The Amazing Owen
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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.

Seizures
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. 

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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.

Eating
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. 

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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:

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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!
 
A Quiet Night

Last night was a pretty quiet one.  Owen slept on and off all night long.  He started to run a fever in the late evening so we've been giving him some Motrin to stay on top of that.  A temperature is expected within the first few days after any surgery that requires general anesthesia and isn't an issue. 

Owen is definitely sore, but he's needing less and less morphine now.  He went from 1:00am to 10:00am without any morphine, but they gave him some at 10:00 because they were taking him down for a CT scan and moving still causes him quite a bit of pain.  The scan went fine.  Dr. Fearon (the plastic surgeon) said that it looked good and cleared him to go to the regular floor.  Dr. Swift (neurosurgeon) just called and said that he agreed that the CT looked awesome. 

Owens numbers all look good.  He's keeping his hemoglobin up on his own so it doesn't look like he'll need another transfusion.  They took his cather out this morning and he's very happy about that.  They took out his arterial line (an IV that is hooked into an artery rather than into a vein.  It is used to continuously monitor blood pressure.) in anticipation of being released from the PICU.  Owen ate a good breakfast and has kept it down.  Last night he had some juice and then thought better of it and returned it back from whence it came.  He seems to be over that now.  At the moment he is resting comfortably.

Right now he only wants to lay on one side.  They have told us that we will have to start being meanies and forcing him to turn over so that his head doesn't end up oddly shaped.

We have had a number of people ask "where are the bandages?".  They don't use bandages here.  They believe that covering up wounds just traps bacteria and promotes infection.  Since they have an incredibly low infection rate here I am inclined to accept their word on that.  They just come along every few hours with some peroxide and Bacitracin to put on the stitches.  They also don't cut any hair when they do the surgery, so he isn't missing a big strip down the middle.  

I'll close with a couple of pictures that I took this morning.  The swelling is starting to increase (as is expected) so his head is looking a bit bigger and his left eye isn't opening quite as much as the left.  He's still looking great for what he has been through and the nurse tells us that he has less swelling than a lot of kids do at this point. 

Here is Owen signing for breakfast, or trying to with his bandages:

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And some current views of his head:

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But in the end,  he's still the same affectionate little boy:

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Owen is Awake!
Well more or less awake - awake but quite drunk would be the best description. He has signed for food and drank some juice and silk. He has played with some toys and even gave us a wobbly smile. His coordination is still off and he's very sleepy, but we are miles ahead of where we were yesterday. And I know he's OK because he snuggled up to me and reached up and stroked my face. That is always my sign after surgery or an incident that tells me Owen is back. He should be getting his EEG soon. If he continues to progress they will let him go home tonight or tomorrow morning
 
Fun with OT And a New Word!
Owen has really come to love OT in recent weeks.  I think it's mostly due to the introduction of the platform swing. He loves this thing. 

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

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He also really enjoyed sitting on Rody:

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


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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!

 
 
 



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