The Amazing Owen
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Finally!!
So yes, by finally I do mean that I'm finally getting around to posting here after a year, but I mean oh so much more than that.  2013 was a wondrous year full of the word finally.

We finally made it a full calendar year without a surgery or hospitalization.

We finally made it a full calender year without a seizure.  

We finally felt comfortable enough to let Owen fly on a plane again:

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so that we could take a REAL family vacation that was actually a few miles away from a hospital:

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Owen had an absolute ball on this trip.  One thing he loved, was when Grandpa would run down the walkways with him:

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And as you can see in the video below (one large size, one small size), he was just giggly happy most of the time. Owen loves to travel and it's great that he can finally do it again:
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We spent some time in the sun:

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And we finally had non-emergent checkups at Duke that were laid back enough for us to finally get to visit Duke Chapel, which we have been wanting to since Owen was born:

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Owen finally overcame his fear of grass - enough to even sit in the grass and leaves and enjoy a snack!

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Owen was finally healthy enough to return to school:

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which he absolutely LOVES!  It has been so good for him.  He uses his walker every day and goes farther and farther.  His class loves him and he has awesome teachers.  

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We celebrated his 7th birthday this year!  That doesn't seem possible, but believe it or not Owen is now 7 years old.  We celebrated with some yummy and vibrant Red Velvet cake:

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And here's Owen looking all grown up and sitting in the grass with his best friend for a fall picture:

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He dressed up as a ninja for Halloween and even got to participate in the festivities at gymnastics.  

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And finally Owen just celebrated his 7th Christmas.  

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2013 was an incredible year for Owen and we could not be more thankful for all the progress he has made this year!
 
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!

 
Merry Christmas

I thought that this Christmas deserved a special season's greetings message from us.  If you follow the archive links to the right, you will see that last year at this time Owen was Seizing Thru the Season.  It was one step forward and four steps back.  I believe I described it as "The Long Dark Tea Time of the Soul" (quote stolen from author Douglas Adams)  Not fun.

This year was shaping up to be the same way - from September until mid December he was unable to stay awake more than a few hours a day.  We couldn't figure out why.  We had pneumonia, poo issues and vague symptoms.  EEG after EEG, CT scans, x-rays, the works. 

But then things turned around.  We got the poo cleaned out and that solved the pain issues.  And then we got the big answer.  He wasn't sleeping due to shunt problems or seizures, it was mono.  The simple, obvious, and we never thought about it because 5 year olds don't usually get mono, but this 5 year old spends a lot of time in germ infested hospitals and doctor's offices.  But eventually I started showing the same symptoms that Owen was.  I was exhausted for no reason.  I went to the doctor and the blood test confirmed it - I had mono.  We had the same test done on Owen, but it is inconclusive in young children because they don't produce the same antibodies.  But with me testing positive and him starting to perk up in just the right timeline for mono to be overwith, it's a pretty certain thing. 

And so now Owen is slowly coming back to normal.  He is staying awake all day and he is moving around more and more.  It is taking time for his strength to build back up, but he is getting there quickly.

But wait, there's more!!!  It has been 2 months and 22 days since his last seizure.  This is an unprecedented break for us.  Between the VNS, the new meds and Jigsaw's help, Owen has finally managed to get enough of a breathing space to be able to thrive again.  This alone would be an unbelievable Christmas present!

These pictures are from Owen today:

Owen taking a cookie out of a bag all by himself.  It may seem simple to you, but this is a complicated task requiring him to hold on to the bag with one hand and to reach in with the other to grab something he can't see.  It was a task that he finally learned how to do a few months ago, but then stopped doing again while he was ill.  At 5 years old he has finally truly mastered this basic task.  He spent his morning happily pulling animal cracker cookies out of a bag.  Hey, it's Christmas, he can have cookies if he wants to!

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And Owen just loves to push buttons.  He can't play the games or follow the instructions that the toy is giving him, but he knows that if he pushes buttons things make sounds or flash lights and he likes that:

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His friend Mya sent him some jingle bells that he had a wonderful time with:

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Recently Ms. Pat, Owen's special ed teacher, started trying him out with an iPad.   I have downloaded the same apps onto my iPhone to help him start to learn the basics.  The best one is a virtual xylophone where you just have to touch the screen and it will play tones.  Owen isn't up to touching specific spots to make specific things happen yet, we are just trying to teach him to touch the screen to cause something to occur.  He is learning and he likes the xylophone sounds.  Grandma and Grandpa recently got an iPad and here he is with Grandpa trying out the xylophone (Music Sparkles is the app name):

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So this Christmas we are counting our Blessings.  Having two healthy kids who are home for the holidays and doing well makes this an awesome Christmas!

