The Amazing Owen
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The Next Step in Stepping
So we are excited about trying something new for Owen.  My remodeling of Owen's bedroom is almost done and I really don't want to put up pictures until I am finished, but I'll give you a hint - it's highly functional and we're hoping it will help with getting him upright a bit more.  And the truth is - it already has.  So in watching him spend more time upright, I'm also watching how much his ankles roll when he is standing.  The technical term for what he does would be supination, which is turning outward at the ankle.  Take a look at these pictures of Owen standing - I haven't actually tried to get a good picture of this on purpose, but this is what I have gone back and found in other pictures I have taken lately:

ankle01.jpg  ankle02.jpg  ankle03.jpg

I also spoke about this in a previous post when I said that we had bought some high top shoes for Owen to use during his walking therapy at the mall.  They helped quite a bit, but they are big, bulky and heavy which causes its own problems. Another HydroMom saw that post (Thanks Jen and the beautiful Norah!) and suggested something called SureSteps for Owen. 

Now I need to back up here for a minute for people who haven't spent the last 5 years in a world of kids who don't walk without assistance.  When you think of braces to help a kid walk, what you probably are picturing are something called AFO's (ankle-foot orthosis) They come in many flavors, but here is a common one:


They are rigid (sometimes hinged, sometimes not) and they go up to just below the knee.  We had broached the subject of AFO's with our PT in past, but she really felt that being so restricted might not allow him to build the proper responses in his feet and might not allow him to build enough of his own strength.  Owen also does't have any spasticity that needs to be corrected with a rigid device either.  So we have avoided them in the past. 

What Owen does have are very tiny feet and ankles compared to the rest of his body.  Bones grow in proportion to the weight that they bear.  Owen has not spent enough time upright over the years for his legs, feet and ankles to be in proportion to the rest of his body.  Imagine trying to support a still too big head and a normal sized torso on those little ankles.  I think this is a lot of the problem.  There may be other issues thrown in there, but it's hard to know until this glaring one is gone when things catch up (and they have been growing rapidly). 

So, back to the SureSteps.  SureSteps make something called an SMO (Supra Malleolar Orthosis). These only go to just above the ankle and they are made from a softer plastic that is flexible enough to allow the foot to bend, while keeping the ankles from rolling from side to side. 


For more detailed information you can visit their web site here

Owen's appointment for his fitting is on September 12th.  I looked over the order form and realized that we will be asked what pattern we would like printed on them.  Their website showed 18 different patterns, so I printed off the top 5 that I thought Owen might like and set them out near him.  Rather predictibly, given his long standing obsession with anything that has a bug on it - and most especially a lady bug on it - Owen repeatedly picked up the page with the bugs on it to play with. 


So, bugs it is. 

We are hopeful that this will help with Owen's balance, and will prevent any future damage to his ankles, knees or hips.  We are still slowly figuring out how much of Owen's balance issues are due to the damage to his inner ear - he's deaf for a reason, everything got squished due to the pressure and it's unknown just how much of the vestibular system is left.  We do know that he will catch himself when he falls over from a seated position and will right himself most of the time before he actually falls over.  This took a long time for him to learn though, so he may be relying on visual cues or compensating in some other way.  The good news is that he did eventually learn to compensate (if that's what happened).  Therefore it is possible that he will continue to do so enough to be able to walk - even if he does need a walker to provide stability.  By giving him the SureSteps though, we are taking the ankle situation out of the equation to make it just a bit easier on him so that he can focus on the balance issues.
Let's Try That Again, In Reverse
So, I'll be ending this blog entry with some really incredible walker action by our little man and then the title will make all kinds of sense.  Before that though we have some medical things to take care of.

When last we chatted about Owen's seizures I described the fact that we were trying out the use of Ativan for short periods when he most seemed like he was going to seize (usually it's when he can't sleep).  Well it turned out that we were having too many seizures while we were in the 7 day waiting period between doses.  It had become clear that it was time for a new plan. 

So last Friday we headed down to Duke to see what Dr. Gallentine had to say.  First he increased the current on the VNS, and then he changed the waveform.  Instead of the current turning on for 250 milliseconds, it now turns on for 500 milliseconds.  So we are hopeful that this will help.  Finally we decided that it was time for some daytime seizure meds.  He had been taking Depakote at night to help him sleep, but none during the day.  In order to introduce it slowly we took the dose that he was getting at night and split it in two, half given in the morning and half at night.  We also switched to the liquid form because it's easier to split a liquid than it is to separate out several hundred little sprinkles inside a capsule that dance everywhere as you try to get them on the food.  If the Depakote doesn't work, then we will try a few months of Tranzene.  The problem with Tranzene is that much like Ativan you will eventually build up a tolerance to it and that tolerance can also effect the ability of the rescue meds to work - but the idea is that we are just buying time until we can work the VNS up to its optimal settings.

The daytime liquid dose began the same game we've always played with seizure meds.  A zombie in the morning when it hits him, then he processes it too fast and he becomes uncontrollably zippy by the afternoon.  As a side bonus though, he started sleeping through the night, which has been a pipe dream forever.  So today we have tweaked the plan a bit.  We are trying the sprinkle form during the day to try and level out the effects, but keeping the liquid at night because we REALLY like sleep.  

The good news is that we haven't seen any seizures in the last few days.  We have also seen some progress in the last few days in his speech, he's making sounds that he hasn't made in a long time.  He crawled up the stairs yesterday, which he hasn't done since last fall.  I think he's been capable but he hasn't shown any interest.  He's also back to roaming the whole house and getting into things again.  He had started to roam some in the last few weeks, but it's non stop now which is a mixed blessing :-)

Walking Progress
Last Wednesday we had a stellar walking day at the mall.  Firstly he wasn't on any meds or seizing, which always increases his performance, hopefully being on the Depakote won't change that.  We also had bought him some new shoes with higher tops to increase his ankle support.  His feet are still tiny (though growing fast) and they don't provide much of a base of support for walking and his ankles are tiny too so they need a bit of help.  We may need AFO's at some point in the future, but right now his PT is afraid that they will actually prevent him from building the strength that he needs.  I do think the hiking boot configuration has helped.  Finally, we decided to try turning the whole rig around.  Owen has always preferred to push something in front of him rather than pulling it behind him, but it is nearly impossible to find a pediatric walker that is designed to be pushed rather than pulled.  So on a whim we tried turning around his existing one.  In the video below it was before we had a chance to increase the friction on the wheels, so Ms. Nacol is in front of him keeping him from going too fast, but look at those little legs go!  And this is only half of the big walk that he did that day!  At the end he did get tired and a bit cranky, but check out the controlled descent when he decides that he's done.

This progress is also a testament to how much the VNS has helped.  Even though we have been fighting seizures, they aren't causing the same damage that they were before and we aren't facing one to two weeks of recovery after each one.  The issue now is that the frequency is so high that we're dealing with it too many days out of the week so if we can just get that down with the meds there's no telling what he will do!
Owen and Jigsaw Become Celebraties

In my last post I gave a link for an article that was done in a local newspaper, the Salem Times-Register which was a very nice article giving an overview of our life with Jigsaw.  A local TV station saw the article and decided that it would be nice to do a news story on us as well.  They came out and filmed today at our house and aired the story tonight.  You can see the whole story as it aired here on the WDBJ7 website.

Many thanks to Meg Hibbert from the Salem Times Register and to David Kaplan at WDBJ7 for taking the time to get to know our family and to spread the word about these amazing dogs and the difference that they can make in our lives.

And of course, we send out many thanks to the incredible people at Saint Francis.  You can view their website to get more information or to make a donation here.

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