The Amazing Owen
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Forever Days
There are some days that you know will stick in your mind forever - that you are certain you will recall vividly when you are 90 and be able to remember every detail.  Every parent carries around a collection of these days in their pocket and brings them out every now and then.  We have a large assortment from our daughter - she was our firstborn and everything was new: the first time I was called mama by my own child, her first steps, her first day of school, her first set of straight A's and so on.  I'll admit that when we had our second child that I was afraid that things wouldn't seem as amazing as they did the first time.  I was wrong.  If you read my last post you saw that Owen has finally achieved independent walking with his walker.  I was amazed the day that we saw that and could not wait to post it to share with the world. 

But somehow it didn't seem completely official.  There was still one last step to make it real.  You see there have been many, many people that have helped Owen along to get him where he is today.  Each and every one has been vital to improving Owen's quality of life: Dr. Kurtzberg who gave us our first hope with the cord blood, Nacol the physical therapist that has been with Owen since he was a month old and has never given up, her boss Kathy who is ever the optimist about Owen's future, past aides, other therapists that have come and gone, Pat the special ed teacher who can bring out the best in him, Julie the music therapist that always makes him smile, Angel in OT (and Vesna before her), speech therapists like Melissa who have known him for years and keep up the effort even through enormous setbacks brought on by seizures, Dr. Fearon in Texas who takes on the kind of surgeries that other plastic surgeons don't want to deal with because there isn't enough money in it - but whose efforts in making Owen's head smaller have had a life changing impact, along with Dr. Swift who did the neurosurgery portion of that head reduction surgery, Dr. Buchman who placed a cochlear implant for Owen when many others would have said it wasn't worth it because the odds were that due to his brain damage he would never talk - he understood that the unbelievable value of the human connections made through hearing are worth it even if speech isn't possible, Dr. Gallentine who has finally gotten Owen's seizures under control and without whom we would not have intellectual development at all, Barbara the nurse who has worked wonders in the last months to push Owen to his greatest potential.  And that doesn't even mention the support staff for all of these people that help with getting appointments, scheduling surgeries and everything else and other therapists that have come more recently.  Owen has a ginormous support staff that boggles the mind when you stop to think about it.

But still there is someone missing from that list.  Farther back than all of them but Dr. Kurtzberg who was our first contact at Duke - there was Dr. Grant.  Dr. Grant has taken care of Owen since the day he was born.  Through all of these tough decisions he has been there to help us know when it was time to wait, and when it was time to go for it and commit to another surgery.  And many times it has been he who has taken that risk on personally and performed the surgery.  He has cared for Owen and about Owen from the very beginning.  When Owen went under the knife for the last time in March it was with the hopes that perhaps the surgery would help with Owen's walking.  Yet another leap that we all took together hoping for the best, but not knowing what the outcome would be.  And so it seemed that somehow the progress wouldn't be official until Dr. Grant got to see it for himself. 

Today we went down for a checkup and I brought Owen's walker.  Sammy set the walker down out in the hall and I put Owen in it.  He grabbed on and headed straight down the hall as confident as could be.  He tried to get into the doctors' workroom and I had to turn him around.  He headed all the way back down the hall and went straight to Dr. Grant and put his arms up to be picked up.  There really aren't words to describe the feelings in that sort of moment.

I only got a few seconds of video because he took off so fast.  I have debated on whether or not to post it because it's so short compared to the walk that he took, and yet it seems sad not to at least post that little bit and so I will. 


This is definitely a forever day.  Seeing Owen walking down these halls where he has been carried since birth was really something.  Each and every step that we have all taken to get here were worth it to see the steps that Owen took today.

I also can't close without a mention of the Hydro Family Gathering that happened on June 23rd.  This deserves an entire entry all its own and I will try to get through all my pictures and put one up soon.  It was an incredible day.  18 families met up in Nashville, Tennessee.  They came from Virginia, Georgia, Washington State, Nebraska, Oklahoma, Missouri, Wisconsin, Ohio, Texas, Idaho, and Kentucky.  (If I missed your state email me and I'll add it).  This is another one of those things that is really hard to describe in words. To spend time with people who really understand your way of life, to feel truly at ease with your child who is "different" from the norm because in this group they are normal.  And it is awesome for the siblings too - to meet others that share their lifestyle and understand what they have been through.  I will post lots of the wonderful pictures that we took in the coming days, but for now here is a group shot:


And a link to the Shutterfly page with lots of pictures on it: Shutterfly Share Page (created by Josephine Anderson)
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:


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


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?


