Post-Surgery Checkup

Alex had his post-surgery meeting today with his surgeon. His ears completely stopped bleeding two days ago, as did his nose. His incisions also still look great. We never noticed any sort of balance issues or change in feeding behavior, so really, we didn’t have any questions for him besides asking about him snorting occasionally.

The checkup was about as simple as it gets. He took a look at the incisions and ran a finger along them, probably to get an idea of the swelling. He then took a look inside of his ears and noted that he had a little bit of dried blood “flakes” in both of them, so we can expect to see those. He also mentioned that though the incisions look great, there’s a chance that they may widen as the skull grows, but even if it did, his scars would probably not be noticeable unless you knew to look for them. He also noted that the pink / red hue of the incisions can take up to two years to completely clear out, but I don’t really even notice it now. Bottom line, the kid is in great shape.

Aside from that, he basically told me that we were essentially done with him; not in a bad way, though. Alex hast his implants and his healing looks great. Unless he has any issues that are related to the implants, the surgeon’s job is finished! He said that he’d be keeping an eye out for Alex at Buffalo Hearing and Speech since he spends a day per month there, so he’ll be in touch.

All in all, it took fifteen minutes between walking in and walking out of the office. I unexpectedly felt pretty good about walking out of there, because unless something weird happens, we’re done with that. The feeling of finishing things and putting them behind us on this whole adventure is pretty refreshing. One last office to worry about.

Speaking of finishing things – we suspect Alex might wrap up his physical therapy soon. Despite the amount of heartache he gave us by not crawling until a little bit later, he’s basically exploded in the past two weeks in terms of crawling and pulling up on things. I think between this, the genetic results, and all of our physical therapist’s evaluations, we’re really just not all that worried anymore about his development for the foreseeable future. Our early intervention coordinator called me a week or two ago saying that she needed to get together with our physical therapist – I suspect this could be why. I know that when she goes we’ll both feel bummed, because she’s been a key cog in keeping us a little more sane over the last eight months. At the same time, though, that’ll be another great victory for our Alex. I really like that we’re getting to the point where Alex’s therapies are going to be in the hands of one organization that is constantly receiving accolades and that has already earned our trust and respect through the people we’ve met there.

That’s all I can think of that’s going on right now. Still blows my mind that he’s going to start hearing us in just two weeks. We’ll certainly be filming it, but aren’t expecting any insane reactions like the ones you see on Youtube. The way it’s generally done is that the sound is started at a low level so that it isn’t overwhelming, so a lot of times the audiologist will just look for very subtle signs that the patient is getting that signal and stop there for the time being. But we’ll see. I’ll be just as happy if it freaks him out, because we’ll still know it’s working.

Hopefully it’s all smooth sailing until then.

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General Early Intervention Status

I thought I’d write about how all of our early intervention stuff has been going, just to give an idea of what it’s been like. Our focus had definitely been on getting the health insurance on board with the June date, so writing about these sort of fell by the wayside.

I guess the first thing to say here is that they don’t feel terribly inconvenient or time-obtrusive. I was worried about that when we first set out, but it really hasn’t been too bad. A lot of that is probably because I have a relatively flexible work schedule and our therapists have been awesome about coming either first thing in the morning or after I already get home, so even though we typically have one or two therapy sessions a week, they basically just eat up home-time, so no big deal. And of course, we’re always interested in picking their brains about what they’re looking for, what else we can be doing with Alex, bounce questions… so yeah. Even though I cringed when I had first read about having appointments all of the time, I’m pretty happy to say at this point that it hasn’t really been a big deal overall. All of our therapists are awesome and we welcome all of their help and experience.

Breaking it down…

 

Physical Therapy:

We’re still doing PT once a month. They go for about an hour. Our PT generally starts by asking us if we have any concerns, which we almost have. Once you have a kid who has one disability / issue / whatever you want to call it, everything that you would’ve otherwise written off as him just being a weirdo or taking his time becomes something new to worry about and research. So, as a result, whenever our PT asks us that question, we usually have something for her. Luckily, Alex has been doing well, in general. His balance is solid, he’s sitting up for decent pieces of time, etc.

After the PT finishes up “testing” for whatever concerns we had, which she explains in great detail, she takes Alex through the paces for everything we didn’t ask about and asks questions, usually in the form of “Has he done x yet?” An important thing she told me during our last PT session that probably would’ve saved me some stress if I had known it before – when you see PT guidelines like “Can sit up without support for 30 seconds,” they mean “Has demonstrated that he can sit up for 30 seconds” and not “consistently sits up for 30 seconds.”

After that, she goes through what she’ll be looking for at next month’s appointment and shows us exercises that we can work on with him to help push him along the path. The mantra remains to give him enough of a push that he can succeed but as little as necessary to make sure he’s working for it.

