I’ve had several people request that I update my blog
lately. It’s embarrassing that it’s
already been over a year again since the last update. I thought about shutting it down. Thought about it a lot, actually. But it’s not like things haven’t been
happening in the past year. Plenty has
happened. I’ll try to keep it brief
though for those 3 or 4 of you who asked for an update.
Let’s see…last November we took Gabriel back to St. Vincent’s
for his 6 month check on his back. After
wearing a brace for 16 hours a day for 6 months, his back was miraculously
straight! I say miraculously because
that was not supposed to happen.
Juvenile scoliosis does not get ‘fixed’ with a brace. The brace is only supposed to keep it from
getting worse. Our doctor was shocked
and had no real answers for this turnaround.
His only theory was that perhaps instead of juvenile scoliosis, which
can’t get better, it was infantile scoliosis, which can. I wanted to shout this miracle from the
rooftops, but something stopped me from saying anything at all.
First of all, if it was infantile scoliosis, there was no
way to explain how it got so much worse in six months’ time before the brace.
Secondly, things with Gabriel rarely ever get better. So there’s that.
We went back in May for his 6 month check again, and what do
you know? The curve is back. It’s only about 10 degrees, so not as bad as it
was before and not bad enough to require a brace again, but the theory of
infantile scoliosis was officially blown. So now we wait until this November to
go back again for another x-ray. I look at his back on a regular basis and don’t
see his spine curving any more, but I am certainly not a doctor and I am
certainly not getting my hopes up.
He continues to improve with his gross motor skills – mostly
thanks to the physical therapy he received in school. He can peddle a tricycle,
jump about an inch off the ground with both feet, and run. It’s still not a very fast run, but after 5
years of therapy, it’s actually a run. I’m not sure he’ll ever be able to skip
or jump great heights, but we’ll take what we’ve got for now and just enjoy
watching him run around.
In regards to his mouth – we went to his cleft clinic in
March. All of his doctors, save one, pretty much determined there is just
nothing else they can do to improve his speech.
After 5 years of speech therapy and thousands of dollars, his speech is
still unintelligible to those who don’t live with him. And sometimes unintelligible to those who do.
The one doctor who didn’t necessarily agree was Dr. W. His belief is since Gabriel has no arch in
his palate, there is no room in his mouth for his tongue to move around and
help make the sounds he’s been unable to make (which is virtually every letter
except N and his vowels).
In April Dr. W put in an expander to try and widen Gabriel’s
upper jaw to make room for his tongue.
The good news is that there has been a slight improvement in his speech,
so the expander appears to be working. The bad news is that the hole in his palate
has only gotten bigger, which will make it even harder to fix in the future –
possibly resulting in it being there for life.
Additionally, the hole is open now instead of plugged, so we have a
really good time digging food out of it every night and hoping he doesn’t ever
sneeze because the mess is unlike anything you’ve ever seen!
I don’t know what will happen when the expander comes
out. I guess we’ll head back to the
cleft clinic to see if anyone has any other ideas. Dr. S is super resistant to working on
Gabriel’s lip because with bilateral cleft kids, you don’t want to do it too
early because you almost always have to do it again as they grow. I get that.
I do. But I can also tell you
there is no movement in his upper lip, which cannot possibly be helping with
his speech issues. Dr. S says he’ll fix
it sooner if he gets made fun of at school.
I’d really hate for that to happen though because I think it’s mighty
hard to come back from being an outcast among your peers. It’s interesting to me that when we went to
Riley’s for a second opinion a couple years ago, the surgeon there wanted to
fix his lip immediately. It’s so hard
for parents to know what to do. I have
dreams sometimes where I take him to many doctors and none of them want to help
him. The kid has so much to say and no
way to say it. I refuse to believe this is just how life is going to be for
him.
He starts kindergarten next week and is super excited about
it! I’m super scared. I fear no one being able to understand
him. I also fear that they will not be
able to validate his ability to learn (especially reading) because he cannot
verbally provide answers. I took him to
the eye doctor last week because he’s on the cusp of needing glasses and the poor
girl helping us kept trying to get him to read letters. All the letters sound the same when you only
have so many you are able to actually articulate. I finally asked her to switch to pictures
because it’s a little easier to validate if he can see things clearly or not. It’s the little things like that that get me
down. He looks like the perfectly
average child and people appear to not know what to do when they figure out his
speech is unintelligible. I find I spend a lot of time trying to explain it to
them, and really don’t need to. I guess
I just don’t want people to assume it’s not because of something medical, but
rather because his parents choose not to help him. Paranoid, I know.
Gabriel is such an amazingly funny, loving, beautiful
boy. I only hope that one day this will
all be behind us and a memory for which we can share a good laugh.