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:


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:



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

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

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



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





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


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



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


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

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

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


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


And Oliver was just sooooooooooooooo cute:


Avery got to meet Jigsaw:


And Sammy and Brogan roasting marshmallows:


And Sammy and Avery played the "cloud game":

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

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

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:


So Much To Tell
I hardly know where to begin - so much has been happening lately and all those things seem like they should be first in this entry.  So I'll go with tradition and do the medical stuff first and work our way through therapists and meeting another hydro family to finally sharing a picture of the wonderful dog that Owen will begin his training with this week.

Owen's progress since his VNS surgery has been nothing short of remarkable. Before the surgery, and before we started removing meds in the fall, our norm was a major seizure about every 7-9 days.  These had gotten increasingly violent - the last seizure before his surgery, while on Keppra, had almost 20 minutes of full body convulsions including both arms, legs, his head and even his eyes.  His oxygen dropped dramatically.  All of his seizures ended with an 8-10 hour postictal period where he was so deeply subconcious that he could not be awakened no matter what you did to him.

We are now averaging 14-18 days between seizures, so that's a 50% reduction.  They are also nowhere near as severe.  We have not had any convulsions since his surgery.  Even if his oxygen has dropped, we are dropping into the low 90's, not the low 70's or less and the breathing problems are not lasting anywhere near as long.  And better yet is the recovery time.  Instead of 8-10 hours of deep subconciousness - which would mess up his sleep schedule for a week - he only sleeps a normal sleep for one to two hours.  He can be roused if you try, still responds to stimuli and woke up after only 45 minutes after his last seizure because we were on a bumpy road.  Once awake he's right back to baseline crawling around and eating.  Previously it had sometimes taken a week to get back to normal because he would be shaky and uncoordinated. 

Now that the seizures have slowed way down he is back to making intellectual progress again.  He has regained all of his words and signs and has picked up a few new ones.  He now says "dog" and "all done" and signs "thank you".   You can now hand him a granola bar and he will take a bite off and put the rest down instead of cramming the whole thing in his mouth.  He has learned how to climb the inclined ladder into his sister's mini loft bed.  He will now hold a bag of fig newtons with one hand to stabilize it, and then reach in to get food out.  Previously he would just keep pushing the bag with one hand and it would keep moving further and further away from him.  He can pull objects out of the "what's inside" box because he seems to actually know that there is something in there. He just seems to be able to figure things out that have baffled him in the past.

But wait, there's more!

And finally on the VNS, there are the smiles.  Owen had started to have some serious behavior problems before his surgery.  He would swing wildly between rage and manic happiness and as time went on the rage was lasting longer and longer.  He would spend entire days (and nights!) whining and crying.  He couldn't sleep.  This is why he missed almost two months of school.  There are almost no pictures of Owen during that time where there is anything like a smile on his face.  Here are my pictures of Owen from the last two and a half months since his VNS:

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That's right - I've got a smiling boy again!!  And that would have made it worth the surgery all on its own.

His improved frame of mind has also made therapy somewhat more useful.  So here is Owen and the people that he works with at school.  I still have a few more to catch on camera, and I need to get a better picture of Ms. Amy but I didn't want to leave her out.  As an added bonus, we have even more smiles!

Ms. Ryan - Preschool Teacher

Ms. Julie - Music Therapy

Ms. Stacey - Hearing Therapy


Ms. Angel - Occupational Therapy


Ms. Amy - The Other Preschool Aide

And Ms. Pat - Special Educator, Advocate and the one that make Owen crack up!


And now we are up to last week's appointments down in North Carolina. They increased the current on his VNS, and he did a stellar job during his audiology appointment.  Here is another big leap since his VNS. We have been trying for two years to get Owen to indicate in some reproducible fashion that he has heard a sound.  This skill is to be used for testing his hearing with his cochlear implant. We generally have to give him a toy, let him focus on it and then see if the sounds in the sound booth cause a change in expression or him to look up from his toy.  Not the most reliable method of testing.  Ms. Stacey now has him pointing to his ear quite often in practice testing during therapy and he did it THREE TIMES during his testing with the audiologist.  This isn't enough for a full test, but it is three times more than he has ever done before and we are hopeful that he will continue to improve.  He never seemed to "get" what we were asking for in the past and now he seems to understand it at last.

