Happy New Year Everyone! Well as I mentioned in the quickie note I made on the
home page, we had a change of venue for Owen's hearing care. We've never gotten
anything but great care at Duke, but we were advised by one of Owen's doctors that
the hearing program at UNC Chapel Hill is better. They apparently have much better
follow up care for speech therapy and such, so we decided to go there instead.
We went down to meet Dr. Roush in audiology and Dr. Buchman in the cochlear implant
program on January 14th. On the 15th we had another ABR scheduled that would test the
full range of sound. I'm really glad that we went there. They have a lot of experience
there with hearing problems and hydrocephalus. Dr. Buchman is actually doing a study
right now on cochlear implants and programmable shunts. How much more applicable could
that be?
As it turns out it isn't particularly safe to have a cochlear implant with a
programmable shunt. Cochlear implants use magnets to hold the external part to
the head and also for communication between the internal and external parts.
Those magnets are strong enough to reprogram a programmable shunt and since a child
can remove the external piece on their own and play with it, it just seems too
dangerous to do. Codman, the manufacturer of Owen's shunt, has also done testing in
this area and they have also shown that the external piece of the three models of
implants that they tested do in fact have strong enough magnets to reprogram a shunt.
Removing a perfectly functioning shunt for any reason is something that we're probably
not willing to do. If his shunt fails we might consider putting in a non-programmable
since his pressure has been stable, but even that wouldn't be an easy decision.
(****Note: We have since had updated information on the possibility of
programmable shunts and cochlear implants coexisting that you can read about
here.****)
So, that takes us back to the results of the second ABR. Owen's brain did not
produce any response to any of the sounds that were played to him. However, while
we were there Owen was a big ham and did quite a lot of his babbling. Dr. Roush said
that it is very difficult to believe that he is completely deaf, as the ABR would lead
us to believe, and is still able to make the range of sounds that he does. While deaf
children do babble, by this age they are generally monotone in their sounds and stick
to the vowels. Owen has a number of consonants and he makes lots and lots of different
tones that are quite subtle. Dr. Roush also said that she has seen hydrocephalus
skew ABR results and has actually seen a change in shunt pressure produce different
results in ABR's.
An ABR targets a specific area of the brain that should respond when a sound is played.
Children with hydrocephalus often have brains that are wired a bit differently. If you
look at Owen's CT scans, you would say that he should be having vision problems because
his occipital lobe did not expand. His vision is fine, he has clearly re-wired those
functions somewhere else. So if there were such a thing as a VBR (visual brainstem response)
test, would it show that Owen couldn't see because the responses aren't where they are
expected to be? So it is possible that his brain is responding, but we just can't see
it because he has re-wired it somewhere else.
They tried to do some of the traditional testing where they try to get him to turn his
head toward a sound. Unfortunately they did this right when he wanted a nap and he
was very uncooperative. They also did it with him sitting in my lap, which is not
a position that he can maintain with ease at this point. He didn't produce anything
definitive, even in the part where they try to train him to look towards a light with
a vibration. He just wasn't in the mood.
So, given the fact that he can't really
have a cochlear implant and given that his vocalizations would seem to indicate that
he can hear something, we have decided to try a set of hearing aids to see
if that produces any results. The hearing aids can be programmed for lots of different
settings, so Dr. Roush can fiddle with them quite a bit to see what might help. They
were able to do the molds for them while we were there (Thank You!!) and we are
going down on February 11th to give them a try.
In other news Owen had an eye appointment last Friday. His eyes still cross quite
a bit, but he can look straight forward when he wants to. Since he is able to control
it, the doc doesn't want to do the traditional muscle surgery because we might
end up with his eyes pointing out to the sides instead of crossing. So Owen is going to
get a Botox treatment. Now I know he's cute, but I didn't think he was ready to go
all Hollywood on us! The doc told us that Botox was originally used in eye treatments to
weaken muscles temporarily. The idea I guess is to weaken the muscles that are currently
pulling the eyes in so that the other muscles can gain strength. The effects of Botox
are temporary, so they are hoping that when it wears off the other muscles will be strong
enough to hold the eyes in the right place. Unfortunately it means general anethesia again
so he doesn't move while they give him the shot near the eye, but at least there
is something fairly non-invasive that they can do for him.
Owen has really done amazing things with his physical progress lately. Just before
Christmas he started rolling over on his stomach and trying to crawl. He can't quite
get his head up yet, but he pushes it along on the floor and he can go quite far.
He has also started log rolling across the carpet and he can really get moving doing that.
He can now sit for almost a minute at a time with just minimal support around his rib cage.
When he is in his stander he now spends most of the time with his head away from the
supports and he can even look down at what he is doing and then bring his head back
up. I'll try to get some video up soon with him doing these things. I can't believe
he's not quite 16 months old and he is already able to do so much!
The pictures below were taken just after Owen's first haircut on January 8, 2008.
He is positively handsome, at least when he isn't blowing raspberries.
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