The Amazing Owen
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Happy New Year!!
There actually isn't a whole lot new to report, but I try to blog every now and then so that you know we're still here.  The Onfi + Depakote combination still seems to be doing its job in keeping the seizures at bay for which we are eternally Grateful.  We've had a few run of the mill illnesses - a round of strep, some bronchitis, all the usual winter suspects, but nothing major.  For which we are also grateful. 

We went down to see the folks at CCCDP last month to check on Owen's cochlear implant.  It is working fine and they gave us some new programs to play with.  We are trying to get him a newer model because the one he has is out of warranty and is therefore a pain to fix when it breaks.  Plus the new one has a remote control and can be worn in the bath so that would be nice.

Otherwise things are chugging along.  We had a nice Christmas and I'll close with a video of Owen on New Year's Eve checking out the Christmas decorations at the mall before they took them down.  And I think this is Barbara's first appearance on the blog...Barbara has been Owen's nurse since April and she is awesome!

 
Owen's First Steps!!
Could you hear our screams of joy all the way to your house/office?  Because in therapy today Owen decided to take his first steps.  He did this several times, but this is the one that I caught on video.  What is there even to say about this?  There just aren't words...



and a smaller version for those who don't want to download 59MB...



Oh Yeah!!!!
 
Giggling and Walking
Earlier this week Owen got his shiny new AFO's.  Actually, they are an AFO/SMO combo pack.  Here are the AFOs (Ankle-Foot Orthotics for those who don't live special needs acronyms) with the shoes on:

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and here they are with the shoes off:

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Notice the busy bees - those were Owen's choice and he loves the color yellow.  And finally, you can take the AFO part off, and have just the SMO left behind:

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This way he can build strength with just the SMO, but have greater support for walking.  And check out his greater abilities and confidence with the walker.  You can see where we started with the walker after his Chiari surgery here, but check out below to see what he can do now: (53 MB)



Or in a smaller version:


And just to make your absolute day, I will share Owen having a fit of giggles (possibly because Kathy the PT is tickling his belly while she holds him).  Guaranteed to make you giggle too!

Large File (88MB)



Smaller Version:

 
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:

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

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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:

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Or just being a warm furry friend:

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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!!!

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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:

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

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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:

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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:

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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:

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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?"

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

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"Ah, yummy success!!!"

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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:

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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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Owen's New Room

Well, it's finally done, Owen's new room is finished!  But it's not just any room makeover - it's a makeover with a functional purpose(which is a good thing, because I have little to no home decorating skills!)

For the last few years we have worked hard to make as much as possible accessible to Owen through crawling, since that was what he was capable of.  We wanted to make it possible for him to explore his world and to be able to make choices about what he played with next.  We didn't want to frustrate him by having everything he desired out of his reach. We did an excellent job with this idea I must say - too good of a job really.  You see we humans need a bit of adversity to move us along.  When we get too comfortable we stop making progress and our world stagnates.  It was time to take Owen a bit out of his comfort zone to start making a bit more progress toward walking.  In this spirit I revamped Owen's room so that everything he would like to play with required him to stand up, but also gave him the tools to do so given his balance issues.  So, without further ado, here is Owen's new room:

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I have installed hand rails along the walls to allow him to pull up and to help stabilize him so that he can walk from one toy to another without crawling. I took his favorite toys and mounted them on the walls so that he can play with them while standing up.  I also got a shiny new acrylic mirror for him to look at, because he likes mirrors.  I removed most of his other toys from the room so that he wouldn't be tempted to just sit and play with those.  I bought one of those standard activity tables - the type that is meant to be used for a train set - and extended the legs so that he has to stand up to play with anything on it.  The table is placed just far enough away from the hand rails that he has room to move along the rails, but can also transition from the rails to the table without sitting down:

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You can almost see on this wall:

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that the fabric border above and below the toys, which turned out to be a nightmare to get even remotely straight because I had to cut out those rows of squares from a large quilt pattern and then piece them back together on the wall, is also functional.  The squares have different raised surfaces, including some furry ones, to invite him in tactilely.  The blue background is a fleece material that I put up ages ago for Sammy.  I used to have sea animals that I had sewn for her velcroed to the wall, now Owen loves to run his hands over the fleece.

Here is an overview of the other wall, with a toy that can be reversed on the left, the cool new mirror, a set of jingle bells that Sammy made, and one of his favorite toys that his friend Mya gave him a long time ago but that he still plays with constantly.  The painting of the elephants (which is actually a little coat rack, but it's hard to see the pegs) was a present from Grandma Q.

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This project has been weeks in the making.  Here is a shot of Sammy doing some of the artwork on the table:

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I bought the table unfinished so that I could attach the leg extensions.  I didn't like the idea of a regular table with long legs, I was afraid it would tip if he tried to pull up to stand - this design is very sturdy.  I also bought it undecorated so that Sammy and I could have the fun of decorating it for Owen.  Here is a sampling of our artwork on the table:

Sammy's big lady bug, with embellishments, in the middle of the table surface:

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The bugs around the outside of the table:

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And here is my helper posing with her handiwork:

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She not only helped me with the art, but held things on the wall while I put in the screws and answered the question, "Does that look centered to you?" a whole lot :-) Oh, and Grandpa Q gets some credit in these pictures too, as the dresser that you see in the first one is the dresser that he built for me when I was a kid.  Sammy used it for years and now it is Owen's.  And finally Daddy gets cred for lifting and moving the heavy things for this project!

Finally we removed Owen's old bed.  In May of 2009 Sammy and I made and decorated a bed for Owen:

We made it with walls that were just high enough to keep him in while he slept, but low enough that if he climbed out he wouldn't hurt himself (this picture was taken before the kids switched rooms, so the alcove in this room is on the opposite side as his current room).  This arrangement worked really well for quite a while, until he finally learned how to climb out earlier this year.  Shortly after he learned to climb out of his bed, he learned to climb on to the queen sized futon that we kept in the room because Mommy and/or Daddy have to sleep in his room so often.  Once he had a taste for the wide expanses of the futon, there was no going back to the confines of that tiny twin sized bed!  So, rather than fighting to keep him in the old bed, we just took it apart and moved the futon into the alcove.  The queen sized futon completely fills the alcove, which makes for a nice cozy nest.  And as you can see, we did keep a bit of the old bed in the new room:

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The picture above is a piece of Sammy's artwork from the old bed that is now on the side of the alcove above the new bed.  You can also see a painting of some cute giraffes in the background, which are also a gift from Grandma Q - we all like to paint!  Actually, here is a better picture of the giraffes:

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So the next question is, has it helped?  Does he even like it?  Well, here is Owen 30 seconds after I finished mounting the first toy to the wall:

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I wish that there had been a way to get the whole thing done while he was sleeping elsewhere so that I could spring it on him all at once, but alas that was impractical and so he got to play with each bit as I put it up.  Here are a few more views of him enjoying his new playground:

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We have already seen huge progress in his motivation to be fully upright.  We keep finding him standing up in all kinds of places.  I wish that I had had the camera at the ready more often in the past weeks to catch him at the dining room table, the end tables, the bathroom sink, the writing desk in the living room, and more.  Here is what I did manage to catch though:  Here's Owen checking out what Mommy is making for dinner:

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And trying to climb the stairs the hard way:

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So yes, it has helped already.  And he seems to love it.  In fact even as I type, at 9:12 pm when he should be sleeping he is in fact standing up and playing with his toys in the dark. 

The table has been in for one week now, and the railings for just over two weeks.  This little video shows just how much progress he has made in his cruising in this short amount of time:


He has really taken to the idea with no problem at all.  I'm not going to mention the "s" word in this post, but lets just say that their recent absence has also been extremely helpful in this endeavour. 

So it might not make Martha Stewart happy, and my husband may be right in believing that it somewhat resembles a ballerina studio, but I think that on the whole it will be incredibly useful.  And what's more, Owen likes it.  So happy birthday a few weeks early little man, enjoy!

Oh, and since I haven't brought out many pictures of Jigsaw to make you go Awwwww lately, I'll close with these:

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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:

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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:

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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. 

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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. 

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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!
 
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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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!
 
So Where Are We Now?
Today we went down to Duke to meet with Owen's neurologist.  We were lucky enough to be able to meet up with two other families that were also at Duke today for appointments and I'll get to that fun part at the end of this entry, but I also realize that with all the excitement about Jigsaw that it has been a while since I have done an update about Owen's medical stuff.

Seizures
Owen continues to have some fairly nasty seizures when he gets a virus.  Stomach viruses in particular produce the most spectacular seizures for some reason.  After watching the cycle start all over again when we started having him in school full time again, we decided that it wasn't in Owen's best interests to be in school at this time.  We pulled him out for the last two weeks of school, and we're going to play it by ear as to whether or not he needs to return in the fall. 

So, you may ask, was it worth doing the VNS given that he is still having seizures that are occassionally spectacular and are still not stable enough to take a vacation without having to bail early the way we did in early May?  Yes it was.  We've had two huge seizures in the 5 months since the VNS was implanted.  Our average was every 7 - 9 days before the VNS.  We would go through long periods where we expected a seizure with convulsions and significant oxygen drops every week. Now if he's not in school and not being exposed to viruses we often go two to three weeks without a seizure and they are generally mild. So we're still way better off with the frequency. 

Next would be the meds themselves.  Owen is incredibly sensitive to even small doses of seizure meds and starts experiencing big side effects almost immediately.  The Keppra that he was on starting last Thanksgiving, at a mere 1.5 ml twice a day, caused enough mood problems to need 100mg a day of vitamin B6 to counteract that.  The 100mg of B6 caused nausea so he needed Nexium once a day to counteract that.  And the Keppra constipated him so badly that he was in nearly constant pain from his belly even while taking Miralax at every meal.  He was absolutely miserable on Keppra.  Trileptal made his seizures worse, Depakote made him so sleepy that he couldn't get off the floor, Zonegran zipped him up and ruined his coordination.  At this point we have weaned all of his seizure meds except for a very small, non-therapeutic dose of Depakote at night to help him sleep.  The last time we tried to wean him off the meds it was a disaster, he started seizing almost non-stop and regressed horribly.  He hasn't done any such thing this time.  His background state with no meds is still much more coherent with the VNS than it was on meds before the VNS.

