgenic diet since we want him to gain weight on the diet while also remaining in a state of ketosis. This number surprised even O's dietician and is obviously why we've not been able to get him to gain much weight the last three months with the formula and volumes we were using from our nutrition consults at Children's.

After a day of fasting and two days of well below normal caloric intake (as we titrate the ketocal up to the levels he needs) he is back down to fifteen pounds. I appreciated the fact that Lisa, his dietician, referred to him as a "little peanut." I like that. His genes, his high tone and propensity for movement play into this RMR number. Kelsey and I both have high metabolisms - Kelsey's is evidenced by his need for two breakfasts, a mid-morning snack, a big lunch and even bigger dinner and mine was confirmed during my pregnancy with Owen when I had to measure my glucose for two weeks. I burn through calories fast. We were happy to hear that Owen's movement - he is all of the time squirming around, waving his hands, moving his feet - is a good thing. It will help to keep his muscles strong, help his respiratory system and help overall to keep things moving through his system. We were told today that Owen is definitely not one of those children who "just lays there." That's our little guy!

We get to leave the hospital tomorrow. Ahhhhhhh. Owen is such a champ and is tolerating the new formula perfectly. Since the ketocal is so high in fat, oftentimes, especially with kids like Owen who had severe GERD (reflux) in the past, things move much more slowly through the body, are less able to be absorbed and end up "backing up." Imagine how you'd feel if you ate bacon, cheese, heavy whipping cream, eggs and butter for your meals each day. Truly, if Owen was not tube-fed, this would be our biggest challenge - getting him to eat the amounts of fats he needs to keep him in a state of ketosis. Lisa said that this is the primary reason why the diet fails in older kids - they just refuse to eat these foods in these quantities. We have heard repeatedly the last two days that, given his seizure activity, it is a blessing that Owen has the tube as it allows us to easily administer the ketocal - a perfect formulation to keep him in a state of ketosis while providing him with the nutrients and calories that he needs for continued health and growth. I never expected to hear the tube referenced in that way, but we'll run with it.

Dr. Olson has requested that, in exchange for him discharging Owen tomorrow morning, shortly after O starts the full strength ketocal, we stay in Palo Alto so that should he not tolerate this, we are close by. We happily agreed as overnights in the hospital are so rough. Nurses come in and out of the room regularly throughout the night, checking on their patients. Monitors go off. The air is recirculated and recirculated and recirculated. We will be staying at our hotel Wednesday night, perhaps celebrating with a dinner out in Palo Alto (so many great restaurants here!) and will leave for home early on Thursday morning, arriving in Indianola (oh, Indianola!) late on Friday.

O's seizures continue to decrease in frequency. I was just talking to his nurse, giving her an update on his last attempt to fall asleep for a nap. Typically it would have taken him 45 minutes to two hours to fall asleep and he would have had anywhere from 20-40 seizures. He just now fell asleep within 15 minutes and had three seizures. Cautious optimisim...

Sleepy head

2008-08-26T04:17:00.000-07:00

It is 4:15 in the morning. I am laying on a plastic cot in Owen's hospital room which he shares with a 14 year old girl, Louiza, who just recently had a tracheotomy due to her increased inability to clear her upper respiratory pathways. Louiza also experienced a birth injury and has a wonderful, loving family, including a younger sister (by two years) who doted on her when she came to visit today. Louiza's mom, within an hour of us settling into the room, had reached out to us, told her story, written down the name of a close friend in L.A. who has a child who has successfully been treated with the ketogenic diet and offered any support she might be able to provide while we are here. This is how it is in this newest community that we belong to.

I am awake because Owen knows he is in the hospital. He has so far slept for two hours, in one hour increments. I have slept for perhaps a half an hour. This is on top of the three fairly sleepless nights we had at the outset of the trip due to Owen's newest set of teeth coming in. Kelsey is sleeping at the hotel room tonight - I get my night of luxurious, uninterrupted sleep tomorrow night. I think the last time I had more than four or five hours of sleep was before our trip to the Methow Valley in mid-May, before Owen's spasms returned.

Owen started the ketogenic diet this morning and so far, everything is going very well. His seizures are, in fact, down by about 50% as of this evening. We were very encouraged by our conversations with Dr. Olson, the nurse practitioner and dietician during our various consults with them today. There is such a good chance that this will work, either entirely eliminating O's seizures or reducing them significantly. Dr. Olson's goal is the same as ours and he sees it through with many patients - get the diet to work and then wean off the medications. We are being cautiously optimistic as there can be the "honeymoon" period even with the diet as the one that we saw with the Vigabatrin (which is the first thing Dr. Olson said we should wean off of should the diet work) where it works for a few days or a couple of weeks and then the spasms return to their previous levels. But the fact that we are seeing a response is good news indeed.

Many of you have asked about oral feeding or continued exploration of this while on the diet. The dietician raised her voice and said, "No, no, no," when we asked about this today. She reminded us that we had prioritized seizure control when we chose this diet and said that any little bit of food thrown into the mix could cause a spike in seizures (we had read this) and set Owen back. It is true - the seizures are our primary concern and are what is diminishing Owen's quality of life as well as ours. Getting him to take food orally is not a high priority and, as the dietician said, many parents struggle with this issue but are able to get their children to eat orally once they are off the diet, even after a couple of years. If we can get the seizures under control, I can live with that time frame and deal with this issue when the time comes. When you are the parent of a child like Owen, you realize... one thing at a time.

We had a wonderful visit with Mac and Margery (Grandpa Marshall and Nai Nai) and were sad to leave as we always feel so at home there. They sent us off with goodies from the Santa Rosa farmer's market which we had picked up the day before as well as plenty of other yums made with love. I don't have access to the camera right now, but will post some photos when we return home.

Our hope is that O continues to tolerate the diet and that we can begin our journey home on Wednesday afternoon. He started on 1/3 strength ketocal (formula for tube-fed keto kids) today, will go up to 2/3 strength tomorrow and full strength on Wednesday. If he does not tolerate the increased strength formula well, we may be here as late as Friday as we take the process slower. This would be such a bum deal since Laura gets into to Seattle on Friday (she planned her trip before we knew we would be having to make this trip during these dates). But we're hopeful that everything will work out fine...

Thank you for all of the emails and phone calls. And congratulations to Spencer and Elizabeth in Indianola who had a baby girl on Saturday night!! Big thanks to Kelly for calling and spreading the cheer way down here in Palo Alto. As I type this, I'm thinking of new Indianola babies, our garden, the beach and Dutch. It will be so nice to get back home.

And we continue to grow all sorts of goodies.

2008-08-11T19:10:00.000-07:00

Finally... our garden is doing great and is producing all sorts of yums and showy blooms. I found a wonderful variety of pickling cucumber from Territorial Seed that I planted this year. I really like the pickling varieties as they stay small and sweet. The figs are almost ripe and have already set the second round of fruit. We have not yet, within a season, been able to harvest this second crop as it always turns cold before they can ripen. Perhaps this year...

I am also growing an heirloom variety of sugar pumpkin that I am pretty excited about. They are on the smaller side and are lovely from the outside with deep grooves and an intense shade of orange, and are fleshy and sweet on the inside, perfect for pies and all sorts of goodies. I'm open to receiving all recipes that include fresh pumpkin - even after distributing some around Indianola, we're going to have quite a few to play around with. Pumpkins always make me think of my sister, Laura. I believe it was back around 1980 that my parents, on our several acres in rural Johnson County, Iowa, where we grew most everything we ate, grew an enormous pumpkin. They sent a photo into the Press-Citizen newspaper of my sister sitting on top of this orange mammoth. She would have only been three or four years old and I think this pumpkin weighed close to 80 pounds. She could have easily fit inside. I'm going to have to dig the photo up, scan it and post it sometime around Halloween...

Our two bulb beds have really been producing wonderful flowers this year - several varieties of dahlias, gladiolas, bells of Ireland, purple coneflower, some stunning tigridia and a number of other bird and bee friendly flowers. I was out in the garden the other day and watched two Rufus Hummingbirds fight over one echinacea flower. I had to laugh - there were probably a hundred other flowers for each of them to choose from.

BASIL! We have a serious bumper crop this year and I believe we'll have enough pesto to survive the long, wet, dark winter. There is truly nothing like pulling a jar out of the freezer in February, thawing it and coating a plate of pasta with the essence of summer. Kelsey does his "selective pruning" like a true basil master and I was surprised after he was done to look at both the bountiful harvest and the still full and thriving basil garden. It looks like we will get three very large harvests this year. The evidence of the first is in the photo with the red cooler - we spent three hours on Friday night, plucking leaves off of stems while watching the summer Olympics. Kelsey then made over twenty, eight ounce jars of pesto on Sunday.

So there are some people who like to cook and who can pull out a recipe book and recreate recipes that guests enjoy and want to know more about (this is me). There are then the people who want to learn more about the culinary arts and who enjoy cooking enough that they go into this as a profession to make a living. Then there are people who are true food artists, who LOVE food and who can't NOT cook - all of the time. The latter is our friend, Joe. Joe and Sara recently moved back to Seattle and came out for an overnight stay here in Indianola last week. They always bring so much great food with them, this time we said just bring yourselves... I did not go to the grocery store or plan anything special. From what we had laying around, including a few leftover items from the fridge, Joe cooked up an amazing meal. A fresh Asian veggie salad, spicy grilled salmon with basil/peanut sauce, and grilled spring onions and zucchini which we had over lovely, basmati rice infused with cardamom and other spices. And I thought he might be able to do something with the bread, cheese and tomatoes that I initially brought out...

I was surprised, given the years we've spent apart from them and given how our lives have changed, that we fell so easily back into our close friendship, talking and laughing in the garden and over dinner. It is good to have them back. And they loved Owen... and loved Owen... That always feels so good.

I wanted to make sure I mentioned another "growings-on." I am fourteen weeks pregnant - due on Valentine's Day. We are very excited for Owen to have a sibling and know that this will be good for him AND for us. We're doing most everything differently this time, including having our second at a hospital (Swedish) and finding out the sex of the baby the first week of September. These very much feel like the right decisions for us. While our current OB/GYN assures us that this is not a high risk pregnancy and that we should not at all expect any complications, what we've learned the last year is that Owen's injury most likely occurred during labor/delivery and we want to make sure that we have all of the available technology readily accessible during our next birth experience.

We leave next Thursday for Stanford and will spend a day and a half visiting with Mac and Margery (Grandpa Marshall and Nai Nai) before Owen is admitted to start the ketogenic diet on Monday the 25th. I know I've asked for this a lot this last year, but please send him your good thoughts. We really, really, really want this to work from him.

My next posting won't be until after Labor Day, after we return from Stanford, after Aunt Laura has come to visit (!!!) and after we've learned whether Owen will be having a brother or sister. I'm sure it will be a good, long posting.

Until then, enjoy the last rays of summer!

--

"A garden is evidence of faith. It links us with all the misty figures of the past who also planted and were nourished by the fruits of their planting." - Gladys Taber

Sweet things to share...