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Merry Christmas to all, and to all a Good Night!

 
Meetings and Teletubbies
Yesterday we headed down to Duke to begin a 5 day ambulatory EEG.  Before we spent a few hours hooking up wires we were lucky enough to be able to meet up with the Gareau family.  The beautiful Meagan was at Duke for an infusion today and we were able to say Hi before our appointment.  Below is Meagan and her Mommy Molly with me and Owen:

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And I got in some quality snuggles with Meagan (picture stolen shamelessly from Molly's Facebook post:

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I always feel so blessed when a family allows me to share in the miracle of their little one's very special being!

After our appointment we headed over to the Neurodiagnostics Clinic to get Owen hooked up for his 5 day ambulatory EEG.  The ambulatory bit means that we can take him home and don't have to stay in the hospital.  Of course we won't be spending much time at home in those five days because you have to go back every 48 hours to have the data downloaded from the card - and it's a 7 hour round trip for us so three of the 5 days will be spent on the road.  We thought about getting a hotel for a few nights, but Owen in a hotel is a lot of work and would be very disruptive to Owen, and at least we'll get two days with a normal routine to watch. 

What are we looking for?  We have had several times in the last few weeks when he has acted like he's had a bad seizure, and yet we saw nothing - we are hoping for such an episode this week so we can see if that is what has happened.  We have also been seeing quite a few things that may or may not be absence seizures.  This type of seizure is difficult to determine definitively without an EEG because they are over so quickly that it is hard to say for sure whether or not it is happening. 

Halloween seems to be our holiday that gets trampled on by hydrocephalus.  Here is Owen with his sister at Duke last year on Halloween:

Do you see any resemblance to this year on Halloween?

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I never did get him into his costume this year, it was a very busy day, but he is sporting the same Teletubbie hat!

Here he is sitting on his bed at home, you can see his backpack:

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No, he doesn't have any pants on.  Daddy was starting to put him in his PJ's when I got out the camera.  Why did I get out the camera?  Because he was being so darn cute.  This is one of Owen's greatest talents - he can tickle his own feet:

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We will return to Duke tomorrow and again on Friday.  We're hoping to spend as little time as possible there so that he can spend as much time at home as we can collecting data in a normal environment so we're going to make these very short stops we hope!!!  Now if only they would stop closing large portions of route 86 in NC down to one lane for repaving I'd be even happier!!
 
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. 

Socializing
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! 

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And how could you not love that smile?

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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:

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

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

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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:

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

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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:

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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:

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

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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:

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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. 




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

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

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

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

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


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

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

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Seizure Study - Days 5, 6 & 7
We're still here!

Those of you on Facebook know that we had a rough evening on the night of day 5.   Owen had blown yet another IV and they were placing his 4th one.  Despite me asking repeatedly for some kind of sedation to take the edge off the IV tech proceeded saying that it was not possible to sedate for an IV.  It was his 5th traumatic procedure in 5 days and it was getting to be too much to have 4 people holding him down while he screamed.  He also planned to put the IV in the top of his hand, which would require his hand to be immobilized.  Owen is deaf and uses his hands to sign - even with his cochlear implant he still signs more than he speaks.  I also pointed out that he would no longer be able to pull to stand up and would have difficulty feeding himself.  But the tech said that it was the only viable site he could find. 

By this time he has been poking and prodding to find a site for like 10 minutes and Owen is just frantic.  What I should have done was to kick the tech out at this point, by body tackle if necessary, but for some reason that I will never fathom I did not.  He placed the IV in the top of his right hand.  He then placed his hand flat on a board to completely immobilize it - with me standing there telling him how this isn't going to work the whole time.  He had the hand secured to the board with nothing covering the actual line - it was just taped down.  When he went to take the tape off the old line - which we had left in until we had a viable new one - Owen brought his arm up to bite his wrist, which is a nifty new habit that he has picked up, and nearly bit through the line. And then Owen starts staring off into space and then goes to sleep while they are taking off tape.  I'm just a touch concerned about that, but back to the tech - So I explain that he will have to find something to put over the top of the line.  At this point the tech just walks out of the room.  I wait a couple of minutes to see if he has gone to find something.  When he doesn't return I walk out into the hallway and find him writing in Owen's chart.  I ask him what his plan is since we still have an unprotected IV and he says, "Unprotected, in what way Ma'am?".  I said, "Well, you just saw him try to bite through the line, that's probably not a good thing."  To which he replied, "That's the nurse's problem" and walked off the floor.