Finally we still continue to see that his recovery time is much faster with the VNS than it was before.

In my discussion with the neurologist today we really talked about the virus thing.  Nothing has ever made any difference with the viruses and the seizures they produce. The VNS has made the recovery time quicker, but hasn't stopped the speech regression.  He did say that there are a lot of kids for whom a virus just means a seizure no matter what they try.  That's the bad news and means that we may not be able to have him in school.  The good news is that many kids outgrow having these seizures all the time as their immune system matures and they aren't catching something every other week. 

And his buddy Jigsaw continues to stay by him during his seizures.  She had been sleeping in this position, but she always opens her eyes when she hears the bleep from my camera that says that it has focused. 

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Intellectual Development
I posted last fall about all the words and signs that he knows.  The problem is that every time he has a big seizure he loses just about all of them because his seizures occur mostly in his temporal lobe, which is where speech is processed.  He has a few basics like "ma ma", "more" and "cookie" and "up" that he seems to keep, but all the rest are just like starting over from scratch each time.  As such we never really get all that far with them. 

He does not know his colors or body parts.  The most complex command he can really handle is "stop that".  He still does not seem to have the idea of objects having a specific purpose - to him a spoon is not a tool to be used to move food into his mouth, it's a shiny object that has a neat shape.  He won't try to make a mark with a pencil or crayon, he doesn't build block towers. 

He does have some really good problem solving skills though.  If he wants something and he has to move something else to get to it, or pull a string to get it, etc he will be able to do it.  He will search for hidden objects, and has a good memory as to where his favorite items are.  Even when we were out of school for three months, the day he returned he unerringly crawled straight to his puzzles which are not visible from the main room and meant he had to go into another room.  He can take the puzzle pieces out and play with them, but he can't put them back in. 

Fine Motor Skills
He can push buttons and knows that they activate lights and sounds and such on his toys.  He can push the keys on his pianos and keyboards and loves to do so.  He does not have any rotary motion though so he cannot turn knobs.  He can turn the page in board books, though not in paper books.  He looks at board books by the hour and has a large collection.  He does not have a reliable pincer grasp and will generally use his whole fist.  He doesn't get the idea of a writing utensil and so doesn't really do more than hold it in a fist grasp with you holding his hand.

Eating
As I said above, he doesn't get the idea of a spoon or fork as having a specific purpose.  He has the coordination for it, and if you work really hard at repeating the motion of putting a spoon into the food and then into his mouth he can repeat it.  If you move the plate though, he will scoop the empty air and put it in his mouth.  He is however, capable of shoveling any type of finger food into his mouth with his hands and he is quite efficient at this.  He will pick up a piece of food, take a bite off and put it down and then repeat the process without shoving the whole thing in his mouth.  He can reach into a bag and pull out items inside while using one hand to hold and stabilize the bag.  He can drink from any cup with a straw independently.  He currently weighs 37 and a half pounds so he is putting on the pounds nicely, just ask my back and my knees and my hands from lifting him :-)

Gross Motor Skills
We have seen huge progress in this area.  He now does a proper crawl with his belly completely off the floor, and can do this at rather high rates of speed. He can get himself into a high kneel position and play with a toy.  He can pull up to stand on almost anything.  He will climb absolutely anything that he can find to climb on.  His favorite place to hang out is on top of our coffee table.  He can cruise anywhere as long as he has something to hold onto.  And, we are finally making progress in his walker!  Check him out in action here:


He is so very close to walking now. We have signed him up for twice a week physical therapy for the summer to try and kick-start his mobility and get him walking soon!

So that's really where we are now in his development.  Since getting rid of the Keppra and the tummy pain that came with it he has stopped having days/weeks at a time where he just whines all day and bites his wrists because of the pain.  He is back to his lovable self that will seek you out with a "ma ma", crawl up to you and put his arms up to be picked up.  Of course he's a busy boy now and he won't stay long before he crawls off again for another adventure, but the smiles are back. 

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And finally we are up to today's visit.  By the sheerest coincidence Owen, Kendal and Blake all had appointments at Duke today.  Owen and Kendal even had appointments with the same guy - Dr. Gallentine the neurologist, and all within an hour of each other.  Such an opportunity could not be missed to finally meet up so we all got there early to have lunch.  It was a bit hectic trying to get five kids (Owen and Kendal brought their sisters along), a dog, three Moms and a Grandma all through lunch and to the appointments, but I'm glad we made the effort.  It's always awesome to meet with other Moms, to get to see the kiddos that you've seen online in action in real life, and for the siblings to get a chance to see other kids whose lives are like theirs.  Blake and Kendal are just adorable and both loved Jigsaw.  I wish I had thought at some point to take a picture of Jigsaw on her first visit to Duke - where she was wonderfully received by hospital personnel, doctors and the kids in the waiting area - but Kendal's Grandma did get an awesome picture of the kids and their Moms by the fountain in the lobby at Duke:

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Good News and More Good News...

The first good news is that Owen had a seizure on Superbowl Sunday.  Well, it's not good news that he had a seizure, but it is good news that the magnet was able to stop it.  No convulsions, no breathing problems.  He just threw up and then went to sleep for two hours (we are used to an 8 hour or more postictal deeply unconcious state after a seizure) and then woke up and had dinner.  A big improvement.  Yesterday we went to Duke and they increased his current. Since his background current will now be as high as the current that stopped the seizure that day, we are hopeful that we are getting into the range where it might start preventing seizures from happening.

And in even more good news we are really seeing some rapid progress in Owen's cognitive abilities.  Owen had a fair amount of background abnormal brain activity even when he was on meds in the past.  One has to wonder if the VNS hasn't calmed some of that down.  The other day I mistakenly set a whole granola bar (one of the soft ones) down too close to Owen.  I generally have to break it into pieces or he tries to shove the whole thing into his mouth, and generally succeeds.  He grabbed it, took a bite and set down the rest of the bar.  I just sat and stared at him.  We had tried forever to get him to do this without success and here he is just doing it like it was natural.  And then last week I put him down on the floor in the classroom and he crawled over to the shelves where the tubs of toys are kept.  He sat down in front of the shelf, reached up and used one hand to stabilize the tub and the other to pull it out. So instead of the whole thing dumping on the floor as soon as it cleared the front edge of the shelf, he carefully put it on the floor.  We spent months and months in OT trying to get him to stabilize with one hand and manipulate with the other with no success and yet he did it all on his own and has repeated this feat almost every day we've been in school since. 

And finally, the big kahuna:  I brought Owen's Crocodile walker into school this week so that he could start using it a lot more.  I have 5 hours a day dedicated to just working with Owen when we are at school, but at home there are 100 other distractions so I thought I'd have more success there.  I brought it in on Monday and we were gone on Wednesday and look at where we are already:





If the mat hadn't been in the way, who knows how far he would have made it. Considering I brought it in on Monday, he was too sick to use it on Tuesday and Wednesday he spent at Duke, that's not bad for two days effort at school! 

 
One Step Closer...
Firstly, on the VNS front, Owen did have a seizure last Saturday.  We didn't expect that the VNS was turned up high enough to be able to stop seizures at this point.  We did manage to avoid convulsions this time, though it was weird because he threw up, we swiped the magnet a whole bunch of times and then he went to sleep.  We thought it was all over, but he woke up 45 minutes later all spaced out and then he would suddenly snap out of it, reach for his toys laughing and then suddenly go back out of it again.  And then he finally started having trouble breathing and we gave him the Diastat.  Definitely wierd.  He woke up the next morning just fine though so at least he wasn't shaky for days.  We go back tomorrow to increase the current again.

In more fun news Owen got a shiney new Crocodile walker just before Christmas.  He wasn't able to use it for a couple of weeks because of the surgery, but we have once again started putting him in it and he is quickly getting the idea of what this thing is for.

These two pictures were taken either the evening that he got the walker.  Daddy is holding his hands to get him to take a step:

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And he is standing up to play his drum:

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Those pictures were taken on New Year's Eve. We had to take a few weeks off for the surgery, and then we tried him again a few times.  Here he is on the 24th of January engaging in his favorite pastime - emptying out the utensil drawer in the kitchen:

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He is certainly standing more freely than he's ever done before!  And then here is today trying some outdoor locomotion:

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And finally, a little video of Owen getting much closer to moving it about on his own:



Not too shabby for his first time on gravel!
 
Owen Climbs the Stairs!
We have been working on this one for a while now and we finally have success!  He actually climbs all the way from the bottom stair, but took some coaxing on the first two steps that I cut out because it took forever until he saw his sister at the top of the stairs and went up after her.  His pants are falling down by the end, but he sure gets there with no problem!

 
Status...

So, you may ask, just how is Owen these days?  Well as always there's good news and bad news.  And as always I'll save the good for last so that we can leave on a happy note.

The not so great news is that Owen's seizures continue. Every time he gets a virus we go through a seizure.  Well, you may think, a seizure every few weeks isn't so bad - and that would be true if they were quick little seizures.  Owen does not have quick little seizures, or at least he rarely does.  This was the scene on the side of the road on I-79 on our way home from the trip to Niagara described in my last post:

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I shoved aside all of our luggage and gear to make room to spread him out.  This is a scene that I would like to see a little less of, and so would Owen I'm sure.

We had been more or less pleased with our local neurologist until recently.  Due to economic considerations he has had to move from his 27 year old private practice to one in the hospital clinics.  Since then you can't get ahold of him, it takes days to hear back from him even with the nurse is uncertain about which meds he's really supposed to be on.  It's a bit nerve-wracking.  I believe that a very good and knowledgeable neurologist is being ruined by "the system".

We had been talking about getting a second opinion even before his neurologist moved - just because Owen's seizures are so severe and it seemed that it would just be silly not to ask around a bit.  Given the overall circumstances we decided to call down to Duke - where so much of Owen's care has taken place - to see one of their pediatric neurologists.  We were lucky enough to get in on a cancellation and went down the day before yesterday.