2008-07-28T22:21:00.000-07:00

1. A boy and his uncle.

2. Three Beautiful Things.

Gains and Losses.

2008-07-26T17:45:00.000-07:00

I had a great birthday week, gaining a year on paper on Thursday. At thirty-six, I am now closer to forty than thirty yet still feel somewhat closer to, say, twenty-eight. Kelsey surprised me with a stay at the Chevy Chase Beach Cabins on Discovery Bay (outside of Port Townsend) last weekend. We've decided to make this stay an annual family ritual. Cabin #4, the grounds, the staff and owners and the views were delightful. I had two birthday lunch dates early in the week, a combo birthday dinner on Wednesday night and a full day of fun in the city with my hubby on Thursday. If you live in Seattle, or are visiting and want a selection of seasonal foods, woven into dishes that will truly awaken your palate, you must check out Restaurant Zoe. Seriously yum. I don't think I've ever celebrated my birthday seven days in a row, but hey, who's complaining? Last year on my birthday, we received the welcomed news that we'd be able to take Owen home the next day after a LONG, 12 day stay at Tacoma General. We spent my birthday packing up our guest room at the hospital and preparing to take Owen home. Stark difference.

We had to put our cat, Mo, down on Sunday after 14 1/2 years. It was terribly hard to say goodbye after having to do so to her good friend, Siva, just a couple of months prior. Mo had late stage kidney failure and had dwindled to a mere seven pounds.

Owen is on a new seizure med, Keppra, and so far, it is working very well in conjunction with the Vigabatrin. He is sleeping great, smiling all the time and seems quite peaceful. His vision has improved over the course of the last few weeks and he now smiles pretty consistently at two things... his daddy talking "silly" to him and me quietly smiling at him from his preferred right side.

Owen also got his first wheelchair a couple of weeks ago and now has his own, stylish set of supportive wheels.

We leave August 22nd for Stanford to get Owen started on the ketogenic diet. He will be admitted on the 25th and stay through the 27th. We'll be fitting in two quick visits with Grandpa Marshall and Nai Nai in Santa Rosa on the way down and on the way back up, before racing back to Indianola to connect with Aunt Laura who arrives on the 29th.

Not much else to report and perhaps this is good? The garden is doing great - we have a basil forest (in preparation for Kelsey's fall pesto production), our tomatoes are ripening, we finally have cucumbers and squash and are going to have a bumper crop of heirloom sugar pumpkins which we'll distribute throughout Indianola.

Hope that the rest of you are enjoying your summer...

--

We can't change the cards we're dealt, just how to play the hand. ~ Randy Pausch

--

One year old...

2008-07-16T14:19:00.000-07:00

We wanted to share some photos from Owen's birthday weekend...

Happy Birthday, Owen!

2008-07-13T11:00:00.000-07:00

Here's a little something in your honor...

Along for the Ride.

2008-06-25T10:37:00.000-07:00

I know that there are a number of you who check in on us, who also have children with cerebral palsy, and I think you will find the essay below to be so beautiful and true - as well as intelligently written (although I hope that those of you who do not have children with CP and who choose to read this long essay, will also enjoy and appreciate the subject and style). The essay is from Brain, Child: The Magazine for Thinking Mothers and is entitled, Along for the Ride. I read it and said, "Yes, yes," and laughed and cried and laughed and cried. Thank you, Melissa, for thinking of us once again and for sending this our way.

Our happy list...

2008-06-23T19:37:00.000-07:00

Owen had his PEG tube replaced with a Mic-Key button today. It was a 15 minute procedure although he was anesthetized for the process as the PEG removal can sometimes be painful. What a sweet swap! The 12" long PEG tube was always getting caught on things, was unsightly, and impossible to "tuck" into his clothes. The button is great and is no more than 1/2' high and about 1' wide. We just plug the tube in and out of the button as needed. It's almost like a second, higher profile belly button. Since part of the procedure utilizes a scope, I requested that the GI doctor look for any signs of scarring in the esophagus from the prolonged, severe GERD (reflux) and for any potential ulcers in the stomach from the prednisone. The photos are gorgeous (yes, I am referring to those of my son's stomach, esophagus and entry into the intestines) - pink, smooth and perfect. Dr. Whabeh said everything looked just as it should and gave Owen a clean bill of health. A clean bill of health!!!

Oral feeding progression. Owen loves cantaloupe and watermelon. Partly, I think, because he is teething like crazy. His two bottom teeth are about to pop and we discovered last week that he loves to gnaw on cold, sweet melon. He also allowed me to give him a significant amount of water today by mouth. These are HUGE progressions for us.

Weight gain. As I've mentioned in previous recent postings, Owen's weight flat-lined for two months, from the day he got the PEG tube until about three weeks ago. He was hanging out at around 14 lbs. At today's weigh-in at Children's, with his t-shirt and pants... 16 pounds. Oh yeah. Eighteen pounds by one year of age and he'll be in the third percentile - the first time he will have been on the charts since he was about three months old. We have three weeks until Owen's first birthday.

Smiles... Oh my. The last few days, Owen smiles regularly, predictably and INTENTIONALLY. He smiles when you say hello to him, when you sweet talk to him, and when you laugh. He focuses, pauses and then the smile begins, a bit lopsided, curling up from the left side of his mouth and spreads wide across his face to his eyes and ends with a smile so big that his mouth is open wide. It is so adorable it makes me crazy-happy. Kelsey can't stop taking photos.

Keto diet. No word yet from Dr. Sotero or his nurse. Strange, given their usual responsiveness, yet we suspect that they are trying to either locate a private RD to work with or have convinced Swedish to move forward with bringing one on to help manage the diet. Our understanding - through the grapevine - is that Dr. Sotero prefers to have control over the treatments his patients receive and since he was the PI on a keto study at Children's and knows this diet well, it would also make sense that he would want to manage Owen's care himself. It has been a week since I left the second message with Patti (Sotero's nurse) and if I don't heard back by Wednesday, I will call again. But this issue feels less urgent as...

We made a mistake with the Vigabatrin. It actually works. The first two days that we gave it two Owen, we crushed the calcium-size pills, mixed them with water and administered the solution to Owen, immediately. This is when we saw the seizures decrease by about 90%. Then, after a couple of days, we changed things a bit. We would get busy prepping Owen for bed and would split the pill in half and soak it in 5mL of water while we got everything else ready, sometimes taking 10-15 minutes before giving him the solution. This is when we noticed the seizures returning - full-force. Kelsey said to me on Thursday of last week... "What if soaking the Vigabatrin makes it ineffective?" So we went back to crushing it, adding water and administering it to Owen immediately. Since Friday, Owen's seizures have tapered to one or two before he falls asleep (down from 20-40). He falls asleep so much faster, is sleeping more soundly, is smiling more, and has longer alert periods - all since Friday. I read online this last weekend that Vigabatrin becomes "chemically unstable" when left in a solution and that it must be "administered immediately" when mixed with water. We should have known this, however, it was not on any of the accompanying paperwork that you get with prescriptions. The Vigabatrin works!!!!!

Vigabatrin's effectiveness for Owen is a big, big deal - it is not like ACTH in that it will only "work" for a short period of time. Over a longer period of time, such as a year or two, it may lose its effectiveness, but for now, we can count on it to work for him. We won't know for another couple of weeks whether it will completely eliminate the seizures as it takes a few weeks at the full dose to see its potential, but it has already changed our lives dramatically. We will still proceed with the keto diet in the future, but will prioritize weight gain (which is minimal on the diet) and enjoy our happy Owen.

This is the best it has felt to post in a long time. Thank you for all of the good wishes, thoughts and crossing of fingers and toes. It helped - tremendously. We really needed these positive changes and regardless of the challenges we may face in the future, right now, today, things feel really good.

Year of the Slug.

2008-06-17T17:59:00.000-07:00

As if the persistent, cool, wet, March-like weather wasn't enough to knock the momentum out of most of our veggies this year, on top of this we have had to fiercely contend with THE creature who thrives in such conditions (as opposed to Kelsey and I who start to talk endlessly about tropical vacations and get exceedingly grumpy when we've not has sufficient sun exposure), the ones who can do so much damage to our precious seedlings in such a short amount of time. I was in Valley Nursery the other day and I swear everyone had at least one, super-sized jug of Sluggo in their hands, and that desperate look in their eyes that those of us in Western Washington get when we realize that time is running out. Those seedlings that haven't been mercilessly chomped on by the hidden army of slimy, slow-moving soldiers, are seemingly suspended in time. The zucchini, cucumbers and tomatoes look exactly as they did in early May. If the weather doesn't turn warm soon, our plants will be mere adolescents when their time comes and the growing season ends in early October, the bounty and beauty of all of that potential, youthful energy, never realized.

Owen could use some additional rays, too. In the reading I've been doing on the ketogenic diet, I've come across data published last year that suggests that almost half of the epilepsy population has a significant Vitamin D deficiency. This is mostly due to the effect that seizure medications have on the body's ability to metabolize this critical vitamin.

It has been so difficult these last few weeks - significant sleep deprivation, the failing of yet another seizure drug (Vigabatrin), and seizures now numbering 120-150 a day. They continue to occur just as Owen is falling asleep. It took six hours, between 6:00 pm and 12:00 am, to get him to fall asleep last night. It is so difficult to watch - he's so exhausted and so desperately wants to sleep, but can't.

We are running out of options to control these things - seizures which kids like Owen don't grow out of until they are 3 or 4 years old (and then morph into equally harmful seizures such as grand mal). This is a scary place to find ourselves... That said, what I believe to be our best option, the ketogenic diet, is something we've obviously not yet tried and are currently aggressively pursuing.

We've run into a bit of a snag with finding a site/staff to oversee the diet as Children's Hospital has recently lost one of two epileptologists and two of three dieticians trained in the ketogenic diet. Because of this, they are not currently accepting any new patients into their program. Dr. Sotero, Owen's neurologist, is new to Swedish Hospital (he is the pediatric epileptologist who left Children's) and has not yet been granted a dietician to help manage keto kids. So just today, I requested a referral from Dr. Sotero to either OHSU in Portland or Stanford in the Bay Area. Both have highly reputable pediatric epilepsy centers with associated ketogenic programs. Owen would need a 2-4 day in-patient stay (depending on which facility we can connect with) and then the diet could be managed remotely through phone and email. We are waiting to hear back from Dr. Sotero about moving forward with this new plan.

A few of you have asked to know more about the ketogenic diet. The Charlie Foundation and "The Ketogenic Diet: A Treatment for Children and Others with Epilepsy," by John Freeman at Johns Hopkins University are both excellent resources. Wikipedia also has an extensive entry on the subject.

To help boost my spirits each day, reminding me that there is more going on out there than the gardener's curse of La Nina and Owen's constant seizures, I changed my homepage to DailyGood.org. Check it out if you want more goodness in your life. Speaking of goodness, I had to include this recent photo of Owen, in one of his peaceful moments.

