The Amazing Owen
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Original Entry:
So, What's Up?
I thought I'd use my hours sitting in the hospital (for a little procedure for me, not Owen) to do an update of how the boy is doing these days. 

Firstly we had another meet up at Duke while a couple of adorable girls were getting their infusions.  I was thrilled to be able to hold Miss Claire again, it had been a few months and I really missed her Mommy and Daddy (Amy and Brad) as well since I had spent so much time with them when Owen was in for seizures earlier this year while they were waiting for Claire to be born and then spending time with her in the NICU at Duke.  I can't believe how big Claire has gotten! 


And how could you not love that smile?


Owen looks pretty much like he felt at that point - tired from a long day, but it was great to finally have the two of them meet.  Owen was never allowed in the NICU with me, or the step down unit so he had never gotten a chance to meet Claire in person. 

Claire was also kind enough to share her toys with Owen:


She even shared her most very favorite toy: Mort.  I wonder if she would have been so generous if she had been awake :-)


And I couldn't visit Claire without getting in some serious snuggling:



We were also thrilled to meet a new family whose little one was getting an infusion this day as well.  Introducing Kahlyn Soto along with Owen and Claire:



Owen was enjoying hanging out with two such beautiful girls I think:


Gosh, he looks like Gulliver in those pictures! 

Jigsaw had had a long day by this point too and she had just made herself comfortable and slept while we visited:


Of course the instant she hears the bleep from the camera focusing she opens her eyes, but you get the idea. 

Sure Steps
In my last update about Owen I said that we were going to try out some SMO's from Sure Step to help out his balance to see if we could get him walking a bit better.  They finally came in.  As I will talk about in the next section it's a little hard to know how much they are helping due to seizure stuff, but they certain seem to make him more stable.  Here you can see them on his feet while he's climbing the stairs:


Owen peeking back at his Mommy to see if I'm still there:


He is supposed to be wearing shoes with them, but he is very good at taking the shoes off.  Speaking of shoes, Blake Cotten was wonderful enough to give Owen his old shoes that fit his AFO's, which work much better than the standard Walmart ones that we had.  Blake is the little boy in the middle with the helmet in this picture that I posted a few months ago:

Eventually we did get him to keep the shoes on long enough for a picture:



Owen has certainly picked up speed in walking around on his railings since getting the Sure Steps.  I also have a little video of Owen showing off one of his more impressive skills.  He actually learned how to do this last year, and then lost the ability for quite a while due to the seizures, and then started doing it again after getting his VNS.  I have just finally gotten around to video taping it.  This is Owen climbing the ladder into his sister's bed.  For some reason he is absolutely fascinated with this and will crawl from the living room, up the stairs and into her bedroom to climb the ladder several times a day. 

Well it's the fall and for Owen that has always meant that he enters the most seizure rich season of the year.  The VNS certainly improved his situation - we are only having big ones every few months instead of once a week, and even the big ones aren't as severe as they were before the VNS.  We are not, however, seizure free. 

When last we discussed seizures he was having small ones every few days and they had increased his Depakote and given us Ativan to stop the seizure before it hit if he was starting to act strangely.  As soon as he started taking Depakote during the daytime, we lost most of the progress that we had made with the walker.  If you remember I posted a video back in August with him making an epic walk at the mall, and he had been doing that regularly.  Once we started the daytime Depakote he stopped the long walks and would only do a few steps at a time.  We decided to continue giving it a go though to see if it would stop the seizures. 

On Owen's birthday (September 25th) we decided to take him out on a boat for the first time - we used to spend lots of time sailing and diving and it was time to get back on to the water.  He spent most of the day just completely out of it.  We did give him Ativan, and he was awake, but he was moving very slowly.  The day after that he slept almost the entire day. The next day he was awake for most of the day, but he couldn't pull to stand and even his sitting was very wobbly - since he had no obvious illness or seizure it was time to check the shunt.  We got him in for a CT scan and it showed that the shunt was fine and he eventually got less wobbly and was able to stand back up.  The assumption was that he had had a huge seizure that no one saw.  Or perhaps that whole day on the lake was a seizure, just with no convulsions or vomiting.  A few days later he had the biggest seizure he had had in months and actually needed Diastat. 

So we increased his daytime Depakote again.  Now before the big seizure that we didn't see we thought that perhaps we had started to see some absence seizures.  This type of seizure is hard to be sure about because they are quick, they last less than a minute and by the time you can get to him to poke at him it's usually over with.  After the last increase in the daytime Depakote though they seemed a bit more obvious.  We also had a morning, 4 days into the last Depakote increase, where he had lots of tremors in his hands.  Tremors are a common side effect of Depakote and so I called the neurologist to be sure that we didn't need to do something about it.  He said just to wait and see and it wouldn't be permanent even if the Depakote was causing it.  By the next day the tremors were completely gone- which means it wasn't the Depakote.  He had had yet another seizure without enough outward symptoms for anyone to catch it.  This was scary, very scary.  He is monitored by someone 24 hours a day.  I sleep with a video monitor next to me and the dog sleeps with him.  He is never alone.  So how can I fight what I can't see?  How can I treat the seizure if I don't know he's having one? So it was back into the car to see the neurologist at Duke again.

Dr. Gallentine agreed that something is not right.  We are still giving him Ativan every four days or so, and if we don't he seizes so it's obvious that we are treating the seizures with the Ativan more than we are the Depakote.  And we are having lots of side effects from the Depakote which is undesireable.  He ordered a boatload of bloodwork and an ambulatory EEG.  So once we have the levels back and some more data we will decide about maybe backing off the Depakote and just using the Ativan every few days.  The ambulatory EEG will start on Halloween and last for 5 days.  The bummer is that you have to bring it in every 48 hours to download the data.  That's a 7 hour round trip so we will only be home for 2 out of the 5 days.  Hopefully though it will let us know where we are because things have become so vague.

The Good News 
The good news is that while we have lost some ground with the walking and the seizure frequency, we have seen some progress in other areas.  I need to get a video of him in OT soon.  His OT has these plastic oreo cookies that come apart and their filling has different shapes in them for you to match and put back together.  The filling is not very thick and getting them apart requires some real fine motor skills and yet the first day that she handed them to him he got one after the other apart.  And Owen has never been willing to put something in to a container.  He can take it out, but he wouldn't ever put it back in.  He is now doing it all on his own without even any cueing.  He has started to say Hi again, so we have Mama and Hi.  He has begun to sign more frequently as well and is using "want" on a routine basis in addition to the usual "more".  He is also using the separate sign for "eat" rather than just using more for eat.  So we are slowly regaining some of the ground that we lost in the seizures last year. 

And I will close with a picture of our birthday boy out on the water for his first time - 5 years old, wow!



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