The Amazing Owen
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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

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Ms. Angel - Occupational Therapy

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Ms. Amy - The Other Preschool Aide

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

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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:

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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:

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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:

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Ears, Dogs, Meds & School
As you can probably tell from the title, I have a few subjects to update about :-)  Brace yourselves - I have a keyboard and I'm not afraid to use it! But there has been a lot of exciting stuff happening lately and I want to do each bit justice.

EARS - TWO YEARS WITH THE IMPLANT
The first is that two days ago was the second anniversary of the day Owen's cochlear implant was turned on.  Last year I did a really nice video for the "One Year of Sound".  I have not had enough time this year to make a video - but I did think that maybe I should spend a few words on the progress with the hearing.  Owen's receptive skills continue to be very good.  He can follow a very large number of simple commands like "stop that", "arms up" (for putting the tray up and down on the stroller or booster seat), "look at me", "take <whatever object>", "turn the page" and quite a few more. Really, he seems to understand the vast majority of what you are saying to him.  He seems to recognize which song you are singing to him and will put the correct signs (or as many signs as he's willing to do) with them. 

His expressive skills are somewhat further behind, but they do seem to be coming along.  He now uses the words "mama", "dada", "more", "hi" and "up" at the correct times and in a reproducible manner.  It may not seem like much, but if you had told me when we started the implant process that two years later he'd have 5 words I'd have been jumping up and down for joy.  And the good news is that all of these words have really come since he started speech with Ms. Jessie. Having consistent speech therapy twice a week since the end of last year has really made a difference, and so we are looking forward to more words coming in the near future.

I'm going to get a little ahead of myself by mentioning a dog here - I'll get to those details in a minute - to describe another leap Owen has made with his hearing.  Discerning spoken words in a room with background noise is not always easy for people with hearing aides or cochlear implants.   As such I think it makes Owen often seem anti-social because he doesn't always pick up on the fact that you are talking to him when there is a lot of other noise.  Tonight a woman came up to him in a room with moderate background noise and said "hi", and Owen looked right at her and said "hi" back.  There was another moment when a dog was being praised verbally with a "good boy" and Owen immediately clapped - just like we clap for him and say good boy in therapy.  To notice that someone was working with a dog in the room (Owen tends not to pay attention to what is happening elsewhere in a room) showing a very good social awareness and to be able to pick up the words "good boy" in a room full of people is a huge leap in his ability to listen.

Finally we'll cover the signing.  Owen signs rather better than he speaks at this point, but probably only because he's been doing it longer.  I'm sure I'll miss something here, but a quick list of signs that he has now would be:

Pear (his favorite food - will often use for fruit in general)
Cookie (his other favorite food - will often use for anything sweet)
Bar (for granola bar)
Want
More
Eat
Drink (uses milk for all drinks)
All Done
Up
Waves Hi and Bye
Fan (he really likes ceiling fans and has a sign to ask to turn it on)
Sleep
Yes (usually claps, but will sometimes use the sign)
No (nods head or signs no)

He will also put the signs together to make sentences.  Yesterday he made up his first real spontaneous sentence.  We have shown him "want more pear" and then waited for all three signs to give him the pears and he will evenutally mimic it and do it.  Yesterday though we were in the rather loud cafeteria and I just signed "want what?" in an offhand way to ask what he wanted next for food.  He very carefully signed "eat more pears".  I don't think I've ever shown him that combination, and I didn't prompt him with the signs first - he just answered on his own.  That's another big leap.  As with verbal words, Owen understands a great deal more signs than he uses himself.


SERVICE DOG
I haven't blogged about this because I wanted to get far enough along in the process that it was likely to be a reality before I got my hopes up enough to actually write it down.  We have an incredible local organization - Saint Francis Service Dogs that trains service dogs to help people with many different disabilities and health conditions.  A while back I had read somewhere that dogs can be trained to alert when a child is having a seizure - and that some dogs after, spending a fair amount of time with the child, can even learn to anticipate a seizure. 

