Month: January 2014

First Physical Therapy Session

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Alex had his first PT session yesterday. I was A LITTLE nervous about how it was going to go. His PT evaluation really wasn’t that hot; nothing horrendous, but also pretty far from ideal. This was also our first therapy session, the first of what’s sure to be many, so there was that aspect to it as well.

Alex’s therapist arrived a few minutes early, introduced herself, and got right onto the floor with him. I got a very good from her which is obviously important if she’s to be on Alex’s dream-team of therapists and doctors. Very expressive, very nice, very talkative (she narrated everything she was doing, which was helpful for my note taking). Overall, she seemed to be very pleased with where Alex was. She DID notice that Alex prefers to look to his right side, but also stated that he only seemed to do that when he was laying down. Everywhere else and he was good to go.

She ran through a series of little exercises to do with Alex to help push him to his next set of monthly milestones, one of which includes sitting and mastery of rolling over. Throughout every exercise she emphasized the importance of giving Alex the least amount of help possible to keep him stable to coax him to use his own muscles, and instead of PLACING him into spots, to TRANSITION him into spots. Example – for tummy time, instead of picking him up and placing him directly on his belly, it’s much more helpful to use a toy to try to get his attention and direct it to one of his sides, then coax his hip in that direction to try to get him to initiate a roll. It all sounds like pretty obvious stuff, but hearing and seeing the exercises really drove it home. It also helped that Alex was clearly getting tired from the activity, so I knew he was working.

But by far, the best part of the appointment was when the therapist told us that Alex was doing fine developmentally from the PT spectrum of things, and nearly verbatim, “If this was Alex’s evaluation he probably wouldn’t have been recommended for physical therapy.” That was huge. Not only does it represent some sort of win for him, but it’s also a positive sign that he doesn’t have any other physical symptoms that have manifested, at least yet. I also asked about his balance – she said it was fine, he had no issues. Great stuff.

That was about the end of it. She did say that it might be beneficial to increase the therapies from monthly to bi-weekly once development started picking up more, the basis of it being that she can catch things earlier, monitor progress more often, and that there are basically a higher amount of milestones that will start happening. I’m not explaining it here as well as she did, but Shannon and I both agreed that it made sense if we got to that point.

We have an appointment with her for next month and obviously hope that Alex performs as well for that as he did here.

Now to see if we can get his other therapists into the picture…

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Some More Random Updates

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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.

More Techy Stuff.

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I’ve already said a few times that I’m a big tech-head and that I think it’s going to be very natural for me to spend a lot of time researching the myriad stuff going down the pipe for hearing loss, so if you’re not into that, you won’t dig this. I like talking about all of the possibilities that these developments could represent for Alex, though, since a lot of it is what personally keeps me sane when I think about the stuff Alex won’t be able to experience or the stuff he’ll HAVE to deal with using today’s tools.

CES (Consumer Electronics Show) is a big annual show where all of the gadget companies show off their latest and greatest to drum up hype. It’s gotten large enough that the heavy hitters at the show get coverage from major news outlets. The 2014 convention just wrapped up, and among some nerdy things that I can’t wait to get my hands on, one of the larger themes of the products there was wearable technology, primarily in the form of smart watches (you’ll know all about them when Apple releases theirs). There were a few VR helmets on display and a few Google-Glass like devices too.

There are a few things that I’m really digging up about the push of wearable technology in relation to Alex’s hearing loss and his potential usage of assistive technology.

  1. It signifies a big push and vote of confidence from the companies involved that miniaturization of high-powered devices is at a point where it will be accepted by mainstream customers, and that further miniaturization will continue to be chased down. This will translate to more readily available and powerful hardware that can be used in the assistive devices Alex might be able to take advantage of. If we’re specifically talking about cochlear implants, that’s going to mean smaller BTE (Behind The Ear) pieces, and later on, components that are small enough to be completely implanted while still being very powerful. The same idea would apply to microphones.
  2. Wearable technology might make body-networking more popular, which will lead to improvements. Body networking is basically a wireless network that uses your body as a physical medium instead of cables. It’s superior to wireless networking because it’s more secure (someone has to be touching you in order to be on your network) while carrying a more reliable signal than wireless (not as prown to interference). This could potentially lead to doing away with the conspicuous wire and magnet that connect cochlear implants to the BTE speech processor (my biggest qualm with the appearance of the tech).
  3. The proliferation of body-worn tech might get to the point where it’s very common place, making cochlear implants less socially strange at a general level. This one isn’t way too important to me, but I’ve read some sad-ish stories of parents who can see people staring at their children or dealing with rude questions. I’m thinking that miniaturization will play a much larger role in allowing users of CIs or powerful hearing aids to not get strange looks because of their hardware, but it’s something.
  4. Better, smaller batteries OR body-powered devices. Cell phones have driven compact battery performance through the roof over the past ten years, especially since the iPhone popularized the “your whole phone is a touchscreen” trend. It’s funny to think about now, but I remember reading all of the skepticism on gadget forums about how the iPhone would be a certain flop because its battery performance MUST be garbage, and that was only seven years ago. With wearable tech, development of technology that can charge off of a person’s body (through heat, kinetic energy, etc) becomes a more desireable feature. Obviously for hearing tech, this equates to smaller devices with smaller, longer-lasting, or even non-existent batteries.

I’m excited to see this stuff start to take off. It’s clearly in its infancy right now, but the qualities of these devices are pretty similar with those of assistive hearing technologies. The more brainpower involved in these areas, the better for Alex.