Thankfully, we have had so many wonderful visitors and goings-on the last couple of weeks to brighten our spirits. The Hudgens' came out from Chapel Hill and spent four days with us. We offered to have Cate (holding hands with Owen) split her time between Chapel Hill and Indianola, but her parents weren't up for that. Chris and Dani graced us with their presence (and cooking - damn, those were fine burgers) and both Dani (cuddling on the chair) and their dog, Charlie, made a friend in Dutch. Andrew and Robyn and the twins were over and we set the twins lose with our camera. The 150+ shots they took are fabulous - I had to restrain myself from including more than just the peace offering shot. My Great Aunt, Velma, and second cousin, Dan, visited us this last week. I had a nice day away in the city with them on Friday, when we ate lunch at the infamous Voula's Offshore Cafe (posing with one of the owners who was featured on the Food Network piece). On Saturday, Tobin Kurtzman, (his mom, Tricia helped us with Owen's NG tube) celebrated his first birthday - a miracle, for sure. Sunday, we soaked up the sun in the garden and celebrated Father's Day.

One last note - to all our friends and family in Iowa City and surrounds. We are so glad you are all safe and are wishing you drier days. Kelsey and I have been so shocked to see photos of so many familiar places now flooded.

----

"She left pieces of her life behind her everywhere she went. It's easier to feel the sunlight without them, she said." - Brian Andreas

Odds have it.

2008-05-29T19:59:00.000-07:00

We had Owen admitted yesterday morning - at 7:30 am - for a 24 hour EEG/video monitoring. His seizures continued to worsen over the weekend, with his/our sleep diminishing to 2-3 hours a night.

I really thought that the activity we were seeing was that of myoclonic seizures, given their manifestation, but the interpretation of the 120+ seizures over the course of 21 hours revealed that the infantile spasms are back. Ugh.

Owen and I stayed overnight at Swedish Hospital, Kelsey stayed in the city with Kevin and Kathryn. Janet came for the first day, Leslie joined us for the second. Only one parent is typically allowed in the rooms on pediatric units, something that I'll never understand. I would trade sharing a single, worn out, sunken-in-the-middle cot with my husband for the support and comfort that having him close provides. Owen and I slept for a total of 45 minutes the entire night. Seizures and a heightened awareness of unfamiliar surroundings kept him up most of the night.

Owen and I have slept a total of about 21 hours in the last seven days - Kelsey only a handful of hours more. I do my best to try to buffer Kelsey so that he can get up at 5:00 am each morning to get into GFC somewhat refreshed. Lately, however, Owen has been most comfortable sleeping in bed with us - Kelsey's sleep then directly affected by the bouts of seizures. Neither one of us minds, however, as we are warmed by the fact that Owen knows we are there and is comforted by being with us. He truly relaxes and feels safe - you can sense it in his body language and the fact that he much more readily falls asleep, despite the seizures.

We returned home this afternoon, weighted down with the recurring spasms information. I find that I am not surprised, but certainly saddened. Owen has endured over 80 ACTH injections, disruption to his overall sense of well-being, a hindering of any possible development since last October (six out his ten months of life) and six figure hits to his lifetime health insurance maximum because of these seizures and associated treatments.

We are moving forward with Vigabatrin - only available in Canada/Mexico and not FDA approved in the States. This is one of a handful of reasons we chose Dr. Sotero as he is willing to prescribe this drug which is the treatment of choice - before ACTH - in Canada, Mexico and Europe. In the next few weeks, we will also be moving forward with the ketogenic diet which we are very excited and hopeful about. There have been recent articles in the Seattle Times and New York Times outlining the benefits of this diet. We will try to work through Children's Hospital for this as there are two nutritionists on staff there who are skilled with this highly precise diet. There are Bibilical references to the diet and it's use became highly touted in the early 1900s on the East Coast, falling out of favor when certain pharmaceuticals like phenobarbital, a less effective treatment, came on the scene in the 1940s.

We will continue to keep you all in the loop via the blog and, in the meantime, appreciate any toe and/or finger crossing, sacrificing of chickens, saying of prayers, giving of blessings...

On a totally unrelated note, my cousin, Jesse, was out here last week from Iowa City to attend the Sasquatch Music Festival with my brother over the holiday weekend. Jesse, we loved having you here for a day before you left for The Gorge. We missed saying goodbye due to our stay at Swedish. We love you very much. You, and your music, are such a gift.

Going solo.

2008-05-25T10:57:00.000-07:00

Owen and I went to the Port Townsend farmer's market on Saturday. Kelsey had planned a ride with a friend on Bainbridge, so I decided it was a good time for me to venture out with Owen, solo.

I love Port Townsend. Their farmer's market is the best on this side of the Sound. The sun is always shining (as it always seems to be in Indianola). You can walk to get your groceries, walk to go out to eat, walk to see live music, walk to get a cup of coffee (Grounds for Change, of course), walk to the beach, walk to the many parks. Did I mention that everything is walkable? There are wide bike lanes, a public trail that meanders through town and so many wonderful green spaces. Their summer music festivals are incredible.

We parked by the farmer's market, stopped to see our friend Chris from Serendipity Farm, watched some live music, strolled around the market some more and then spent an hour and a half walking the hills of PT. It was a glorious, warm and sunny day. Owen was stylin' in his new shades and made everyone smile. He did great.

At home, in addition to our joys, we continue to have our daily struggles. Owen's weight is fluctuating - he gained a few ounces once things settled down after the tube (7+ weeks after, unfortunately), but continues to lose a bit, then gain a bit. He is now below 15 pounds again. We have incorporated rice cereal into three of his daily feedings to try to thicken things up and make them stay down. Overall, this seems to be working. I feel like we are stuck, however, in this place where he's not growing much and his stomach is not expanding to hold more food, yet we can't get enough food down him to make either of these things happen. It is so incredibly frustrating. We have been told to keep him on the pump all of the time, but he can't move things through his system efficiently enough, so it all eventually backs up anyway.

We are decidedly against any further interventions in the feeding realm. They could perform a Nissen procedure at Children's where they tighten up the esophageal sphincter (the top of the stomach) so that the contents are forced to stay down. The surgery itself is a major one and the side effects can be very serious. The GI docs could put Owen on a motility agent, to help move things through his system more efficiently. Again, the side effects are really horrible. So we will continue to do the best we can, feeding Owen from his tube, keeping him comfortable at home and keeping him out of the hospital.

The most recent development is new seizure activity. Not spasms, thankfully, but evil in their manifestation, nonetheless. For Owen, his myoclonic seizures happen right as he is falling asleep. This morning, he tried to fall asleep for an hour and half, each time he'd jerk awake just as he was going into deep sleep. He then cries and cries. Its horrible to watch as he gets so tired and desperately wants to sleep. This new seizure activity is not surprising as we've known for some time that Owen will be faced with differing types his entire life. His neurologist increased his dose of Zonegran last Monday and told us to give it two weeks to see if this helps. We're keeping our fingers crossed - again.

Despite these challenges, Owen's overall demeanor continues to improve. He's more calm, coos more, and is tolerating so many things, so much better. Our lives are easier because of these improvements and for that, we are very, very grateful.

Mmmmmm. Goooooood.

2008-05-18T21:47:00.000-07:00

We had forgotten how liberating it is to go on vacation. A week in the Methow Valley. Sunny and warm. Hikes in the Ponderosa Pines. Wildflowers, songbirds and morel mushrooms. The sweet smells in the fresh of the morning and the songs of the tree frogs at night.

Happy, happy, happy.

Our Siva: August 1992 - May 2008

2008-05-04T10:17:00.000-07:00

We finally let Siva pass yesterday, calling in a mobile vet to help us bring her peace. She ached all over from arthritis, her body was riddled with lypomas (benign tumors), she was 90% deaf, had lost a good deal of bowel control, had started to lose her appetite and had developed an intestinal infection. She was our first baby - Kelsey and I adopting her when she was a mere 6 weeks old, her vision not yet sorted out and her belly full of worms. Her parents weren't papered labs and she didn't make the cut with her first family as a hunting dog. My manager at the hospital that I was working at in Iowa City asked if anyone wanted a lab puppy - he couldn't wait to get her off his hands.

Kelsey and I had been dating for a year and a half - he was 18, I had just turned 20. I brought her into the house wrapped up in a blanket, rolling her out onto the floor in front of Kelsey as he worked on a midterm paper. She stole our hearts forever.

Siva hiked with us in mountains across most of the Western US, on swampy and mosquito infested trails across the Midwest, and swam in more lakes and streams than we will ever be able to count, although in recalling "The Siva Years" the last day or so, we've certainly tried to revive memories related to each and every one of them. She was a master frisbee dog until she ruptured her first ACL our second year in Portland (1997) and the second would follow suit a few years later on Bainbridge Island (2001). Up until a couple of years ago, she would have people shaking their heads in disbelief at how long she could swim in exchange for a stick tossed into the water. The tosser's arm would tire before Siva's passion and stamina for the retrieval process waned. She was an amazing companion and we will miss her dearly.

For those of you that knew her, we are putting together a slide show and will post this sometime soon. Many of you are featured in the photos, another testament to the many friends that Siva made during her almost 16 years.

Each time I listened to DogSong2 by the Be Good Tanyas the past couple of years, I knew it would remind me of Siva someday...

Out in the trees, dirt on our knees
We laid him down forever
And on that hill there it was still
As in the ever after

He lays his rest we knew it best
To lay him down so gently
And now he sleeps where moss does creep
And no more is he with me

The birds did cry, and so did I
To think of life so lonely
And in their song I heard it long
What sadness, and what beauty
Your friend is gone, but you live on
In life you loved him fully
But now little streams and forests dream
And all is made more holy

A new chapter.

2008-05-03T11:01:00.000-07:00

I felt compelled to change the look of the blog. It was put together last August, in haste and between hospital visits, as a way to let everyone know what new emergency had popped up to surprise us. I feel like we've now entered into a new chapter in our life with Owen and that the portal needed a bit of a face lift.

Thus far, the story goes...

Preface: Nine months of pregnancy bliss.

Chapter 1: Oh my god, what is happening?

Chapter 2: Okay, we can do this. Despite the challenges and the surreal nature of it all, it is starting to seem normal.

Chapter 3: Yet to be written.

As a midwife-in-training, Louisa was present at Owen's birth. I've been catching up on other's blogs recently, including hers (see sidebar - Mama Mid(Wife) Madness). I was reading through and came upon entries from last July that made reference Owen's birth. It was difficult yet comforting in some strange way to read her thoughts on her experience.

I'm going to finally say it... I still believe in home birth. I labored 21 hours, unmedicated, not to prove anything but rather to give our child what I felt would be the best possible beginning. I still believe in home birth. I believe that a woman's body is made for giving birth and that, in most instances, she can safely deliver her child naturally. This is not to say that there is not a place for interventions - there certainly is. I also very strongly believe that a woman should be allowed to chose where she feels most comfortable giving birth. As Paulo Coehlo says, "It's one thing to feel that you are on the right path, but it's another to think that yours is the only path."