So Owen is now passed out cold, the line is unprotected and the tech is gone.  The nurse jumps into high gear and finds anything and everything that might cover and protect an IV.  We spend a half an hour trying different things until we manage to get something on him that looks like it might actually last through the night.  And now Momma Bear is downright pissed off.  They worked on my son for so long that he actually passed out.  They placed a line in such a way that he wouldn't even be able to talk to me.  The charge nurse was called in and told that no one was to touch Owen again except to flush the line until neurology came by in the morning.  No vital checks, no pokes, no prods, nothing.   It took my Mom, my husband and my friend Jill to talk me out of my tree so that I didn't head down and find that tech and do something painful to him.  I also had to calm down enough to not just pack Owen up into the car and head home that night. 

The next morning I told neurology that they had to either sedate him and move the IV to a more appropriate place - he had a leg that still hadn't been used - or they could provide medical transport to another facility where they might actually care about what they were doing to the kids.  You see it is somewhat dangerous to move Owen right now as they have taken away all his meds.  We won't know until he has another seizure whether or not having gone off the meds will cause it to be a much more severe seizure.  We could get halfway home and find ourselves in real trouble on the side of the road.  The doc was somewhat shocked at what happened.  He ordered the IV to be removed and to rely on Diastat in the event of the seizure, which seems reasonable considering Owen has always responded well to Diastat.  This way the only thing Owen has attached to him is a pulse-ox and the EEG, which is a manageable set of things that don't really impede his normal movement.  He also wrote orders that no more procedures are to be done that involve more than minimal pain or restraint without sedation.  We're not talking about knocking him out completely - just giving him goofy juice (Versed) or chloryl hydrate to take the edge off. 

So we decided that we need the data too badly to leave now and wait a few months to get on someone else's schedule.  And now that Owen is finally comfortable and being treated as a healthy person waiting for a seizure, rather than a critically ill boy needing round the clock care, it has become a more bearable situation. 

This evening we had something that we wondered if it might not be a small seizure.  He was very tired - Daddy and Sister came down today for a visit and Daddy really wore him out with playing.  He was standing up in the crib and his eyes started to roll back in his head and he started losing his balance.  I jumped up and helped him to sit down where he promptly closed his eyes and went to sleep while sitting up.  Now long time readers of this blog will know that Owen's ability to fall asleep anywhere is a bit of a running joke.  I have pictures of him asleep on top of a therapy ball while his therapist was bouncing him, falling asleep in his stander, etc.  And yet it still doesn't seem quite normal to fall that much asleep while upright.  So I logged it as a possible event and we'll see if there was anything tomorrow when they read the EEG.  Either he had a small seizure, or he just isn't bright enough to sit down when he's that tired.

We also met with his normal neurologist today for the first time as he is now on floor rotation.  This was an enlightening experience.  Every time I have asked the neurologists whether or not they have seen anything they just say no, not a thing.  Well today Dr. Gallentine came in and said well it isn't a clean reading either.  I was a bit shocked and explained that Dr. Smith had told us that he hadn't seen anything.  You see Dr. Gallentine specializes in epilepsy and seizures but I am now finding out that Dr. Smith is more of a general neurologist.  So Dr. Gallentine took the time to really explain exactly what he is seeing.  He says that Owen's EEG does show what he called spikes and sharps which are two different abnormal shapes that are showing up now and then throughout the day in an area of the right side of Owen's brain.  These aren't seizures and they haven't seen anything that looks like a seizure since he got here, but these abnormal bursts could potentionally lead to a seizure.  He also said that they have seen more of these shapes since he went off the meds completely.  This seems like information that might have been useful and does mean that perhaps the meds were helping somewhat.

So we still haven't had one of Owen's typical seizures and are therefore still waiting to see one.  It has now been seven days since his last seizure and that means the clock is now really starting on his next one because they have never been closer than seven days apart, but they are often between seven and nine days apart.

