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.

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

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

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

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

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

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


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

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

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

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

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

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

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

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


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


Owen Turns Four - And Other Things

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


to here:


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

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


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.

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)
Drink (uses milk for all drinks)
All Done
Waves Hi and Bye
Fan (he really likes ceiling fans and has a sign to ask to turn it on)
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.

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 :-)

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.

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. 




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


And I have no doubt that he will someday!
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'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. 



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:


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:


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


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


He also really enjoyed sitting on Rody:



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

Therapy of All Kinds

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

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

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


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


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



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


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


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


And we have another little video of Owen standing up:


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


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


This is Owen standing at the railing looking out at Niagara Falls.  Owen did amazingly well on his 10 day trip from VA to Niagara Falls, Canada, to the Adirondacks in NY, to Mystic Seaport in CT and back home again.  He handled the traveling with no problem and we had a great time visiting family, friends and interesting places. 
Catching Up
It has been a while since my last update - we have been very busy lately.  Therefore we have a few things to catch up on.

Firstly, we got back the results from the biopsies that were done during all of the GI tests that I posted about a few weeks ago. All of the biopsies were normal.  There are no inflammations due to damage, no Hirschsprung's, all of the nerve cells are where they belong and there was no inflammation due to allergies.  So why does he have such bad constipation and reflux?  No clue.

So we took him down to Duke to let them have a go at figuring it out.  We didn't really find out anything new there.  That doctor bascially said that as long as the biopsies are clean, then it doesn't really matter what the cause for the constipation is - the treatment will be the same.  We could go through lots of painful and expensive testing to see if it is because of slow motility or muscles that don't quite fire in the right order or who knows what, but in the end all of those things just require you to give them a lot of laxatives.  So I guess that's what we'll do. 

He also felt that it was probably extreme to consider a Nissen surgery (where they wrap part of the stomach around the esophagus so that nothing can come back up) for the reflux since no damage is being done by the reflux. I am not certain that I buy the idea that it's not a problem to be reliving your meals over and over again all the time, but since we've now had two different doctors tell us that we should not do the surgery yet, I guess we'll take their advice for a while anyway.

I am frustrated that they couldn't come up with something more definitive, but the only thing left to do now would be to drive Owen out to the Cleveland Clinic which is the World's Best GI Clinic.  That would be a very long drive and we would have to really think about whether or not there would be enough benefit to warrant putting Owen through all those tests again.  We're going to give it some time to see how the new regimen that we have recently started with the Miralax works for the constipation.  If we can keep it under control then we will probably leave it at that.  If it continues to be a huge problem then we'll be hanging out in Ohio for a bit (Kristen would be happy about that anyway, that's Cayman's Mommy and she lives in Ohio).

In other better news Owen continues to make lots of progress in his therapy.  Since we have started doing feeding therapy every week we have seen a big difference there.  When we started he couldn't deal with a piece of food that was too big to fit in his mouth - instead of biting a piece off he would just try to cram it all in and then spit out the whole thing.  Now he will bite off a piece and chew it.  We also know that some of his constipation was due to the fact that he wasn't chewing his food well enough.  He is now happily crunching away on his food and we are just working on stamina. 

The "O Ladder" as my Dad calls the creation in my last post is really working well with Owen.  I don't have any pictures because my camera has died and I'm saving up for a new one.  I have an old one that I use to catch a few pictures here and there, but the battery only lasts for about 15 minutes so I have to really plan ahead to use it.  Anyway, the ladder has really given him a way to work up to a standing position and to easily steady himself. 

The other day I brought in a scooter that used to belong to Owen's sister.  It has been in storage for a few years and on a whim I brought it in.  It looks like this:


I tried to sit Owen on the seat and he didn't seem to want to sit down.  At first I thought it was a balance thing, but then I realized that he was trying to stand up.  He had put his hands on the hand grips and stood right up.  He then proceeded to walk halfway across the room while holding onto the handlebars!!  I was steadying him so that he didn't fall off to the side, but he just took right off!  I certainly didn't expect that!  So next I'm going to rig up one of Sammy's old walk-behind toys for him to hold on to and see what he does.

Owen has also started doing a lot more at school.  He only goes one morning a week, but many times he would just kind of sit and watch the other kids and get cranky if you tried to get him to work with any of the jobs in the classroom (it's a Montessori classroom).  The last few weeks have been much more productive however.  This week he was all over the classroom (I bring his walker) and he worked hard on the wood cylinders that you pull out of a block, on pulling pieces out of a puzzle, at talking to the fish in the fishtank, and he particularly liked the big sponge with all of the soap suds that they can squeeze.  He even made an attempt to play with another child for the first time and while a little girl was scrubbing a shelf he came over and rubbed his hands in the soap bubbles she was making. 

Finally today we went down for speech therapy in Greensboro.  This was probably our best session yet.  Owen has really started to vocalize a lot more.  The only thing that really sounds like a word is still Mom, but he gave a try at quite a few today.  When Emily (the speech therapist) brought out the duck and said "Quack Quack", Owen said "a" "a".  I've been working on saying "Uh oh!" whenever he drops something. He dropped a toy during today's session and he said "uh uh".  He also said "ah" several times with the airplane - each toy has a song that emphasizes a sound and the airplane's sound is "ah".  Owen clearly had a lot of fun at therapy today and participated much more than he has in the past.  He has also graduated to sitting up in the big boy booster seat at the table for speech therapy, rather than sitting with Mommy on the floor.  I think it has helped to have him more at eye level and for him to know that he can't just lay down and stop working. 

So it has been an exciting few weeks.  And now it's time for this Mommy to head to bed.  Good night!
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! 


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:


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!


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