The Amazing Owen
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We're Still Around
So, it has been just one day short of a month since my last update and just a few things have happened :-)

On April 19th we headed down to Durham for a whole round of appointments.  The first was more for fun.  We got to see Dr. Kurtzberg and she gave us a tour of the stem cell facility.  This was incredibly cool and I really wish I could share lots of pictures, but alas while my camera was with me, my memory card was not.  So the best I could do was a couple of not-so-great pictures with my phone.  This is one of the storage tanks for the cells:

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These freezers contain liquid nitrogen that keep the cells frozen.  There are quite a few of these freezers, but if you have cells stored at Duke, maybe your kiddo's cells are stored in this one!

We got the full tour and got to see the machines that separate the cells from the rest of the blood, the ones that count the cells, the ones that inspect the cells and all kinds of other things.  This was incredibly interesting and honestly the next time I'll bring my camera and my memory card so that I can share it with you.

We spent the night in Durham and then headed out first thing in the morning for the audiologist.  That went really well.  Owen was in a good mood and they were actually able to do some real testing for the first time in a long time.  They found that he is still responding to voice down to 10 dB, which is great.  However they found that he was responding to low tones much better than the higher tones, so they gave him a new mapping with the higher ranges boosted by a bit.  We have actually seen a noticeable difference in the noises that he makes.  He has definitely added a number of new high pitched sounds to his repertoire since then.

We had a few hours between that appointment and the one with his neurosurgeon that afternoon.  To pass the time we headed down the street to a mall where they have an indoor toddler playground.  Everything there is sized for toddlers, and the floor is made from thick foam.  Again, my camera wasn't in working order so I had to take pictures with my phone.  If you are taking pictures indoors then your subject has to remain perfectly still in order to prevent blurring.  Owen is never still, so the pictures are always blurred.

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Owen was particularly keen on a fun-house mirror that they had on a wall:

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It's a great place to let him get out and crawl for a while instead of just sitting in the stroller all day.  Eventually the fun had to end and it was off to Duke for the neurosurgeon.  This was just a checkup, and we didn't need a CT scan this time.  The purpose was mostly to let the neurosurgeon see all of the great progress that Owen has made.  Unfortunately they were running really far behind and by the time Dr. Grant came in Owen was fast asleep.  But we did discuss what is next for Owen. 

Owen has a Chiari malformation, which means that his cerebellum has been pushed down through the base of his skull by a bit.  This hasn't ever caused any problem with his spine in the past, because his huge head gave lots of room to keep the pressure on the cerebellum low.  When we made his head smaller in the fall, we also increased the chances that the Chiari might cause problems with the spine.  If the cerebellum starts putting too much pressure on the spine you can get something called a syrinx - which is kind of like hydrocephalus of the spine.  With a syrinx the CSF builds up in pockets in the spine and can cause all kinds of problems including problems moving ones legs, problems with swallowing and other issues.  We knew about this risk when we did the cranial vault reduction, but they felt that the risk would be small given that Owen's head would still be fairly large.

A small risk is still a risk though, so we need to monitor the cerebellum and spine.  The problem is that in order to monitor this situation you need an MRI.  MRI's and cochlear implants do not play well together.  In the USA the magnet must be removed from a Nucleus Freedom implant to have an MRI.  In other countries it does not.  Why this difference?  FDA approval.  Same device, but different protocols in different countries.  The removal of the magnet is, in theory, a fairly simple thing.  You make a little incision, remove the magnet, slap a band-aid on it, get your MRI, put the magnet back in and go on your merry way.  The reality is that this is two sessions in the OR to be coordinated with an MRI which turns out to be next to impossible to arrange.  We were several weeks into attempting to get this scheduled when our implant surgeon found out that there has been quite a bit of testing in the US on MRI's with the magnet in place.  They have found that it can be done quite safely with the magnet immobilized using hearing aid molding material.  We are in the process of getting all parties on board to attempt this - with all of the waivers signed for a non FDA approved procedure.  A CT will not show a syrinx, removing the magnet risks infection to the implant and shunt, this new procedure is the least risk and hopefully we can get it all arranged. 

