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!

 
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:

 
New Wheels at Last!
OK, we'll get to the wheels in just a second. First though I suppose I should update on the recovery from his Chiari decompression.  The incision had been healing nicely but in the middle of the night about a week or so after the surgery Owen thought that it would be fun to tear off his bandages and scratch at his incision causing it to open back up in one area.  Not a good choice.  Despite our best efforts to keep it cleaned out it got infected so we tried giving him Keflex to fight the infection but it just didn't go away.  So last Friday we headed back down to Duke where they cleaned it out and stitched it all back up.  They also changed his antibiotic to Clindamycin.  The incision is now looking much better and I think we're nearly there now.  We have to go back on the 24th to get the stitches taken out.

Otherwise he is doing very well.  The Clindamycin has made his tummy feel icky despite large quantities of probiotics, but we only have a few days to go.  The choking on liquids has now completely disappeared unless he's just gulping his drink too fast.  He was really in a great mood until his tummy started feeling sick.  He thought very hard about having a seizure yesterday, but thankfully Jigsaw was on the job and helped us to head it off.  He is just now getting his strength back so it's still going to be a good while before we can tell about the walking.  He is getting more and more daring about what he is willing to try though, so we're hoping that is a good sign. 

So, onto the wheels!

As you may recall we started the process of getting a new wheelchair back in January.  We wanted something lighter that he could move on his own if he so desired.  Well today it finally came.  It's a Ki Tsunami Little Wave.  I should have thought to take a picture of it next to something with some scale because it is seriously elfin in size.  Here he is today giving it a whirl:

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And he even played with the wheel a bit. I don't think he has any idea how to actually make it move yet - but at least he's curious about it rather than screaming about it. And when Daddy did wheelies with him in it he squealed with laughter!

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Here are some views without him in it:

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This thing is ridiculously light, I just can't believe how easy it is to push along.  I'm going to love it I just know it. 

We had originally thought that we might donate his old Bingo stroller but I don't think that's an option.  As much as I'm hoping his new one will save my back and provide opportunities for independent mobility, the old one still has too many uses.  For instance, here is Owen last week after getting his new stitches:

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The Little Wave doesn't recline and it doesn't have a full back so pushing him around after sedation won't work.  We also found that while the Little Wave goes like gangbusters on flooring or concrete, it's not so great on our gravel driveway where we go walking every day in warm weather.  So we will keep the Bingo for those times when the Little Wave won't be able to do the trick. 

It's going to take a bit to figure out the logistics of how to haul what we need on a smaller chair too.  You can put enough stuff to survive for a week on the cargo bag I made to fit under the Bingo. There isn't anywhere near as much room on the Little Wave but I think I can make it work.  His oxygen tank fits nicely behind the seat:

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I will probably make a small bag to tuck that all into so we don't have tubing and a mask falling everywhere, but it is convenient how it fits in there. I have a temporary bag that I have hung on the back for now, but I'll need a smaller one so I'll make that in the next few days.  You can buy them of course, but insurance won't cover a bag (it's a convenience item apparently, rather than a necessity to carry diapers, meds, food and toys) and they are really expensive to buy.  So tomorrow I'll get some cool fabric and make something that fits and looks appealing to a five year old. 

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

How could you not fall in love with that face?

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

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

From helping Owen to sleep off his seizures:

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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.
 
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!
 
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!
 
Swings and Things

Things are chugging along here.  The school year is winding down, the days are warmer and we've spent a good bit of time in the pool in the last few weeks.

I took this cute picture on May 11th:

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of Owen eating snack with his classmate at school. You can see that he has graduated to the big boy chair and can now eat from a plate.  In the past Owen has considered a plate to simply be a tool that allowed him to dump more food onto the floor in one motion than his hands alone could accomplish. We are getting closer to civilization - now if only we could get him to figure out what a spoon is for.

May 22nd was the open house at our local rescue squad. We decided to bring Owen down so that the EMT's could see him when he was actually concious and breathing all by his little self.  They were giving tours of the ambulances, but we felt that perhaps we had seen enough of the inside of this one already and just took a picture of it:

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The best part was Owen snuggling with Angel and Melissa, the two EMT's that have responded most often to Owen's little incidents:

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These guys do all of their work on a volunteer basis and we can't thank them enough for all their hard work!

Let's see, what else has been happening?  Well, we have been having some success with our quest to find effective seizure meds.  He has been having a seizure every two weeks almost like clockwork for a while now.  Each time we up the meds, and each time the seizures get less severe.  Last Sunday he had one that we almost didn't notice.  I went upstairs in the morning and he coughed a bit and threw up just a little - which considering he had a cold wasn't all that surprising.  He seemed fine but when he tried to drink he had a real hard time getting it to his mouth and he had trouble standing up - he was just uncoordinated for an hour or so and then he was fine.  No convulsions, no breathing problems, no long nap - much better than the previous ones had been. 