On another subject... blogging has, at times, seemed very self-centered, like somehow our life has more significance than other's lives. Everyone has struggles, joys, things in their life that they want to share, exciting plans to talk about. I think, though, about how much I enjoy reading the other blogs, how they allow me to experience another's perspective (or just get easy access to excellent recipes) and think, well, if I bore you too much, you can just close your browser window. Pretty easy.

So that said, many of you have been asking about the blog, about the lapse in communication, whether there will be a new posting soon, and it pleases me to say that there is not much new to report with Owen. Okay, so with most babies, you'd hear, "Well, he's walking, talking, reaching for objects..." We are just happy that there are no seizures, no infections, no fussiness. He loves riding around in his Phil and Ted's stroller, sitting in his "hot seat" and laying on his back. These are BIG improvements for us. He now weights a whopping 15 pounds!

Janet, Owen and I took a road trip this week to Raintree Nursery, located at the base of Mt. St. Helens. It was the first road trip I've been on since Owen was born. I brought home two kiwi plants, a jasmine, and a "Scabrosa" rose hip. I am so jazzed to get them in the ground.

Of course, I couldn't help jumping out of the car on several occasions to take photos. Highway 508 is gorgeous and the entire landscape looked and smelled of spring. I'm a big fan of old barns and took a few photos of some especially fine ones.

Included also is a photo of Ms. Lillian who turns one year old on May 9th and of Mr. Owen, riding stylish in his Phil and Ted's.

We've also been making batches of homemade pasta with the pasta maker that dear Natalie bought for us. I asked Janet what we should call the shots of our pasta creations. She suggested "Pasta in the Raw."

Sixteen days of April.

2008-04-16T17:49:00.000-07:00

Owen developed a second infection of his PEG site. He is on day seven of ten of amoxicillin - his second round of antibiotics. ALWAYS give your child probiotics when giving them antibiotics. It dramatically reduced Owen's severe vomiting within a day. We all need those beneficial bugs in our belly. His site looks great - better than it has since the surgery and we can tell that he finally feels better.

We, along with Owen's neurologist, decided late last week to halt the prednisone. It was making Owen crazy - really, really irritable - and we suspect that it is what has hindered healing of his tube site and perhaps aided the infection. We've had two really great days and cherish every minute of them. He's on my lap, happy as a clam, as I type this.

Owen is taking all of his nourishment by tube. He will no longer take a bottle. This is very, very frustrating and heart-breaking for me, but I must get past it and work on getting him to take solids by mouth.

Grandpa Marshall and Nai Nai came out for a brief, but busy three day visit. We put them to work prepping materials for the Green Festival. We tried to hire them, but California called them back...

Kelsey helped Herb lay flooring - as you'll see in the photos, they look like they are having WAY too much fun.

Mick, Corey and Naomi came out for a visit while Kelsey was "flooring" at Leslie and Herb's. I was finally able to meet the newest member of our extended friends-family. She's truly adorable.

Janet and I moved almost eight yards of top soil, six yards of bark, and a number of "one-man" rocks and have been weeding, digging, planting, mulching. It is satifying for me to watch things grow. Given our struggles with Owen, it seems to help create a balance. We have new terraces, new veggie beds, a corn and sunflower bed and several barrels for roma tomatoes. The tomato plants arrived late last week from Territorial Seeds and they are in the soil and "green-housed." I WILL have tomatoes this year.

The Green Festival was energizing, amazing and everything we hoped it would be. It was great to see so many of you. Leslie was a power-house in the booth both days, fielding questions about fair trade, sustainability, etc and helping to get people hooked on GFC coffee. Janet packed, hauled boxes, unloaded and helped set-up the booth - she then took care of Owen for two straight days in a hotel four blocks away. We distributed and sold several of the items that Mac and Margery worked so hard to help us prepare. Kristin Quick lent her professional trade show experience during set-up Friday, taking the day off to help. Thank you all...

PHOTOS

Wishing you a warm, sunny and fragrant spring.

S/K/O

Bumpy, but smoothing out.

2008-03-31T21:34:00.000-07:00

"They" said that the G-tube "may exacerbate reflux." They didn't say much else. Thank goodness for the Parent-to-Parent forum and all of the mothers with kiddos on feeding tubes who have answered my questions these last two weeks. These women know because they've lived it. According to these moms, it almost ALWAYS worsenes reflux - for 1-2 months while they get used to a new area of tension in their stomach. I have been dropping in on this forum so much lately... "Is this normal?" "Does your child's site looks like this?" "What does granulation tissue look like?" What in the world did parents do before web-based forums? Good lord, I would have gone crazy. As if it's not enough to try to get used the simple fact that there is a hole in your child's stomach.

Things are smoothing out now. We were able to catch the infection early and after six days of antibiotics, now have it under control. We've had to take a few steps back and do slow, drip feeds to try to increase Owen's tolerance of this new sensation in his stomach. This is normal in the world of G-tubes. He's probably lost a bit of weight the last couple of weeks, but again, all the P2P moms say this is common. We have a follow-up GI appointment tomorrow and hopefully we'll be able to discuss moving to the low-profile, mic-key button in June. I'll be glad to not have to accommodate the 6" long tube that's always present, like an added appendage, but on the opposite side of the map.

Sarah Ono knit a beautiful, wonderfully soft and silky blanket that we just received. I couldn't resist sneaking in on Owen while sleeping and immediately giving it a try.

I noticed from the photo that you really get a sense of Owen's lovely, red curls. Kelsey says that we are "not cutting Owen's hair." I'm inclined to agree. We'll keep you posted.

Musings on life that make sense to me.

2008-03-19T20:36:00.000-07:00

"I sometimes wake in the early morning and listen to the soft breathing of my children and I think to myself, this is the one thing I'll never regret and I carry that quiet with me all day long." - Brian Andreas

I happened upon Brian Andreas' work at Fireworks in University Village last December after one of Owen's appointments at Children's. I immediately fell in love with his stuff and spent at least 30 minutes looking at his various collections - sculpture, storybooks, prints. I ended up buying an unframed print for Owen's room called "Deep Roots." His musings on life are so original yet so true. His sculptures, so absolutely beautiful and vivid in every sense, incorporate weathered wood, metal and brightly colored images.

I just recently discovered that Brian was born in Iowa City in 1956, lived the majority of his life as a young man in California and now lives in Decorah, Iowa with his family. Ahhh, it all makes sense...

"Make sure you got clean underwear, she always said, in case you get in an accident & I always figured that'd be the least of my worries, but now I'm older & I see there's a lot you can't control & some you can control & clean underwear is one of those you can. For the most part." - Brian Andreas.

Home again.

2008-03-18T19:40:00.000-07:00

Owen continues to amaze me. He heals fast and has never been sick (knock on wood) despite being in and out of hospitals and doctor's offices his entire life. His strength and resiliency shined the last two days.

The G-tube surgery and insertion went great (Did I ever imagine that I would say that about a surgical procedure to insert a tube into my son's belly?) as did the recovery and the first 24 hours (the "critical period"). The GI surgeon, Dr. Wahbeh was amazing, compassionate, professional and experienced and is someone I would recommend without hesitation. According to the nurses I spoke with, I'm certainly not the only one who thinks he's great - he has a reputation for being one of the best in his field. Dr. Wahbeh said Owen's G-tube was the easiest he has placed in quite a while. The entire procedure lasted 15 minutes. Owen was in recovery for a mere 45 minutes.

The most difficult part was handing him off to the anesthesiologist, Dr. Orr, right after he smiled and cooed in front of both she and Dr. Wahbeh. They were totally charmed and immediately Dr. Orr said she should be the one to hold Owen since Dr. Wahbeh would be "the one to poke into him." Fortunately, Dr. Wahbeh found the humor in that remark. And off Owen went, in the arms of Dr. Orr. The second hardest part was lifting up Owen's gown once he was in his room to have the first look at the tube.

You learn how to maximize your in-patient stay at Children's and while we were there, I requested consults from Dietary, Physical Therapy and one with Robin Glass from Occupational Therapy. Robin is an amazingly talented, well-known, humble and very likable woman who we met in August during Owen's initial admission. She has researched and written extensively on infant feeding issues. We left with so much great information and good tips from Robin on helping Owen to overcome his oral aversion. He is also scheduled to see her in a few weeks in clinic for a feeding evaluation followed by a swallowing study to assess the efficacy and mechanics of his oral feeding abilities.

Kelsey surprised us with a visit Monday afternoon and took the photos that are posted. He is so busy right now, with a spot on a panel discussion tomorrow at the University of Puget Sound in Tacoma, "Making a Profit While Making a Difference," event and with numerous other projects and engagements in addition to the enormous task of running GFC. We are now more comfortable with our roles - mine as a stay-at-home mom, working on GFC projects from the home office when I can and Kelsey managing the business operations - both the day-to-day and the long term planning. We are both busy, as we like it, and life seems so much more managable now that there is a sense of routine and predictability.

The G-tube (more accurately known as a PEG tube) in the photo will be replaced in eight weeks during an outpatient visit with a much smaller "mic-key button." The larger tube and "button" (plastic piece that lays against his abdomen) are typically only used during the initial healing stages. The "mic-key" is a small, plastic piece that a feeding tube snaps into while feeding. It is extremely low-profile, comfortable and means that Owen will be able to once again enjoy "tummy-time!"

Thank you all for the emails, phone calls and text messages throughout yesterday and today. It's what gets us through these bumps in the road.

Dreaming of a fat belly.

2008-03-10T14:41:00.000-07:00

Owen is scheduled for a 9 am surgery on the 17th at Children's for a G-tube placement. It will be a two day in-patient stay. Good thing he's not Irish or this would put a serious damper on his St. Patty's Day festivities.

The G-tube is a good thing - even though I was opposed to it even as recent as a few days ago. I just hate to see another intervention, this time a surgical one, and one that requires a stay at the hospital. But Owen is rapidly gaining weight with the use of a tube, is making all sorts of fun noises and is experimenting with smiling all of the time now. He seems so changed. I think it's a combination of coming off the ACTH, having more food and less (no) vomiting. The NG tube irritates his face, is a short-term solution and has created an oral aversion. The G-tube is inconspicuous, does not muck up our efforts to get Owen to eat solid foods and is low maintenance. I know it goes without saying that each decision we make is with Owen's quality of life in mind and given this, and the arguments we recently heard in favor of the G-tube from Dr. McLaughlin (the neurodevelopmental pediatrician at Children's) and the dietician who has been following Owen, it is the right decision. Owen's pediatrician has been encouraging the use of a G-tube since October.

