I was telling Shannon earlier this week that it was probably about time that I threw something up here, so here goes.
There hasn’t been way too much going on. We’ve left Alex’s hearing aids out for the time being because he has a bit of an ear infection. It’s a mild one, and it makes me glad that we have the ear tubes that are helping drain all the fluid out, but of course it also makes me concerned that this little guy is somewhat prone to ear infections in general. The sheer chances that we would have his surgery postponed again seem fantastically small, and that’s of some comfort, but it would certainly be nice if he hadn’t made us raise our eyebrows like this. Luckily, we still have it on the calendar to get him checked out the week before to make sure he looks good, and on top of that, we might have some extra ear drops in case we see something go down after that checkup.
What’s really been on my mind, though, is the results of the extended genetic testing panel we had done for Alex. I called the genetics office this week asking for the results or at least to get a status since they were due to be in a few weeks ago. I was sent to the voicemail of one of the genetic counselors, who in return left me a voicemail saying that the director of the lab they were being processed at had to approve them, and he was off all next week. I called back and asked for some clarification; does he have to approve of them because they found something? I was told no, he has to review every result, regardless, prior to it being sent out the door.
Now, in a bubble, I’m not way too concerned that there’s more coming besides Alex’s deafness. I’ve done a pretty significant amount of research on the genetic angle of it. Basically, there’s only a 50% chance that it’s genetic in the first place, which would be interesting because no one in Shannon’s family or my own are deaf. Of some of the scarier things that can come with deafness, most of them have other telltale signs that Alex isn’t exhibiting, or at least isn’t CLEARLY exhibiting; stuff like balance issues, different colored eyes, skin issues, that sort of thing.
I’ve said it before, but the thing I think I’m most concerned about is Usher’s Syndrome, in which deafness is accompanied by blindness later on. That’s the one that often comes with balance / vestibular issues that our PT doesn’t believe Alex has. Additionally, this particular syndrome has a gene therapy available for the vision part of the disease that’s in testing right now, so even if it WAS Usher’s, there’s good reason to believe that Alex wouldn’t have to deal with the terrifying blindness aspect to it.
So basically, we think we’re OK, but that’s why I’m just defensively worried at this point. Hey, I wasn’t too worried when we took Alex to get his ears tested after failing his newborn hearing test, either. I guess we’ll see next week. With a little bit of luck, we’ll get some confirmation that this is all Alex is going to have to deal with in the future.
God knows the kid deserves a little bit of luck at this point.
He deserves a little luck and so do you guys! Sending positive vibes your way!