Just as I was packing up the car to head down on Sunday - our appointment was early Monday morning - Owen had a nice seizure to send us off with.  We ended up leaving a few hours later than planned.

I was pleased with our initial meeting.  The doc spent 45 minutes with us going over Owen's history and examining him.  He agreed that we are currently in a very bad place - so many meds on board that we are experiencing loads of nasty side effects, but also still having all the seizures.  You could put up with the side effects, or at least some of them, if it was stopping the seizures - but it hardly seems worth it when the seizures are staying about the same. 

Owen is currently on three different seizure meds - Zonegran, Trileptal and Lamictal.  He has three different sets of doses that are given at wakeup, 1:00pm and bedtime.  The combination swings him wildly between zombie and frantically happy throughout the day.  His motor skills have been heavily affected by the Lamictal.  He bites his own arm all the time - not to bleeding, but to bruising.  He is constantly in motion hitting (not to hurt, but just for movement) his head, his tray or something else all the time.  He is sleepy all morning and overactive in the evening. He has become less and less talkative. 

The Duke neurologist seemed to feel that all three meds work on the same channels in the brain and therefore their side-effects tend to be cumulative.  We need to get rid of at least some of them.  Owen has also never had the levels of any of his meds checked in his blood.  After reading other blogs where level checking seemed routine I asked our local guy why he didn't ever check levels.  His answer was philosophical and probably has some merit - that if you are still having seizures then you need more, and that if you are not having seizures then you have enough.  But the more I have read lately I see that children really seem to metabolize the meds at very different rates - some will take a lot of meds but process them so quickly that they aren't helpful by the end of the day, and others will take a bit and not process it at all and end up with sky-high levels.  So it seemed that you might at least want to get a baseline for what your kiddo does with the meds.

The Duke neurologist ordered bloodwork for Owen to be drawn before we left the hospital on Monday to see where we were at. Once we get the levels back later this week we will begin weaning off the Trileptal.  Depending on what the levels say, he may bring the Lamictal up because eventually he wants to end up with just the Lamictal and a new drug Depakote.  Apparently Lamictal and Depakote work well together.  This is going to be a long process and at the end of October Owen will be admitted to the hospital to the epilepsy lab.  There they will also take away the Zonegran and hope that he will have a seizure during a week of continuous monitoring.  Since Owen's only trigger appears to be viruses, it's hit or miss if he will have one or not, but hopefully removing another med will lower his threshold and being in a hospital brings up the odds on having a virus.

We want to catch a seizure in action for a number of reasons.  Beyond it just being helpful to see it on an EEG, we want to see where the seizure originates from.  There is a very small possibility that Owen might be a candidate for surgery to help control his seizures. With the extensive brain damage that Owen has, it is likely that a whole lotta things are mis-wired up there and that there isn't a single point which is causing the seizures.  If there is more than one "focal point" generating the seizure then surgery won't help.  However the fact that Owen's seizures always follow the same pattern and always affect the left side of his body only means that there is a reasonable chance that they are in fact always coming from the same spot.  If so then he might benefit from surgery to help control the seizures.

We also discussed the possibility of a Vagus Nerve Stimulator (VNS) which is a small device implanted just below the shoulder.  It acts sort of like a pacemaker for the brain and has been helpful for many people. 

We know that the odds of control with meds are very low at this point.   Once you have tried two different meds and failed to affect the seizures, the odds go down to something like 10% for each med you try thereafter being effective.  But, we are going to at least try the Depakote before we bring out the knife again. 

So, that's where we are now with the seizures.  Now, on to the good stuff!

Today was Owen's first day at his new preschool.  He had been going to the same Montessori school that his sister attends for the last two years.  He only went a few days a week and it was wonderful that he was able to have that interaction with the other kids.  We were very grateful that they welcomed him into their classroom.  This year, however, Owen was eligible for the Virginia preschool initiative in the public schools.  It wasn't an easy decision to leave an environment that we were comfortable with, but in the end we decided on the public school.  They have just built a brand new school right across the street from us and it is an incredible facility.  They also can offer lots of adaptive technology and have bent over backwards to make his classroom accessible.  He will have teachers with lots of experience in special ed working with him.  They have ordered a special tricycle to help him navigate the hallways, they have adapted swings on the playground, they have brought in a chair with sides from him to use while working.   We just couldn't turn down that opportunity for him.

Today was his first day and he had a great time.  He's still a bit shaky from his last seizure - and a bit icky from the cold that brought on the seizure, but he still played with toys and enjoyed the swings.  I think it's going to be really good for him.  Owen qualifies for a one-on-one aide.  The aide that had been with him for a year and a half quit before school started and we were scrambling a bit for a while there, but it has worked out allright.  I was originally going to be a substitute special-ed aide this year - just to get me out of the house a bit.  So, instead of being a sub they just promoted me to full time aide and for at least the next few months I'm going to be Owen's aide.  There will be other aides that will be shadowing me throughout the year and if Owen's seizures calm down we might transition him to someone else and I'll take on another kiddo in the same school, but that's a long way off given where we are right now. So I get the job I wanted and Owen gets to go to school.  Everyone wins!

Allright, that's a lot of verbage, time for a picture!

Here is a blurry, useless picture that I took of Owen at school today:

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He wouldn't sit still long enough for me to get a picture with my phone.  The phone requires the subject to be absolutely still if you are inside, and Owen is rarely absolutely still unless he's asleep. But you can see the really colorful rug that they have in the classroom that he loves to crawl on.

I also put together a little video of why it is that we can't get a still picture of Owen anymore.  Just ignore Mommy's commentary - I didn't have time to find a soundtrack - and enjoy watching him climb around:



I will close with a picture of Owen and his sister hanging out in their favorite rocking chair:

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Growth!
As I have mentioned in previous posts, in our living room we have a big computer monitor set up that cycles through all 12,000+ pictures that we have taken since our daughter was born.  It's a nice conversation piece and at least once a day one will catch someone's eye who will point it out to the whole family.  This is cool. 

Yesterday a picture went by that really showed the incredible growth that Owen has had since his surgery to make his head smaller. The picture was this one:

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taken on May 20, 2009.  Now I know that this picture is just over a year old and you would certainly expect a fair amount of growth in that time, but I'm not talking about just any growth.  Take a look at Owen's legs in that picture, and then in this one:

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which was taken on June 17, 2009.  Look at how tiny his legs are in comparison to the rest of his body.  They are seriously out of proportion.  He was just starting to stand up a bit and was bearing full weight on them for the first time ever and that really showed in his growth.  Despite the stander, bouncer and walker which all allowed him to put some weight on his legs, it still wasn't enough to get them to grow to a normal length - bones grow in direct proportion to the weight that they bear. 

Now take a look at the picture I took tonight:

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Not only do you get a nice view of the head size/shape change, but look at the difference in his legs. Owen's surgery was on November 3, 2009.  In early October of 2009 I measured him for his stroller.  I measured him again on April 10th of this year.  The results were rather amazing. 

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Measurement October 2009 April 2010
Top of Head to Seat (1) 25 24.25
Top of Shoulder to Seat (10) 14 14.25
Actual Seating Depth (3,4) 8 9.5
Lower Leg Length (12) 7 8
Foot Length (5) 4 5

All measurements are in inches.  The first measurement is interesting because it actually got .75 inches smaller - that is how much they took off the top of his head.  The second measurement shows that he only grew .25 inches in his torso during that time.  Now, unfortunately I didn't take just a plain old full leg length measurement, but based on those measurements and his height you can surmise that his legs grew between 2.0 and 2.5 inches in that time.  Compared to the quarter of an inch for his torso that is quite a lot of catching up that his legs are doing!  He also had tiny feet and you can see that their length has increased by a full inch.  These measurements are all confirmed by the fact that I had to buy him all new clothes and shoes - thanks to Nacol for all the hand-me-downs from Noah, they were a lifesaver!

I remember how hard it was for him to stand up in those earlier pictures.  It was such a struggle and he could only keep it going for a very short time.  Tonight I just put him in front of his bed in a crawling position and told him to stand up.  He reached up and stood up in a matter of seconds with ease and stayed up there while I took the pictures.  Of course when he saw his sister in the bed he did something else he couldn't have done last year and just got in with her:

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He was more interested in his sister's stuffed bear than he was in Mommy trying to get him to look at the camera, but that's OK.

I will have to do all of those measurements again soon, but it's easy to see just by looking at him how much his legs have grown - and having bigger legs is just what he needs to get walking!  Owen now weighs 33 pounds 7 ounces.  Just after his surgery he weighed 30 pounds even.  Three and a half pounds in seven months, that's not bad!
 
By Leaps and Bounds

So, when last I wrote Owen was trying out some new seizure meds.  Things have been going pretty well with them - no seizures and he has adjusted well to them, but a few days ago Owen started being really irritable and biting people again - it was reminiscent of the Keppra days.  Yesterday he had his seizure follow-up visit with his neurologist and we discussed the new behavior.  At that time we had been taking Owen's daytime dose of Trileptal and Zonegran and splitting them in half - giving a quarter dose in the morning, a quarter dose at lunchtime and then the last half at bedtime. The label says give him 1/2 of each in the morning and 1/2 at bedtime, but he just couldn't function during the daytime that way. Owen's behavior was definitely the worst in the morning, getting better throughout the day.  So, Dr. Wilson suggested eliminating the quarter dose of Trileptal first thing in the morning as it makes Owen tired and it might be making him cranky to get something that makes him tired right after waking up.  We tried it today and it was the best day we've had in ages.  I don't know if it was just a coincidence, but I'll take days like this anytime for any reason:



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Owen has been making incredible progress in his physical abilities in the last few weeks - and in his intellectual ones too.  I've put together a video of some of his latest accomplishments.  Owen has never really gotten the hang of tool usage -  he just eats all objects that he is given and never attempts to use them for any specific purpose.  One of the places that we have started in OT with this concept is to get him to bang a drum with a stick.  We have been working on this forever.  It's a bit hard to see in the little video that I can upload to the web, but in the first bit he is happily banging on a little drum with a stick. 