We also had the wonderful fun of meeting another hydro family while we were down this time.  We were actually supposed to meet a few new families and meet up with a few old friends too, but due to an incredible set of circumstances we only actually got to snuggle one new baby - and I did get to chat with Claire's Mom (and her Dad too on the phone, so we didn't forget you Brad!).  The other families were greatly missed and I hope that we will be able to see them soon. So may I introduce Owen's newest friend, Marlena:



She is adorable and it was great to meet her family too.  Marlena was in for her second cord blood infusion and we peeked in just before they got started.  Owen must have liked her because I found her hospital bracelet in his stroller about an hour later - he wanted something to remember her by!

And now for the dog.  I didn't have a picture of Jigsaw to put up with the story in my last post, but his trainer was kind enough to send me one today.  Here is Jigsaw posing beautifully on the Blue Ridge Parkway:


How could you not love that face?  We will begin our training on Wednesday with this beauty and I can't wait!  I'm sure there will be many blog entries to come about our training.

Finally I'll close with an awesome picture that Daddy got of me and the kids at the St. Patrick's Day festival this past week:


Post-Op and Snuggles!
So today was Owen's post-op checkup for his VNS.  All went well. We saw neurosurgery first and Dr. Grant said the incisions look good and Owen is cleared for school again. Then neurology came in and Dr. Gallentine checked the implant by putting a wand over his chest.  He said that the leads checked out fine and that it seems to be working properly.  He then reprogrammed it to increase the current a bit more.  We'll go back on the 31st to increase the current again.  He will increase it twice more (if I've done my math right on the milliamps) and then we'll waita while to see where the seizures are at.  On the Keppra and out of school and therefore away from the viruses that are his worst triggers, Owen was having one seizure a month. It was a big, nasty seizure, but not all that frequent. Therefore it will be hard to know for a few months if it is helping the seizures and so we'll level out for a while to see what happens.  If he keeps having them then they will increase the current again.  If the seizures level out then we will try weaning the Keppra.

So all seems well in VNS land and if all goes well at Owen's GI appointment tomorrow - we're still having lots of reflux as a side effect of some of his meds - then Owen will return to school on Thursday. He hasn't been in school for more than a few hours here and there since October.  Owen continues to sleep through the night - which has Mommy and Daddy dancing in the streets!

Owen and I actually went down last night because the weather was supposed to be bad this morning. I can remember when we used to stay in hotels and I could lay him down on the bed and take a shower and he'd still be there when I got back.  Now I don't dare to go to the bathroom without some real forethought. I turned my back for a moment last night to unpack things and turned back to see Owen sitting up in the chair looking quite pleased with himself:

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Or maybe he was just laughing because he was tickling his own foot - another little talent he has developed.

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I took the pictures with my iPod so they aren't the best, but you get the idea.

I also used to sit in the waiting rooms and crochet and read while Owen hung out in the stroller and napped. Not so anymore, now he's a boy on the move:

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He was cruising from one bit of furniture to the other and I had to wait for him to sit still for a minute to get a picture!  Certainly a lot less boring these days!

Today little Claire (from a few entries ago) was getting her stem cell infusion. This is always an exciting occassion and we got to see Dr. Kurtzberg again when she was done with Claire, which is always nice.

The last time I saw Claire was 12 days ago before she had been shunted.  I could only see her for a few minutes before they shooed me out so that they could do an MRI. Here is the picture from that day: 


It was great to meet her, but I didn't get to hold her because she was a busy little girl that day.  Today I got in some serious snuggle time:


And this time she was awake and alert the whole time I was holding her. She spent most of the time just gazing at me and I even got a few smiles!  (Yes, you can tell me that's just gas at this age, but I'm still gonna believe they were smiles!)


After these pictures Owen and I went off to our appointments, but then I just had to sneak in one more snuggle before I left. 


And finally I caught a cute picture of Claire giving us a big yawn!


It was a wonderful visit.  I can't thank Amy and Brad enough for letting me share in the joy of their little girl.  And I thank Brad too for giving up some of his precious time with his little girl to watch Owen so that I could see Claire.  I have met so many wonderful families through this site and I cherish each and every one.

And so now we have the first family photo of Amy, Brad and Claire:


I wish you well and I hope we see you again soon!

And finally another bit of great news that I just read a moment ago... Matthew is going home today and is doing well.  Really, what a great day!
Surgery a Success and Welcome Claire!

Owen came through his surgery just fine.  Dr. Grant said that all went well and he was happy with the placement of the VNS.  The device is turned on with a very low current.  We will come back every two weeks for the next two months to increase the current slowly.

He is very shaky, but he has been sitting up and drinking and is looking more and more alert:


And here is a picture of where they did the incisions:


He's not quite his perky little self yet, but he doesn't seem to be in any real pain and is resting comfortably.

