I really have to get better at posting these more often. This probably won’t be the last time I open a post this way. The site stats are yelling at me.
At this stage of the game, we’re a little frustrated that Alex doesn’t have his hearing aids yet. We’re not angry at anyone in particular, just the situation. Not only do we want Alex to start having a little more access to sound, but we don’t want to bump up against any of the FDAs requirements that hearing aids be used for x amount of months (we think it’s three, but six is commonly mentioned as well) before he’s able to get implanted (if, IF he’s eligible). Getting him going quickly is hugely important to us because of all of the benefit he might be able to get. I know I’m getting ahead of myself, but I’ve read a lot of stories about kids being age-appropriate with their speech at TWO. Sounds incredible to me, but to have any of his milestones put at potential risk because paperwork isn’t being shuffled around quickly enough is frustrating.
Good progress is still being made, though. An hour from now Alex will have his first physical therapy session. I’ve already mentioned it, but Shannon and I think that he’s gotten MUCH better with the issues that the PT evaluator looked at a month ago – the biggies were neck / head control, and more importantly, a pretty staunch preference to look to his right side. It’s still clear at this point that Alex favors his right, but we still think he’s made some pretty good strides there. When the evaluator first looked at him, he basically refused to look over to his left. Now he can easily do it, but his preference is pretty clear. We’re looking forward to picking up a few more exercises that might help him out in that department.
On the genetics front, Alex’s blood was supposed to be taken last Friday at a Quest. When I got there, though, they explained that they didn’t have the right needles nor was anyone on staff who could do a baby draw. That was particularly frustrating, but I knew it likely wasn’t the fault of the person telling the news. Still, though – I had to schedule it, and I even had to tick a little marker that said “Pediatric Blood Draw” or something similar. Come on. Gonna have to reschedule that one and I’ll be sure to call a day in advance to MAKE SURE that they’re ready this time.
Our service coordinator (she’s sort of the captain / project manager of this whole early intervention gig) has reached out to our teacher for the deaf and speech therapist, but they haven’t given us a ring yet. Looking forward to getting those going, which should hopefully be this week. I’ve spoken with her a few times now and I think we’re going to get along well, which is important.
What else. Alex had a healthy four month appointment at our pediatrician, which put my mind at ease a bit. Shannon and I are in a pretty constant state of concern that something else is going to pop up, so every little win like this is one we’ll take.
Emotionally, it’s still an up and down thing. My rational side is very upbeat. The new Cochlear N6 implants are getting all sorts of positive notes dropped on the boards here and there, which reinforces my whole perspective that as long as it’s just hearing and as long as he’s eligible, we’ve just gotta get him on the path and his experience will only improve over time. The more emotional side of me still thinks the entire thing is still bullshit, of course. I’ve noticed lately that I’m more sensitive to tragic movies now. I’ll completely admit that I watched “West Side Story” today during the kids’ nap and I was actually bummed for a few minutes after it ended. Ha. Whenever I think about how much this all sucks, though, much of it washes away with a few smiles from Alex. He’s constantly reminding us that he’s still a happy little guy, and that truly helps.
Better wrap this up and finish cleaning for the PT. I’ll give that its own writeup soon.