Owen made the rounds last night at an Indianola gathering at Kelly and Dave's (for Corina and Lucy's birthdays) and was so content to be held by a few admirers - all whom were so good with him. It was so liberating to be out and to be with a large group of people who didn't stare at the oddity of the tube or the fact that Owen is different, but rather who smiled, touched him, held him, talked to him. And most of the Indianola kids know him - it warms our heart when they come up and say "Hi Owen!" At one point, I had to search the crowd for Owen - he was with Sarah - she was showing him the light and shadows through the leaves of a very large, loyely tree in the yard. Later in the evening he was smiling and smiling and smiling for Elizabeth. It was such a positive experience for all of us. It is so good to have community in Indianola.

We caught Owen on tape experimenting with smiling again and have promised many of you the video. Please excuse our unabashed giddiness... We are parents who long - and have waited long - for our baby's smiles.

Thanks for thinking of Owen on the 17th. May his belly grow ever larger.

"Hope is not blind optimism."

2008-03-08T21:15:00.000-08:00

Says Barack Obama...

We had a great visit this week with Dr. MacLaughlin, a neurodevelopmental pediatrician at Children's Hospital. He said based on Owen's MRI, which had not been so carefully and compassionately reviewed with us, image by image, until this visit, that he "expects Owen's vision will improve." He also said that children like Owen require even more calories than "normal" babies as they are not only trying to grow, but trying to heal, to recover from an injury. He has over 35 years of experience in his field and said he's seen so many parents struggle with "the tube decision." He encouraged us to have hope - for many things.

We have decided to move forward with a G-tube (tube inserted directly into the stomach), which will be placed sometime in late March. The NG tube is a temporary solution, and is working great, but has its disadvantages. With a G-tube, Owen will hopefully take better to solid foods and will have less discomfort than that associated with the NG tube. He is fattening up and the tube has almost entirely eliminated the vomiting. He is even more adorable with healthy amounts of sweet, sweet baby fat.

We have been very sleep deprived the last three weeks... So many of you have emailed asking about Owen - I'm sorry to have dropped off the blog-o-sphere. We appreciate all of you making the effort to stay connected. After a slow process of elimination, we determined that Owen was awake and very agitated (screaming) almost every hour during the night these long three weeks due to the Zonegran that he was taking for seizure control. We now give this to him in the morning, instead of right before bed as had been prescribed. We are all now sleeping soundly.

Owen has resumed experimenting with smiling and does this repeatedly each day. It makes our heart melt each and every time. He is now also cooing and making noises, especially during the night. It makes Kelsey and I laugh with joy, even at 3:00 am. He is in his last week of the ACTH injections.

Life seems to be somewhat normal for us - something that was hard to imagine even just a couple of months ago. There are no crises. No emergencies. No seizures. We all know and understand each other and there is no longer any guessing as to what might make Owen happy or content. He enjoys the sounds of the garden and the warmth of the sunshine. And Kelsey and I enjoy cooking in the evenings - really cooking - wonderful dinners each night. We are getting out into the garden (our kale, lettuce and radishes are up), are doing some additional landscaping in our yard - moving soil, digging in one-man rocks, terracing new vegetable beds. Our garden this year will include a melon patch, a sweet corn and sunflower bed and a section of garden with trellises for sugar peas, pole beans and cucumbers. We are making plans for travel this summer and are feeling overall more settled. Owen and I spend many of our early mornings, laying in bed, snuggled up together with me appreciating the last vestiges of his babyhood, knowing that these will soon be memories, as are, already, so many of the experiences we've had with him.

The photo below was taken on a recent walk to the beach to observe the lunar ecplise. Ahhh, the beauty and the wonder.

Happy Valentine's Day!

2008-02-14T19:06:00.000-08:00

Well, I am once again on ACTH injections and it's no fun at all. My spasms returned last week and they were making me really unhappy. I know that Mom and Dad are keeping their fingers crossed that it works this time as there is no "third time." I am on double the dose that I was before, but on a shorter course. I have been out of sorts the last two days, especially an hour or so after my morning injection. I will be done with this second round on March 19th - a day before the first day of spring. Mom and Dad say that I've got so much to look forward to and to experience out in the garden come spring - the birds, the scents, the herb garden, the fresh soil, the cool grass, walks down to the beach. Spring will be a good time for all of us.

I wanted to share the link for my friends who taught Mom and Dad how to give me extra food by tube. Tobin has been through so much and is such a strong little guy. I hope to spend time with him once spring arrives. Mom and Dad say we are so grateful to have so many caring people, such as Tobin's parents, in our lives.

http://www.triciakurtzman.com/Tobin

Mom and Dad continue to take photos and video... I keep telling them that I'm not a huge fan of being caught on camera, but they just keep gettin' me on film. Check out my sweet gecko shoes from my Great Aunt Lei Ann. I've worn them several times the last week and have received so many compliments. And the yellow bath towel is from Grandma and Grandpa Chalupa. It is so nice and soft and feels so good on my skin! Cousin Tiffany (and Jamie and Evan) sent me some totally rad Valentine's Day bibs which I haven't yet had a chance to try out. I think it is okay to celebrate Valentine's Day over the course of several days, and I plan to test these bibs out in the next few days. Stretch out the looooove - that's my thought. My new dog friend, Dutch, is a hoot. He loves to cuddle - with me, with Siva, with anyone really... he totally digs Dad's lap.

Happy Valentine's Day!

Love, Owen

Tubes and smiles.

2008-02-11T14:49:00.000-08:00

We finally made the difficult decision last week to begin using a feeding tube for Owen. The NG (naso-gastric) tube slips through one nostril and ends up in the stomach where it deposits the much needed calories. It is not a permanently placed tube and we have been trained on both removing and replacing it. It is pretty benign and seems to be working exceptionally well for Owen.

We have tried so hard to get Owen the level of nutrition he needs, but always fall just a few ounces short most days. Our pediatrician, Dr. W., connected us with a wonderful woman on Bainbridge Island whose son developed a serious heart condition at birth. At seven and a half months, he just graduated from the tube. From what I understand, his survival is also a miracle. His mother had extra supplies and wanted to provide training and support to another set of parents in need. It was such a generous act of goodwill for Dr. Walters to arrange this and introduce two sets of parents going through similar struggles. I cannot say enough great things about the level of care Owen has received from Dr. Walters and the staff at Bainbridge Pediatrics.

Owen now gets slow "drip" feeds through the tube during the night and during the day, is fed mostly from his bottle. We were told that it was probably the case that Owen had developed a major aversion to bottle feeding as he knew that only led to vomiting and that when not forced to take more than a couple of ounces at a time, something he can comfortably handle, he would again readily take the bottle. This has happened and we are keeping our fingers crossed that this continues.

Owen now sleeps more soundly, is getting the food he needs and the quiet naps he needs, is not constantly plagued by the fear of losing his food and we have substantially more flexibility in our lives, not having to hold Owen upright for hours a day after feedings.

The even better news, in my humble mommy opinion, is that we are getting more and more smiles and some that seem to be purposeful - an expression based on positive feedback. Owen began experimenting with smiling a number of weeks ago. We've been told by our various support folks that this is a built-in expression in infants and that for most babies, it is reinforced by the visual queue of parents smiling back. In Owen's case, we cheer and laugh and squeal with enthusiasm. Sunday morning, he was smiling and smiling and smiling for Kelsey and I as we cheered him on. The same thing happened this afternoon for Grandma Janet and I...

Owen will be seven months old on Wednesday. It so good to finally see a smile on his face.

Snoopy Buddha.

2008-01-25T16:25:00.000-08:00

Many of you know that we had to give Paco, our beloved 5 year old mix (in the photo with our lovely Siva), a new and improved home this last year. We adopted Paco, a beautiful blue heeler, german shephard, pit bull mix, from the Kitsap Humane Society when he was 8 weeks old. He is such a joy - incredibly intelligent, attentive, people-oriented. Unfortunately, with a new baby, we just could not give him the exercise that he needed each day. He now lives with my parents who have an acre outside of Poulsbo and a greyhound labrador mix that is the only dog that can keep up with him. They run and run and run and run...

Kelsey and I have missed Paco terribly, especially these last few months. While Siva, our lady labrador, is dearly loved and will always be our first baby, at fifteen and a half years of age she moves very slowly, sleeps most of the day and, although she loves kids and babies, is old enough that the only thing she gets up for or excited about is the low calorie, fiber-rich kibbles that pass as dog food. She is riddled with lypomas, non-cancerous fatty masses, and she can barely get up off of the floor due to severe arthritis. She has traveled the country with us and backpacked in several Midwest and Western states. She has steel plates in her knees, the result of the rupturing of both ACLs. She used to be a frisbee-catching master and could tirelessly swim in mountain streams too cold for most of us. She is now a lovely, old dog who we appreciate everyday - we know these days are limited. The vet said that should she not go on her own terms, that we'll know when it is time... she will finally refuse the tasteless kibbles.

So Kelsey and I started talking about a doggie addition for our family, but more importantly, for Owen. Dutch was discovered out of our interest in beagles, which consistently make the top ten list for dogs that are good with children. We've never been "pure bred" people, rescuing our dogs from shelters or from other fates. Siva was six weeks old when we got her - a non-papered daughter of two hunting labs, she was destined for the humane society.

I came across pocket beagles during one of my late night web searches and began asking questions of Kate, of Metropolitan Pocket Beagles. She immediately directed me to Dutch even though I had inquired about another in the litter. He was the first in the litter to be adopted, only to be returned due to a sudden illness in the family. He was the family favorite. Kate and I had several exchanges. My main concern was that beagles can bark quite a bit and be obsessed with what comes to their nose. Kate responded by saying that pocket beagles "...bark less and wander much less than their full size counterparts." Dutch will not exceed a foot high and about 15-20 pounds. There is a bit of controversy over pocket beagles, and whether they are actually just "runt" beagles. AKC or "pure bred" status does not matter to us - what does is that we find a dog that will be gentle, calm, smart, loving and is a size that is managable for Owen.

The photos are not staged. Dutch won't leave Owen alone - whether Owen is eating, sleeping, sitting. Dutch is very calm, very smart, and VERY into Owen. It is such a gift to our family to have this newest canine member. We think he will bring all of us, but especially Owen, great joy. We are calling him our Snoopy Buddha.

Images from our goings-on...

2008-01-22T12:06:00.000-08:00

Owen is taking a nap after his morning PT session and will be up and hungry soon. Afterwards, we are off to spend some time with Grandma Leslie and Grandpa Herb before Owen's 3:30 pediatrician appointment... a full day for us. I wanted to share some photos (below) from the last few weeks, so thought I'd attempt a quick blogging in between our various activities.

One photo clearly shows off Owen's FABULOUS belly. Another is evidence that we've been working on sitting upright with support and have some cool new options, customized by Barb, Owen's physical therapist.

Also included are some photos from our weekend get-away at the Hethcote's. Owen and cousin Lily spent time together on the floor - she is totally taken by Owen and couldn't keep her hands off of him. It is so good for Owen to be around Lily - to hear her "coo" and talk, to feel her touch and to know that there is another little one about the same size sharing his space. The four adults stayed up until 11:00 pm (!!) and made our own sushi rolls for dinner. Such a treat to eat good food with great friends.