I began to investigate this as a possibility for warning us if Owen has a seizure at night while we are sleeping or while we've stepped out of the room.  I found that this is actually not an uncommon thing for a service dog to be trained for.  Owen's PT actually knows a child with a St. Francis dog that can tell when the boy is about to have a seizure and alerts him to lay down so that he doesn't fall.  The idea of having a dog that could sleep with Owen and wake us if he has a seizure was just something we couldn't pass up.  I also liked the idea of a companion that could be there with him through scary procedures, and they can also help balance children learning to walk. 

So, back in late May or Early June we filed an application for a service dog for Owen.  It was a 29 page application and it felt like we were trying to adopt a child.  Of course it was probably 29 pages partly because I'm a bit wordy in my writing :-)  They need to know a lot of history and really dig into the lifestyle and medical issues so that they can know whether or not you would be a good candidate - and if you are which dog might suit you best.  Part of the application process is a home visit to make certain that you have a suitable environment - including a fenced in yard - for a dog. We had our home visit in June.

After you have applied and had your home visit your name and information is brought before the screening committee to determine if they feel that you would be a good candidate for a dog.  The screening committee then passes your name with or without a recommendation to the board of directors that makes the final decision on whether or not you will be accepted as a candidate.  At the end of July we received the good news that Owen had been accepted as a candidate. 

Before I describe the rest of the process I should state that a large part of the reason that the process is so lengthy and complicated is that Saint Francis is a non-profit organization and they provide the dogs free of charge - well, there is a $200 fee for the equipment that you receive like the crate, leash, vest, etc - but it is essentially free.  They have a limited number of dogs due to the volunteer nature of their organization and a huge number of applicants.  There are many places that will guarantee you a dog in a certain amount of time, but you have to pay the $14,000 - $20,000 that it costs to train the dog out of your own pocket, which is not an option for us.  Saint Francis takes their job of training their dogs and placing them with compatible partners very seriously and most of the process is to guarantee that the partnership will work for both the person and the dog -and to place limited resources where they can help the most.

So, tonight was our orientation and first training class.  While a service dog comes to you well trained, you have to have a fair amount of training as well to be able to work effectively with the dog.  You must learn all of the commands, you must learn your individual dog and you have to keep up the dog's training because just like children they will stray off of their good manners and hard work if you don't keep up your efforts.  So they explained the rest of the process in detail to us and even let us meet some of the dogs they have in training. 

At this point we will continue our training classes one night every other month.  In the meantime we are "eligible to be matched".  This means that if a trainer feels that they have a dog that would pair well with Owen we will be called in for an interview.  Each dog that is ready to be paired is interviewed with three or four people.  During the interview you meet the dog and the dog meets you.  You discuss the dog's strengths and weaknesses and compare them to your needs.  After the interviews are done, they decide which candidate best matches the dog.  If you aren't the one chosen then you go back into the pool. If you are then you begin the intensive training with the individual dog over the course of a few weeks.  Even after you finish your training and the dog comes home there is a probationary period to make sure that the pairing is compatibile. 

This is a long process, but I definitely think it will be worth it.  Tonight we met several of their trainers and they had all kinds of suggestions for other things that the dog could help with - such as retrieving meds or the pulse ox during a seizure, opening doors when I have him in the stroller and such.  Oh, and now you know why we were in a room with a dog that was being praised tonight :-)


MEDS
When I last wrote we had just been to the neurologist at Duke and we were all excited.  Well, it hasn't been quite as smooth as we had hoped.  When we got back the blood levels it turned out that his levels were low on the Trileptal and the Lamictal, even though he's on a pretty big dose of Trileptal.  The Zonegran was at least in therapeutic range, but the others were not.  Owen must just be one of those kids that metabolizes everything really quickly.  I called the doc the morning before we got the levels to let him know that Owen's outbursts of anger had gotten so bad that he was biting through to bleeding again and that we really needed some guidance on how to get wean something off as quickly as possible.  They called back and said to up the Lamictal (the one that has been making him so angry) and then we'd see about weaning later.  I growled a lot and told them that they needed to come up with a better answer.  This was at 5:00 on the Friday before Labor Day weekend so we knew that we were on our own until the following Tuesday.  \

