WOW!!! WHAT A MONTH!!!!
Can you tell that we have had a lot of excitement here with Owen?
I want to begin at the beginning but I just can't, so we'll start
with this week and work our way backwards so that you can
get to the video. Starting about a
week ago I thought I saw Owen making the sign for "eat". I've shown him
this sign at almost every meal since he started eating solids at six months old,
sometimes more than 20 times at a feeding. He
had never done anything that I could remotely consider an actual
repetition of this sign, or any of the other signs that
I had been using. I had taught my daughter, whose hearing
is normal, to sign and by 12 months old she could sign eat
and cracker and drink and cat and many other things. But
at 17 and a half months Owen had never made any attempts at
all to sign. So when he started putting his hand to his mouth
a little less than a week ago
I started feeding him Gerber Snack stars each time I thought I saw the
sign for eat. Within a few days it seemed
like he was really "getting it". By the day before yesterday there
was no question, he had it. Today we were confident enough that
we tried video taping it and we caught it all on disc.
To add to the excitement of the video you will also see Owen drinking from
a straw. We had been trying for a long time to get him to do this
because he can't drink from a cup while sitting in his blue chair since
he can't tilt his head backward. Owen's occupational therapist gave us
this great little helper which is a honey bear with a tube in it. You
can push the liquid up to help them get the idea that you can get a drink
from this gizmo and walla, he learned it.
The learning process for the straw was amazing as well. We've had trouble
in the past with teaching Owen because when you try to reward him by
getting all excited and waving your hands and such, he just didn't get it.
He didn't seek the reward, so he didn't repeat the behaviour just to
get the reward, and therefore he didn't learn. This time though, when
he would succeed in getting some liquid from the straw, we would start
waving our hands and he would start joining in and waving his hands
wildly (Owen is deaf and cannot hear you clap, so we make big hand
gestures instead). After he had been working for a while and we
had gone through the drink a little bit/get big hand waving cycle a
dozen times, the adults started to talk about the schedule for next week
and didn't do the hand waving after he drank. He looked around for
a second to see if anyone was paying attention and then started to squeal and
wave his hands until we joined in. It was so much fun and it has been
so much easier to try and teach him things when he joins in.
Life since the second cord blood infusion has been a whirlwind. He has
been learning new things left and right and we're just so excited.
Yes, we know that we can't scientifically prove that it was the
cord blood, but to start signing after soooo many failed attempts for
so long really does have to make you seriously consider the possibility
that it has helped.
So without further ado, here is the video of Owen's latest achievements
(and for the uninitiated, the "eat" sign is simply putting your hand to
your mouth):
Owen's New Achievements
So the other news, as you may have gathered from above, is that during
Owen's last set of hearing tests last week the audiologist said that
she does not believe that Owen has any hearing left at all. It was
odd because after he got the hearing aids he started saying "Mama" and
"Dada" and "No" again. So we thought that he was in fact hearing something.
But during the testing they played sounds that were, as Dr. Buchman put it,
as loud as standing next to a jet engine at full throttle and Owen didn't even
blink. Of course he also has had his cord blood since he got the hearing
aids and his greatly increased interactivity might also account for the
words. He has not gained any other words and those really are just elemental
sounds that can easily be reinforced by rewards.
So Owen has now officially been transferred to the cochlear implant
program. Dr. Buchman, who is the cochlear implant surgeon,
has been at every one of Owen's audiology appointments though, so it is
nice that there will still be one familiar face as we move to the new group.
The next steps are a speech and language evaluation that is scheduled for
March 31st, and an MRI that we are currently trying to get scheduled.
The MRI is the last physical hurdle we have to clear for getting the
cochlear implant as it will determine whether or not Owen has enough intact
nerve endings for an implant to work. We have also found out that
Owen will be able to keep his existing shunt even with an implant. Further
testing by Dr. Buchman's group has shown several models of cochlear implants
that are not capable of reprogramming his shunt. This makes the decision
to move forward much easier.
So it has been a wonderful few weeks here and we couldn't be happier.
I will close with two pictures that I took of Owen and his sister today.
His sister just got that gymnastics leotard yesterday
from a friend and she has insisted on wearing it all day :-)
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