This coming Monday, Gabriel will be having a tonsillectomy and adenoidectomy
as a prerequisite to having the pharyngeal flap surgery on February 25th.
I bet you’re wondering how we got here and what made us
decide to go through with a surgery we had previously said we would not do.
It all started with the nasendoscopy. Prior to having this scope done, I was living
in this little, imaginary, happy place bubble hoping that the soft palate was
close enough to the back of the throat that through intense speech therapy, it
would magically fix itself. When I watched Gabriel’s palate stay perfectly
still during the procedure, I knew that happy place bubble had just
imploded.
I took Gabriel to see Dr. S (his plastic surgeon) this past
Monday. Dr. S confirmed that not only
was the palate too short, but the lack of movement indicates the nerves are not
doing their job of telling the soft palate to move. He told me there was nothing he could do
except for the pharyngeal flap.
I asked a list of questions and it basically came down to
this – Dr. S said (and he’s right), if you look up any
condition/surgery/procedure/anything on the internet, you are going to find a
million horror stories about how it all went wrong. He believes that Gabriel will be fine and
that if he does end up with sleep apnea, we can go back in (when he’s a
teenager) to adjust the flap and try to help with that. I confirmed that this is not a stepping stone
surgery that requires many more to help him speak, that the flaps don’t have to
continually be adjusted as he grows, and that should this not work, we are done
and will accept that truth.
Dr. S wants to do the surgery ASAP so we can get in as much
speech therapy as possible before Gabriel starts preschool in the fall. Why will he need speech therapy if this is
the miracle surgery that’s going to make him speak intelligibly, you ask? Gabriel will continue to have articulation issues
because his entire top lip is made of scar tissue and because his palate is not
like everyone else’s. The pharyngeal
flap will help him make the sounds, but he will still need to develop oral
motor function to help him articulate his words. We expect many, many years of speech therapy
ahead of us.
So, given all this knowledge, we went back to our
discussions of what we were going to do.
This is what it came down to:
My son has a voice. He
uses it all the time. He has things to
say. Imagine his frustration when what
comes out of his mouth sounds nothing like what he’s hearing in his head.
I want my son to be able to defend his scars with words, not
fists. I want him to be able to order a
burger from a drive-through and call plays on a football field. I want him to join the debate team and speak
his valedictorian speech. I want him to
be able to speak his wedding vows and sing lullabies to his babies at night. But most of all, I want him never to look at
me and say that we could have fixed this and didn’t take the chance.
I don’t expect you all to agree. Some people will think speaking is not that
important and the risk is not worth the reward.
I appreciate and value your opinions, but ask that you do the same of
ours.
I also ask is that you keep our baby boy in your thoughts
and prayers as we have surgeries eight and nine in the next six weeks.
Until next time…