Our biggest issue with the meds right now is that while they seem to be making the seizures less severe - which is great - they are also keeping him awake for hours at night and then he's tired and cranky and aggressive the next morning.  We had an appointment with the neurologist today and he thought that since the meds were working on the seizures that we should try to keep them.  Since we do need to get him sleeping at night however, he did suggest that we try giving him a dose of Melatonin before bed.  Melatonin works with your body to tell it that it is time to go to sleep in a natural way.  He prefers this to sleeping pills that can interact with the other meds and cause other issues.  We tried it tonight and he was asleep by 8:15, which is much better than the 10:00 or later that he had been doing since we upped his Zonegran a few weeks ago.  Now we just have to see if he sleeps through the night.

The Swing
Back in March I posted this picture on our family blog:

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This is Owen in his Fisher Price Aquarium Take-Along Swing.  It was his favorite thing in the whole wide world to do.  He would crawl across the whole house to get to it.  I highly recommend this swing for infants, it folds up to a tiny package, when you pull the fishies on the sides it plays music and lights us, there are floating fishies in the side panels, it cradles them in a way that supports big heads and there is even a fishy on the strap to play with:

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I would not, however, recommend this for your three and a half year old.  Sadly, the plastic arms cracked a few weeks ago.  While I give Fisher Price credit for it holding up for so long, and for it failing in a way that Owen didn't even really notice let alone get hurt by, it was clear that it was time to replace the beloved swing.  So, I headed out to the workshop to make him a bigger swing that could support a growing boy.  And here it is:

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This is a still shot of Owen clapping when I put him in it!  My apologies for the mess visible around the swing, I was so excited to try him out in it that I didn't clean up the construction mess first. 

I kept the old seat cushion complete with fishy on the seat belt:

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And here he is checking out the floating fishies that I embedded in the supports:

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A side view:

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And his sister enjoying swinging him with some of the rope that was leftover from stringing on the canvas:

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I still have to mount the light/sound bar to finalize the effect, but when I tried to take him out of the swing he held on to it and didn't want to leave so I think that it will be a hit. There is plenty of room for him to get taller so he should get a few years of use out of it.

I will leave you with a few pictures of Owen and his sister in their pajamas the other night:

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The Go Bag
Today it was time to do one of those chores that comes up with the beginning of each new season.  Clean the windows?  Nope.  Swap out the clothes in storage?  Getting warmer!  No, it's the restocking of the "Go Bag".  You see we learned early on that hospitals stays can come at any time, and they are usually unplanned.  And when Owen is in the midst of a seizure or shunt infection the last thing I want to be worrying about is "What am I going to need at the hospital if he has to be admitted?"  Or even better yet, "What if he gets airlifted to a hospital three hours away from home again?".  So, we have the "Go Bag" ready at all times so that if there is a problem we don't have to stop and think about these things.

The first item is actually carried in my purse, Daddy's wallet, his Aide's purse and is also tacked on the fridge for good measure.  This is a little piece of paper that contains the highlights of Owen's entire medical history.  There are a hundred questions that will be asked by the ambulance personnel, the ER people, the residents, the doctors and the many other people that will come through the door.  They ask a hundred times partly to be able to train the residents and such, but also to make sure that there aren't discrepancies because you are stressed out.  This is important, but it will also drive you up a tree.  It can also be difficult to remember exact dates and such when you are under stress.  So, instead of answering all these questions, I have a piece of paper to hand them that they can Xerox to their heart's content.  And believe me, the docs, residents, ER people and ambulance people LOVE this piece of paper:

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This just takes all the guesswork out of the whole process.  The really important stuff is highlighted in blue to catch the eye, and I keep the weight up to date so that they can give him seizure meds without fussing about with a scale.  I also always carry a copy of the latest CT scan in my purse.  This can save all kinds of time if the hospital that he is taken to is not the hospital he usually gets his scans at - which is almost always true for us.  We take him to the local hospital to stabilize him in an emergency, but he goes to Duke (3 hours away) for his normal care.

Next, onto the bag itself.  Inside this bag:

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are a change of clothes for Mommy, Daddy, and Owen:

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I have thought in the past, "I can just get by with what I'm wearing for a few days if I really have to" - but that doesn't work if your child throws up all over your clothes (or his, or Daddy's) on the way to the hospital and it's kinda icky anyway. 

