Confused? Hold tight –
you won’t be for long.
I had several ideas for the title of this update, but couldn’t
choose just one – so I combined them all!
Oh, Happy Day –
The pharyngeal flap surgery went great! In fact, Dr. S said it ‘could not have gone
better’ and was ‘perfect’! What does
this mean?
It means that the quality and tone of Gabriel’s voice has
changed and improved immensely. So much
that when he cried, it was hard to tell it was even him! There is no longer a hyper nasality to his
voice – meaning, it no longer sounds like he’s talking through his nose.
However, his ability to speak intelligibly is still what it
was – pretty much non-existent. He has a
long way to go with speech therapy to be able to be understood, but we are
confident now that with the pharyngeal flap in place, we will at least start
seeing positive results. In fact, I have
officially heard a ‘b’, ‘d’, ‘w’, and ‘g’ since the surgery – it’s just that
the use of those sounds lacks consistency.
After healing for another week, he’ll start speech therapy four times a
week. Hopefully things will move quickly
from there. The goal is to have him go
to Kindergarten with intelligible speech.
We’ll see…
There’s a Hole in the Bucket, dear Liza –
What you all didn’t know was that a small hole had developed
in the repaired fistula following the surgery last October. This hole popped up about a month after the
repair and was seemingly so small that we were hopeful it didn’t go all the way
through the palate, but rather was just open on the oral side.
Dr. S did some clean-up while working on the flap and
discovered that the hole we knew about was actually quite large and that there
was a smaller hole we didn’t know about behind it. He closed up the smaller hole, but the larger
hole is still open.
This presents some interesting challenges now that the flap
is in place. Whole pieces of food have
been going up into the hole – which means it ends up in Gabriel’s nose. In the past, that food would either go down
the back of his throat, or would be sneezed out. Now, since the flap closes off the nasal
passage from the throat, the food has nowhere to go if he doesn’t sneeze it
out. It just sits there. Yes, it’s gross. I keep having him blow his nose to try and
keep his nostrils clear, but sometimes it feels like a lost cause. The other day he sneezed out pancakes,
scrambled eggs, and a noodle in one sneeze – he hadn’t had a noodle for two
days prior to the sneeze. I’m pretty
sure the food shouldn’t just sit in there, but he really doesn’t like for me to
pick his nose – I can’t imagine why…
So, what are we going to do about it? Well…we need another obturator! As soon as all healing is done, we will go to
see Dr. W and have another one made. I’m
not looking forward to this because it means more impressions have to be taken,
and I really hate when Gabriel has to go through that. I’m also going to push for an obturator that
doesn’t have to go into the hole, but rather can be worn more like a retainer
attached to the teeth. Have to leave
that decision to the experts though.
Either way, we have no plans to try and close the hole again
at this time. It’s opened too many times
to believe it can be fixed surgically right now. There is hope that it will close on its own,
and if not, we’ll just add it to one of the surgeries Gabriel has as a
teenager.
In addition to the hole, we have noticed that Gabriel can
now snore almost as loudly as I do (which is loud) and he has been having some apnea-like
episodes. Not enough that we are
concerned he needs a machine to help him breathe at night, but enough that we are monitoring it.
Me and Julio Down by the Schoolyard –
What I have not disclosed up to this point is that I’ve been
fighting the school system to get Gabriel the educational care he needs. When he aged out of First Steps for his
therapies, we had to transition his services to the public school system. He was evaluated to determine what special
education services he would have provided to him.
Upon the results of this evaluation, it was determined that
he appeared to have no cognitive delay, so he would not qualify for special
education preschool, even though he qualified for speech therapy services and
literally cannot be understood. This did
not sit well with me at all.
After some heated conversations and a lot of research
regarding Article 7 on my part, I asked for a complete and full evaluation to
validate their assessment. We found out the
Monday before his surgery that he presents a developmental delay due to his
gross motor skills (for which he’s had physical therapy for in the past). That coupled with his inability to speak
intelligibly qualified him for speech therapy, physical therapy, and special
education preschool!
This does not mean that he will always be in special
education. What it does mean is that 1) he will have an IEP (Individualized Education
Plan) that will follow him throughout his education (just like Ethan) and 2) that
he will get the services, education, and access to an environment that will
help him thrive.
You probably wonder why I would want my child in special
education, but it’s simple. Gabriel is
not the average child. He can’t run,
jump, catch, or walk stairs well. We
believe this is due to the amount of time he has spent in recovery with arm
restraints, flat on his back, and unable to move like the average child. He cannot be understood and I refuse to let
him be held back in Kindergarten because he can’t vocalize his colors. He needs smaller sized classes with highly
educated teachers right now to give him the best chance to grow.
He starts preschool in a week and a half (provided he is
healed enough to start) and couldn’t be more excited! He asks all the time when he gets to go to
school and would go this second if I’d let him!
Things are really changing for my baby and I can’t wait to
see what happens next!!!
Oh, Happy Hole in the Bucket Down by the Schoolyard –
Get it now?!