And in other great news, Claire was born today!  Yesterday this was Claire still in her Mommy's tummy:


And now just down the hall from us is a brand new beautiful girl:


I can't wait to meet her! 

So all in all, a really good day!

Meeting the Gibbs and VNS at Last!
It has been a suspense filled lead up to the surgery - again.  The day before yesterday I found that the insurance company had denied the approval for the VNS surgery.  They felt that we should try the resective surgery first.  Since that surgery requires removing the focal point for the seizures from the brain, and Owen's focal point is the entire right side of his brain, this did not seem like a good option to us.  After much scrambling by our neurologist and neurosurgeon and their staff the doctors were able to convince them that this surgery actually was the best way to go.

I know we had said that we were considering the possibility of trying the meds for a while longer, but he had a big seizure with 20 minutes of full body convulsions (even with two Diastats) last Sunday.  Even if the VNS doesn't prevent the seizures altogether, you can use the wand to shorten them and that is becoming increasingly important.  And it should help even out his mood.

So we are sitting in the waiting room.  We've talked to Dr. Grant - the neurosurgeon - this morning, signed all the forms, and now we're just awaiting our spot in the OR which should be in the next few minutes.  Owen is not minding the wait at all:


He fell asleep out in the main waiting room and has stayed asleep while we've been checked into a pre-op room.

Last night I had the wonderful fun of meeting the Gibbs family.  Their daughter Claire is probably being born even as I type this, or will be very soon just two floors up from where we are sitting.  I met them through the website and since we were all here we thought it would be fun to get together for dinner.  Here is me, Amy and Owen (and Claire still snug in her Mommy's tummy)


And a group shot of Amy, Brad, Owen and Claire:


It was fun to sit and chat and I'm really hoping that we get to meet Claire before we leave. 

At the end of our visit I was walking out the door when I realized that Owen's drinking bear was gone.  Amy and Brad were so very kind to help me search high and low for it, but it was nowhere to be found.  So Owen and I made a quick trip to Kroger where I bought a honey bear and some straws to make temporary replacement:


As you can see, he drank almost the whole thing this morning so it looks like we have something that will work for the next two days. 

After Owen's surgery we will be admitted overnight.  This is normally an outpatient procedure, but since we'll be working on the same side as his shunt tract they want to give him IV antibiotics just to be sure that the shunt is safe tonight. 

I'll update more as things progress today.  They say they'll be back in 20 minutes to bring him to the OR.  The surgery lasts for an hour to an hour and a half, and the prep will take 45 minutes and the cleanup usually takes a bit too. 
Ah...We Meet At Last!
Just about 4 years ago I began writing this site.  The time during the pregnancy was, as you can imagine, somewhat difficult.  I don't want to say that we felt alone, because that would be a disservice to the wonderful family and friends that showed us so much love and compassion during that time.  I think a better way to describe it would be to say that we were hundreds of miles out to sea floating on a raft.  Our friends and family could visit us on that raft, bring us care packages and words of encouragement, but no matter how much they wanted to they couldn't help us get off the raft.  We were completely surrounded by unknown waters with no way of knowing where our raft was taking us or where we were going to find ourselves when we landed. 

This website was many things to me when I started it.  We had gleaned lots of bits of information piece by piece as they had passed by our raft in little bottles and I wanted to be sure that all of that information was spread to everyone on the other rafts that I knew must be out there.  I wanted to be able to share what was happening on our raft with our family when talking about it was hard.  And I wanted to reach out to all of those others rafts and say "Come, lash your raft to ours and we'll float through this journey together."

Never could I have dreamed that so many rafts would join us that we would become a flotilla.  Never could I have imagined that even when we reached land we would stay connected to the people on those rafts in such a meaningful way.  We are spread all across the continent, but we are still lashed together. 

From August 4th to August 6th the most amazing thing happened.  Those of us who have stayed the closest together over the last few years met together in person in Niagara Falls.  Some I had met when their kids had come in for cord blood infusions, and others I had only gotten to know through the wonders of the web.  It was an incredible experience.

This was the best picture that I took of the group of kiddos.  From left to right, with links to their blog sites:  TylerElijah, Isaac, Elisabeth, Matthew, Cayman and my Owen.


I think Kristen got a better photo where you can almost see all of the faces:


Not pictured above is Ben, who made the trip with his Mommy, but didn't make it to the State Park that day.  I shamelessly stole this picture of Tyler (left) and Ben (right) from Tyler's website:


The kids made instant friends:





The above picture is actually taken from Cayman's website, and in truth Elisabeth and Owen were have a pretty funny disagreement over who should play with the football that Owen stole from Tyler.  You can read about that here.

