Monday, August 15, 2016

Q news

I'm writing from the surgery waiting area at our Children's Hospital. Q is asleep now and various co-ordinated specialists are working away. This is something I try not to think too deeply about, since I'm acutely aware of the details anyway. He should be awake in an hour or so, and we'll get busy with Life with a G-tube.

The decision to go ahead with this was validated especially this summer as we've been enjoying time with family. Many days, especially highly active days, don't offer themselves up as easy ones in which to manage pureed foods at the perfect temperatures, eaten at his pace, out of the wind, etc. Another plus will be dosing certain meds without Q having to taste them. One in particular tastes like nuclear waste, and it's not going away any time soon.

Q's medial eye muscles are also being adjusted to counteract some of the exotropia/strabismus he's had since he was tiny. I'm hoping that all of these "small" adjustments will be bearable for him and truly improve his daily life, allowing for less energy to go into gathering adequate calories and more energy to go into cognitive and physical goals.

Speaking of goals, Q continues to work with his magnificent speech device, and is making small but significant and steady headway. Since so much of his interaction at every level depends on his having a fast enough and precise enough motor plan to pull off the desired result, we work on the small targets, with a calm body, rather than allowing larger, jerky or "bashing" movements. It's paying off in many important ways, but perhaps the most important one is that he has an expectation of being heard and involved in his own activity. The coolest thing ever (I think) is that this expectation has resulted in his replying when other people are trying to engage him in conversation. He has begun to vocalize a "hi" quite predictably upon seeing his favorite people, and to have an almost as enthusiastic smile or sound for other folks who speak directly to him as though they're expecting a response. This has also happened in conversation, when someone has asked him a question or series of questions, and it's almost easy to miss. Because who doesn't expect a young man to respond when spoken to? or to comment upon something he finds particularly awesome or regrettable? It's a lot of fun to hear this play out in person, especially when the whole scene sort of materializes in front of you, suddenly.

At the end of last school year Q's suspension gait trainer helped him to walk about 300 feet, chasing a soccer ball. So we borrowed the nifty contraption for the summer, hoping to get outside with him a lot, but we really haven't.  Between weather and scheduling, the opportunities have been fewer than I expected.

They're wrapping things up now, so I should too. (How does that happen, anyway? I barely had time to get the rest of the stuff out of the van and eat a salad.) More news later.

1 comment:

Carolyn said...

So delighted to see an update! May the G-tube be a blessing to you, and to Q as he no longer needs to quaff nuclear waste past his taste buds. How great to hear that he's making strides in communication!!!

Another C