The Amazing Owen
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Hopefully New Wheels
It's time again for new wheels for Owen. We started out in a plain old Graco Stroller that didn't fit him well and was probably uncomfortable, but it was what we had as the special needs stuff usually isn't small enough for infants.

When he turned two we started trying to get him something a bit bigger as he was falling out of the above stroller.  Due to, um, shall we say, technical difficulties with the rather unique people at the local equipment store, he ended up being 3 before we finally managed to get the Bingo:

We finally got the Bingo a few hours before we got on the plane to Dallas for the surgery to make his head smaller - you can see the big cone shape of the back of his head still in that picture.  Of course since he had the surgery two days later, it meant that we only needed a lot of those supports for two days.  We still used it for almost two years because he really needed to build up the core strength to be able to sit up for long periods of time.  Eventually he did build the necessary strength and we were able to put him in an off the shelf Britax Blink that was supposed to go up to 55 pounds.  The Blink was awesome because it weighed about 20 pounds less than the Bingo.

This worked REALLY well for about 6 months when he had a massive growth spurt.  His feet now really drag on the ground and even though it says it can go up to 55 pounds, what they must have meant was that it would not actually collapse until he reached 55 pounds - but it would in fact become unmaneuverable when he reached 41.  (Hi Mya!!!)  We have had to revert back to the Bingo for anything other than quick trips because he's just gotten uncomfortable and I keep ramming him into walls.

So we have been in search of a new set of wheels.   He can still fit in the Bingo stroller, but Owen has gained so much weight that the 30 pounds of the Bingo + 41 pounds of the boy + oxygen tanks, etc have reached the point where I have to carb load in the mornings before pushing him and visit the chiropractor once a week.  I only weigh just over 100 pounds and I'm coming close to pushing my own weight in front of me with the Bingo setup.  He also cannot move the Bingo on his own. I would like to make it so that he at least has the chance to self motivate.  I have no idea if he will learn how to use the big wheels on a normal wheelchair to move around, but it is the sort of thing that he tends to figure out given enough time so I'd like to give him the chance.  And he no longer needs all of the support that the Bingo provides, he is quite capable of sitting up on his own. 

So, me being me, I hit the internet and started researching chairs.  The biggest problem that I found was that the pediatric wheelchairs start at a size that is too big for Owen.  Owen is like a little neutron star - made up of extremely dense matter but not taking up much space.  He also has very short legs compared to the rest of his body. Most chairs start at a 12 inch seat depth. Owen only has 10 inches of upper leg to work with.  I also found that most of the pediatric wheelchairs started at 30 pounds, which wasn't any better than where we were with the Bingo.  After poring through countless web pages I finally settled on the Ki Little Wave  It only weighs 14 pounds, the seat depth and width start at 10 inches, and you can customize a huge number of things about it and I think it will fit the bill.  It also has a huge amount of room for growth so if he does not learn to walk it should last him for years and years.

Today we went for a fitting on a demo 10x10 (seat depth and width) chair. 


The chair is absolutely minute, it looks like it should be for little elves.  At first it seemed like it might be a bit small, but it's actually perfect for him as it lets him easily reach the wheels.  The wheels on this demo chair are set way back, but on Owen's they will be moved several inches forward so that he can actually reach them.


I personally think the single handle on the back looks goofy and have opted for double handles.  One single bar would have been better, but that can only be built into the back of the chair and it would be too low for us adults to use until he gets much taller.  I sense a possible engineering project for Mommy in the future to design better handles.


And the final test?  It fit into my Honda Insight, even with the wheels on:


And if you pop off the wheels with the quick releases, you can get it down to a package this small:


We opted for mag wheels instead of spokes so that his fingers don't get caught in them:


And we opted for a pretty blue "Sapphire" frame:


So now we just wait and see if the insurance will let us make this step. We have a very dedicated PT who I'm sure will be able to word the letter of medical necessity correctly to figure out how to get this chair for us. 

While I admit that it is a bittersweet moment - we had really hoped that he would be walking on his own by this age - I am still excited that this might open up the possibility of moving around independently when we are in places where he can't crawl.  And I'm excited about getting him a comfortable ride that suits his needs better than the choices that we currently have.
Jigsaw is Ours!!! (Oh, and Appts too)
So today was a huge day for our family.  In June of 2010 we started the application process for a service dog, without any real idea of where we would end up with that idea.  In March of 2011 we got the call that Owen had been partnered with the beautiful Jigsaw. I, Owen, Sammy and Grandma Q had all met her in either training classes or interviews but Daddy still had not.  Leil, Jigsaw's amazing trainer, was kind enough to send us our very first picture of Jigsaw to introduce her to Daddy:

How could you not fall in love with that face?