Then we have basic necessities for Owen. 

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I am eternally amazed at how long it can take for people to find diapers in a hospital and I find it's best to bring a few so that the hospital staff have a few hours to make some appear.  There are extra batteries for Owen's cochlear implant, a nose bulb because he can't blow his nose and hates it when he's stuffy, some of that cool tape that sticks to itself to keep pulse-ox's on, and some lotion because the low humidity in hospitals really dries his skin out - and it takes a doctor's order to get lotion in the hospital. 

We also bring along some essential foods:

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He doesn't usually eat baby food - but if he has had to be intubated we keep some on hand because it's easy on the throat.  They are just a few flavors of apple cinnamon stuff that has more calories than regular applesauce.  Owen is also allergic to milk and eggs and we can sometimes have trouble getting his soy milk (Silk) at the hospital, or even just food that we can be sure doesn't have milk or eggs in it.  We bring enough to get him through a day or two until we can get the food supply sorted out.

We also bring a bit of nourishment for Mommy and Daddy:

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because it's often 1:00am when things settle down and the cafeteria is closed.  There is almost always a microwave on the floor somewhere that you can use to heat up a couple of meals and the high protein bars are good for snacking on until you can get real food. 

We also bring some of the basics to clean up with:

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because it can really help your outlook on life to be able to brush your teeth and if the above clothing was *compromised* on the way to the hospital by revisiting Owen's lunch, you will really want a shower if things got messy.  Again, it could be the middle of the night by the time things calm down enough to be able to attend to such things and the gift shop will be closed - and you just don't want to pay the $5.00 they want for a toothbrush anyway. There are also a few feminine products because you can't guarantee that emergencies will occur during convenient times of the month.

Finally I have some entertainment for Owen when he wakes up:

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and some for Mommy and Daddy for while he sleeps:

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I have to re-pack every season to make sure the clothes are appropriate (and still fit Owen) and to be sure that the Silk hasn't expired.  The idea is that we want to be able to get through the first few days without needing to leave the hospital if we don't want to and we want to be able to grab it all at a moment's notice.  And with the laundry detergent we have made this bag last us for quite a while in the past once you can start getting food at the hospital.  There are a few more items in there that I haven't shown - spoons and forks for eating and I think there is a deck of cards in there too, but you get the idea.

OK, so that part isn't much fun but I did think it was worth sharing as we've found it really reduces unnecessary stress.  But, I'd rather end on a happy note, so I'll include some great pictures that I took of Owen and Sammy in their Easter finest.  Check out the little guy and his expert standing at the tree:

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I hope everyone had a Happy Easter!
 
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 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!
 
A Big Boy Bed!!!
Say Good-bye to the Crib!

This was a big occassion for us, for a lot of reasons.  It's always a bit bittersweet when your baby moves up from a crib - you realize that they aren't a little baby anymore and are a bit sad, but you rejoice in the fact that they are growing up as well.  But there is more to it than that for us.  Before Owen's diagnosis I had had visions of his little sister helping us to set up his crib and getting everything ready for her little brother to move in.  After they told us that he might not live though, we kinda lost the desire to put together a nursery.  It seemed like tempting fate.  In fact we didn't put the crib together until after Owen was born.  Owen was in the hospital for a month after he was born, so Daddy actually came home and put it together after we knew everything was going to be all right.  Putting up the crib was a final acknowledgement that Owen really was going to come home to us.

Now we have taken down the crib and he has moved into his big boy bed - and that is once again a time to take a moment to be thankful that it has all turned out allright.  Our beautiful boy has not only come home, but he has thrived and grown big enough to need a real bed!


So, we said good-bye to the crib that both he and his sister used that had become way too small for him:

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And hello to some brand new digs:

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It's a homemade bed. We were afraid that if we put him in a bed that was off the ground that when he finally learns to pull himself to a standing position he would fall over the edge and hurt himself.  So instead we took a standard twin size mattress and made a 16 inch high box around it.  This way he can't casually roll out of it in his sleep, but if he manages to crawl over the side he isn't high enough up to hurt himself.

We all had fun making this one for him. Mommy and Daddy built it last weekend, and Sammy and Mommy did the painting and decoration:

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Sammy's art:

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And Mommy's contribution:

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I do think Owen thoroughly enjoys having all of this space to stretch out.  In his crib he kept getting his legs caught in the slats when he would try to turn sideways.  Now he has room to spread out and no slats to hurt his legs.

