Today has been one of those days that you really wish wouldn’t have happened after all. It would have been much nicer to have gone from Wednesday straight to Friday, skipping Thursday all together.
We took Parker up to PCMC for another FEES. Even though his swallow study looked great, I long lost trust in those and flat out insisted on a new FEES study after Parker’s last surgery where we tented his epiglottis.
The good news? Things visually look much better. The inflammation and cobble stoning has improved. And we are pretty sure he passed his pudding thickened foods.
It was obvious that honey thickened foods dump smack dab into his lungs. And if honey thickened dumps into his lungs……….his saliva is too.
And his gag relfex? Shot. Nada. Nothing. Things that would cause the rest of us to throw up in the ENT’s lap, don’t even register for Parker.
He’s obviously done some healing since his last FEES. At that time not even pudding thickened foods went down the right way.
There has been some progress.
And in three months we’ll check again.
And pray for more progress to have been made.
In other news, our Brave Hero is exhibiting some behavioral issues.
Ones that require solutions that look something like this:
A certain Brave Hero insists on climbing on the table and mucking around. No amount of taking him off the table worked in getting the message across to this kid. So, I’ve turned all my chairs on their side. The idea is the cause and effect between getting on the table, and me turning the chairs in a way that no longer allows Parker to use them as stepping stones to the table.
In a week I’ll turn them back the right way. I have no doubt he’ll go back to trying to climb on the table. I’ll put the chairs down again. Hopefully someone will get the hint that climbing on the table is not acceptable behavior.
Here’s the thing: Bored kids with special needs get into every bit as much trouble as their typical counterparts.
And even when Parker can play outside, jump on our indoor mini tramp, etc., he has been getting bored. Really bored.
It’s becoming obvious that I need to change things up around here. Parker needs to be doing more. Getting out more. Being challenged more.
I have lots of ideas of how to do this during the summer. I even plan on taking Parker to an adaptive PE class starting the end of May.
But how do I meet these needs during the Winter? How do I provide enough stimulation for him to meet his increasing needs?
I’m thinking of trying to find a used (and hopefully much cheaper) version of one of these:
I’m going to change around my online work hours and do more of my online work after Reed gets home.
But I need more ideas.