Oh, happy hole in the bucket down by the schoolyard

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?!