It's another great day - the sun is shining and Owen is spasm-free.

Xo, S/K/O

Six months.

2008-01-15T12:41:00.000-08:00

Owen celebrated his six month birthday on Sunday. It seems as though simultaneously both a mere six weeks and a many six years have gone by. I'm sure all parents feel like this, like time both speeds up and slows down when on the parenting journey. I've included a couple of photos from Owen exploring his thumb. The first one makes me laugh... it seems as though the initial experience was not such a tasty one.

The ACTH wean continues to go as well as can be expected. No spasms but instead LOTS of sleep and quite a bit of vomiting. Our whole experience with the drug was fairly benign, so we see these "coming down" issues as a small price to pay when many babies have much more intense side effects throughout the treatment.

We have transferred Owen's care to Dr. S. at Swedish Hospital's Epilepsy Clinic (part of the Neuroscience Department) and had our first meeting with him on Friday. We want to have a continuity of care that, because it is a teaching hospital, is just not possible at Children's. The latter is an excellent care facility and Owen will still be seen there for various tests and screens. Dr. S., who recently left Children's for a position at Swedish, came highly recommended and our first meeting with him was wonderful. He took an hour and a half to become acquainted with Owen and ended the meeting by reminding Kelsey and I that couples with special needs children face great challenges and that we must always take care of our relationship, the foundation of which supports all three members of our family. We appreciated his willingness to apply both a human and holistic perspective to Owen's care. His experience is impressive, he exhibits both realism and compassion and his bedside manner is quite refreshing. We think he will be a great fit for our needs.

It is a glorious, sunny day here on the Kitsap Peninsula. I was out in the garden a few days ago and was reminded of how early spring arrives here in Western Washington. There are buds on the vine maples and on the red flowering currant, and the crocuses should be poking their heads out soon. We are looking forward to Spring, to getting our hands in the dirt again, and in the next couple of weeks, planting our chard, spinach, lettuce and kale. I am choosing to be positive about this upcoming year and hoping that it will bring much growth and rejuvination.

Change.

2008-01-10T17:58:00.000-08:00

How timely, in numerous ways, that this is the buzzword for the 2008 presidential campaign. Kelsey and I have long said that human's ability to adapt to change is one of our greatest traits, one that allows us to move forward, through good times and bad, to become better individuals and engaged participants in our global community. We don't always immediately accept it and it is not always easy, but it makes us react. It makes us think. Whether it be the biodeisel movement, a move towards sustainable communities, a focus on social and economic justice (at home and abroad), a change in where we shop to support the "little guy," or an intimate shift in what a small, family unit thought would be a given outcome, the strength that is gained through adaptation to these new circumstances cannot be artificially created or discovered in any personal development courses.

For Christmas this year, I received a book from my fabulous aunt and uncle, Barb and Kevin, entitled "Keep Going: The Art of Perseverance." It is written by a Lakota, Joseph Marshall III, and is based on conversations he had with his grandfather upon the death of his father. There are so many powerful messages, but one quote was especially moving and relevant. "Difficult experiences, whether they are sadness, loss, hunger, poverty, illness or death, rarely occur because you have invited them into your life. But when life does place hardship in your path, it always offers a chance to learn strength. THAT is the unseen gift."

Change is not easy, it always requires a shift of some sort which means a certain level of uphevel. I do not claim to be a perfect adapter, I'm not, but when I look back at the opportunities that I've had to change, the ones that were the most difficult were the ones that most deeply affected me and instigated positive change.

Owen is doing great. He ended his ACTH treatment today and Janet and I let out a collective hurrah at the last injection. It has been emotionally difficult to administer these each morning the last two months. My mother is amazing - always positive, always seeing the good, always reassuring. Sure, she closed her eyes each time I gave the injection as she held Owen, but she never faltered and always reminded me that it was being done out of love for Owen. His spasms have yet to return and we hope they never will.

We work each day on head control, torso control, grasping objects and becoming familiar with solid foods. We celebrate the "inchstones." He has discovered his thumb, caught glimpses of his hand as it moves across his field of vision. These are causes for celebration.

Kelsey and I so loved seeing so many of you at the Gala Coffiesta. Many of you requested more information on the glass and metal work displayed by Myorian Studio. Dave and Kelly are wonderful souls and their work is equally beautiful.

Thank you for your support of our family and of our family-owned business.

Happy New Year,

S/K/O

'Tis the season to remember the little ones...

2007-12-18T21:01:00.001-08:00

Owen had his pediatrician appointment today... he's gained 10 ounces. I am in love with his rapidly growing belly, so soft and lovable. And his cheeks... they feel like warm, sweet butter. Oh, baby fat!

We are wishing you all a wonderful holiday season and want to thank everyone for checking in with the Marshalls throughout these last five months. We've been amazed to learn of the people who are reading this blog. The positive thoughts, prayers and energy have helped tremendously.

The thing that I am reminded of, seeing a collection box today at a children's consignment store that I stopped at to pick up items to accommodate our rapidly growing baby boy, is that there are so many children who need to be remembered every day but especially this time of year, when friends and family gather together to celebrate life, joy and togetherness. The little girl who the box was in honor of had been born with very serious complications. Her parents insurance money had recently run out...

I'd especially like to remember Katie Gerstenberger, who at age 12, passed away in August from cancer. Kelsey and I had the joy of meeting Katie at Andrea and Mike's 4th of July celebration, just before Owen was born. She was a beautiful young woman - so full of life. She is the cousin of Andrea, our beloved office manager at GFC and the daughter of Karen, a woman full of grace and compassion.

There are also the children who we love, and who are too numerous to list, who are especially thought of this time of year... Scott James' son, Justice, and Owen's cousins, Sara and Madison, pray each night for Owen's health. May the same blessing be bestowed upon them. Our little Lily Hethcote, who we saw this weekend, is a little bead of happiness. May her smile always remind us of her parents, our dear friends. And then there are the ones we know are on their way, including Baby Endo, the child of our friends, Mick and Corey. May this baby be as wonderful as his/her parents.

Life is such a gift.

Until next year,

S/K/O

Home for the holidays

2007-12-14T21:25:00.000-08:00

Owen remains seizure-free both in the physical manifestations of infantile spasms and in the brain wave patterns associated with these, according to our observations and the EEG that he had on Tuesday. We began the four week weaning off of ACTH on Wednesday - a reduction of 20% each week. We are very hopeful that the spasms will not return even though the possibility exists, most commonly during the weaning process. We appreciate each seizure-free day that we have with him.

As is the case each year during the four weeks leading up to Christmas, things are very busy at Grounds for Change and will continue to be that way until we close on December 21st. We are especially looking forward to our annual holiday closure this year. During this time, the week between Christmas and New Years, we get to catch up with a number of friends, enjoy the holidays with our local family and on the 30th, hold our first annual Gala Coffiesta at Grounds for Change.

Owen turned five months this last Thursday. His reflux has greatly improved and he is slowly gaining weight. He is wonderfully cuddly, nuzzling into our chest and faces when we hold him or lay on the floor with him. Coming off of the ACTH is not easy and he is very interested in being held much of the time. It is such a joy to be able to comfort him in this way.

We have put all doctors appointments, hospital visits and therapy sessions on hold during our vacation week. We'll be "home for the holidays" and enjoying every last minute of it.

Peace and love,

S/K/O

Welcome to Holland.

2007-12-08T18:41:00.000-08:00

We were initially sent this piece when Owen was six weeks old, after our first stay at Children's Hospital. We have since received it from mothers of daughters with a disability, mothers with sons with a disability, therapists, family, friends... We thought we'd share.

WELCOME TO HOLLAND
By Emily Pearl Kingsley

I am often asked to describe the experience of raising a child with a
disability - to try to help people who have not shared the unique
experience to understand it, to imagine how it would feel. It's like
this.

When you're going to have a baby, it's like planning a fabulous
vacation trip - to Italy. You buy a bunch of guidebooks and make your
wonderful plans. The Coliseum. Michelangelo's "David." The gondolas
in Venice. You may learn some handy phrases in Italian. It's all very
exciting.

After months of eager anticipation, the day finally arrives. You pack
your bags and off you go. Several hours later, your plane lands. The
flight attendant comes and says "Welcome to Holland." "Holland?!" you
say. "What do you mean, Holland? I signed up for Italy! I'm supposed
to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland
and there you must stay. The important thing is that they haven't taken
you to a horrible, disgusting, filthy place full of pestilence, famine
and disease. It's just a different place.

So you must go out and buy new guidebooks. You must learn a whole new
language. And you will meet a whole new group of people you would never
have met. It's just a different place. It's slower paced than Italy, less flashy than Italy. But after
you've been there for a while and you catch your breath, you look around
and you begin to notice that Holland has windmills, Holland has tulips,
Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy, and they're
all bragging about what a wonderful time they had there. And for the
rest of your life, you will say "Yes, that's where I was supposed to
go. That's what I had planned." And the pain of that will never, ever,
ever go away, because the loss of that dream is a very significant loss.

But if you spend your life mourning the fact that you didn't get to
Italy, you may never be free to enjoy the very special, the very lovely
things about Holland.

Beating the odds

2007-12-03T18:12:00.000-08:00

(to the tune of Frère Jacques)

Owen Keith Marshall
Owen Keith Marshall
Brave and strong
Brave and strong
Mama's little warrior
Mama's little warrior
Will beat the odds
Will beat the odds

I find myself humming this several times a day. Owen knows it well- I've been singing it to him now for a couple of months.

The ACTH injections seem to be working. The physical manifestations of the seizures ceased completely after the second injection during our inpatient stay at Children's last Tuesday. We (Owen, Janet and myself) were there for two days and one night - to provide training to me so that I can give him the injections each morning and to provide 24 hours to observe Owen to make sure he had no immediate side effects. We're on day seven of the treatment with 7-14 more to go. The number of days will depend on the results of the EEG...

...which Owen is having next Tuesday morning. As Owen's neurologist said, "Clinically we are treating "spasms", but it is the brain function abnormalities (i.e. hypsarrythmia) that we really want to cease." The EEG will tell us if these abnormal patterns have been eliminated as well. It seems the EGG is becoming an every other week event for us. What is it like? We enter a dark room. The techs mark on Owen's head with a red crayon-like pencil where the leads will go and then with a substance that resembles pomade, they attach each lead, wrap his head in gauze and prop him up on a pillow. I guess it is apropos, given that Children's is a teaching hospital, to say that he looks a bit like a science experiment. I don't like it that well at all, but somehow you grow used to it - such as you do giving your child an injection.

Thank god for steroids (ACTH). Seriously. They've given us our old Owen back AND they've made him a hungry little boy. He's steadily gaining weight again. Which reminds me to say that we didn't have the feeding tube inserted. Leslie suggested we ask about this once we were at Children's as it was her thought that it would not be good timing since ACTH affects the body's ability to heal wounds. When we asked the Attending neurologist about this, they confirmed this was the case. For now, though, it is not needed and we are so very, very, very happy about that.

