Well, I managed to be so slow in getting the website update up that it's time to
write a new entry without having put the last one up yet. On November 6th we
went back down to Duke for a checkup. He had a CT scan in the morning and then we
met with Dr. Grant afterward. It was all great news and smiles. His brain has
continued to expand, so much so that the subdural (a pocket of fluid that is between
the brain and the skull, rather than inside the ventricals) that we had worried about
is just about completely gone. We couldn't have been happier with that news.
Our scan was scheduled for early Tuesday morning, so we drove down on Monday to avoid
getting up really early and trying to make it there on the same day. It also allowed
us to have a day to do our visiting where we didn't also have to make it to any
appointments. We had a nice long visit with Dr. Kurtzberg (the cord blood doctor). It's
always great to see her. She had a toy for Owen and we actually had a few minutes this
time to really sit down and catch up. Of course Owen marked the occasion by losing his
lunch all over the place (but Mommy and Daddy, you didn't burp me enough!) but it
was a good visit anyway.
While we were there we also met up with another family that was having a cord blood
infusion for their little girl with hydrocephalus. It was wonderful to meet them
and they have an adorable little girl. She is the third baby to have this procedure
done for hydrocephalus, you can see her on the cord blood page. In September Owen and I made a trip down to
Duke to meet another little boy who was the second one to have a cord blood transfusion for
hydrocephalus and his picture is on the cord blood page too.
We have had some questions about Owen's hearing for a while now.
He babbles very well, but he will not turn his head toward a sound or startle at loud sounds.
Last week we took him in for a hearing test called an Otoacoustic Emissions (OAE) test,
which you can read about
here.
He failed this test completely. The doctor said there are now three possibilities:
1) Owen is one of the very small percentage of people that can hear just fine but
whose ears do not produce the echoes that the OAE listens for.
2) Owen has a partial hearing loss in the somewhat limited range that the
OAE tests for.
3) Owen is completely deaf.
Owen was scheduled to have an Auditory Brainstem Response (ABR) evaluation done
this morning (Monday November 26th) but he has a temperature of 102.4 right now
so they canceled the test for him. He has the winter ick of some sort.
It has been rescheduled to Monday December 3rd.
This test is also described on the link shown above, but it
basically measures the brain's repsonse to sound. The child is sedated and then while
they are completely asleep electrodes are attached to their head and sounds are played.
The electrodes measure the brain's response (if any) to the sound. They can test
the full range of tones and volumes. We will finally have a definitive answer to the
question of whether or not he can hear. It hasn't been easy to wait two weeks between
him failing the first test and getting a slot at the hospital for the second test. I
promise I will post the results of the hearing test soon, and not wait another three
months to update the website.
We are also trying to get Owen in to see a developmental pediatrician. While he
seems to have appropriate coordination/curiosity with his toys, he still doesn't do
some of the things that you would expect at his age. He doesn't clap or wave or
do any of the signs that we have been trying to teach him. He does hold his own bottle
and will pick up food and feed himself from his tray though. So it's hard to know
exactly where he is developmentally. It has taken some real effort to teach him
certain things that normal babies just know. When he finally gained enough
strength to sit up in his chair
and put toys in front of him on his tray he would just sit and stare at them, if he
even saw them. He had never been able to look down at all because he really never
sat up without a huge struggle. If he was sitting up then looking down meant that
he would fall forward and so he didn't do it out of sheer self preservation. It took
quite a few days/weeks of taking a toy and holding it up in front of him and then
slowly moving it down to the tray to get him to follow it and look down at the items
on the tray. Then I would have to take his hand and move it on to a toy so that he
got the idea that he could reach out and touch it himself. To see him now you would
never know that he ever had a problem. He reaches right out and grabs anything that comes
within his reach and plays happily with the toys on his tray. I am hoping that some
of his delays with other things are just like that, things that he just didn't learn
because of the physical limitations imposed on him because of his inability to sit
up and see the world like a normal baby.
No matter what though, he is a wonderfully happy baby and we are still amazed that
he can do as much as he can.
I haven't taken any new pictures in a few weeks, I had planned to take a new
one today and put it up with his hearing test results, but neither of those
things has worked out. I'll take a new one this week and put it up with the
results of his hearing test next Monday.