From the drum we move onto his new ability to CRUISE!!!  He can take steps sideways while holding onto things.  He starts out holding onto the gates where his toys are tied up and makes his way to more toys on the couch - all under his own power.  This is just so cool (Yes, Mommy is bouncing)!    After that is just a bit of him practicing standing up from a kneel - this one is for Ms. Nacol his PT, just to prove that he really did it :-)   Next, he shows how he can crawl from the floor up to toys on the couch using his stairs. It's not graceful, but it is effective.  Finally, you can see him working on his walking - he's taking steps with just holding onto one of Tessa's hands. 

Enough verbage...here's the small version video for low bandwidth (less than cable modem):

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And here it is in DVD quality for grandparents who are willing to wait for it, or those lucky people with cable modems or better:

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Not bad progress at all!
 
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!
 
Downs and Ups

It has been a couple of weeks since my last update and a lot has happened both awesomely great and not so great. 

As always, we'll get the not so great parts out of the way first so that we can end bragging on all the progress he has made.  After three seizure-free months Owen finally had another one last week.  Owen has only ever had one of the TV-Classic, previously known as Grand Mal and more modernly relabeled tonic-clonic, shake and jerk all over the body seizures.  Instead Owen usually follows a pattern of vomiting, choking and then losing conciousness for a few hours.  In the past, before the Keppra, Diastat and home oxygen, Owen would also lose his ability to regulate his breathing right after he threw up - which would land us in the ER with a breathing tube.  The Keppra is an anti-seizure med that he takes twice a day that is supposed to prevent the seizure from happening.  The Diastat is an emergency anti-seizure med that you give after a seizure starts. 

So, last Tuesday (December 1st for my record keeping) he was coming home from school and Tessa heard him choking in the car seat.  She pulled over and hit him on the back to clear his airway and he started breathing again just fine, but he then lost conciousness.  She was only about a mile from the house so she brought him here and we hooked him up to the pulse-ox. (BIG Kudos to Tessa for quick thinking) His oxygen was fine, but he wouldn't wake up for anything so we gave him the Diastat.  Now the general idea with the Diastat is that you give it to him if a seizure lasts more than 5 minutes, then wait five more minutes and administer it again if he is still seizing.  The problem is that Diastat puts him to sleep, and so does the seizure so I'm not sure how you're supposed to know if you should give him the second dose.  However after the first dose his reflexes were more responsive so we didn't give him the second one. 

He was being monitored on the pulse-ox the whole time and his vitals were perfectly stable so we just called the neurologist's office instead of 911 (per the neurologist's instructions).  He said that it's normal after this type of seizure to sleep 2 to 3 hours and to call him back if he didn't wake up in that amount of time.  After two and a half hours he woke up and started signing for food as if nothing had happened.  The neurologist upped the Keppra dose to 2 ml twice a day from 1 ml twice a day. 

Which brings us to problem #2 - Owen's GI tract.  There have been many discussions of poo on this blog and I suspect there will be many more. As I figure this blog is mostly an educational tool, I tend to describe the situation more than I would in polite company. It's honestly Owen's biggest problem and has held him back more than anything else.  Constipation is very common in kids with hydrocephalus partly because they have limited mobility and so don't stretch out the body and spend as much time upright as other people.  There can also be muscle tone issues inside as well as out.  We have been battling the poo wars since Owen started solid food.  A few weeks ago he was fed some bananas at school - we had never thought to put that on the list of banned foods because he isn't allergic to them (like he is to everything with milk or eggs).  But they do have the effect of stopping up the whole works and that they did.  After several days of enemas and massive doses of Miralax we did finally get things moving again, but only for a day or two.

Since then he hasn't been able to produce anything on his own without the help of an enema.  The worst is that this is an incredibly painful situation for Owen.  He cramps and then just cries and cries...it's really quite painful to watch for Mommy and Daddy.  And when you are in pain you don't want to do therapy or anything at all.  We are somewhat worried that it might be the increased dose of Keppra that may be doing it - since that is a known side effect.  When we were down at Duke yesterday for a CT (that will be covered in the good news section) we also had them do a shunt series - which is a series of x-rays that shows the entire shunt tract, and also incidentally shows the entire GI tract.  I sent those images to Owen's GI doctor today and he should get them tomorrow to tell us what he sees and what we can do. 

OK, so onto the good stuff!

Yesterday we took Owen down to Duke for his follow-up CT scan from the big surgery.  And the good news is that his current shunt is keeping things nice and stable!  There is no need to have a shunt revision!!!  And a few more !!!!!  As a parent, the worst fear is that you will make a decision that will somehow make your child's situation worse than it was and that was certainly a possibility with this surgery.  It is an incredible relief to know that all is well inside his head - and with all of the progress he has been making with his mobility we are completely sure now that we made the right decision.  So we have a lot of !!!!'s about the way that this has all turned out. 

The CT scans look just about the same as the ones that were taken right after the surgery, so there isn't anything new to post there.  The shunt series though did have two interesting x-ray images that I thought were worth sharing.  They show the lines in his skull where they took apart the bone and put it back together. 

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The big circle with the dot in the middle attached to a bunch of electronics is Owen's cochlear implant.  The other wirey thing across the top of his head is the shunt.  You can see how they pieced everything back together. 

And now for the benefit of all this surgery.  Owen's mobility has just increased by so much.  The other day he was sitting on the floor next to me, next to the couch.  He saw a toy that he wanted which was sitting on the couch.   He turned around, pulled himself up and grabbed the toy as easy as could be.  He has done this many times since.  I did get a video of one of his attempts.  This isn't one of his more graceful attempts, but it is the one that I managed to catch:

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Owen's vocalizations have really improved too.  He's saying "na na na na" for no now.  And he is saying "da da da da".  He did not have either of these sounds until after the surgery.  And he is putting them together with all of the sounds he had before to make much more complex "words". 

Owen can now transition from a sit to a crawl without falling over almost every time now.  This is huge because it means we might actually be able to let him sit by himself soon without needing to be right next to him the whole time.  I'm going to try to get a video of that manuever soon.

So, all in all, it's going quite well.  We couldn't be more pleased with his recent progress.  I'll close with a picture of Owen and his sister checking out the train that goes around the Christmas tree:

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September and October

Oh I have lots to update about!  This is going to be a long one, but I promise there are pictures and videos with this one!

Where to begin??  Well, let's get through the medical stuff first and then work our way to the fun new things Owen is doing.

A Pester of Doctors
There was a cute little anecdote that I wanted to share when I finally got back around to discussing Owen's seizures.  Owen's last seizure was much less severe and he was back to himself by the time the ambulance got to the hospital so we weren't in a panic when we got there.  We brought him to Roanoke Memorial Hospital, which is a teaching hospital and so you expect there to be some extra bodies in the form of students and residents, and this time was no exception.  There had to be 8 different people in the room all at once, with a doc, a resident and student from three different specialties all in at once.  We are generally patient with this sort of thing - everyone has to learn sometime.  This time I did get a bit testy when there were two different people actually trying to put their stethescopes on him at the same time while another was trying to examine him.  I kindly explained that hospitals are stressful places for children and that perhaps only one person should be examining him at a time :-)

Anyway, after they all filed out of the tiny room in the ER I turned to my husband and said, "If a group of geese is a gaggle, and a group of cows is a herd, what is a group of doctors?".  He answered, "I don't know, maybe a Pester?".  And so from that day forward I will never be able to see a group of doctors making rounds without smiling and thinking of them as a "Pester of Doctors".


Seizures
OK, so before this August Owen had only had one known seizure and that was as a result of an incredibly high fever during a shunt infection.  On August 23rd he once again had an incident where he threw up and stopped breathing properly.  His O2 sats dove - we had seen this once before on April 12, 2008.  Both times when we found him he was limp and unresponsive and required intubation for about 8 hours before his body started picking up the slack.  He showed no sign of his body shaking as if in a seizure until hours after the initial incident.  In the April incident they *thought* that maybe he was having a seizure a few hours later because he was shaking, but it was so mild and it didn't *look* like a seizure, it looked like he was shivering.  This August there was no question that a few hours later he had a full blown grand mal (these days known as a tonic-clonic) seizure and it took ALOT of meds to stop it.  In the past few months Owen has also had a few minor incidents where he has thrown up a bit and then soon after gone to sleep but they were so mild and it was at nap time anyway and he woke up happy that I assumed it was reflux and late naps.

When he had another seizure on Sept 9th we started looking back at things in a different light.  This time there was no vomiting and no breathing issues, but it was a fully involved (meaning the entire body, not just one side or part) tonic-clonic seizure.  In both of his previous incidents we assumed that the breathing problems were due to an aspiration, but in both cases the chest x-rays were clean.  We were forced to accept that perhaps it was a seizure that caused the vomiting his breathing problems, not the other way around with the breathing problems causing the later seizures.  In all cases he was asleep when the incident occured.

We also looked at the fact that the last two seizures were associated with the onset of a virus.  In some kids the ramping up of the body's immune responses can trigger a seizure.  Given that we were entering cold and flu season, and every other virus season, it seemed that it would be prudent to put him on a low dose of anti-seizure meds to try and prevent this from happening.  Since Dr. Wilson, Owen's neurologist, had been so against medicating him in the past for a few isolated incidents we really valued his opinion when he said that he thought it was time.  So, in addition to the emergency Diastat, pulse-ox sensor and O2 that we had before - we have added a low dose of Keppra.

We were worried about side-effects but Dr. Wilson assured us that this is a very safe medication that has an extremely long track recond.  And seizures are bad, and in Owen's case infrequent but usually life threatening.  The thing is though, the Keppra seems to be agreeing with Owen.  He has made some sudden leaps in his physical abilities.  We know that he might have just been ready to do that anyway, but it is rather remarkable how far he has come since that last seizure.  So it certainly isn't hurting him anyway!


