It’s never been a secret between God and me that I have
issues with blind faith. I’m the type of
person who must be in control at all times.
Always have been. I like to make
decisions. I like to lead the way. And I like to control destiny. At least I like to pretend I do. Let’s go back, shall we?
We took Gabriel to Riley Children’s Hospital in
October. Holy moly – that place was
HUGE!!!! Although, I must say, their
gift shop was a little disappointing. I
am a frequenter of gift shops and was really looking forward to seeing what a
children’s hospital would have, but it was actually fairly standard. Anyhow, taking Gabriel to see another cleft
team was enlightening, to say the least.
We have never questioned the path our cleft team has taken,
but to hear how differently another team would have done things certainly made
everything I thought I knew become everything I never knew. The Reader’s Digest version is this – the plastic
surgeon wants to fix Gabriel’s lip and, in the future, repair the hole in his
palate. He indicated that he would not
and could not recommend any further surgeries that might help his speech
because he leaves those decisions up to the speech pathologist.
The speech pathologist was amazing! We wish we were physically closer to her so
that she could work with Gabriel, but she did provide a fair amount of information
and her contact information for his therapists here, so that’s something. She identified that Gabriel is using an ‘N
Substitution’ in his speech. This means
that he has taught himself to replace nearly every consonant with the letter ‘N’. Go ahead and try it. What you’ll learn is that using ‘N’ for every
consonant does not work and certainly makes speech unintelligible. She indicated that she would not recommend
any further surgeries for speech purposes until we retrain his brain to stop
doing the ‘N Substitution’. When I told
her our goal was to have his speech intelligible by kindergarten, she said that
was certainly the hope and she would like to see him back in six months to make
sure we’re doing the right thing by not having any additional surgeries right
now.
What we were left with after this experience was a surgeon
in Indy who wants to fix Gabriel’s lip now and our surgeon who wants to wait to
fix his lip when he’s a teenager, unless he gets made fun of at school. Chad and I had many discussions about what
should be done. We also talked with our
surgeon and I told him that I don’t want to wait ‘until’ he’s made fun of,
because, to me, that’s too late. Once a
child becomes an outcast, it’s nearly impossible to come back from that. Sadly, kids are cruel and Gabriel’s going to
struggle enough with his speech that he doesn’t need a lip that won’t move
added to the list of things kids will tease him about. Our surgeon told us to pick the time and he’ll
do the lip revision. He just warned us
that with bilaterals, it’s highly likely this won’t be the only lip revision as
it will need additional revisions as he grows.
We told him that Gabriel
had a series of appointments coming up related to his spine and possible stroke
activity, so we would not be making any decisions until the results of these
appointments are known because they would certainly take precedence over any
lip revision.
That brings us to the other appointments.
Gabriel had 2 MRI’s a few weeks ago. The first to look at his brain for signs of a
stroke and the second to look at his spine to see if there was anything there
causing the curvature. The results were –
no sign of stroke and a normal spine!!!!!
There was, however, an air cell in the bone around the brain that causes
our neurologist no concerns, but we will have another MRI in six months to take
a look at it again, just to be safe.
Armed with that, we went to St. Vincent’s on November 11th
to see Dr. B – a pediatric orthopedist – about the curve in Gabriel’s
spine. He indicated that the curve is
fairly small and that ‘odds are it won’t get any worse’!!!! We will be going back every six months for
x-rays though just to keep an eye on it and make sure it doesn’t change. Great news, right? Kinda.
The question now is, if Gabriel hasn’t had any strokes,
there are no visible reasons for the curve in his spine, and it’s not likely to
get worse, then why is his left side still so weak and his gross motor skills
still behind? Dr. B confirmed that the
curve is what would be causing his left shoulder to hang lower than his right,
but it is not what would be causing the delay and weakness.
So now we head back to Dr. K, the pediatric neurologist, on December
18th so she can determine what tests are next.
We also had Gabriel’s annual IEP (Individualized Education
Plan) meeting a week or two ago.
Everyone there confirmed the things we already know – his speech remains
unintelligible and they are looking for other ways to help him communicate his
needs, his gross motor skills have improved, but still remain delayed, and he
might just be the funniest kid anyone has ever known! His PT said that some of his gross motor
delay might just be happening for no good reason and it will work itself out in
another year or so.
Blind faith.
The Indy speech pathologist ‘hopes’ he will have
intelligible speech by kindergarten, Dr. B thinks his curve shouldn’t get any
worse, the PT thinks there could be no reason for the delay and things will
work out. What is that saying about
having hope in one hand? Doesn’t it
somehow end up with poop in the other???
Nothing about this is controllable. We are choosing not to teach Gabriel any
additional sign language because the ‘hope’ is that he will suddenly be able to
speak clearly. We are not adding any
additional PT because the ‘hope’ is that his delays will fix themselves. I fear I lack the blind faith that these
things will, in fact, work out. Everyone
has been saying for four years that God has this plan for Gabriel. Everything happens for a reason. You just have to have faith and know that
someday it will all make sense. Someday.
Someday.
Someday never seemed so far away.