Progress - December 6, 2007
I know everyone is waiting for the results of Owen's hearing test, so I'm doing a quick
update. Unfortunately we got the news that we were pretty much expecting. The
doctors have classified Owen's hearing loss as "profound to severe". When I asked if
that meant that he could hear anything at all they said "not that we can detect with our
tests." We have gone as far as we can with the local audiologists now. The audiologist
here has been incredibly nice and incredibly helpful, but he has told us that there
are no local facilities for doing the testing to determine if he is a candidate for
a cochlear implant. So it's back down to Duke for this new issue.
I asked the doc if they could tell if it was due to brain damage or if it was
due to a problem in the ear. He said that since the ABR produced absolutely no
response that it was most likely a problem in the ear. Apparently even if there
is severe brain damage, the ABR will produce a response in the brain if the ear
hardware is intact. And since it appears to be a problem with the ear hardware we
are still in the running for a possible cochlear implant. The next set of tests will
tell us if he has any auditory nerves that are still intact and could receive the
signal from an implant.
Of course even that isn't straightforward for Owen. Owen has a programmable shunt
and the reprogramming is done using a magnet. Well cochlear implants work using
magnetic induction for communication between the external and internal components.
So now Dr. Grant is researching to see if the magnetic fields from a cochlear implant
are large enough to affect the shunt. We know that he can't really have a cochlear
implant on the same side of his head as the shunt for fear of cross-contamination, but
will the distance between the shunt and the implant be enough if they are on opposite
sides of the head?
And now I will admit that there is some guilt here that Mommy is dealing with. Owen
had an OAE done when he was about 6 months old. The technician was an idiot and it
took her almost two hours to set up the computer for the test - something that should
have taken 5 minutes tops. When she finally got it set up she ran the test once
and declared that his hearing was fine. We did question her as to how confident she
was in the result given the difficulty she had with setting up the test and she
assured us that everything was fine. Well clearly I should have had him retested
a long time ago and not waited 8 months. There were a number of signs that appeared to
point to him being able to hear - such as very complex vocalizations that do not
resemble those typical of deaf babies. And with a child that young it is really hard
to tell, especially given that the normal response of turning toward sound was something
that he was physically incapable of for so long because of his head size.
He also very clearly says da da and ma ma. I think it was when he started saying na na na
for no that we really said that something just had to be wrong. His usage of na na na
was contextually correct for no, but the pronunciation was something you might expect if
he was just trying to mimic your mouth position without being able to hear the actual
sound. So, at least we know now.
In yet another one of those odd coincidences in our lives, it turns out that I started
taking sign language courses years ago just to give me something to do and because
I thought it was an interesting language. There is a large deaf community in the local
area because we are the nearest large population area to the Virginia School for the
Deaf and Blind, and so there are lots of programs here to teach sign language. I have
taken 4 informal classes through the Parks and Recreation department and I finished up
one formal class at the local community college when I was pregnant with Owen. So at least
I have a bit of a head start on ASL and don't have to start from scratch.
I had taught quite a few signs to his sister throughout her life so she also is "used to"
the idea of signing and she has already started signing with Owen.
I have tried to teach signs to Owen from the beginning without any real success. I don't
know if it is because he has a learning delay or if it is because we haven't been
anywhere near as consistent with it as we were with our daughter since we have had
to concentrate so much on his physical delays. He also doesn't wave or clap so we
have some concerns about that. Now that we know that he can't hear, we are making certain
that we have his visual attention before we show him signs and we are using them for
everything that I know rather than just one or two things. We're hoping that some
immersion will help kick-start the process.
Still though it doesn't change how we feel about Owen. He is such a wonderful happy
baby that is curious about everything and is very affectionate. This is just another
"bump in the road". The next month or so will be interesting as we see how this
all unfolds. And now I will close with the promised pictures of Owen taken on
December 4, 2007.
Legal Disclaimer: While every effort has been made to make certain that the information contained in this website is accurate, it must be remembered that the content is managed by a parent, not by a doctor. Information contained here is for general support purposes only and is no substitute for the care of a physician.