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Oh, and we have one more final accomplishment for the day.  Today was our first day in the pool for the year. Owen loves the water.  Last year we had tried putting him in this baby swim ring and he couldn't hold himself up.  This year we tried it and he did awesomely!   He wobbled a bit at first, but after just a few short minutes he had learned how to keep himself upright and was even experimenting with kicking his feet around to move himself!

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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!

 
Catching Up
It has been a while since my last update - we have been very busy lately.  Therefore we have a few things to catch up on.

Firstly, we got back the results from the biopsies that were done during all of the GI tests that I posted about a few weeks ago. All of the biopsies were normal.  There are no inflammations due to damage, no Hirschsprung's, all of the nerve cells are where they belong and there was no inflammation due to allergies.  So why does he have such bad constipation and reflux?  No clue.

So we took him down to Duke to let them have a go at figuring it out.  We didn't really find out anything new there.  That doctor bascially said that as long as the biopsies are clean, then it doesn't really matter what the cause for the constipation is - the treatment will be the same.  We could go through lots of painful and expensive testing to see if it is because of slow motility or muscles that don't quite fire in the right order or who knows what, but in the end all of those things just require you to give them a lot of laxatives.  So I guess that's what we'll do. 

He also felt that it was probably extreme to consider a Nissen surgery (where they wrap part of the stomach around the esophagus so that nothing can come back up) for the reflux since no damage is being done by the reflux. I am not certain that I buy the idea that it's not a problem to be reliving your meals over and over again all the time, but since we've now had two different doctors tell us that we should not do the surgery yet, I guess we'll take their advice for a while anyway.

I am frustrated that they couldn't come up with something more definitive, but the only thing left to do now would be to drive Owen out to the Cleveland Clinic which is the World's Best GI Clinic.  That would be a very long drive and we would have to really think about whether or not there would be enough benefit to warrant putting Owen through all those tests again.  We're going to give it some time to see how the new regimen that we have recently started with the Miralax works for the constipation.  If we can keep it under control then we will probably leave it at that.  If it continues to be a huge problem then we'll be hanging out in Ohio for a bit (Kristen would be happy about that anyway, that's Cayman's Mommy and she lives in Ohio).

In other better news Owen continues to make lots of progress in his therapy.  Since we have started doing feeding therapy every week we have seen a big difference there.  When we started he couldn't deal with a piece of food that was too big to fit in his mouth - instead of biting a piece off he would just try to cram it all in and then spit out the whole thing.  Now he will bite off a piece and chew it.  We also know that some of his constipation was due to the fact that he wasn't chewing his food well enough.  He is now happily crunching away on his food and we are just working on stamina. 

The "O Ladder" as my Dad calls the creation in my last post is really working well with Owen.  I don't have any pictures because my camera has died and I'm saving up for a new one.  I have an old one that I use to catch a few pictures here and there, but the battery only lasts for about 15 minutes so I have to really plan ahead to use it.  Anyway, the ladder has really given him a way to work up to a standing position and to easily steady himself. 

The other day I brought in a scooter that used to belong to Owen's sister.  It has been in storage for a few years and on a whim I brought it in.  It looks like this:

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I tried to sit Owen on the seat and he didn't seem to want to sit down.  At first I thought it was a balance thing, but then I realized that he was trying to stand up.  He had put his hands on the hand grips and stood right up.  He then proceeded to walk halfway across the room while holding onto the handlebars!!  I was steadying him so that he didn't fall off to the side, but he just took right off!  I certainly didn't expect that!  So next I'm going to rig up one of Sammy's old walk-behind toys for him to hold on to and see what he does.

Owen has also started doing a lot more at school.  He only goes one morning a week, but many times he would just kind of sit and watch the other kids and get cranky if you tried to get him to work with any of the jobs in the classroom (it's a Montessori classroom).  The last few weeks have been much more productive however.  This week he was all over the classroom (I bring his walker) and he worked hard on the wood cylinders that you pull out of a block, on pulling pieces out of a puzzle, at talking to the fish in the fishtank, and he particularly liked the big sponge with all of the soap suds that they can squeeze.  He even made an attempt to play with another child for the first time and while a little girl was scrubbing a shelf he came over and rubbed his hands in the soap bubbles she was making. 

Finally today we went down for speech therapy in Greensboro.  This was probably our best session yet.  Owen has really started to vocalize a lot more.  The only thing that really sounds like a word is still Mom, but he gave a try at quite a few today.  When Emily (the speech therapist) brought out the duck and said "Quack Quack", Owen said "a" "a".  I've been working on saying "Uh oh!" whenever he drops something. He dropped a toy during today's session and he said "uh uh".  He also said "ah" several times with the airplane - each toy has a song that emphasizes a sound and the airplane's sound is "ah".  Owen clearly had a lot of fun at therapy today and participated much more than he has in the past.  He has also graduated to sitting up in the big boy booster seat at the table for speech therapy, rather than sitting with Mommy on the floor.  I think it has helped to have him more at eye level and for him to know that he can't just lay down and stop working. 