Cranial Vault Reduction Surgery
OK, I want to end with the fun stuff, so I'll get the surgery discussion out of the way here.  All of the plans have been made.  We have shipped everything we will need for the 10 days out to Dallas.  The airlines want $20 for the first checked bag, and then $30 for each bag after that.  Given the fact that we have to bring Owen's food since he's allergic to milk and eggs this would have gotten expensive to bring it with us.  Plus you run the risk of them losing the bags.  We figured it would cost at least $60 and probably $90 to bring our clothes and supplies with us.  It only cost $50 to ship it out (thank you Uncle Tom for storing it and bringing it to us when we come out!) and now we don't have to fuss with it in the airport.  Getting Owen through security is going to be interesting with all of his hardware.  The cochlear implant will set off the alarms nicely I should imagine - though it's fairly obvious what it is. 

This week we are in quarantine - nobody in or out. If Owen has even the smallest temp or sniffle they won't do the surgery so we're not taking any chances.  Sammy and Owen are experiencing a week of home-schooling.   We run a risk on the airplane but it's three days of driving from here to Texas and that just isn't realistic.

So in just over a week we'll be sitting in Dallas awaiting surgery again.  It's not easy to think of going back to the worries of infection and such, but when you see the videos further down you'll know why we think it's worth it.  Owen is working sooooo hard toward moving on his own and this will hopefully make that much more possible. We will be posting during and after the surgery from my phone and laptop so that you can keep up to date.

OK, Now the Fun Stuff
OWEN TURNED THREE!! 
We had a dinner with his Aunt and Uncle, and then a few days later we did a cake with some family friends:

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Sitting Up Like a Big Boy!
Owen's sitting skills have improved to where he can now have a snack in his green cube chair without sliding down onto the floor:

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Mmmm, pretzels and juice - with a side of architectural training!

Crawling
Remember how I said that he's made huge progress in his physical abilities in the last month, well here's the proof!  Owen is a tiny little guy.  He's below the charts on height, but his head is bigger than mine - so progress in self movement has been slow.  Suddenly though he decided he was going to do this, he was going to get to his toys under his own power and he wasn't going to roll to do it.  He started with the register in the little upstairs bathroom.  I have no idea why the register holds so much fascination for him, but if you put him down in the room he will do everything in his power to get to it.  And here is a video of him doing just that:

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He has now gone from just crawling a few feet across the bathroom to crawling from the living room, through the office, down the hall, through the bathroom and into our bedroom.  He doesn't get his belly off the floor - it's more of an inch-worm kind of thing - but it's effective!

Walking
And now for the big kahuna.  For Owen's third birthday his Uncle (with design tips from his Aunt) made Owen a set of parallel bars that are fully adjustable.  They started out like this:

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And ended up like this:

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He took them apart for moving them to our house and he and Daddy assembled them in Owen's room:

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And a few days later he was giving them a try in physical therapy!

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And you can see the results here:

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It has been a crazy, exciting month for Owen and we can't wait to see what he will do next.  I'll close with two pictures of Owen and his sister:

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Mya and the Green Chair

This month we were very excited to meet Mya and her family.  Mya and Owen share the same physical and occupational therapists, and these therapists thought that it would be good for the two families to get together.  They were right.  Mya is a beautiful girl and her parents have come up with some really creative ideas to meet Mya's special needs. 

On the first visit Mya's Mom Beth came to our house to see all of the things that we have created for Owen.  Then a few days later Owen, Sammy and I went to Mya's house to meet her and to see all of the things that her parents had made. I came away with so many great ideas, and it was wonderful to talk to another Mom that understands the life of a special needs parent.  I think it was great for Sammy to see another home where it's *normal* to have therapy equipment and special furniture everywhere -it was a good perspective to see that her family is not the only one out there that has this different kind of life.

Neither Owen nor Mya are really verbal - but they did "talk" to each other quite a bit.  And Owen was intrigued to see someone else that can't walk and spends a great deal of time on the floor too.  They layed together on the mats and chatted.  Owen can get frustrated when he's with other children that can walk and run - I think he enjoyed not feeling that he was being left behind and could just relate on the same level with another kid.

We tried to get some pictures of the kids together.  Three children will never look at the camera at the same time, but it was nice to have a couple of shots to mark the occassion:

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Mya's parents were also very generous with some of the items that Mya has outgrown.  I can't thank them enough for sharing these items with us.  The one that we have gotten the most use out of so far is a little green chair that fits Owen perfectly:

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He can even kick back and relax when he has something to put his feet on:

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But the best thing is that as soon as we put the chair in front of something that he could pull up on he reached out and just stood up.  All on his own and without months of therapy to show him how to do it!  We weren't even touching him, just standing by in case he fell.  How nice to have something just come easily for a change!  I took a video of him pulling up onto his ladder a few days ago.  He pulls himself up and then reaches up and grabs a book.  He needs a bit of help to sit back down, but it's an amazing jump in abilities! 

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Therapy of All Kinds

OK, time to catch everyone up for the last month and there is a lot to tell.

Owen now gets therapy every day of the week.  Monday is physical therapy (PT), Tuesday is occupational therapy (OT), Wednesday is PT again, Thursday is OT again - with a focus on feeding, and Friday is speech therapy either at home or in Greensboro, NC.  I realized just now that I don't have any new pictures of OT (sorry Vesna, I'll get some this week) but I do have a lot of pictures and videos from the other therapy types to share.

One of our main focuses in PT and OT right now is arm strength. Since Owen can't crawl, he has not put as much weight on his arms as a normal child and therefore needs to build up some muscle to be able to push buttons and do other basic tasks.  Here he is with his PT Nacol and attendent Tessa working on the ball to prop himself on his arms:

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We are also working on getting him to stabilize himself with one arm or hand and do some kind of activity with the other hand.  This is very important because right now he tends to use both hands in exactly the same way at the same time for all tasks.  An example of where this is a problem would be trying to take apart a stack of cups. You want one hand to hold the bottom of the stack and the other to grab the top cup and pull.  This is a bit beyond Owen's capabilities right now because he will try to pull with both hands and can't get them apart. Kids normally learn how to use two hands to do two different things by needing to stabilize themselves with one hand while sitting or standing and then having only one hand free to work with.  Owen is finally making some progress in this area:

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I realized recently that I had somehow managed to completely miss having any pictures of Owen's speech therapists.  This simply won't do.  So I brought along the camera to one of Owen's speech therapy sessions with Emily in Greensboro, NC.  Emily specializes in children with cochlear implants and has been a great help with Owen.  Owen really seems to enjoy his sessions with Emily:

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I also have a little video from this session. The video is in three short segments.  In the first you can see Owen saying the all important "Mama".  We have now had several straight weeks of Mama's every day so I think we can safely believe that the word is here to stay.  Yippee! In the second segment he is just being cute - we have been working on drinking from a cup in OT and when Emily gives him a bucket with a toy in it he mistakes it for a cup and tries to drink from it.  In the third you will see a major milestone for Owen.  It appears that Owen has finally achieved object permanence (normally achieved around nine months old).  In the past if you showed him an object and then hid it by placing a napkin over it or something, he wouldn't cry or try to find it - he would simply move on as if the object had never existed.  I went to take a video of this a month or so ago, because it's really weird to watch him get all excited about a cookie and then forget it was ever there, but when I finally got the camera out he actually went and looked for the cookie for the first time.  In this video Emily hides an airplane and Owen actually goes and finds it.  Click on the image below to see the video:

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Owen also has a speech therapist that comes to the house. It isn't practical to make the two and a half hour drive to Greensboro every single week.  We tried it for a while and he got so cranky that he wasn't getting anything out of the therapy. So Melissa comes on the off weeks to work with him.  Melissa works with him on signing and speech. 

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Now back to PT.  In addition to arm strength we are working on standing.  Owen still looks like a bit of a bobblehead when he stands, but he is definitely improving.

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And we have another little video of Owen standing up:

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I also have a quick little video of Owen riding a little fire truck. We are working on his core strength to help with his standing.  This toy originally belonged to his sister Sammy.  On a whim I took it out of storage.  I sat him down on it and away he went.  He can only go a few pushes before he falls off, but he certainly seems to get the idea:

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And finally we have the best therapy of all - a VACATION!  Owen has worked incredibly hard since his shunt revision in January and he deserved a real break - along with the rest of the family.  Last summer vacation plans had to be cancelled because at this time Owen was just getting out of the hospital after three weeks with a shunt infection and would spend another month recovering at home.  What a difference a year makes:

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This is Owen standing at the railing looking out at Niagara Falls.  Owen did amazingly well on his 10 day trip from VA to Niagara Falls, Canada, to the Adirondacks in NY, to Mystic Seaport in CT and back home again.  He handled the traveling with no problem and we had a great time visiting family, friends and interesting places. 
 
Therapy and Welcome Tessa!
About a month ago we started the process of getting Owen a helmet so that we could try some riskier moves in therapy without worrying about hurting his big noggin.  It finally came in on the 19th. It doesn't fit very well, but it will do for now until we can get another one fitted and made:

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Owen was busy eating his keys, but it kept him happy while we fussed with helmet. 

We also welcomed Tessa, Owen's new attendent.  Attendent is the word that Medicaid uses for the people that they pay to come in and work with the kids and stay with them so that Mom and Dad can get something done during the day.  Owen and Tessa seem to really get along well and she really gives him a workout throughout the day - practicing his sitting and standing and talking and all that sort of thing.

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Owen continues to work on his standing:

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And on his sitting with appropriate attitude:

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And on proving that he still loves his therapist Nacol, even when she works him really hard:

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And here you can see him not only sitting up on his own, but also feeling confident enough to reach out for a toy:

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Owen's hearing is coming along nicely.  He can recognize so many commands now.  The other night we were sitting down reading a book and I repeatedly said "Turn the page" and time and time again he reached up and turned the page for me.  He has repeated this many times since.  We are fairly certain that he is saying "Hi" now.  It's always the first thing I say to him when I turn his implant on in the morning.  About a week and a half ago he started saying "h" "h" "h" whenever I turned it on.  Now he says "h" 'h" "i" "i" as if the sounds were two separate words.  But he is definitely trying and he's getting closer every day.  He is also starting to mimic sounds more and more often. 

So once again, we are thrilled with our little guy's progress!
 