On Sunday Owen woke up in the best mood we had experienced in ages.  All day long he was as happy as could be, until 5:47pm when he had a nasty seizure.  Boo!  But he woke up on Monday in a good mood again and so we decided that we would try increasing his dose.  Rather predictably his mood went right downhill.  One week later - yesterday - we upped the dose of Lamictal again to get to the final dose that the doc wanted.  Owen's day is a roller coaster of really good moods and really, really angry swings. The anger tends to pass fairly quickly, but it's very intense.  Today I called and told them that we were on the final dose that he wanted, and asked what the next step was.  The doc was out today, but his nurse called to verify all of his dosages and said that they would call us back tomorrow with a plan.


SCHOOL
And finally school. Things are going well at school and we're settling into a routine.  I really do think that having the background noise has helped Owen practice picking out individual voices.  He has also been babbling more and has been more interactive.  So I think the stimulation is doing some real good.  Owen is also quite fond of the playground. 

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And in this one I swear he's saying, "I can do it Mommy, I can climb this!"

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And I have no doubt that he will someday!
 
Details on the Good News!
OK, so now I'm home I can put in a few more details.

The first appointment this morning was with Owen's audiologist.  Holly was kind enough to squeeze us in to run a diagnostic on his implant just to be 100% sure that it was still working after the MRI.  She hooked it up to the computer and found that it is just fine - so our calculated risk with leaving the magnet in worked.  We have our images, the implant is intact and we don't have to take his temperature three times a day for the next six weeks worrying about an infection.

The next step was to head over to the neurosurgeon's office and get the verdict on the Chiari.  This was the last real big step in being in the clear from his cranial vault reduction last year. We know that it has increased his mobility greatly - but we needed to be sure that we didn't aggrevate the Chiari by making his head smaller.  And the great news is that we did not!  This is definitely one of those times when it is easier to tell the story in pictures.

Here is a side view of Owen's head taken last week:

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And here it is with some useful labels on it:

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So, you can see that Owen's cerebellum pushes down below the yellow line, which would be the normal stopping point.  It's not pushed down very far, but it is father than normal.  The part that is outlined in green is the bit that is out of place.  What is really good to see is the fluid pocket - the whitish space next to the green outlined part.  This is not a fluid pocket that would signify a dreaded syrinx (read my two previous posts for details on all these terms) - it is one of the normal pockets around the outside of the skull that you see on all CT's and MRI's of the brain.  It's just there cushioning things - and these are the first things that start disappearing during a shunt failure or any other time that pressure has built up.  The presence of this fluid pocket means that there isn't a lot of pressure in the area with the Chiari - and that means we don't need surgery!!! 

This is a HUGE deal.  We have gotten used to surgeries in this house and yet this would have been devastating.  To get to the area would mean compromising the ligaments and tendons in Owen's neck - all of that hard won head control would be lost at least for a time.  It would leave part of the back of his head unprotected by his skull, at least for a time.  It would have been touchy and dangerous surgery.  It would have been another summer in the hospital.  We are VERY Thankful that Owen will not have to endure such a thing!

So we are very happy campers here in our house tonight.  I will have to get more pictures and video to show all of the amazing progress he has been making in recent weeks.  But for now I'm just going to bask in the happiness that is no surgery!
 
The MRI is Done!
Constitutional amendments have been passed with less work and effort than was required to obtain this MRI, but it is done! 

As I have blogged in the past, Owen has a Chiari malformation - where the cerebellum is pushed down out of the base of the skull.  This has always been so mild in Owen as to not cause any symptoms. After he had his surgery last fall to make his head smaller, we increased the risk that the cerebellum will push further down onto the spine causing all kinds of problems, including pockets of fluid in the spinal columns called syrinxes.  A syrinx will not show up on a CT scan so he needs an MRI.  MRI's and cochlear implants do not mix well.  Normally they remove the magnet before doing an MRI, but this requires an incision.  Incisions mean possible infections in any patient.  With a shunt in your head - a shunt that attracts bacteria like a back porch light attracts bugs on a summer night - the risk of infection is considerably higher than normal. 

