The Amazing Owen
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Update on Owen

So it's time to update Owen's info and how he's doing medically.  If you have been following the family blog at all then you know that he is making big strides in several areas.  I'll repost the highlights at the end of this entry for those who haven't seen them because I like to always end on a happy note.  Firstly though, we'll delve into the depths of Owen's seizures and our decision on school in the fall.

School
I guess I'll start with school.  Last year we tried Owen out in preschool.  In the fall, before the virus season got underway I think it was a good experience for him to be around all of the other kids.  He learned some new words and he gained some skills.  This was great.  And then the viruses started and with them the seizures resumed in earnest.  He eventually lost all of the nifty skills that he had picked up because when Owen seizes he regresses.  By the time we got to spring we were going day by day - will we take him in or won't we?  Every morning we had to ask this question. It was exhausting.  I really began to dread the whole thing.  He was never able to make it through a whole week because as soon as I'd bring him in we'd only get a few days before he would start the cycle of seizing all over again.  In late May I finally called it and said we'd just try again in the fall.

Well we have finally decided that we will not in fact be trying again in the fall.  I will be sad not to be returning because I enjoyed getting out and seeing actual people during the day too, but it is not meant to be at this time.  Owen has made a lot of progress this summer and we don't want to lose it.  We still don't have his seizures anywhere near under control and we can't ask his little body to keep up the pace that he did last year.  And the truth is that Owen is not ready intellectually to learn anything at all that they will be teaching in Kindergarten, and in our county it is inclusion-only so there is no chance of a special needs classroom.  He also missed most of his school based therapies and special instruction last year because they were tied to him showing up for school and he missed more than half of the year.  If we declare him home-based then he will receive those services whether or not he is well enough to make it into school, and without being exposed to all the germs. It has been a difficult decision because it feels like we're moving backwards, but I feel that it will be the best for him in the end.  And he won't be all alone - we will have play dates with Mya and we'll go on lots of outings where he won't have to touch lots of toys that other kids have just put in their mouths.  And maybe, just maybe we'll make it through to June with all of the skills that we started out the year with this time.


Seizures
So the seizure front is still a struggle.  The VNS has made a difference in his overall awareness level, and it still continues to make the recovery time much quicker than it was and his mood is still better than it was before.  However the honeymoon that we experienced just after the surgery has been slowly fading in terms of seizure frequency and severity.  I was inspired by my friend Melanie who posted cool graphs on her blog (sorry, her blog is private I believe so I won't post a link).  It really made it easy to see just how we are doing with the seizures, which is a really subjective thing from day to day.  The seizures don't feel as bad because he isn't a wreck for a week afterward, but the results on the graphs were kind of startling to me.  I broke them down into two categories: big and little. My criteria was that if the seizure resolved on its own, with no need for Diastat or oxygen then it was a little one. If I had to intervene with meds or O2, then it went into the big category.  I should probably have also added a catastrophic category to break out the really horrifying ones, but I didn't. So this is what we ended up with:

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Owen's VNS surgery was in 1/2011.  We weaned the Keppra throughout 5/2011. The really big spike in total seizures was when he was totally off meds and no VNS last year (that was all kinds of fun!)  What becomes rather clear is that particularly since we weaned the Keppra, we are getting quite a few little ones through.  In fact what we often see is a small cluster - two little ones followed by a big one and then a break. 

We really don't want to put him back on full time meds because he reacts so poorly to them.  He cannot go back on Keppra - it made his already touchy GI tract an absolute nightmare and he was completely miserable and in pain most of the time.  We have, for now, tried an interim solution.  Owen's neurological status tends to cycle.  We will get a week of good sleep and then suddenly he won't sleep for more than a few hours.  Once this starts he will start getting more and more manic and zippy and eventually within a few days we will all be exhausted and he will seize. And then the cycle starts all over again.  So, at our last neurology appointment we decided to try giving him Ativan when he starts the cycle of not being able to sleep.  We will give it to him for 48-72 hours and see if that is enough to stop it.  We tried this once for 48 hours and he was fine while he was on the Ativan and for one day afterward, and then he started a cluster.  You can't give Ativan long term and we have to wait at least a week in between rounds of it.  We are currently trying it again.  Last night he couldn't sleep so we started it first thing this morning - which is probably a full 24 hours earlier than we started it last time because we waited for a pattern of two nights. We are also going to try for 72 hours.  I'll let you know how it turns out.

If our Ativan experiment doesn't work out then we'll have to see about adding back in another drug if this trend continues.  Boo.  I discussed this plan with Dr. Gallentine at our last visit and it will probably be Lamictal that we try.  We tried it once before, but it was combined with two other meds and one of them was Trileptal which we suspect was actually making things worse.  We didn't see a whole lot of side effects immediately with the Lamictal, so it seems like a good place to start if we have to get back on that horse again.