Owen Uses His Ladder
As promised, I got some better pictures and a video of Owen standing at his ladder.  I dusted off the old faithful seven year old camera for a few quick shots.  Last week he was able to stand for about a minute.  This week he stood for a couple of minutes. He is building up stamina quickly.  I really wish I had thought to time it, but I was too busy taking a video.  First the pictures:

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And then a short video clip.  He actually kept on standing for quite a while after this video finished, but video files get huge fast so I just showed the first part where he stands up and finds his balance.  Click on the picture to play the video:

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So it was a great day in therapy again.  His Daddy, Sister and I are all working on a project for Owen that I hope to be able to unveil early next week. Exciting times at the Higgins house!

 
Owen's New Toy

During a recent visit by Owen's grandparents, his Grandpa Q made him a new therapy toy.  This was something that I had been wanting to build for a while now, but had not had the chance to do. 

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If anyone has wondered where I get the woodworking skill to make the walkers and trays and such, now you know.  That's Grandpa Q (my Dad) standing next to his creation.  It's a ladder type thing that will give Owen something easy to hold on to at different levels to build arm strength and to help with his standing.  Here is a side view:

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It's at a nice angle so that he can apply just a bit of downward pressure.  We tried in Monday's PT session.  It worked like a champ.  My camera battery died before I could get a picture of him standing at it, but I did get a few of him clearly using it to steady himself:

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I'm really looking forward to seeing this help him in our quest to get him standing up on his own.

 
Owen, Inside and Out
Before we get to the GI appointment from this morning, I thought I would share a few pictures from last week's joint therapy session with Owen's PT Nacol and his OT Vesna.  They are working together to come up strategies for increasing Owen's arm strength.  They really worked well together.  In fact it went so well that they are planning on doing a joint session every month.  I think it was definitely worthwhile:

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You will also notice the student who is helping.  I am very sorry to say that I cannot remember her name, but she is currently making the rounds with Nacol and she is very nice.

OK, so on to today's GI procedures.  We are still struggling with Owen's reflux and constipation.  Thank you to all for the suggestions that we have been getting.  We did switch him to Miralax and that has been working much better than the Milk of Magnesia that he had been on.  We had hoped that the reflux would improve when the constipation did, but no such luck.  So this morning, in an effort to try and figure out why he is having all of these problems, his local GI ordered an upper endoscopy where they look down from the top to make sure that there is no damage there, a flexible sigmoidoscopy - where they put the scope up the other end to see what is happening down there, and a number of biopsies to test for nerve function, inflammation and allergies.

The procedures went well with no complications.  They put the mask over Owen's face and he grinned up at me as he went under.  30 minutes later the doctor was coming back in.  The doctor redeemed himself a bit from the last appointment (see my post from
two weeks ago) Maybe he was just having a really bad day the last time we went in.  He took the time to show me the pictures that he had taken with the endoscope.  These are the pictures taken from the upper endoscope:

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Yes, those are bubbles in the picture of the fundus.  And here are the pictures from the flexible sigmoidoscopy (aka lower endoscopy):

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The white stuff is just food.  He said that everything looked good, with no obvious problems, or inflammations.  He took a number of biopsies though, because sometimes the cells will show things that the eye cannot see.  However it doesn't seem that there is anything seriously wrong at this point.  We discussed the possibility of surgery for the reflux, but he wants to see about the possibility of it being an as yet undetected allergy causing it first.  I also discussed our upcoming appointment at Duke with him.  I still feel that it is very important for us to have a GI down there, because we have had GI problems the last two times that Owen was hospitalized there and it has been difficult to deal with them because his only GI was up here.  The local guy was actually pleased that we were doing this and offered to help get the results from today's tests down there as quickly as possible.

So, we wait until the results come back next week before we can really know anything.  Then the week after we go down to Duke.  And now, since we had to be at the hospital - 40 minutes away from home - at 5:45 AM, I am going to head to bed.  Good night!
 
A busy week

The last week and a half was crazy, but productive.  Before we have any more appointments and such, I thought I would get us back up to date here.

Tuesday March 24, 2009
On Tuesday we had the "T" party with the physical therapists (PT), occupational therapist (OT) and one of his speech therapists were all here.  The look on Owen's face when he saw them said, "What, all here at once?  You're lucky I can't run or I'd be outta here!".  It was really good to get them all in the same room though.  Everyone was able to talk about what they were working on and strategies to help each other out by including all of the goals in all of the therapies.  For instance you can do speech therapy just about any time.  We have moved to trying to get Owen to vocalize to get what he wants, instead of just focusing on inputting sounds.  That's something that they can all work on.  Arm strength is both an OT and a PT issue so they thought of ways to work together on that.  It was definitely worth it.  Unfortunately I didn't think to take a picture of all of them together, that would have been nice.  We'll have to do it again someday and make sure that we photograph the occassion.

We also let Owen try out a big boy chair.  He did really well in it - it's just one of those molded plastic ones that you get for outside, in a kiddie size:

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Wednesday March 25, 2009
Wednesday was Owen's gastrograffin enema.  This meant getting up and out to the hospital first thing.  This is a very icky test and the nurses and radiology doctor were just awesome about it and were great with Owen.  Without getting into a lot of gruesome detail, they essentially pump a lot of liquid in the back end (that also acts as a stool softener) and then watch everything come back out. The doc said that he did not think that it looked like Hirschsprung's Disease (thank you Emily for pointing this term out to me so that I knew what he was talking about when we got there).  This was good news.  He said that everything looked normal, but even though he'd had three enemas over the four previous days at home, he was still pretty backed up.  This procedure took care of that.  The doc said that maybe he just has a stretchy intestine that is letting things build up. 

Thursday March 26, 2009
Today Owen went to school in the morning and then went to the OT's office for the first time.  Normally she comes out to the house for his therapy, but we can't get as many sessions through Early Intervention as we wanted, so he is going to be seen in the office once a week.  For this session we focused on feeding.  Owen still can't quite do the spoon feeding by himself.  He has the coordination to get the spoon in his mouth just fine, but he forgets to put the food on the spoon.  I think he believes it just magically shows up on the spoon when it gets to his mouth. He also doesn't chew his food as well as he should. Not only do we occasionally find full pieces of fruit in the diaper, but if a piece of food is too big to fit in his mouth he just spits it out, rather than biting a piece off.

Vesna worked her usual magic.  A few minutes in her chair and she had him biting things like a champ.  She has us feeding him long, thin foods that we can put from the side of his mouth onto his back teeth to chew them.  She also has a rubbery thing shaped like a T that he can practice chewing on that he loves.  A few days later we had him actually chewing on pecans and taking a bite from a cookie.  He even did pretty well with the spoon. 

Friday March 27, 2009
Today it was back down to North Carolina for the second time this week, this time for speech therapy.  I think it was at this point that we realized that we had asked too much of Owen in one week.  As soon as we got there he got really cranky.  He didn't want to settle down at all.  After a while of fighting to try and get him to sit, I laid him down to let him rest for a few minutes and he went to sleep, right there on her floor.  Poor guy.  So there were no stellar achievements during that session, and Mommy got to drive two and a half hours back home in a pounding rainstorm.

Monday March 30, 2009
On Sunday we went to dinner at our friends' house and they let us borrow a chair for Owen to eat in because we had forgotten the tray for our portable one (which is really big and not very portable). He did really well in it and it allowed him to sit at the table with us because it is very small.  It also doesn't have a back support that comes all the way up behind his head, so it makes him sit up rather than letting him rest his head like all of the chairs that we use.  We are really trying to teach him not to throw his head back - always believing that there will be something there to catch it.  He did so well in it, and their daughters have outgrown it, so they let us take it home (thanks guys!).  Owen has now eaten three days worth of meals in it.  He has done really well, the only thing is that it really tires him out sitting up like that.  The first two days he was out cold and taking his nap by 11:00 in the morning, which hasn't happened in ages.  But today, the third day, he never napped at all which means that he's building up his stamina quickly.  Here's a picture of Owen in his new seat:

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On Monday I also started calling to try and get the report from last week's gastrograffin enema, but the hospital said they could only give it to the doctor unless I made an hour and a half round trip to get it in person.  They faxed it to the doctor (who should have had it last week) and then the doctor failed to get back to me that day.

Tuesday March 31, 2009
Another call was made and returned by the nurse for the GI. She said the report said that everything looked normal.  We informed her that we had switched him from Milk of Magnesia to Miralax because the MoM doesn't really work and causes too much cramping.  The Miralax actually seems to be working much better, but only time will tell.  She took down a list of his current meds and said good-bye.

Wednesday April 1, 2009
Nurse from the GI's office called today to say that they have set up another round of tests for Owen since the gastrograffin didn't show any reason why he is having so much trouble.  In two weeks he will go in at 5:45 AM (oh, this is what coffee was made for) to be sedated again (poor Owen!) and then they will put an endoscope down his esophagus to check it for damage from his reflux, put an endoscope up the other end to see what they can see about the pooing, and then they are going to take a number of biopsys to confirm or deny Hirschsprung's Disease once and for all.  Hirschsprung's Disease is where the nerve cells in the intestine or colon are not formed correctly in some places thus making it hard for them to push the poo through, or to feel that they need to push.  The images taken during the gastrograffin enema did not show any of the classic signs - such as areas that don't move well - but a biopsy is the only way to tell for absolute sure.

So that is where we are now.  We have an appointment with the GI down at Duke on April 28th.  Part of me said that we should wait on any more procedures until they can see us down there.  But then again having yet one more doctor three hours away from home is not ideal.  Now that they are finally getting a move on up here I am tempted to just stay here.  So I have decided to opt for a middle ground.  We are going to finish this round of testing here.  Then we will take all of our results down to Duke to see if they have any further suggestions or can offer any different treatment.  It would also be good for us to know one of the GI's down at Duke, because that is where Owen goes when he needs to be hospitalized for shunt problems.  Since GI issues are a close second with his brain for severity, it would be good to have a doctor at Duke who knew him.  The last two times Owen has been admitted at Duke we have had GI problems, but have had difficulty in getting them addressed because his GI was up here.  So we should at least meet them so that they know him.

Have a great night!

 
Happy New Year!

And Merry Christmas and Happy Thanksgiving and I think that about covers it for the holidays since the last post!  I figure that while I only post about once a month or so, it probably takes about a month to read one of my long posts so that makes up for it.