And now for the pictures.  Just because Owen is out of school doesn't mean that he doesn't have any work to do.  They have encouraged us to keep him doing as many normal activities as possible in a crib and chair to keep his brain as active as possible.  Ms. Pat, Owen's special ed teacher, was kind enough to gather up some stuff for him to bring on the trip.  Here he is putting some sticky stars on a piece of paper on his slant board:

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And yes, Ms. Lori - those stars have glitter on them!  We also tried out the cool easel Ms. Pat got for him:

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Owen's sister Sammy and his Daddy came down for a visit today and it was a nice break.  Grandpa came down on Friday and these visits have really helped to keep us from getting too stir crazy.  In honor of Halloween Sammy had put on a dress as part of a fairy costume, but she forgot her hat at home.  I brought a skeleton costume for Owen figuring that we would still be here for Halloween.  Sammy climbed up into Owen's crib to take a picture:

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Absolutely priceless!

And now we just go back to waiting!
 
Seizure Study - Days 3 & 4
So, we're still here and no seizure recorded, and we're still having no plan to leave anytime soon.  After many discussions and much growling we were able to get some things settled yesterday.  The annoying cardiac harness was removed - Owen does not have cardiac problems and no amount of tape/adhesive/gooey stuff could keep the leads for it on.  The IV was re-wrapped so that it could be checked without removing bandages everytime.  I think we have things down to a manageable situation now - it was a much more peaceful night.

So far the most interesting thing we have learned is that they have seen absolutely no seizure activity, even when they removed nearly all of his meds.  As of 1:30pm today all of his meds are gone now and we'll see tomorrow morning if that produces anything.  I'm not actually all that surprised that they haven't seen anything yet as we have had many EEGs done in the past (4 I think) and none of them has ever shown anything except one that was taken while he was post-dictal (knocked out cold by a seizure) and that one just showed some slowing of brain activity.   This is why we've had to go to long term monitoring, we aren't going to learn a thing until we can catch him in the act.

They say that they normally want to catch 5 or 6 events in a study, but I can't see how we can do that when it's usually at least 7 days in between our events. 

This afternoon they had a Halloween Parade for the kids here.  They came around and gave all of the kids costumes and then lined them up for a parade around the two peds floors.  Owen couldn't leave the room because he is tethered to the monitors, but they have a long cord and we were able to wheel him out into the hallway so that he could watch the other kids.  It was the cutest thing ever!  And since Owen couldn't go and visit all of the stations that they had set up for trick-or-treating, one of the child life specialists brought back a bag for him. 

I really wished I could have taken pictures of some of the other adorable kids, but then you'd have to get permission to publish the pictures.  But I was able to get a few of Owen in the Buzz Lightyear costume that they brought for him:

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As you can see - he's in a really good mood.  In fact that really describes the situation since they have taken away all or most of his meds - he's so much happier!  It had been almost impossible to get a picture of Owen smiling in the last half a year, and today I had so many to choose from that I can't show them all (and get this update done before dinner!).  It has been a breath of fresh air to have such a Happy Owen.  He was waving to the other kids as they went by in their costumes and seemed to enjoy the break from his crib.  Now we go back to the waiting game...

Oh, and yes Sammy - we'll save some of the goodies we got for you!
 
Owen Turns Four - And Other Things

It just doesn't seem possible, but it's true - Owen turned four today.  We've gone all the way from here:

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to here:

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This past year has been so eventful.  He's learning to talk, learning to walk and becoming just an amazing little person.  In just the last few weeks we've been seeing huge changes.  He has learned the words "up", "out", "light" and "all done" in the last two weeks - the last three words in just the last few days.  He's had the sign for "up" and "all done" for ages, but he is now saying them.  He has also picked up the sign for "light".  Owen loves lights almost as much as he loves ceiling fans.  I think being around the other kids at school has really helped. 

Owen can now climb all the way up the stairs to his bedroom - something I will have to get video of.  He's getting stronger by the day and I can't wait to see what the next year will bring!


 

 
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!
 
Downs and Ups

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

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

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

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

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

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

OK, so onto the good stuff!

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

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

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

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

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

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

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

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September and October

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

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

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

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


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

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

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

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


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

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

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

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

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

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

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

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

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

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And ended up like this:

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

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

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And you can see the results here:

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

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Therapy of All Kinds

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

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

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

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

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

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

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

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

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And we have another little video of Owen standing up:

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

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

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This is Owen standing at the railing looking out at Niagara Falls.  Owen did amazingly well on his 10 day trip from VA to Niagara Falls, Canada, to the Adirondacks in NY, to Mystic Seaport in CT and back home again.  He handled the traveling with no problem and we had a great time visiting family, friends and interesting places. 
 
Happy New Year!

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Have a Happy Thanksgiving!

 
 
 



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