And I love this picture of Elisabeth with Isaac and Matthew.  You can almost hear her saying, "Yeah, these are my boys..."


And lets not forget the siblings.  Sammy was very excited to meet other kids whose lives were more like hers.  Sometimes it is hard for her because her classmates and other friends just don't understand that a bad day isn't "My brother got more jelly beans than I did", but more like "My brother had another seizure and is in the hospital". 


Top Row (left to right): Alexandra, Megan, Grace, Micah, Sheri
Bottom Row (left to right): Katelee, Spencer, Sammy, Lorelai and Mason

Plus, it was just a good excuse to run around with a bunch of other kiddos, especially when there are sprinklers going:


We made a pretty good sized group all spread out with our gear, and Owen's stroller is behind me so it isn't even part of the scene:


But who could ask for a better backdrop for such a gathering than to be just a few feet away from this view:


I loved this picture from Elisabeth's website...I think it's possible that we Mom's took a few pictures:


And speaking of Moms - yeah, it was really the Moms that were wanting to wanting to get together for a big ol' chat in person:


From left to right that's: Diane (Tyler), Amanda (Isaac), Jen (Elijah), Me (Owen), Jill (Matthew), Lisa (Elisabeth) and Kristen (Cayman).  Plus there is Elijah trying to get to his Mommy.

A chat, plus some just plain silliness.  We all rode the Maid of the Mist together that afternoon.  Depending on which camera was pointed at us, different people's faces were blotted out by the water drops:



but it was wonderful fun getting wet whether the cameras made it through dry or not! Those pictures are of Jill, me, Kristen and Diane.

Owen was just fascinated by the raincoat:


And he giggled when his face got all wet at the base of the falls.  Sammy enjoyed it very much as well and even though we had just gone on the boat the day before when we first got into Niagara, she was keen to go again when the whole group went.


In addition to the day at the park there were dinners and long hours by the pool at the hotel for catching up on our kiddos and chatting up a storm.  This is definitely a day we will all never forget and we all hope to do it again in the not so distant future.  Our rafts have all drifted back to Virginia, Washington state, Toronto, Missouri, Nebraska, Ohio and Massachusetts, but they are tethered together stronger than ever.
We're Still Around
So, it has been just one day short of a month since my last update and just a few things have happened :-)

On April 19th we headed down to Durham for a whole round of appointments.  The first was more for fun.  We got to see Dr. Kurtzberg and she gave us a tour of the stem cell facility.  This was incredibly cool and I really wish I could share lots of pictures, but alas while my camera was with me, my memory card was not.  So the best I could do was a couple of not-so-great pictures with my phone.  This is one of the storage tanks for the cells:


These freezers contain liquid nitrogen that keep the cells frozen.  There are quite a few of these freezers, but if you have cells stored at Duke, maybe your kiddo's cells are stored in this one!

We got the full tour and got to see the machines that separate the cells from the rest of the blood, the ones that count the cells, the ones that inspect the cells and all kinds of other things.  This was incredibly interesting and honestly the next time I'll bring my camera and my memory card so that I can share it with you.

We spent the night in Durham and then headed out first thing in the morning for the audiologist.  That went really well.  Owen was in a good mood and they were actually able to do some real testing for the first time in a long time.  They found that he is still responding to voice down to 10 dB, which is great.  However they found that he was responding to low tones much better than the higher tones, so they gave him a new mapping with the higher ranges boosted by a bit.  We have actually seen a noticeable difference in the noises that he makes.  He has definitely added a number of new high pitched sounds to his repertoire since then.

We had a few hours between that appointment and the one with his neurosurgeon that afternoon.  To pass the time we headed down the street to a mall where they have an indoor toddler playground.  Everything there is sized for toddlers, and the floor is made from thick foam.  Again, my camera wasn't in working order so I had to take pictures with my phone.  If you are taking pictures indoors then your subject has to remain perfectly still in order to prevent blurring.  Owen is never still, so the pictures are always blurred.



Owen was particularly keen on a fun-house mirror that they had on a wall:


It's a great place to let him get out and crawl for a while instead of just sitting in the stroller all day.  Eventually the fun had to end and it was off to Duke for the neurosurgeon.  This was just a checkup, and we didn't need a CT scan this time.  The purpose was mostly to let the neurosurgeon see all of the great progress that Owen has made.  Unfortunately they were running really far behind and by the time Dr. Grant came in Owen was fast asleep.  But we did discuss what is next for Owen. 