So where to start?  On the Monday before Christmas we went back down to UNC for a new mapping for Owen's cochlear implant.  We were very pleased with the last mapping that we had gotten in November. We started hearing lots of new sounds from Owen and he seemed to be understanding more than with past mappings.  So with great anticipation we headed in for the testing that comes before every mapping. 

I had been driving down the same day as the mapping for the previous ones, but after three hours in the car Owen was always cranky when we got there.  This time we all went and stayed overnight so that he would be fresh and rested for a morning appointment.  It paid off because while he still hated being in the sound booth, he did a lot better than he has in the past. 

On his last audiogram he had tested with tones down to 55 dB and with speech down to 45 dB, which was the same as the audiogram before that.  This time he did better.  He tested down to 45 dB with tones and 30-35 dB with speech! 

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The ellipse type shape is called the speech banana. That's where most of the normal speech sounds fall when speaking in a normal tone of voice.  The dots and stars are the tones.  The reactions to speech are not on this graph, but if you put those on there you'll see that we've filled most of the speech banana. You can see his speech results here:

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We also still believe that he hears better than they can test for.  He can't tell us when he hears something, so we have to watch for his reactions.  Sounds softer than 30 dB may simply be too quiet for him to stop playing for. 

So the audiogram was good news.  They did give us one slightly louder mapping, but Owen didn't seem to like much while we were there, so we'll give him a while before we try it.  The audiologist said that what we need the most now is time for Owen to just hear and learn.  Therefore our next mapping is not for three months. 

At the moment his babbling is definitely becoming more purposeful and with a much wider range of sounds.  He has actually said Mommy and Daddy a few times, clear as day, but it is still not reproducible.  We don't really expect that yet anyway.  While we were in the waiting room for Owen's mapping we met a nice young girl and her Mom and Grandma. The girl was 12 years old and she had received her cochlear implant when she was 2 years old.  Her Mom asked if we had noticed anything different with Owen yet.  We said that while it was clear that he was hearing, he certainly hadn't spouted any words yet.  She said that it was the same with her daughter, that it was a lot of small, incremental improvements for the first year.  At the one year mark though, she said it was like magic and she just started blossoming with her speech.  Her daughter is now a straight-A student with perfectly understandable speech - even though her cochlear implant wasn't on when we met her because it had just been replaced and the new one wasn't turned on yet.

As for progress, Owen now reliably understands "No", "Up" - and will respond by putting up his hands, "give that to me", and "take this".  He also seems to know his own name and knows to pay attention when he hears it.  I'm pretty sure that he also understands "eat" and "milk" but that's harder to tell since he doesn't have to do anything when you say them.  We have also been able to get him to give his stuffed animals a kiss when we say "kiss the bear" or "kiss your owl" on a somewhat regular basis - though mood affects this greatly.

Eating
Owen has now graduated to the big boy high chair.  Until mid-December he had been using his blue chair:

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This chair was the absolute best for getting him in the right position for feeding - long before he could sit at all on his own.  It has one big drawback though.  The straps that go over his shoulders to keep him from falling over also keep him from reaching very far across his tray.  This was limiting his range of motion and therefore his progress with spoon feeding.  He finger feeds just fine, and he has the coordination for spoon feeding, but it's hard to do with your arms held back. 

Now that he can sit up for longer periods of time with minimal support, we thought we'd give a regular high chair a try.  I also thought that this would encourage him to sit up more on his own as well.  It has been a wonderous success:

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Not only has he been able to eat better, but now he has started sitting for longer periods just out in the middle of the bed.  We practice our sitting on the bed so that if he falls over he doesn't hurt himself.  Yesterday we had him sitting on the bed and he got distracted by the TV and sat for a full five minutes, completely unsupported!

Walking
In my last post I promised some video of Owen in his walker so I will make good on that promise with this post.  First however we need some background.  You may recall that for Owen's birthday in September I made him a new walker because he had outgrown his original store-bought one. 

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This walker was absolutely wonderful in that it rolled very easily and so he finally got the idea that he could really get around in this thing.  He went from moving inches at a time to cruising around the room.  The problem?  Well when I designed it I thought that I should go for a wide wheel base to prevent it from tipping over.  Perfectly reasonable.  I made it just wide enough that it would fit through a door with an inch to spare.  The flaw in this thinking became apparent the moment I set it down in the kitchen - it was way too big to be used anywhere in our house but our bedroom! 

It also had another little issue.  The seat was so far back that he couldn't walk up to something and reach it to play with.  So it was back to the drawing board.  It was going to be a while before I could get around to doing a rebuild what with the holidays and such, so we let him go back to using his old commercial walker in the other parts of the house:

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It was good in that he could even go through doors easily, but one day he tried to reach something on the ground and managed to get himself out of it.  If Mommy hadn't been standing right there to catch him he would have landed on his head.  Luckily my brother and sister-in-law helped up with an interim solution in the form of a commercial walker that was taller than our original one:

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This was great because it was small enough that he could use it in other areas of the house, but the tray was so big that he still couldn't reach anything in front of the walker.  The two rear wheels also don't swivel, which made it somewhat difficult to navigate.

So once the Christmas rush was over I headed back out to the workshop to slim down the homemade walker.  Below is the re-worked Sports Coupe model of Owen's walker:

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It is several inches narrower than the old model so that it fits in our tiny kitchen and goes through doors easily.  I also cut down the sides so that they didn't bang into things as much, and I moved the front all the way back to the tray.  It does not appear to have any stability problems, and Owen seems to like it.  He has actually worn out the wheels on it and I'll have to buy more next week.  The other benefit to the walker is that he is working on standing up.  He can now hold a stand for several seconds - even long enough to get a picture:

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And now for the promised video.  There are three little segments of Owen cruising about in his walker - you can also see his sister scooting through one of the scenes - and then a quick video of him sitting up on our bed.  You will see that we have hung toys on some baby gates so that he can play with them in his walker, and put toys out on small tables for him.  Just click on the picture to see the video:

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I have added a new feature to the blog. You can see a new menu item to the right called "Progress - See Owen's Measurements and Milestones Since Before He Was Born".  Almost every new Mom I meet who is still pregnant wants to know the ventricle sizes for Owen during my pregnancy.  I finally thought I would get around to posting them on the website so that I wouldn't have to copy and paste them into emails anymore.  I have also posted a milestone chart with indications of which milestones have and have not been met and when.  Every child is different and I do not like the idea of comparing one to another, but for those just starting their journey with hydrocephalus I thought it might be helpful since I am asked about these milestones all the time.

2008 brought so very much progress for Owen, we can only hope that 2009 will be just as amazing.  It's a very exciting time to see him finally able to explore the world on his terms and learning how to communicate through sound and voice.  We can't help but be optimistic about what this year will bring.

Finally I will close with a picture of Owen and his sister hanging out in their Christmas best:

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A month of costumes, meeting friends, hearing and sitting...

I have to admit that the hardest part about writing a new entry isn't the editing of the video and pictures, it's coming up with a good title.  Honestly, I can agonize for a half an hour over what the title should be before I realize that I'm using up what little time is left of Owen's nap thinking of a title rather than typing anything useful.  But I digress...

Hearing
First we'll start with the hearing. There haven't been any major changes, of course, it is going to be a long process, but we have some news to add.  The first is that we finally have some video of 100% proof that Owen is hearing.  If you click on the picture below you'll see a short video of Owen reacting to his occupational therapist hitting a drum when he wasn't looking at her.  I don't have any video of anyone trying this with him before the implant, but I assure you that we tried it with every loud noise you could think of and he never reacted no matter how loud it was. 

We took him in for a new set of mappings on Monday.  We were finding that the volume on his last mappings seemed to be too high.  He would keep trying to get the coil off all the time at the higher volumes.  So we had lowered the volume down until he could be tested.  The audiologist seemed to agree that he wasn't liking the higher settings, so she spent a lot of time testing individual frequencies and electrodes until she found the ones that were bothering him.  It tended to be the lower frequencies that he didn't like, so she created a new mapping where the lower frequencies were quieter and the middle and upper ones were louder.  His audiogram looked about the same as last time, so we still need him to get a bit more volume in the middle to upper range.

During the testing the audiologist (Holly Teagle, who is amazing) started out by saying "Hi Owen" while he was sitting in the booth and he raised his hand up and waved at her.  This is one of his newest skills. He goes around waving at everyone, but he does it backwards - with his fingers facing him as if he's waving to himself.  The fact that he does it in response to the word "Hi" is encouraging though from a hearing perspective.  She also started to sing "Itsy Bitsy Spider" to him and he tried to make the spider crawling with his hands.  So we are getting there.

One final bit of new evidence came a few weeks ago.  Owen had been fighting his nap every day and then crashing right at dinner time.  This was less than an ideal setup.  So one evening he had been wandering about the kitchen in his walker while I was cooking dinner when I realized that he had gotten very quiet.  Sure enough, his eyes were closed and he was falling asleep sitting up (this child can sleep anywhere).  Without thinking I said "Owen, don't go to sleep now!". He was all the way across the room with his eyes completely shut, but when I said this his eyes shot open and his head jerked up.  We repeated this little exercise for the next 15 minutes before I gave up and let him lie down for a brief nap.  Pretty neat stuff!

Halloween
Next up is Halloween.  Last year I just put Owen in a little zip up suit with ghosts on it:

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He was too little for Trick-or-Treating so he just lounged around with his orange feet.  This year though I couldn't resist getting him an actual costume and taking him Trick-or-Treating with his sister.  We go to the mall every year because we live out in the middle of nowhere and there aren't many houses around us.  So I took a picture of Owen and Sammy in their costumes sitting in the big rocking chair at the mall:

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I bought the spider costume before I started making the hats to keep the coil from his cochlear implant on.  It worked out perfectly though to make him a black hat that would look like a web and keep the coil on while we foraged for candy.

