What is this?

It has been five months since Owen's passing. I look back on this blog with such complex emotions; Sadness, heartbreak, joy, intense longing, and celebration of all we were able to accomplish together, despite the odds. Our journey was so profoundly beautiful and I struggle regularly with the fact that we had grown comfortably into each other, literally existing as though we were one, and that I am now left feeling as though I am no longer whole. Yes, Owen is "within me." Yes, Owen's spirit lives on everywhere. But the reality is also that I miss his physical body, a presence that grounded me in so many indescribable ways. My loss.

I have learned since October that each person walks the path of loss at their own pace, to their own music and with their own intentions. The path is not linear and the topography is constantly changing. My journey is my own.

And so I continue to walk. To remember. Celebrate. Grieve. Live. And to discover who I am now.

I'm not sure what this post is exactly. The first? The last? For now, you'll find me pouring so much love and energy surrounding my own loss into Owen's Playground. Come visit us.

Thank you to all of you who walked with us here during Owen's life. We're eternally grateful.

~ S

Not certainly the last. But perhaps, maybe.

(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.

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.

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.

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.

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...

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.