Seizures
Yeah, we still have 'em.  In addition to the one on April 15th from my last post, he had one on April 29th which did cause some breathing issues, but they weren't severe enough for him to go to the hospital.  That one was associated with a nasty stomach virus.  And he had another one today.  We were having an absolutely wonderful playdate with Owen's friend Mya.  We had just come inside for some lunch when he seemed to be having trouble sitting up all of a sudden.  He went from woozy to just plain wilted and then he couldn't sit up at all.  His eyes were open but nobody was home.  Then he started to shake in one arm.  We got out the Diastat.  Just after I gave him the first dose he threw up a bit but the shaking stopped almost immediately and then he just went to sleep.  He never had any trouble breathing.  So, this one was not nearly as severe as most of them because it resolved itself with just one dose of Diastat and he never had breathing issues.  He woke up after about an hour with a bit of a headache, but otherwise just fine.  Big thanks go out to Mya's awesome Mommy for her cool head and help during the seizure, and to her Daddy for taking Mya so that her Mommy could help me.  Big thanks also for being understanding about Mya's wedge which unfortunately caught Owen's lunch.  I thought I'd get the bad news overwith so that I could post the fun that the kids had today.

Today Mya and Owen had a good time playing with Mya's musical instruments:

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And Mya was kind enough to share her old tricycle with Owen so that they could ride together.  These bikes have been adapted nicely and Owen just had a blast.  Their feet are strapped to the pedals so that they get the motion of pedaling, but you can steer and push with the handles on the back. 

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It was a really fun visit - even with the seizure.  Once we got home though he was back to his normal self.   It was a nice day so we had a fire and cooked outdoors.  Here is Owen being his happy little self:

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Go Baby Go!!
Wow, what an amazing few weeks it has been! My apologies for being rather out of touch with the blog community for the last few weeks - I got a new computer for Christmas and it has been a painful upgrade, leaving me in limbo between the two.  But I think we have that mostly solved now and I should be able to join the world again.

But what has really been amazing has been Owen's progress.  Firstly, since stopping the Keppra his mood has just been incredibly good.  You don't realize how rough things have gotten until they suddenly get better and it's like the sun coming out.  The trileptal has been a much better drug for Owen.  The only negative side-effect so far is that it makes him very sleepy right after he takes it. For a while he was falling asleep during therapy and at school, but we've been tweaking the times at which we give it and the dosage and I think we've worked out a schedule that lets him do just about everything he needs to do. 

On January 5th Owen went in for his last cord blood infusion.  We decided to use the last set of cells because this is such a huge time of learning for Owen now that he can move his head.  It was a fairly long day.  You see Owen didn't want to have an IV put in him and he felt very strongly about it.  But Dr. Kurtzberg worked her usual magic and after a couple of hours, with 4 people holding him down and on the 4th attempt, we finally managed to get the cells in:

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After his last infusion it was much easier to tell if he was making more progress because he had completely stagnated for so long.  When he suddenly started signing we knew that things had improved.  This time we are in a period of incredible changes, so it will be much harder to tell.  However, he did finally hit a milestone that we have been trying very hard to meet for three years.  And here it is, Owen has learned how to clap!:

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It may not seem like a big milestone, but we've tried soooo hard to teach him and he finally got it, so we're very happy!

He's just doing something new every day.  Owen has never been able to get that big head off the floor enough to even hope to sit up on his own.  But after his surgery his head control has gotten better every day, and now he can finally do it - he can get himself up off the floor and into a sitting position all by himself!

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And Oh the Places He Can Go!! (With all respect and love to the great Dr. Seuss)  I've saved the best for last.  Before Owen's surgery Owen had managed to take a shaky step or two on the parallel bars that his Uncle Richard gave him, but it always required a rather great deal of support for his torso from someone else and he always fell over after just a few seconds even with support.  That last video I put up of him last October (which you can see here)  which showed him taking a few steps was one video of about 20 that I took that day where he couldn't do it at all, and in the split second before and after that video he had fallen over.  But now.....check out this video where no one is supporting him at all!

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So, it has been a wonderful month.  We have our happy boy back and we are just giggling with all the progress he is making!
 
 
 



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