Owen has a Chiari malformation, which means that his cerebellum has been pushed down through the base of his skull by a bit.  This hasn't ever caused any problem with his spine in the past, because his huge head gave lots of room to keep the pressure on the cerebellum low.  When we made his head smaller in the fall, we also increased the chances that the Chiari might cause problems with the spine.  If the cerebellum starts putting too much pressure on the spine you can get something called a syrinx - which is kind of like hydrocephalus of the spine.  With a syrinx the CSF builds up in pockets in the spine and can cause all kinds of problems including problems moving ones legs, problems with swallowing and other issues.  We knew about this risk when we did the cranial vault reduction, but they felt that the risk would be small given that Owen's head would still be fairly large.

A small risk is still a risk though, so we need to monitor the cerebellum and spine.  The problem is that in order to monitor this situation you need an MRI.  MRI's and cochlear implants do not play well together.  In the USA the magnet must be removed from a Nucleus Freedom implant to have an MRI.  In other countries it does not.  Why this difference?  FDA approval.  Same device, but different protocols in different countries.  The removal of the magnet is, in theory, a fairly simple thing.  You make a little incision, remove the magnet, slap a band-aid on it, get your MRI, put the magnet back in and go on your merry way.  The reality is that this is two sessions in the OR to be coordinated with an MRI which turns out to be next to impossible to arrange.  We were several weeks into attempting to get this scheduled when our implant surgeon found out that there has been quite a bit of testing in the US on MRI's with the magnet in place.  They have found that it can be done quite safely with the magnet immobilized using hearing aid molding material.  We are in the process of getting all parties on board to attempt this - with all of the waivers signed for a non FDA approved procedure.  A CT will not show a syrinx, removing the magnet risks infection to the implant and shunt, this new procedure is the least risk and hopefully we can get it all arranged. 

Yeah, we still have 'em.  In addition to the one on April 15th from my last post, he had one on April 29th which did cause some breathing issues, but they weren't severe enough for him to go to the hospital.  That one was associated with a nasty stomach virus.  And he had another one today.  We were having an absolutely wonderful playdate with Owen's friend Mya.  We had just come inside for some lunch when he seemed to be having trouble sitting up all of a sudden.  He went from woozy to just plain wilted and then he couldn't sit up at all.  His eyes were open but nobody was home.  Then he started to shake in one arm.  We got out the Diastat.  Just after I gave him the first dose he threw up a bit but the shaking stopped almost immediately and then he just went to sleep.  He never had any trouble breathing.  So, this one was not nearly as severe as most of them because it resolved itself with just one dose of Diastat and he never had breathing issues.  He woke up after about an hour with a bit of a headache, but otherwise just fine.  Big thanks go out to Mya's awesome Mommy for her cool head and help during the seizure, and to her Daddy for taking Mya so that her Mommy could help me.  Big thanks also for being understanding about Mya's wedge which unfortunately caught Owen's lunch.  I thought I'd get the bad news overwith so that I could post the fun that the kids had today.

Today Mya and Owen had a good time playing with Mya's musical instruments:


And Mya was kind enough to share her old tricycle with Owen so that they could ride together.  These bikes have been adapted nicely and Owen just had a blast.  Their feet are strapped to the pedals so that they get the motion of pedaling, but you can steer and push with the handles on the back. 


It was a really fun visit - even with the seizure.  Once we got home though he was back to his normal self.   It was a nice day so we had a fire and cooked outdoors.  Here is Owen being his happy little self:



Owen Has a Playdate
And Mommy too!  We were very lucky in early 2008 to meet little Elijah and his family who live very near to us.  Eli also has hydrocephalus - though, of course, his story is quite different from Owen's just as all kids with hydrocephalus have their own unique way of manifesting this nifty little condition.  I thought it would be fun to show the two boys as they have grown up together. 

January 2008 when Owen's head was almost as big as all of Eli:

September 2008, Eli's catching up:

Now we have actually seen each other since then as we have run into each other in Walmart and such.  However we hadn't had a chance to really get together again until this week.   Here they are in February 2010, along with Eli's big brother Spencer.  Eli is about a year younger than Owen, but he is now taller than Owen is when they are standing up (because Owen has such short legs):


Owen is so happy he's clapping (which is his favorite hobby now):


And here they are, just two boys hanging out:


It's always a good time to hang out with Jen and this time she brought all five kiddos so I finally got to meet them all.  You can read more about this wonderful family here.