Owen's cochlear implant surgeon, Dr. Buchman, did some research and found that a fair amount of testing has been done with leaving the magnet in for a 1.5 Tesla MRI with the internal magnet immobilized by hearing aid molding material. They have found that the worst that happened was to have the magnet flip or move out of its socket.  And if the magnet flips you just flip the magnet in the external piece too and everything goes back to normal.  While there was some hypothetical risk to the device, the risk for Owen of an infection from an incision was far greater. 

Dr. Buchman and his nurse B.J. Squires moved Heaven and Earth to make this happen.  I cannot thank them enough for all of the work that they did to make this happen.  They have argued with insurance companies and standard protocols and rallied every troop they could find.  They have gone above and beyond.  And we will be eternally grateful for their efforts.

Yesterday was the big day.  Dr. Buchman met us in the prep room with an audiologist and a big pile of hearing aid molding material.  They made a big block to fit over the implant.  Then they knocked him out.  I had to leave then.  It was a bit weird because I've always been able to stay with him for MRI's in the past, but the policy at UNC is that parents have to wait in another room.  I waited for just over an hour and they came to get me. 

Dr. Buchman said that despite the molding the magnet did move and ended up on its side.  He said that he just popped it back in and figured that he had a 50-50 chance that when he put it back that it was in the right direction.  So we quickly headed down to Owen and put the coil on his head.  Yippeee!!! It attached perfectly on the first try.  Then we turned the implant on to see if the speech processor recognized the implant and Woo Hoo! it also worked.  Owen was out cold at that point and we couldn't see how he reacted.  He did have a bit of a red spot over the magnet at the time.  And the good news was that we had the MRI images that we needed!

After he woke up in recovery I put the coil on and he looked around.  I said his name and he looked at me.  The red spot was already gone.  He was still groggy and just in case it was sore we took it off. 

By this morning we decided to try it for a little longer.  We let him wear the implant during meals when he wouldn't roll around on it on the floor.  He waved when I said Hi, smiled and signed for Itsy Bitsy Spider and followed other commands.  So it would appear that the implant is working just fine.  We are going to take him in on Monday to have the implant tested more fully. 

On Monday we will also meet with his neurosurgeon to go over the MRI to see if there are any problems.  I looked at the images but I really am not sure what I'd be looking for.  I looked at the brain and I'd say that the shunt seems to be working because I'm used to how those look.  But I haven't looked at the spine ones before and I'm not sure what to look for.  Owen certainly isn't showing any signs of any problems so we are hopeful that all will be well.  For now though I am just grateful that this part is over!
 
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:

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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.

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

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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. 

Seizures
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:

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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. 

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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:

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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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Happy One Year With My Cochlear Implant!
There are more things to post about the previous week's happenings, but today I'm just going to take the time to celebrate.  As of today, Owen has had his cochlear implant turned on for a full year.  It's incredible to think that a year ago he had never heard our voices, or fireworks or music or anything else.  He didn't say Mama when he was lonely, he just cried.  This past year has truly been a miracle with his hearing. 

Rather than trying to recap the whole year in words, I decided to put together a video that shows all the highlights.  Click on the picture below to see the "Best of" video for Owen's hearing.  Some of the clips you may have seen before, but there are new ones in there as well.


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I can't wait to see what the next year brings!
 
Therapy and Welcome Tessa!
About a month ago we started the process of getting Owen a helmet so that we could try some riskier moves in therapy without worrying about hurting his big noggin.  It finally came in on the 19th. It doesn't fit very well, but it will do for now until we can get another one fitted and made:

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

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

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Owen continues to work on his standing:

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And on his sitting with appropriate attitude:

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

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

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

So once again, we are thrilled with our little guy's progress!
 
Great news from the Audiologist!

I know, I know - a month at a time with no posts, and then suddenly we get several days in a row. Well, when it rains it pours!