From the windy, rainy, flooded Kitsap Peninsula,

S/K/O

Honestly...

2007-11-23T11:29:00.000-08:00

I've had a number of people lately comment on how it seems as though we are so positive, and that we seem to be such a happy family - but they suggest that this situation must be so painful for us as well. It is. In fact, there are few things that I can imagine that would be more painful than what we are experiencing right now. And the pain is not just felt by the three of us. It extends to our sets of parents, our siblings and to so many family and friends. There are so many people who are affected that sometimes it is unbearable to think about all who are hurting and concerned. But I don't know of a single person in our large web who is not positive or hopeful. Kelsey and I agreed a long time ago that we would do everything in our power to make Owen's life the best we possibly could. To pity him, to pity ourselves or to give up hope would rob him of that right, the gift of life at its best. This doesn't mean we don't have bad days, that we don't get tired of going to the hospital, that somedays things don't feel incredibly overwhelming, that we don't feel angry and wonder why this is happening to our child. We are only human. But the most recent developments remind us that the balance we have right now is very, very fragile and that we must appreciate Owen and each day at hand.

We had another BIG day at Childrens on Wednesday. Owen had a lumbar puncture to obtain spinal fluid for the tests to determine whether he has any treatable metabolic disorders. One is already back and turned out negative. The rest have been sent out to Baylor and won't be back for another week or two. The doctors suspect that these will come back negative as well. Owen also had an EEG which definitively illustrated infantile spasms. We then met with Dr. Simon, the Attending doctor who has been following Owen most recently, and Tim Feyma, the Fellow who saw Owen initially in August.

We were told in our meeting that four doctors (two chief neurologists and two fellows) completed a full review of Owen's records and this, coupled with the results from the chromosomal and metabolic disorders, have led them to a final diagnosis of hypoxia during labor/delivery. They can never be 100% sure in any case, but Dr. Simon feel confident that this is a correct diagnosis. According to the line of thinking at Childrens, a steady heart rate during labor is not always indicative of a healthy baby. They have seen on several occasions where a heart rate never dropped but the baby suffered from hypoxia. Owen's heart rate was monitored continuously during labor and never changed dramatically enough in one direction or another to indicate that there was a problem. According to the doctors we've talked to at Childrens, these events happen, in both hospital births and home births, and Owen was unfortunately one of those who seemed to be just fine, but at some point, wasn't.

The team of doctors had not fully reviewed Owen's EEG and various tests from Tacoma General when they started leaning towards a metabolic issue (versus hypoxia) after the MRI results from last week. The MRI initially seemed to indicate a metabolic disorder, given how globally the brain was affected and how there didn't seem to be any focused scarring at any particular point in the brain. They now realize that what they are seeing is considerable damage throughout the entire brain which indicates a major hypoxic event. This fits with Owen's first few EEGs - almost flat lines - with the hyponatrimia at birth and with the slow growth of his head over the last four months. It also fits with the recent development of infantile spasms, which indicate a serious underlying problem. Fortunately, somehow, Owen's other major organs were spared, which certainly gives him a better chance than most babies with this type of diagnosis.

We will be back at Childrens soon, as early as next week, to begin ACTH (the steroid used to treat infantile spasms), to get Owen on a G-tube (a feeding tube inserted directly into his stomach), to get further genetics testing for all three of us (as a precautionary measure) and to get Owen seen by the neuro development team to address issues of high tone. The ACTH may or may not work - it is our best hope. Cross your fingers, toes, light a candle, pray... we really need this to work. Owen is miserable right now and has so many seizures that we've stopped counting. We will have a couple of days of training on the administration of the ACTH at Childrens and then will be sent home to give Owen his shot of this every day for 2-4 weeks. If it doesn't work in this period of time, then it won't work at all. Regardless, it is a short course and we won't have to give it to him for more than a month. The G-tube will allow us to do a continuous drip of food at night. This will get Owen the nourishment he needs, will reduce the chance of aspiration of milk into his lungs and will hopefully allow him to get better, consistent sleep at night. We held out as long as we could, and hoped that we could get him the food he needed by mouth, but with the Zonegran (appetite suppressant) and the seizures (which make him even more prone to throwing up), he's back to gaining very little weight. We just can't let this go on.

I felt ready enough recently to look back into my mother blessing book which is filled with all of the lovely words given to me by many of the women in my life shortly before Owen was born. I wanted to share a poem that my friend, Angela, sent me. As intensely painful, shocking and challenging the last four and a half months have been, this poem illustrates why it is that my experience is also a treasured gift.

She Who is A Mother

A miracle occurred when the infant was first laid in her arms.
She was transformed from a woman into a goddess known as "mother."
She thought shed known the depths of love.
She though she'd seen the heights of success.
She thought she'd experienced that which is true joy.
But nothing compared to this.
All else faded when her baby drew its first breath,
and she became a co-creator with God.

-Kukana-

I've included a few photos from Grandpa Marshall and Nai Nai's visit a few weeks ago. We are so thankful to have such wonderful parents and their visit was a cherished one.

From Indianola,

S/K/O

What in life is gained without something lost?

2007-11-20T15:52:00.000-08:00

It is such an intense and powerful lesson to learn - perhaps one of life's hardest.

Everything was perfect and perfectly planned. My pregnancy was easy, beautiful and seemingly without complications. Kelsey and I joked... how could raising a child be any harder than bringing up the GFC baby? The garden was ready for a few week hiatus from the hands of its resident care takers. The nursery was complete - a lovely second-hand crib, local art on the wall, a driftwood and shell mobile from findings during my walks on Indianola beach. We waited...

All parents have an idea of what they think their children will be like and what their experience of parenting will be like. I've gained so much in my loss... I know Kelsey would say the same.

I have an acute awareness of what really matters. I am thankful everyday that Kelsey, Owen, our family and our friends are in my life.

I have an understanding of the tenuous balance that exists in matters of life, health and death.

I have a deeper sense of myself and my connection with all other living creatures.

I haven't written for several weeks as things changed dramatically just four days after my last posting (during Grandpa Marshall and Nai Nai's visit) and we've been trying to cope, regroup, get further testing, and figure out how to move forward.

Owen began having seizures on November 3rd, what an EEG deemed a few days later to be "pre-infantile spasms." Since then, these have progressed to full infantile spasms, as evidenced by their timing, physical manifestation, etc. An EEG tomorrow will, no doubt, confirm this diagnosis. Infantile spasms are very rare, very difficult to treat and indicate that there is a serious underlying problem. Owen currently has 6-7 episodes a day, upon wakening, with clusters of 30-40 during each episode. They have left him very, very tired. He's not eating well or sleeping well. We started him on a medication, Zonegran, for these two weeks ago. This has not helped. The next step is ACTH - a steroid with pretty intense side effects.

We decided to move forward with an MRI, which Owen had a week ago and were very surprised to learn the results. Although they aren't 100% certain, the doctors feel that the MRI has potentially ruled out a hypoxic event (lack of oxygen) either inutero or during labor and delivery. They saw little, if any, scarring (cell death) or any structural abnormalities. What they did see is that Owen's brain is not growing as it should. They've done all of the chromosomal analysis and testing for the more common metabolic disorders, and they've all come back negative. We are now exploring a small number of rare, treatable metabolic disorders and the larger number of rare, nontreatable disorders. This will include more visits to Childrens, more blood draws and a lumbar puncture (spinal tap).

The singer, songwriter, feminist, and beautiful human being, Ani DiFranco, is one of my favorites. The lyrics from Buildings and Bridges have been running through my head, especially the following...

buildings and bridges
are made to bend in the wind
to withstand the world,
that's what it takes
all that steel and stone
are no match for the air, my friend
what doesn't bend breaks
what doesn't bend breaks

I'd like to think that I've also learned to be very flexible - in my belief of what's possible, in my ability to move through each new set of challenges and in my ability to go from conversations with doctors about what might be wrong with my beautiful little boy to appreciating everything that is right about him, right now.

Remember to be truly thankful this Thanksgiving. Give your sons, daughters, wives, husbands, lovers, family and friends a hug and let them know how much they mean to you and how much you appreciate them - today. We never know what tomorrow may bring.

Happy Thanksgiving,

S/K/O

Impossible things made possible

2007-11-01T14:00:00.000-07:00

"There is no use trying," said Alice; "one can't believe impossible things."

"I dare say you haven't had much practice," said the Queen. "When I was your age, I always did it for half an hour a day. Why, sometimes I've believed as many as six impossible things before breakfast."

**Lewis Carroll**

Some of the things that have, at times, felt impossible over the course of the last few months, have become a reality the last week and a half:

1: Owen's EEG is normal. This is a big deal. For many children who experienced the type of trauma that Owen did, this can take months or even years.

2: Yesterday, Barb, Owen's Physical Therapist was here (in the photo below) and said she's seen positive changes in Owen each week. He had a great day yesterday - from his PT appointment to hanging out at the clubhouse for the Halloween gathering (I've included a photo below of Owen in his bear costume - the photographing was the one unhappy moment last night).

I saved the best two for last...

3: Owen gained EIGHT OUNCES in the last week!!!!!!!!!!!

4: Lastly... Owen, much to our amazement, rolled over THREE times this morning! This was unaided and from a full prone position with arms outstretched, to laying on his back. He was then totally relaxed on his back which has NEVER happened. The proof's in the top photos!

Thank you all for your love, prayers and good wishes these last several weeks. I believe they are, in part, what has made these last few days a reality for Owen. Knowing that all of you are out there, sending positive energy to Owen, helps ALL of us remember to believe during those times when things start to feel impossible.

Xo, S/K/O

Happy Halloween!

2007-10-31T16:12:00.000-07:00

We are doing great - Owen is gaining weight like a champ, it is our favorite time of year AND our favorite holiday and we've got a visit from Grandpa Marshall and Nai Nai coming up at the end of this week. I'll share more photos from our evening at the clubhouse Halloween gathering along with a more detailed "Owen update" tomorrow after our weight check at the pediatrician's.

Great Aunt Lei Ann sent a beautiful knit pumpkin hat (which is so cool, he'll be wearing it well past Halloween).

Aunt Laura gave Owen a colorful Halloween onesie, spooky socks and a ghost hat.

Owen loves his gorgeous quilt (in the photos below) that Claudia Kumai, a lovely friend and a former co-worker at Fred Hutchinson, made for him and that we just received yesterday.

Adam and Ann at Meadowlark Cafe in Lincoln, Nebraska sent a handmade pumpkin onesie that we've yet to capture on film. And for Halloween tonight at the Indianola clubhouse, Owen is dressing up as a Washington native species - Ursus Americanus - a black bear.

Lastly, Halloween is ALWAYS appropriately celebrated at Grounds for Change, and so in the spirit of our favorite holiday, I had to include our annual photo.

Happy Halloween!

Big Toe watches over...

2007-10-23T19:45:00.000-07:00

Summary of our big day...

