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

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


And how could you not love that smile?


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

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


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


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



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



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


Gosh, he looks like Gulliver in those pictures! 

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


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

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


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


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

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



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

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

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

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

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

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

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

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


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

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

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

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

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

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

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


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

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

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

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

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

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

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

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


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


Fun with OT And a New Word!
Owen has really come to love OT in recent weeks.  I think it's mostly due to the introduction of the platform swing. He loves this thing. 


He is working on propping himself on his arms and the swing makes him do it at all different angles.  It's quite a workout, but he just thinks it's fun.  Here is a little video of him on the swing.  It's a bit overexposed, and he looks very serious because he can hear someone crying in the next room, but you can really see how much he has improved in his body control in this position:


He also really enjoyed sitting on Rody:



He is making such awesome progress lately, and here is another example.  Today we have started to say a new word.  He has Mama down pat now and uses it all the time.  I noticed the other day that he was saying something similar at mealtimes, but that he didn't seem to mean Mama. And then I noticed that he was signing "more" at the same time and I finally realized that he was trying to say "more".  He doesn't have it quite perfect yet, but it's only one syllable instead of the two repeated for Mama, and it sounds different - it's more like a "mo" than a "ma".  The biggest thing though, is that in this video we are getting him to say it on demand.  This is a huge step to teaching him because normally he won't vocalize when we ask.  Of course he's doing it more to get the cookie than to please us, but I'll take what I can get :-)

Therapy of All Kinds

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

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

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


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


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



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


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


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


And we have another little video of Owen standing up:


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


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


This is Owen standing at the railing looking out at Niagara Falls.  Owen did amazingly well on his 10 day trip from VA to Niagara Falls, Canada, to the Adirondacks in NY, to Mystic Seaport in CT and back home again.  He handled the traveling with no problem and we had a great time visiting family, friends and interesting places. 
Owen, Inside and Out
Before we get to the GI appointment from this morning, I thought I would share a few pictures from last week's joint therapy session with Owen's PT Nacol and his OT Vesna.  They are working together to come up strategies for increasing Owen's arm strength.  They really worked well together.  In fact it went so well that they are planning on doing a joint session every month.  I think it was definitely worthwhile:






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

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

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


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


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

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

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

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

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



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:


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!

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

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

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

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

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

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

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


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


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

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


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

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

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

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

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

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

Have a Happy Thanksgiving!


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