Ok, not really new us.
Same old us; but a new year nonetheless!
So, what’s happening in the land of Hillegass, you ask? It’s snowy, cold, and completely uneventful –
for the time being anyhow.
Since I haven’t updated you on Gabriel’s last surgery
(sorry), I’ll start with how that went.
It went…fine. Just fine.
His soft palate repair was successful. It seems to be holding well and hopefully
will continue. As a result, we have seen
less and less food coming out of his nose – which is great! Not great, however, is that the hole in the
front of his palate remains.
Dr. S did take a good look at it and determined that it’s just too big to do anything with right
now. He thought he could possibly
finagle a fix during the last surgery, but he had no confidence the fix would
hold and then we’d likely be burning bridges we are going to need to cross
further down the road. He wants to be
able to do some serious research before attempting to close the hole, but did
warn us that (gasp!!!!) some kids just have to live with a hole in their
palate!!!!!
NOOOOOOOOOOOOOO!!!!!!!!!!!!!!!!!!
Yep, that was the reaction in my head. Living with a hole in Gabriel’s palate means
1) he will always require some device to try to plug said hole, 2) he will
always have food coming out of his nose, 3) he will always have chronic sinus
infections, and 4) he will likely never be able to speak in a fashion anyone
will be able to understand.
Yeah, that 4th one is a deal breaker. It’s bad enough that he has been doing speech
therapy for 6 months now with little to no improvement, but you mean this might
be forever?!?!? I don’t even know where
to begin with that.
Gabriel is extremely smart.
I know, everyone says that about their kid, but seriously, he is. I worry constantly that if he can’t speak and
has to rely on sign language as his primary communication, then what happens
when he goes to school? Can he be with
other kids his age? Can he even go to
public school? Last I knew the average
teacher didn’t know ASL (American Sign Language), so where does that leave him?
Currently, Gabriel knows upwards of 50 signs. Believe me - even though that’s a lot for a 2
year old, it is not enough to keep him from screaming at you when you don’t
understand what he wants! His speech therapist
has now decided to include sign language in with her sessions. She doesn’t want him to rely on it and not
try to keep working on his speech, but she also knows the reality we face,
which is, we need to be able to understand each other. Funny thing is I always thought I’d be
learning Spanish with my kids – not ASL.
At any rate everyone he comes in contact with is supposed to be asking
him to sign and try to say everything.
We all have a very long road ahead of us.
One thing I’ve been thinking about is wondering what I tell
people in public when they continuously try to get him to talk to them. This happens all the time. I don’t want to say that he can’t talk –
because he can. He just can’t be
understood. At the same time, I don’t
want them to think there is something ‘wrong’ with him – because there’s
not. I just don’t know.
In the meantime, Gabriel will be taking part in a Children’s
Craniofacial Clinic on March 12th in Fort Wayne. Many children do this from birth, but it will
be Gabriel’s first time participating.
Basically, he will sit in a room and over several hours, surgeons,
orthodontists, pediatric dentists, speech therapists, dieticians, and other
various folks will file into his room to check him out. He’s going to hate it. However, the end result is that they will all
then get together and discuss what they think the next steps for him should
be. Until then, we wait. We hope the soft palate continues to hold, we
teach and learn as much ASL as possible, and we try not to think about things
too seriously. I have a very strong
feeling that if I stop to think about where we’ve been, where we’re going, and
all the unknowns, I might start to cry and never stop. I can’t be that person for my boys – and I
won’t.
As you know, we recently took the boys to Disney for Thanksgiving, so I have included some of my favorite pics from that. I hope you enjoy them! Until next time…