Meeting Elizabeth
I am often amazed at life's little quirks and coincidences - those days when the saying "It's a small world" seems amazingly true.  If you go to the "Share Your Stories" section of this website you'll find a story about Elizabeth Faith (or click
here).  I met Elizabeth's Mommy through the website just two months after Owen was born - which was only two weeks before Elizabeth was born.  We have kept in touch on and off ever since and she has been a lot of help with Owen's reflux.  She sent an email a few weeks ago saying that they were in Christiansburg, VA looking into a possible new job and asked if could I refer her to any neurosurgeons in the area.  As it happens I live about 15 minutes away from there and we just had to say hi while they were in town.  It was great to meet someone I had been emailing for two years.  And, of course, I had to take pictures. Elizabeth is the cutest little girl:

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They were both less than enthusiastic about having their picture taken, but we had a really nice visit and the two kids were just fascinated with each other.

Sitting Up
Owen is making real progress with his sitting up.  His current head circumference is 54.6 cm.  That is off the charts that the CDC makes (the ones that you see in the doctor's office for percentiles of height/weight/head circumference).  The charts go up to three years old only, so I decided to measure the rest of the family's heads for a comparison.  You see the head actually grows to 80% of it's full size during the first year of infancy and then it slows way down and creeps up very slowly until the rest of the body stops growing. Some studies suggest that the head is pretty much finished growing by the age of 10.  As such it would be hard to figure it out based on a chart that stops at three years old.  So to get an idea of what it is that Owen is trying to support on his two year old body, compare his head circumference of 54.6 cm to these:

6 year old sister: 53.5 cm
Mommy: 53.8 cm
Daddy: 63.0 cm

Boys tend to have bigger heads than girls of course. I've always had a small head, I have to wear children's hats, but then again my body is smaller than some of the 12 year olds that I teach, so my head is just in proportion to the rest of me :-).  But it gives you some idea of why it is that he hasn't been able to sit up on his own.  As you can see in the video below (just click on the picture) all that is about to change:

That video was taken on November 17th during a session with his physical therapist Nacol. 

Other than that he continues to be a happy 26 pound, 33.5 inch long baby that loves to play with his toys and is the single most affectionate little boy I have ever met.  He loves to just stroke your bare skin and gaze into your eyes - when he's in a quiet mood and not trying to wriggle away to play.  When he is in his stroller now he sits up holding onto the arm rests, rather than laying back.  He can get his walker to just about anywhere now.  He used to just move it an inch or two in an hour - now he cruises around the room.  For my next entry I'll try to get some video of that. 

Have a Happy Thanksgiving!

 
Our Story - Blog Style

It has been almost a month since my last update, and from the looks of the website you can see why.  I have been busy updating the look of it again to get ready for a reorganization and some new features that will happen in the coming months. I have also decided to bring the "Our Story" section into the 21st century and turn it into a blog style page.  This will make it much easier to update - I won't have to create a new web page for every few updates - and it means that you will just have to add this page to your favorites to see the latest news, rather than having the newest page change every time I add a new entry.  I guess when I started out with this whole thing I didn't realize that I'd still be doing updates two and a half years later!

So, welcome to the new Blog Style Our Story!  It has been a while, there are lots of things to update you on so let's get started.

Cochlear Implant

I'm sure this is at the top of everyone's list, so it's where I'll start.  Things are going great with Owen's cochlear implant.  Over the last few weeks we have really noticed that his babbling has changed.  He has always babbled a lot, but now there are new tones that we have never heard before.  He has also started whispering for long periods of time, which is something that he really didn't do much of - he was always loud.  We have noticed him turning his head towards sounds more and more often. 

He will sometimes even try and imitate the sounds that we are making.  It isn't very reproducible, but it does happen.  Yesterday he was playing with a shoe - he loves his shoes - and quietly whispering "sh" "sh" "sh" over and over again.  So I quietly said "shoe" and he started saying "oo" "oo".  Last weekend he was laying on the bed next to me while I was sitting on the edge sewing his sister's Halloween costume.  I got up to grab something that was on the other side of the room and he said "Ma Ma" as clear as a bell.  Not the "m" "m" "m" that he used to do, but two distinct syllables with the correct duration and inflection.  He hasn't done it since of course, but it was nice to hear the once anyway.

Today we took Owen down for a new set of mappings and to get his first audiogram since the implant was turned on.  An audiogram is basically a graph that shows which frequencies and sound levels that a person can hear.  The sound (hearing) level is measured in decibels (dB) and the quieter sounds are at the top of the chart and they get louder at the bottom of the chart.  The frequencies (tones) start low at the left of the chart and get higher towards the right.

Below is a picture that shows where common sounds fall on an audiogram:

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Owen's last audiogram before getting his cochlear implant was pretty much a flat line at the bottom of the graph.  As his surgeon described it, they were playing sounds that were as loud as a jet airplane taking off next to him and he wasn't even flinching. That audiogram looked like this:

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The circles being at the bottom of the graph with downward arrows show that he didn't respond even at the loudest noises.  Today's audiogram, taken just one month and five days from when the implant was turned on, was much better. You can see marks now right in the middle of the graph, rather than sitting at the bottom!

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And there is more. The full audiogram page has more than just the graph. 

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You can see that there is a circle around the letters SAT, which stands for Speech Awareness Threshold, and then a 45 written in that row.  This means that he was reliably responding to speech at a mere 45 decibels! 45 decibels is within the norm for conversational speech. The dots on graph are from tones that are played in the sound booth. They would get him to concentrate on a toy and then play a tone to see if he would look up.  He was responding to those reliably aound 55-65 decibels.  Then they just started talking into the microphone and he was responding at 45 decibels.  The problem with testing him is that he doesn't know to listen for the sounds and to raise his hand or tell them "I heard that" yet.  We are working on that in speech therapy, but for now they have to rely on looking at him to see if they think he is responding. So it is possible that he is hearing even more, but it is too much a part of the background at the lower levels for him to notice it.

The audiologists were very pleased with this level of response.  They said that it often takes three months to get to this level of hearing and here we are at just over one month.  Needless to say, we are very happy tonight!

Visits

Owen had a CT scan done locally about a month and a half ago which we sent down to Duke for his neurosurgeon, Dr. Grant, to look at and it showed that everything was fine.  We waited to schedule the office visit for a while though, so that he could see Owen after his cochlear implant had been turned on.  Dr. Grant may not have done the cochlear implant surgery, but he was still very instrumental in making it happen.  He was willing to do the necessary shunt surgery to make it possible for Owen to have both a cochlear implant and a shunt.  This is something he didn't have to do, he could have just told us that since Owen had a working shunt his job was done.  Instead he worked with the cochlear implant surgeon (Dr. Buchman at UNC Chapel Hill) to come up with a plan and went the extra mile to see that Owen had this chance.  We can't thank him enough for this. 

I realized that we had never gotten a picture of Owen with Dr. Grant.  How this happened I will never know, but it was definitely time to fix that problem.  So here is Owen with Dr. Grant:

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I never did get a picture of Owen with his cochlear implant surgeon. I'm sure we'll see him sometime in the next year and I'll try to fix that then.  After we left Dr. Grant's office we headed over to see Dr. Kurtzberg - the doctor that did Owen's cord blood infusions.  She was also helpful in the cochlear implant effort in many ways.  As always it was great to see her again:

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Physical Therapy

Next up is his progress in physical therapy.  He has been making progress by leaps and bounds.  Owen has started pushing his head up off the floor to look at things on a regular basis now. He has been able to do this in therapy sessions for some time, but it was so much work that he rarely ever tried it otherwise.  Now he does it all the time.  Unfortunately he never seems to do it when I have the camera, so this is the best picture that I have gotten yet of this skill:

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He has learned to sort of army crawl a bit with his head up now when he can't roll to where he wants to get to.  It won't be long now before he's really crawling about. 

Some progress has been made in the sitting area.  He can now sit up for over an hour at a time in his Bumbo seat.  He can sit for a few seconds at a time without any support.  I suspect that he is capable of sitting up without help for longer periods of time, but he is just used to having something there to support him so we are working on that.  Below is the best picture that we have so far of him sitting up on his own:

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He has also made progress with standing up.  Here you can see him standing with the help of his therapist Nacol:

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This effort has been helped by two new toys.  The first is that we got him a bigger bouncer that hangs in the doorway.  We used to have a smaller one, but he outgrew it.  Between the fact that he wasn't in the bouncer anymore and being out of therapy for surgeries all summer, he had stopped pushing up to stand.  So now he's back in therapy and we got him this new bouncer:

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You can also see the hat that he wears most of the time now. The external pieces for the cochlear implant fall off all the time when he rolls on the floor or knocks it on one of the supports in the bouncer or his feeding chair. He was probably spending a few hours a day with the coil off because of this, so I crocheted him a hat to keep it on.  The hat also makes it possible for him to wear his implant in the car because even if he somehow manages to get the coil off, he can't get to it to eat it. 

The second new toy was Mommy's birthday present to Owen (we'll get to the birthday party later in this post). You may recall that I had previously modified a store bought walker for Owen so that it looked like this:

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Well, as you can see in that picture he was already almost too tall for that, and that picture was taken almost exactly a year ago.  This walker also has another problem.  He sits in it, he doesn't stand.  This is not the best for teaching them to actually walk. So I made a new one that uses the seat from his old bouncer, which is made so that he stands up in it.  The poles are much higher on the new one, so that if he needs the head support it will be tall enough for him.  I haven't added the head support yet, because he seems to be able to stand upright without needing them.  The final feature is that I spent more that the 50 cents that the toy company spent on their wheels, so the new model rolls much more easily. And here it is, my latest creation:

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Birthday Party

Woo hoo! Owen turned 2 years old on September 25th.  Last year on his birthday I wrote that if only we had known while I was pregnant how well he would be doing at a year old I wouldn't have worried so much.  I would say the same this year, only doubly so.  He has made so much progress in this year that it's hard to remember the frail little baby we brought home. He's now a strapping 25 and a half pounds and so full of life that you can't get him to sit still for even long enough to put a diaper on!

For his birthday he enjoyed the requisite cake.  He also spent some time playing his favorite game of peek-a-boo with the cloth that was supposed to be keeping his food from falling on the floor!

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And that is what we have been up to for the last month.  It has been a crazy one, but oh so rewarding!

 

 
 
 



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