On to the Good News
As I said, Owen has made really good progress this summer despite the seizures not being what we had hoped they would be by now.  He has finally started to make some use of his walker now that we have moved to the mall.  He doesn't like to use it at home, it's just too comfortable of an environment where he is used to being able to crawl everywhere.  In the wide open spaces of the mall where he has never crawled though, he is willing to give it a go most days.

 


He has finally learned how to stand on a step stool without going off the side so that we can wash his hands in the sink - he just likes it because he enjoys playing in the water and looking at the lights and mirror:









This has made cleaning up after our painting sessions a whole lot easier!

He is chosing to play in a high-kneel position more and more often, which is building hip strength:




Next up we have Owen doing his work.  Ms. Pat - Owen's Special Educator - made up bags for Owen for each letter of the alphabet that are just awesome.  Each bag has a box with an item that starts with the current letter:

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On this day we had a moon for "M".  He can finally open the box on his own and take out the object!  Then each letter has a book associated with it - this is Owen's favorite part and it is almost always the first thing he pulls out of the bag:

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And then he has a book with a page for each letter.  On each page we glue three pictures of objects that start with that letter, and then we have a stamp pad to stamp the letter onto the page.  The gluing is all hand over hand, but he will occassionally make an attempt to put the stamper on the page if he's in a good mood.  We hadn't started the page for the letter "M" yet when I took these pictures so I showed him looking at the letter "L".  He really loves to look through the book he has made.  No, I don't think he has any idea what the letters actually are or what they mean, but he likes the pictures and maybe he does realize that it is something he made and likes to admire his hard work!

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We have also done a tremendous amount of painting this summer. He still won't actually put the paint brush on the paper under his own power, but he will now let me do it hand over hand with him so he is at least getting the experience of the different wrist motions that are involved. He will occassionally pick up the paint brush and use it to paint his own hands, which is messy but still counts as tool usage I think. 

Finally we have moved Owen to the family table, rather than in a booster seat with a tray attached.  He has finally reached the point where he will leave the plate on the table, rather than just using it to dump all of the food on the floor in one go.  He only uses the fork to bang on the plate and make great, loud noises, but he does seem to be interested in at least touching it again.

So that is where we stand now.  I know that if we could ever get the seizures under control we would start seeing the huge leaps that we have seen in the past when they calm down - so now we just need to get there to keep the ball rolling! 

Today our family and Saint Francis Service Dogs were featured in an article in the Salem Times-Register.  We were thrilled to be able to share our great experiences with Jigsaw with so many people.  You can read the article here.

I will close with this picture from today's walking therapy:

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Jigsaw

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Good Times...
So it has been a while again.  I have all kinds of stuff to put up about Owen's progress. The seizures continue about the same as in the last post.  We are still trying to make the final decision on school next year.  But for this post I just want to put up some great pictures of the fun that we have had this summer with Owen's other special friends.

You have seen Owen's friend Mya in previous posts.  She doesn't have hydrocephalus, but she is special in her own way.  Owen and Mya definitely enjoy each other and this summer they have teamed up for music therapy lessons with Ms. Julie.  I thought I'd share some highlights from those sessions. 

Firstly, Mya got to meet Jigsaw and I think they both enjoyed that very much:

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Music therapy is fun for everyone, Sammy and I enjoy it as well.  Here is some of the action from our sessions:

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And Jigsaw learning to "bump" the tamborine to play with us:

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And how cute is this?  Both Mya and Owen love to touch, and so they are caught holding hands, not once, but twice:

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That second picture is from an outing at the mall. Owen goes there for practice in his walker (video on another day) and Mya joined us in her tricycle. 

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And you can also see Owen showing off his new stroller.  He finally has the strength to sit up in a regular stroller, which has been a blessing to Mommy's back.  It's a Britax Blink and it goes up to 55 pounds.  I'm loving it!

Tomorrow is our last music therapy session for the summer. It has been so much fun that I'm going to be sad to see it over.

And yesterday we had another treat.  If you remember a while ago Owen got to meet Avery (blog here ) and her Mom.  Yesterday we got to meet the rest of Avery's family for a day of fun in the sun.  We had some fun in the pool:

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Owen REALLY liked the rainbow beach blanket they brought with them:

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And Oliver was just sooooooooooooooo cute:

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Avery got to meet Jigsaw:

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And Sammy and Brogan roasting marshmallows:

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And Sammy and Avery played the "cloud game":

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And some nice shots showing everyone having fun in the pool:

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So, we'll get back to the medical stuff later, today was just about the summertime fun!
 
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