It has been a long road since then with lots of hours of training - but it has been tremendous fun too. I have never met a dog that loves to play as much as this one, and who loves to work as well.

This long road has led us to today, when we passed our final tests and were finally awarded our ownership papers!  Jigsaw is now legally ours and we couldn't be more thrilled.  Sammy knew that we were testing today and when we pulled in the driveway she ran outside to find out if we had passed. I knew that we would - Jigsaw really knows her stuff and I knew she wouldn't let us down. She has been a family member since she moved in in March, but it is great to have it official.

From helping Owen to sleep off his seizures:



To warning us of his seizures and helping him through EEG hookups:


She has been a wonder in how much comfort she has brought to Owen. 

But she has also been a great source of joy in just playing too:

And looking beautiful whatever the setting:



Or just being a warm furry friend:


We couldn't be happier that she is now officially, ours forever!  And of course, there must be HUGE thanks to the entire team at Saint Francis Service Dogs for their help and generosity!!!


As much as I'd love to leave it there with Jigsaw, I have to do some medical stuff too while I'm in here as there are some things that need updating in that area. 

On Wednesday we went back down to Duke for a series of checkups.  Owen had his first seizure in three and a half months on Monday. Boo!! But it was good timing anyway as we were headed to the neurologist in two days anyway...much better than if it was two days after seeing the neurologist.  Owen has gained a whopping four and a half pounds since we last increased his meds, so we thought that perhaps he needed an increase in his Depakote dosage. They checked his levels while we were there and sure enough they had dropped off, so we have increased his dose in hopes that it was just a breakthrough seizure because of his weight.  They also fiddled with his VNS a bit more to increase the frequency of the pulses to see if that might help.

I also asked about his EEG results.  Those of you on Facebook will know that I was driving myself straight up a tree with looking at the scribbles and waves on his EEG while we waited (rather impatiently) for the neurology team to give us official results.  I saw things like this from a known seizure in 2010 where we watched him have a full clinical seizure in front of our eyes:


and I was comparing it to things that I randomly found in our readings in November that looked like this:


and wondering why that wasn't a seizure as well. So I asked Dr. Gallentine to explain it to me, and he did. He said that the big ugly dark lines actually had nothing to do with seizure activity, even when it looks like this:


those are all just muscle movement.  Even an eye blink can cause squiggles.  No, he said that the real seizure stuff is slow and rythmic. So if you look at the known seizure one again:


it's the highlighted stuff below in thick red lines (the thin ones are the EKG lines, I should have chosen blue or something to contrast I suppose) that are the actual seizure activity:


And there is clearly nothing like that one the scary looking ones from this year.  And now I know what to look for in future when I spend hours scouring EEG results :-)

And finally we met with neurosurgery.  Owen has never had very good balance but it seems to have gone downhill ever further in recent months. We have also noticed that he has started choking more and more on thin liquids.  Balance problems and choking are a sign of a possible worsening of his Chiari and we'll be getting a thin slice 3D CT scan in early February to take a peek in there to see if anything has changed. These symptoms could also be a sign that he needs to stop chugging his drinks so fast and the seizure meds are messing with his coordination more than we thought. I don't know whether to hope that the Chiari is worse so that there is hope that his walking will improve, or hope that it has not because it is major surgery to get that improvement.

But otherwise Owen has been the happiest he has been in ages.  He is babbling again and he is into absolutely everything, which is as it should be.  We just have to remember to keep the toilet lid closed again.  He may not able to walk, but he is an expert crawler and climber.

"Look, I'm tall enough to see over the counter...I wonder if there is anything up there?"


"Hmmm, nope.  But wait?  What did Daddy just put up there?"


"Ah, yummy success!!!"


And then there is Owen's Christmas present.  I thought the relatives might enjoy seeing what I did with the Christmas money that they sent.  The makeover that I did in Owen's room for his birthday has been a wild success.  He stands up at the handrails almost every day and plays with his toys.  This is excellent, but it requires him (and therefore me) to be upstairs for a large portion of the day to get in really good standing time.  I thought it would be a good idea to give him an area on the main floor where he could get upright as well. As soon as we cleared out the Christmas tree I did this to that corner:


I'm not sure what we will do with the Christmas tree next year, but that problem is 12 months away and for now Owen is enjoying his new play area.  I'll close with Owen catching Mommy in the mirror and giving me a big ole grin:


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