Today Owen went to the audiologist for another hearing test and cochlear implant checkup.  The results were just awesome.  We are now 6 months post hook-up and today Owen's speech threshold was only 10 dB!  That's a very quiet whisper! 

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Above is the audiologist's report from today.  You will note the completely blank audiogram.  When Owen first got there they hooked him up to the computer where they play tones directly into his brain.  He loves this and it makes him laugh.  But then they put him in the sound booth to listen to normal sounds through the microphone and he just freaks!  I don't know why, maybe it's because everyone is staring at him, or because it's 200 degrees in there, or because the two year old in him senses that he is expected to do something on demand and he just doesn't do requests. 

Either way it was looking like a pretty big waste of a three and a half hour drive.  But then Lisa, the audiologist, started to sing "Itsy bitsy Spider" to him through the machine that lets them output their voice at a specific decibel level.  She had done it earlier in the session at a louder level and he seemed to like it.  So during a fuss she tried it again, but at a very quiet 10 dB.  He missed the beginning of the song because he was too loud, but when he stopped to take a breath he clearly heard her singing and he stopped fussing and settled down to being perfectly quiet in just a second or two.  When she got to the part where the spider goes up the spout again he put his two hands together and twisted his wrists to make the spider - right on cue! 

We all kind of sat there and stared at each other as if to say, did he really do that?  But it was just as clear as day and Owen absolutely loves The Itsy Bitsy Spider and makes that sign all the time when we sing it at home.  If I ask him, "Do you want to sing a song?" he generally responds by making the sign of the spider. 

For a reference on what 10 dB is, I'll post the chart of familiar sounds again:

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She was singing very quietly and yet he not only acknowledged that there was a sound, but he could identify it properly as his favorite song and knew exactly when to make the spider sign.  I think that officially means that he is hearing very well!  You can see on the report that she writes "Did Itsy bitsy spider down to 10 dB".  And then she circled SAT (speech awareness threshold) and under aided sound field (meaning with his implant turned on) she wrote 10.  At his last exam he only tested down to 35 dB. It was the same mapping, but he just needed more time to get used to hearing I guess.  We have definitely noticed at home that he hears very quiet noises and responds to them, but it's nice to have it confirmed during a controlled test.  And 10 dB is the lowest that they can test down to.  In my reading I have found that "normal" hearing is considered to be anyone who can hear down to 15 dB.  Many cochlear implant programs say they consider a success to be hearing down to at least 25 dB, which allows hearing at normal conversational tones (the red "speech banana" in the picture above).  And Owen can hear down to 10 dB!  We've made it!

Owen also now recognizes quite a few verbal commands such as "Up", "No", "No teeth" (meaning please stop gritting your teeth before Mommy goes insane), "Give that to me", "Do you want to sing a song?", "All done", "Eat","Sit up" and probably a few more that I'm not thinking of at the moment.  I asked the audiologist how Owen is doing compared to other children who are 6 months post hook-up and she said that he is doing very well.  She actually said that there are many children that aren't doing this well at only 6 months. For once, Owen may be ahead of the curve! 

You'll also see the letters IT-MAIS toward the bottom of the report, with an 80% next to it.  This stands for Infant-Toddler Meaningful Auditory Integration Scale.  It's basically a set of questions that they asks the parents about what a child appears to be able to hear and not hear - because the little ones don't do the best at testing.  You can read more about this test here.  Before the implant his score was 5%, and I'm not sure how he even got that high to be honest. Today his score was 80% - an amazing improvement in just six months. 

So we are very happy.  If you look at yesterday's post and watch him playing that piano, you can start to understand how much this has meant to us.  He can hear us, he can understand us, and we can finally share our love of music with him.  Music is huge in my family - I play the flute/piccolo/recorder/penny whistle, my brother plays piano, bass clarinet, guitar and anything else he can get his hands on, my Mom plays piano, my grandmother was an excellent violinist, and even those that don't play an instrument all love to listen to music.  My daughter Sammy loves any type of music.  Not being able to share this with Owen was a big hole in our ability to relate to him. Seeing him at that piano and watching his face light up when you sing to him is just priceless in so many ways.  Being able to hear has changed every aspect of our interactions with Owen and we couldn't be happier that it has worked out this well.

