Alex is now Bionic

Done.

I didn’t want to write too much leading up to Alex’s surgery today just because I didn’t want to hype it, and frankly I’m a little bit superstitious, so I didn’t want to do what I did last time and make an event of his surgery.

It worked, despite a serious amount of excitement.

The surgery was straightforward; no complications, no catches. Our surgeon mentioned that Alex’s eardrum might’ve looked SLIGHTLY pink, but that was the extent of it.

I’ll write something up in detail later, but bottom line is that we went in at 6am and were home by about 4:30pm. Alex has been very tired – much more so than when we brought him back from his botched surgery. That probably has something to do with the fact that he was under for a lot longer as well as the fact that more work was done. Shannon hit up the boards to see if near-constant sleep after the surgery was normal and got a lot of “affirmative”s, so that was good enough to  help us relax.  He’s been in his crib since about 7:30 now, not a peep.

Tonight’s probably going to be tough and I’m guessing that tomorrow will be pretty tough as well, but the surgery is done, and Alex now has the raw materials for sound. He’s finally got that and is healing up. 

Details to follow, but wanted to write that all is generally well over here, though today was damned tough and the next few days are probably going to be a bastard as well. But we’re thankful for where we are and what we have, and for all of the positive thoughts and prayers that were sent our way to help make it happen.

Here we go again…

It’s been pretty quiet around here for the past few months, so my posts have slowed down a bit. The last thing of note that really happened was Alex’s genetic results coming back clear, but past that, we’ve basically been in cruise control and trying to keep him moving forward with his physical therapy. He’s making good, steady progress in that regard. Our physical therapist has told us, again, that Alex would not qualify for PT at present if an evaluation was done on him now. He still likes to wag his head around a bit, but she feels relatively confident that he’s just “looking for input.” His balance is fine, and he can always be distracted from said wagging, so we’re still looking good on that front.

I feel like I’m basically mirroring what Shannon wrote on her blog today, but the new thing to stress about is that Taylor has a cough and fever. Alex’s surgery is six days from now. The concern, then, is that Alex will catch whatever Taylor has, become sick, and have his surgery postponed again. Alex doesn’t have a fever. He’s snotty, but I think just about every kid at this age is to some extent so that doesn’t concern me too much. He also isn’t coughing or sneezing an irregular amount. 

It seems that the criteria to go through with the surgery is generally:

  1. The lungs are clear of fluid
  2. No fever present
  3. No major ear infection present

I’m not sure how I feel about him still looking OK at this point. If he was symptomatic NOW, then at least there’d be a good chance that he’d be on the mend by next week. I think I’m happier that he’s not showing anything yet.

We have a meeting at the surgeon’s office on Thursday as a pre-surgery checkup. That could be interesting. My fear is they take a look, see something going on, and flat-out say that they’re going to reschedule the surgery. My hope is that I’ll tell them the situation and they’ll say that he looks fine, but will prescribe some preventative antibiotics as an extra precaution.

Regardless, there’s not a whole hell of a lot we can do at this point past wait, keep the kids apart, bust out the hand sanitizer, etc. I want to say that Taylor has caught fevers a few times and Alex didn’t, but my awful memory probably isn’t to be trusted.

I think… THINK the good news is that we still have almost a week until the big day. Taylor’s cough hasn’t been too crazy today, but she always seems to get postnasal types of coughs where things are OK during the day, but really pick up in the evening. With a little bit of luck we’ll keep them separated, Taylor rebounds fast, and that’s that. Again, probably wishful thinking.

And, of course, both kids were healthy for the past five or six weeks.  We’re now bumping up against a timeline that would allow him to hear his family and friends sing “Happy birthday” to him in a few months, so… come on, universe.  Cut the kid some slack.

 

A Little Relief

I got the call yesterday; the extended genetics panel came back CLEAR. Alex doesn’t have Usher’s or any other scary genetic syndrome. It’s a somewhat bittersweet victory because Shannon and I both feel like it was the antibiotic (gentamicin) that took Alex’s hearing from him, but  for me, the sweet outweighs the bitter. I’ve been terrified that Alex’s deafness was just a symptom of something bigger and worse, and now that’s basically gone.  Thank god.

The positive spin I’m putting on the antibiotic factor is this; if medicine took his hearing, it’s going to have to give it back to him as time goes on. I feel like because it appears that all Alex has to deal with is deafness and because of all of the developments happening on that front, he’s going to have the opportunity to take back what was taken from him.

Alex was supposed to be activated today if his surgery had gone through last month. To say that it’s a bummer that it didn’t happen is an understatement, but I’m very, very grateful for the clear genetics panel, so that helps to offset the frustration just a little.

That’s about all that’s going on, but I’m very, very happy to be writing this sort of update instead of what could have been the alternative.

Ear Infections and Anxiety over Genetic Testing Results

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.