So it has been an exciting few weeks.  And now it's time for this Mommy to head to bed.  Good night!
 
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.

 
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!

 
Life Just Got A Little Easier

Every now and then we make a breakthrough that is not only a milestone for Owen, but a big leap forward in how easy it is to take care of him.  Today was one of those days. 

Up until now Owen has not been able to sit up in a grocery cart.  A simple thing, but it means that I have to push a stroller and a shopping cart at the same time.  This is just as much of a hassle as it sounds.  His sister Sammy would help when she came with me and would push the stroller, but many times I had to do it alone.  As Owen got heavier, the stroller was getting harder and harder to maneuver. 

Owen's recent progress in sitting up made me think that today was the day to try and see if he could sit up in a grocery cart while we did our shopping.  He did wonderfully!! He sat in the cart for an hour and 45 minutes in Walmart!  He was pretty tired by the time we were done, but I was so proud of him.  Below is a picture I took with my phone because I just had to document the occassion:

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You can't see it, but he does have a bit of help. I have the "Take-Anywhere Strap" from Beyond Play around his middle.  The strap looks like this:

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Once he had been sitting for a half an hour and I realized that this was really going to work, I splurged for one of those cart seat covers with all the toys.  The one I chose had lots of toys, and a pillow that went behind him so that he wouldn't hit his head on the cart when he leaned back for a rest. Below is a picture of Owen hanging out with his new setup - I went ahead and installed it while we were still in the store.  He loved the toys! 

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Shopping was such a joy.  Not just because I didn't have to manage the stroller along with the cart, but now Owen is sitting right up near me and is facing me so that I can talk to him while we're shopping.  In the stroller he is way down and facing away from me and that seems a bit lonely. 

Happy Saturday!!

 
Happy Kiddo Again

I have to admit that today's entry is more to test a couple of new features than anything else, but it is a good excuse to put up a couple of pictures and give a quick update on Owen.  The features that I have added are ones that you can't really see. The first was to put in a way to update the blog from my phone.  While we were in the hospital a few weeks ago, I realized that I couldn't update the blog because I didn't have my laptop with me. I rely on the blog to tell the family (and friends) when things are happening during surgery, etc. My brother was kind enough to add updates for me (thanks!) but it would be nice to be able to add quick things from my phone. 

The second feature that was obviously missing during our hospital stay was that of having the blog automatically send out an email to subscribers when I added a post.  My brother could add updates, but I had to call everyone to tell them to look for them because he didn't have the email list.  So if all goes well, an email will automatically be sent out to all of the subscribers when I hit the "Add Post" button. 

So, enough about the technical stuff - the real question everyone wants the answer to is: How is Owen doing?  The answer is that he is doing fabulously!  The new shunt is definitely agreeing with him.  We also called the GI doc to get some advice on cleaning out the intestinal tract because he keeps getting so backed up.  Well, 3 days of enemas and magnesium citrate - followed by several days of 3 tbl of Milk of Magnesia - followed by even more days of 2 tbl of Milk of Magnesia have really improved Owen's outlook on life!  It has also caused Pampers' stock to go up by $1.

So Owen has been nothing but smiles and laughs for the last two weeks.  It has been great, especially after several weeks of him being miserable.  He has now figured out that the walker doesn't only work in the room that he starts out in.  He's a Man About Town lately and gates have been put up at the stairwells.  He cruises from room to room with ease now.  He is also "talking" up a storm lately.  Lots of new sounds and non-stop babbling.  I have some video that I will try to put together in the next few days. 

And, of course, there must be pictures.  Below is Owen in the T-Shirt that I bought him for Earth Day last year.  I just love it!

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That one was taken a few days ago.  Today I caught a few of Owen hanging out in the walker out in the kitchen.  We don't have the blanket attached to the poles for head support anymore, but we have found the poles useful to hang toys on.  The eyes looking down on him are on the hat that went to the spider Halloween costume.  The hat is too small for his big head, but he likes to look at anything with a face and he "talks" to it all the time.  You will also notice that I have added rubber bumpers to the sides of the walker.  The hard oak and the bolts were doing damage to the furniture.  I have also had to replace the wheels.  Owen spends almost all day in the walker now, and he wore out the first set!  I put some more heavy duty models on this time, hoping that they will last a bit longer.

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I love my Slinky!

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My Happy Boy is Back!

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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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