Have a great night!

 
Owen Plays the Piano

I already posted this on the family blog, so my apologies to anyone who sees this twice.  I have thought of consolidating down to one blog, but I figure that there are a lot of people who might be interested in how Owen is doing with his hydrocephalus, but do not in any way care about watching his sister learn how to ride a bike.  I also like to page through the family blog just for fun, and I'd rather not see the stories of the hospitalizations and such as I try to enjoy a wander down memory lane.  So without further ado, here is what Owen did today:

After dinner this evening Owen treated us to a serenade on his absolute favorite toy: his little piano.  He just can't get enough of this toy, he plays with it endlessly.  Below is a little video that is just packed full of exciting things. There are all kinds of accomplishments in this one and a half minute video:

  • The first thing to notice is that in the very beginning Owen waves "Hi" to me when he sees me sit down with the camera.  It looks a little like he's milking a cow, but that is his wave.  I have been working on this with him for a while now, and now he thinks that it is required every time he sees me, it's just adorable. 
  • Next you will see Daddy get his attention to play the piano - not by grabbing his hand as we would have had to have done in days past, but by playing a sound on the piano.  That is an amazing thing in and of itself.  The sheer fact that he likes the toy is a testament to how well he is hearing.  He never used to be interested in toys that made sound, now he loves them.
  • The fact that Owen can push the keys hard enough to make a sound is an accomplishment as well.  Since Owen has not crawled and therefore spent huge amounts of time bearing weight on his hands, his hand strength is a bit lacking.  When he first tried to play with this toy a few months ago he couldn't push the keys down hard enough to make a sound, now he merrily bangs away.
  • You can't miss the fact that he is sitting up on his own for the entire concert (which was actually much longer than this video clip).  He doesn't sit back on Daddy until the very end.
  • After the little transition in the video you will see just how much more interactive he has become.  He finishes his song and then hits his hands on his lap - which is him signing "All done".  Then he sees me and waves "hi" and then for some unknown reason he signs "more" (putting his two hands together with the fingers touching).  He did go back and play at the piano again after that, so maybe he was saying that he was just resting and was planning on doing more.  Either way, it was three bits of communication in short order. We used to beg for a single sign at mealtime!

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All in all, a very good day!

This week is going to be very busy.  Tomorrow we will go to the audiologist in North Carolina for a hearing test and possible new mapping on the implant.  He obviously hears very well, so maybe they will just do a check-up and leave it as-is.  On Tuesday we are having a "T" party where his PT (physical therapist), OT (occupational therapist) and ST (speech therapist) will all be here at one time for a brainstorming session.  On Wednesday we have to be at the hospital bright and early for a lower GI test for Owen.  Thursday is Owen in school in the morning, then I drive home and drop him off and go back to Sammy's class to teach ASL.  Friday is speech therapy in Greensboro, NC.   Should be an interesting week!

 
Happy New Year!

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Have a Happy Thanksgiving!

 
Our Story - Blog Style

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

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

Cochlear Implant

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

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

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

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

familiarsounds.jpg

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

Audiogram-GraphOnly-2008-07-14.jpg

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

Audiogram-GraphOnly-2008-10-17.jpg

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

Audiogram-2008-10-17.jpg

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

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

Visits

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

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

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

10-09-2008-0005-Dr-K.jpg

 

Physical Therapy

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

09-29-2008-0018-headsup.jpg

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

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

09-29-2008-0023-sitting.jpg

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

10-01-2008-0003-Standing.jpg

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

10-01-2008-0007-bouncer.jpg

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

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

10-12-2007-0008-walker.jpg

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

09-23-2008-0003-walker.jpg

 

Birthday Party

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

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

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09-24-2008-0021-bday.jpg

09-24-2008-0023-peekaboo.jpg

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

 

 
 
 



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