Otherwise things are getting back to normal.  We have split Owen's daytime doses of seizure meds into two so that he gets half in the morning and half at noon - this seems to be helping him to handle the load quite a bit better and he's now functioning normally in the mornings again. 

I will close with a cute picture of Owen.  It's not just cute because he's sleeping - and all children are adorable while they sleep - but also because of how he got there.  That pillow with the purple pillowcase hangs out in our living room on a full time basis.  It is there to put next to Owen's stairs and ramps so that if he falls off the side he won't hurt himself.  It is also used at naptime where we put him down to sleep on the living room rug so that we can keep a closer eye on him than we can upstairs in case of seizures.  Today though I left Owen over by his toys well away from this pillow and headed out into the kitchen to make lunch.  When I came back out into the living room there was Owen, all snuggled up on his pillow.  He had crawled there all by himself, made himself comfortable and fell asleep.  I put lunch back in the fridge :-)


Measurements, Meetings and Messes
First, let's start with some measurements.  Before Owen's surgery I took a bunch of measurements so that I could compare them later.  Here's how we are doing so far:

Well, this is harder than you might imagine since right after the surgery he had gained weight from all the extra fluid and swelling.  Now two weeks later the swelling is all gone, but he has also grown enough to make his sleepers too small on him again.  So I have taken my best guess.

Before surgery: 13.96 kg (30 pounds, 12 ounces)
After surgery: 13.62 kg (30 pounds, 0 ounces)

So he lost at least 12 ounces during his surgery.  I really couldn't quite think of what 12 ounces really meant, so I started going through the cupboards and weighing things on my kitchen scale.  Here is what 12 ounces equals:

These three tangerines:

Or these five wooden blocks:

Or these two cans:

Now imagine only weighing 30 pounds and strapping those to the back of your head and trying to sit up!

Distance From Top of Nose to Base of Neck:

Before Surgery: 46.5 cm
After Surgery: 45.5 cm

From One Ear to the Other Ear Over the Back of the Head at its Furthest Point:
Back View:

Side View:

Before Surgery: 38.6 cm
After Surgery: 36.0 cm

Head Circumference:
Before Surgery: 56.5 cm
After Surgery: 54.5 cm

A few centimeters might not seem like much, but it really adds up when you are talking about volumes.  If you pictured a perfect sphere with a circumference of 56.5 cm, then the volume of that sphere would be 3046 cubic centimeters.  If you change that circumference to 54.5 cm, the volume of that sphere goes down to 2734 cubic centimeters - a difference of 312 cubic centimeters with just a 2 centimeter change in circumference!  Of course Owen's head isn't a perfect sphere, but it give you an idea of how much of a change these measurements mean.

The numbers will likely settle down a bit more during the next few weeks - we were told 6 weeks to get your final results - but these give you an idea of why we are seeing such good results in mobility already.

Remember Avery from yesterday's post?  If you don't, scroll down and read it, and then come back.  Ready?  Josephine sent me her pictures this evening and I wanted to share two of those that were really cute.   In this one I think it looks like Avery is telling Owen a secret that he is listening to intently:

2009-11-20 001.JPG

But this one is my favorite.  You might not be able to see the kids faces, but you really get a sense for the awe that they had of this Christmas tree:

2009-11-20 008.JPG

Avery's Mom shared her wonderful thoughts about this visit here. Owen just couldn't take his eyes off Avery during our visit and we're both looking forward to future get togethers!

OT has not been going very well for Owen lately.  His beloved therapist Vesna left to pursue a job teaching other OT's.  We were incredibly sad to see her go, but we hoped for the best.  Unfortunately Owen has not been able to bond with his new OT at all.  Owen responds best to happy, bouncy, really outgoing people who aren't afraid to be incredibly silly.  This just isn't the personality of the new OT and while I think she is very intelligent, she just isn't getting through to Owen.  Most of his sessions these days are spent with him making his angry face and refusing to do anything useful.  So, while we sort out that situation, it's up to Mommy to pick up the slack. 

Our biggest OT challenge at the moment is tool usage.  Owen is somewhere behind the cat in his abilities to use tools.  If you hand him a washcloth he will examine every fiber in detail visually, feel the texture of it, and then eat it. If you hand him a mallet he will do the same.  He does not push cars along the floor, he inspects them and then fiddles with the wheels.  Spoons, toothbrushes, combs, crayons, etc are all just objects to be observed and tasted, but he does not connect them with any real purpose.  This is the problem that we tackled today.