So there’s CES, and that’s why I’m now particularly excited that devices like smart watches and fitness trackers and Google Glass are gaining momentum.

I have a few other things I’ve dug up about assistive tech, but I feel like I just wrote a boring enough wall of text above and I’d better stop here.

The Holidays

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With the sudden slowdown of appointments, I haven’t had all that much to post about. Shannon and I are both in the midst of the blur and continue to make tweaks to our schedules to make life a little more sane. We’ve renewed our search for a nanny to watch the kids at our home for two days a week so that they’re only in daycare for two (this sounds especially nice as I write this, given the storm Buffalo just received). We’ve also just hired a cleaning service to come out to the house once a month and give us a little bit of time back while keeping the place in sane condition. I feel like we’ve made it through the first big wave of appointments and are now in a slight holding pattern as early intervention gets therapists line up and we wait for Alex’s hearing aids to be sent over (“dispensed”).

So, a quick note on the past few weeks. The holidays were generally nice, as I thought they’d be. I fell into a little bit of a depression again just before Christmas, but that was more of a minor funk than anything. Strangely, I think a lot of that was spurred on by the fact that we were in the midst of my favorite time of the year, but that I couldn’t enjoy it as much as usual with Alex’s deafness racing through my head constantly. Shannon and I had a few of those family moments where we’d say “Imagine how perfect this would be if he were completely healthy” and the like. Our state of mind was still a huge improvement over the big depressions that hit us after the diagnosis, but that feeling is always with us, even in diminishing forms. I’ve been fine since then, though.

That said – the holidays were also a good morale boost. Being surrounded by family re-affirmed the great environment that Alex is going to be brought up in and the support that he already has. We got the chance to hang out with some of our good friends who also kept our spirits pretty high. It’s nice to talk about how our kids are going to play together and the like. It’s one of those small things that supports the idea that Alex, although not completely perfect as far as health / issues goes, can have a completely normal life with the right support.

Shannon and I have said a few times while looking at the kids that it’s going to be really interesting to see what next year looks like. I’m really excited about the prospect, even though I was loving those moments as they were happening as well. We’re really hoping Alex will have his ears and we’ll be opening the hearing world up to him. A lot can happen in a year!

First Genetics Appointment

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First post in quite a while – it was a busy holiday. I’ll probably tackle some of my  thoughts / feelings during that period at some point soon, but we just got back from the genetics appointment so I thought I’d write about that now while it’s fresh.

The first thing that comes to mind is a blurb from our last audiology meeting that I don’t think I wrote out here. We were speaking with the audiologist and the director of the oral school and getting them caught up with what other people we had talked to and where Alex was with regard to all of his other appointments. When we told them that one of the next things coming up was a genetic test, they were both somewhat surprised – apparently it’s pretty rare that their kids’ parents have that testing done, which in turn surprised me. I certainly understand the whole “ignorance is bliss” approach, but don’t you still do it so that you can get in front of anything else that might be coming, or even better, that you could get some verification that nothing else WOULD be coming?

Anyhow – the director cited a pretty wild figure, something to the tune that she only knows of three or four kids who went through her program who had the testing done, so they’ll be interested to hear how the experience goes for us. We’ll certainly share that information with them.

The appointment itself was pretty standard stuff. Nurse comes and gets us, takes Alex’s height, weight, and head measurements. Another person (I’m not sure what her title was) then came in and asked us to reiterate what was going on with Alex at a high level to make sure that it jived with the notes that she already had. Shannon did so. She then went through the following questions for both Shannon and I:

  • How old are you?
  • Do you have any medical concerns?
  • Do you have siblings? Do they have any medical concerns? What’s their age?
  • Do you have living parents? Do they have any medical concerns? What’s their age?

Obviously she was looking to see if there was an obvious genetic history to trace Alex’s issue to. She went over dominant and recessive genes quickly and explained to us that there could be multiple steps in the analysis. The first thing they want to look for is Connexin 26. This gene accounts for half of all cases of genetic deafness. The “good” thing about this gene is that deafness is basically the only issue associated with it, so if we happen to fall into that category, we’ll get some verification that Alex’s deafness isn’t symptomatic of something larger.

Our next step is to have Alex get a blood draw from Quest Diagnostics. From there, a lab will test specifically for Connexin 26, and we’ll go from there. If the test comes back negative, another test will be done to look for other common genetic issues that have deafness as a symptom. It’s still quite possible that Alex’s deafness isn’t genetic, and if that’s the case, we’ll just get a bunch of negative tests.

A doctor was supposed to see us next, but it turned out that she had gotten caught up in the brutal weather we’ve had today in Buffalo and wouldn’t be in until later. That was somewhat of a downer since we were told that a lot of her training involves being able to visually detect issues, and it would’ve been nice to hear that he didn’t have anything visible going on. That said, Shannon and I have both stared at Alex plenty and haven’t really seen anything that would raise any flags, so we didn’t walk out of the office with our heads low.

I had to tell Shannon while we were waiting that I hated that we had to be doing any of this. Even though we’re busy and we’re ready to get to work and we know that the outlook could really be positive, just having to make Alex (and in this morning’s case, Taylor) go to these was a little sad, even though they both didn’t seem to mind one bit.

Next steps: Get Alex’s blood drawn, wait a few weeks for results to come back (they are ONLY testing for Connexin 26), and draw a plan of attack based on those results. We were told that we probably won’t have to come back into the office any time soon even if more testing is ordered, which is nice. Anything that helps to keep the appointments to a sane level is good.

Anyhow, a pretty straightforward appointment, but I thought I’d write it all out for anyone who’s interested in what one of these looks like.