Osteopath. Most of the hour long appointment was spent taking Owen's medical history. Dr. Cavanaugh was able to spend another 10-15 minutes assessing Owen's structure. He feels that there is restriction at the base of his neck and confimred that there is some curvature of the spine. He really feels as though he can help Owen's nervous system and overall tension. We have another appointment next Monday.

Nutritionist. We are doing everything exactly right in fortifying Owen's formula. We are a bit disappointed that we (Kelsey) had to take it upon ourselves to do this and that it wasn't suggested earlier. Owen has gained another 3 or so ounces in the last four days and the nutritionist said that she is VERY pleased with his overall weight gain the last two weeks.

Neurology. A huge piece of good news... Owen's EEG from our emergency visit a few weeks ago, upon full examination, was deemed normal. The epileptologist who did a cursory review in the ER said that he was "surprised that it wasn't more abnormal" given Owen's history, but I guess after a full reading, aside from a few spikes (which were still within normal range), it was determined to be a normal EEG AND age appropriate! This doesn't mean that there won't be underlying "problems" associated with the trauma, but rather that Owen's been able to stabilize and sort things out a bit. We are so, so proud of him. He's come such a long way. There are still plenty of concerns - all of which we knew going in. Owen's head size has not increased much since birth, he is very high tone (meaning that he holds his arms and legs stiff much of the time), and he has trouble "organizing." But for now, we are delighted with the news of the EEG and celebrate this milestone. Or, as one of the women from the special needs forum at mothering.com said, with kids like Owen we call it an "inchstone."

Off to have some dinner (it is 8:00 pm) after an 11 hour day, two ferry rides, three appointments, lots of I-5 traffic and hospital fatigue...

Somebody in Iowa Loves You...

2007-10-21T18:32:00.000-07:00

Our family has expanded - in richness and in numbers- since Owen's birth. Another gift given to us by our son...

Owen has enriched my relationship with my mother, my stepfather, all of my parent-in-laws, my siblings and many of my friends. Owen has also given me the gift of renewed ties with my mother's family back in Iowa. I was estranged, by no choice of my own, from most of this family more than 20 years ago. I have two aunts, an uncle, one great aunt, eleven cousins, four second cousins and, if my calculations are correct, over 50 other relatives once removed from those just mentioned. This separation left a big hole in my life.

I saw many of these relatives this last April, at my grandfather's funeral. All of them welcomed me back to Iowa, back to my roots and back to my family. When the news of Owen's birth and rough start reached the Midwest in July, the emails and cards came pouring in.

And tonight, Owen was presented with a shirt, covered with messages of love, good wishes and support from these aunts, uncles, cousins, second cousins and other members of our "new old family."

Thank you to all of our family in Iowa. Thank you Owen.

Life.

2007-10-17T13:58:00.000-07:00

Owen's calendar is pretty full for a three month old and this week was especially intense. Monday he had a cranial sacral appointment with Mara. Tuesday was his first physical therapy appointment. Wednesday we had the Holly Ridge meeting to discuss intervention approaches and goals. Thursday was our weekly weight check at the pediatrician's.

Owen was initially scheduled for an MRI at Childrens this past Friday as well, but we decided at the last minute to cancel this appointment. The doctors at Tacoma General and at Childrens Hospital, at each of Owen's stays, felt that an MRI was not necessary. It was made clear to us that a future exam was optional and that should we decide to move ahead with the MRI, their suggestion would be to wait until Owen was at least six months old, if not closer to a year. Their perspective is that the brain changes so much during the first six months of life and that an MRI done earlier would not give us an accurate picture of development and prognosis. We went against that suggestion and scheduled this one at Childrens back in September, to be done at three months. We thought that perhaps there might be something going on in Owen's head that we would need to know about sooner. We had a different perspective on these things a few weeks ago...

We spent the first several weeks of Owen's life wanting to know everything, looking for everything that could be "wrong." I know that much of this was because we wanted to help Owen in any way we could. I think some of this was also due to the fact that we felt if we had every piece of information possible, it would help us to make sense of what happened and that perhaps with this information, we would be able to cope better. The former may be true, but not necessarily the latter.

We've learned that "coping better" actually happens with the passage of time. Just as with any new addition to the family, it takes time to get to know this new individual - what makes them happy, how to translate their signals, what routine works best for them. This is more intense with a special needs child, but the process is really the same.

I think the turning point was coming home after our last visit to Childrens, when we thought Owen was having seizures. We realized upon our return that we didn't want to spend the rest of Owen's childhood looking for what might be wrong. Owen is already three months old and the time has gone by so fast. We are ready to move on and enjoy our life with him, focusing on all of the things that are right and good. We know there will be ups and downs, challenges big and small, good days and bad days and surprises along the way. But that's life. I know everyone reading this knows what I mean. We all are living it. Life, that is. It is both beautiful and challenging and always full of surprises.

The photo at the top shows Owen working on his homework from his PT appointment. A rolled-up towel under his arms helps him build arm and shoulder strength and coordination so that he can eventually hold his head up when on his tummy. Barb was wonderful and we already have a number of things we'll be working on to try to decrease some of the persistent reflexes that might hinder Owen's ability to crawl, sit, walk, etc, and to try to build strength in areas that will help him achieve these goals. She'll be visiting us every week to work on exercises, stretches and intervention techniques.

The Holly Ridge meeting went very well and we are so fortunate to have access to such an organization. We discussed the nature of the evaluations that were done which indicated that Owen has distinct developmental delays - something we already knew but that had to be formalized on paper for Owen to be accepted into this program. We learned that Holly Ridge has a special needs preschool and school for older children at Wolfle Elementary in Kingston, just 15 minutes from our house. This is a huge relief for us knowing that we will have these resources so close by.

Owen has gained 4.5 ounces in the last week. We're hoping for a gain of 6-8 this next week as we've been able to increase the amount he eats these last two days. The liquid cheesecake is working!

We do have a number of appointments in Seattle on Tuesday of next week - Owen's first osteopath appointment, a consult with the nutritionist at Childrens and a follow-up appointment with the neurologist at Childrens that we saw in late August when Owen was an in-patient there. As for the osteopath appointment, we decided to go with Steven Cavanaugh, the DO in Seattle who took over Margaret's practice (the DO on Whidbey that I mentioned previously). She trained Steven and his office and hours are much more accessible to us. We're really looking forward to this visit. The neurology visit is a formality, a follow-up to check in on Owen's status. At this point, however, there is not much for them to do since he is now off phenobarbital. The role of the neurologist is more general cognitive and developmental assessment (which is being more closely monitored by our pediatrician, physical therapist and Holly Ridge staff), interpretation of tests and intervention in any instance of seizures. As we've discovered, we know Owen better than anyone else and usually spend these types of visits filling the doctors in on what we already know about him. The appointment with the nutritionist is for a review our formula fortification to see if there is anything else that can be done.

After next week, our weekly appointments will consist of a physical therapy home visit, an osteopath appointment and our weight checks at the pediatricians. We're hoping that soon, the weekly weight checks will not be necessary (the doctor wants to see 3-4 weeks of consistent weight gain first). We are also hopeful that we won't have to visit Childrens Hospital for several months.

Another piece of good news to add... My mother, Janet, has agreed to leave her job to help us out with Owen. As is the case with all of his grandparents, Grandma Janet loves Owen to pieces and was trying to figure out a way to help more while keeping her job. Meanwhile, we were trying to figure out how to free up some of my time so that I am able to work from home 2-3 days a week for a few hours. Our busy season at Grounds for Change has begun and there are several marketing efforts that I put on hold when Owen was born that I'd like to pick back up. Our thought was always that Owen (at the time, "the baby") would come into work with me. Well, things aren't always as you expect them to be and you learn to be flexible. So we offered Janet a "nanny" position with the Marshall household. She gladly (gleefully?) accepted, saying that this will change her life dramatically, in such a positive way. It will for us also. It will be wonderful for me to have consistent help with Owen, with the house and with taking him to his various appointments. It will also allow me to have a balance - to do the creative work of a business owner AND a mother. Leslie and Herb will still come help with Owen on Tuesdays. We asked if they'd keep this day and they insisted that they'd not have it any other way. The expression on Grandma Leslie's face in the photo below says it all.

Hope you all have a great Halloween - it's our favorite holiday. Owen has his own costume which he'll be wearing to the Indianola Halloween gathering at the clubhouse. We'll share photos...

S/K/O

The Many Faces of Owen

2007-10-13T15:31:00.000-07:00

We visited the pediatrician's on Thursday... no weight gain from our visit three weeks ago. We thought this might be the case. There was a period of almost two weeks, immediately after our last visit, when Owen was keeping VERY little food down. Our suspicion is that he actually lost weight only to gain it back again after starting on the fortified formula last week. With the "liquid cheesecake," we are now on our way up - we've had weight gain days now for over a week. Our other new trick is a quick burst of air to interrupt the vomiting. Kelsey, in behavioral science mode, discovered about a week or so ago that this works to stop Owen from losing his food. As soon as we hear things coming up, we give a quick "poof" of air in his face. Yes, this was incredibly hard for me to do the first few times. But it's that or Owen loses much of his food and continues to not gain weight. The choice is pretty clear. What is really crazy is that we've gone from losing 8-10 ounces a day to now only about 2-3.

Owen continues to have more frequent alert periods and is gaining additional head control - enough so that he can face forward in the Bjorn carrier. We went on a nice walk today in the autumn glow of Indianola.

The other photos show some of the "faces" of Owen. We caught him "on film" pouting (he's a pro at the pout - it is so incredibly cute), yawning and looking very sweet while sleeping.

Lots of love from Indianola.

S/K/O

Liquid Cheesecake

2007-10-12T13:54:00.000-07:00

As much as I hate to admit it, I can’t absorb enough regular food to grow. It’s not a problem with my appetite - I can drain 4 ounce bottles like nobody’s business. It’s just that I can’t keep enough of it down.

Mom and Dad decided that if I can’t keep enough milk down, the milk that stays down better be VERY powerful or I would never gain weight. They consulted a Clinical Dietician at Children’s Hospital to see just how powerful they could make my milk. Dad calls it Liquid Cheesecake and he cooks it up for me every morning. It has 30 calories per ounce. That’s 50% stronger than regular milk!

I now have my own part of the kitchen, just like Mom and Dad. Even though Mom and Dad’s kitchen stuff is more colorful and smelly, mine is pretty cool too. I have my own gram scale for weighing the formula powder and a special sugar called Polycose. Polycose is an easily digested source of carbs but it doesn’t taste sweet because it's made from hydrolyzed cornstarch. I also have little syringes to measure out my Microlipid, which is a 50% fat emulsion that has all kinds of good oils that don’t separate when they are added to my milk.

And guess what? The new milk is so think and creamy that it actually stays in my tummy better than regular milk. I can keep a little more of it down. So now I’m getting stronger. And longer. Little by little.

Some day, I’ll be able to have you all over for dessert.

Love, Owen