Attempting to place a crayon or paintbrush in Owen's hand, and then getting him to put it on a piece of paper generally results in a lot of screaming - so I decided to start small.  If you are going make any progress with a toddler, you need to be prepared to get messy so I broke out the fingerpaints.  He needed a bath anyway, so it seemed like a good time to make a mess.  I really just wanted to calm him down with the whole process.  When I first put his hand in the paint he got pretty upset.  We did manage to get one handprint on the paper:


But he rather quickly found out that not only could you turn the paper blue, but you could also turn your feet blue and your hands and belly and THAT was FUNNY!


That picture also shows a benefit of his new mobility.  There is no way he could have sat there and looked down at this own feet that way and seen the results of what he was doing before the surgery.


He no longer fought when I put his hands in the paint, he kept saying more(and yes I mean SAYING, he can now clearly vocalize "More") and happily spread the paint everywhere.  Afterwards though, I think he may have had second thoughts.  In this picture I think he is asking "Mommy, are you sure this says washable?"


And yes, it was washable paint so up my little smurf went to the tub to wash it all off.  He left a trail behind him where he crawled as I was running the bath:


But the water turned blue and slowly the paint washed off:




I think we gained some ground in him not being so upset when you try to work hand over hand with him, and I think we had some fun too!

OK, that was a long one, but there's just so many exciting things happening right now!
Meeting Avery
Things continue to go well in Owen's recovery.  If you didn't know that he had been through major surgery just over two weeks ago, you certainly wouldn't know by looking at him.  The only effects that we are still seeing is that he still tires a bit more easily.  He started back in school on Tuesday, and he went in on Wednesday too.  Normally he would go for Thursday morning as well, but he was pretty tired after Wednesday and so we decided not to push it.  He was happy to be back with his friends though.  He also resumed therapy this week, but they all took it pretty easy on him.

Today we got a special treat.  Owen got to meet Avery.  We found Avery and her Mom Josephine rather accidentally through their blog which you can read here. I had read her blog and she had read mine.  We had passed each other in cyberspace with comments on different blogs that we both follow for the last few years.  Recently though, I was reading Josephine's blog and noticed that some of the doctor's names were very familiar, and so was the name of the hospital that she was taking Avery to - they are the same ones that Owen has seen right near our home.  So I sent her an email asking if they lived in the area and as it turns out they live rather close by and I pass right near their house every time we head down to North Carolina.  So we just had to get together in person.  Avery had a doctor's appointment right near us today, so we decided it was a good time to meet.  We were also hoping that Jen from the blog The Lollipop Kids would be able to join us as well as she lives in the same town where we met, but she couldn't make it today.  Hopefully we'll be able to catch her on a future meeting.  Maria, if you're out there and you'd like to join us in this local hydrocephalus group - I don't have your new email address yet and if you send it to me I'll make sure you get an invite.  I also have some friends whose children's have other disabilities - not hydrocephalus - maybe we should organize a bigger group too.

Anyway, it was a great visit.  It's always good to get a chance to sit down with another Mom who understands the trials, tribulations, joys and wonders that you are experiencing with your special needs child.  And Avery is just as cute as a button!  We met at the mall which has a big open area with a fireplace and couches and, at the moment, a big Christmas tree.  The kids had fun looking at the tree and crawling around while we chatted.  Miss Tessa was kind enough to watch the kids while the Moms got a chance to talk. Josephine took a bunch more pictures than I did, and I'll post more when when she emails me hers, but I just couldn't wait to get up at least a couple of pictures of these two cuties:



I'm so glad we managed to pull of the meeting because it made for a very pleasant morning!

I also thought I'd show off some of the progress that Owen has been making.  Check this out:


This is a rather big deal.  You see prior to the surgery, Owen would attempt this little maneuver endlessly, always with the same result - he'd reach up, grab for the beads and then the weight of his head would make him tip over.  He can now play with the toys on this panel with ease by propping himself up on one arm. 

And then there is this:


He is pushing up with his arms fully extended.  This is also something that was impossible three weeks ago.  He simply couldn't be stable enough with his head that far off the floor - and this is the first step to getting him to crawl with his tummy off the floor. 

And here's another wonder:


See how far down he is looking?  And he is sitting fully unsupported.  Attempts before the surgery to look this far down would eventually result in a toppling over - he would instead usually bring the book up to look at it.

And finally just a few more pictures for comparison to previous posts to show that the swelling is completely gone now.  There may be some internally that will take a few weeks to go away completely, but there is no longer a puddle anywhere on his head:



Not bad for just being two days past two weeks since the surgery!  
Mya and the Green Chair

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

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

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

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



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


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


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


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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