Monday, November 8, 2010

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

Wednesday, October 20, 2010

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

Friday, October 1, 2010

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

Tuesday, September 14, 2010

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.

The sun is up! Well... almost.

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.

Friday, September 10, 2010

SkeletomuscularScoliosisFlexorsHamstrings... Oh my!


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

Thursday, September 2, 2010

A Lesson in Spasticity.

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

Tuesday, August 31, 2010

Letter.

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

Thursday, August 26, 2010

Four weeks.

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.

Tuesday, July 13, 2010

Happy Birthday to you...

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.

Friday, June 4, 2010

Our work at home.

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.

video

video

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.

video

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

video

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.)

video

Tuesday, June 1, 2010

Feldenkrais, feldenkrais, feldenkrais!

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!



Thursday, April 1, 2010

A long overdue update.

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