Once we get toward the end of our time, she writes down all of the exercises that we should be working on with him, and that’s that. She always tells us that we should feel free to text / call her with any questions, and she’s been great in that regard. We’ve only used that once when we were really concerned, and she got back to us very quickly.

Once Alex hits ten months of age or so and things really start picking up with crawling / walking, we might bump our appointments up to an every other week type thing. Our time with our PT is always very educational and often calming, so at this point I have no issue with doing that to make sure that Alex keeps pushing forward. But overall, he’s been pretty solid in the PT department. He’s not as far along as his older sister Taylor was, but he’s not showing anything that concerns our PT. So far, so good.

 

Teacher of the Deaf:

These are every other week and only go for about a half hour. Because our TOD actually works at the deaf-oral school Alex will be going, our sessions generally started as a “here’s what’s going to happen once he gets implanted and once he starts going to school” type thing. I think she wasn’t expecting us to have researched as much as we had in advance – we’ve gotten that a few times. Anyhow, the past three or four of our meetings have followed the same pattern. The TOD brings a bag of toys with her and works on getting Alex interested in one toy at a time. The toy generally “does something” – i.e., it’ll be a ball that has a button which causes it to light up, or a car that she’ll drive up to his face, but the idea is that there’s an action associated with the toy. Her goal has been to get Alex to make eye contact to signify that he wants that action to happen to. He’s been great in this area. When Shannon and I feed him solids, most of the time we won’t give him his next spoonful of food until he makes that eye contact, so he’s used to this. I have a feeling these meetings are going to pick up after he gets his implants, which I’m excited for, because right now Alex isn’t really being pushed. That’s not necessarily a bad thing, because we’re both grateful that he’s nailing the eye contact thing, but it’s going to be really cool when we can start having him use his new ears to vocalize to get those toys to move or whatever the next step ends up being.

 

Speech Therapist:

The speech therapist’s visits are pretty familiar to the TOD’s at this point. She comes every other week for a half hour.  She usually first asks us how Alex is doing with his hearing aids, whether or not we see him reacting to any sound, and if we’re having any issues with keeping them on his ears. After the quick status update she starts working with Alex. Like the TOD, she also brings toys, but they’re various animals. She works on getting Alex to make eye contact and then making the animal sound (“A doggy says woof woof woof”). Again, not really too much happens here. Alex watches intently, but you can tell that he’s not going to really maximize his value here until he gets his CIs. We’re really looking forward to his speech therapy sessions as one of the goals we have for Alex is to get him talking as early as possible and hopefully work on any affect he might start out with.

So there it is. We’re getting excited to REALLY get Alex going in a few months and teach him how to use his new ears and we’re thrilled with the supporting cast around us.

Busy Week Coming…

It’s been a little while since I’ve written anything, so I figured I’d put a few updates out.

As the title says, we’ve got a lot of appointments coming up. Tomorrow at 3:15, I’m taking Alex to the audiologist. She’ll probably just give Alex new ear molds (his current ones are laughably too small) and MAYBE will do a sound booth test to see if he’s getting any sort of benefit from them. Zero hopes there, but that’s alright. Almost immediately after that meeting I’m going to have to run home so I can get him home in time for his physical therapy meeting. This one is kind of a big deal. We had a checkup appointment with Alex’s pediatrician, and when asked, he noted that Alex was a little bit behind physically. He didn’t think it was much, and he grounded us by making the statement that only 50% of kids are ahead of the curve, so it’s nothing to really be terrified about. Alex’s physical development is definitely something we want to make sure he stays on top of, though. Even though I don’t really think he has something like Cerebral Palsy, it’s still something I’m scared of. Alex still likes to fling his torso back sometimes, and we can’t tell for certain if that’s just a trick that he’s learned or if it’s reflux or if it’s something else. His neck control still isn’t perfect, but it’s been steadily improving. He can grab things with both hands pretty easily. He can stand up with support (i.e., his legs stiffen as they should). He hasn’t completely mastered tummy time yet, but I blame myself for that quite a bit since I basically tried to skip over that and put him right into sitting-up time (which he’s getting increasingly better at!).

Regardless of the things that he’s doing well, it’s tough not to fixate and worry on the stuff he isn’t, so we’re really looking forward to this next PT appointment so we can ask some pointed questions. We get that he’s behind on some stuff, but should we really be worried? Have you seen CP babies and did they look like this? What about other physical issues? The PT side of things is definitely something that’s weighing heavy, especially with Shannon who’s literally losing sleep over it, so we’re really hoping to hear some reassuring things tomorrow and keep plugging away.

Thursday morning we’re meeting with Alex’s teacher of the deaf. Not expecting anything crazy there, and I can’t really think of what we’ll be discussing. Nevertheless, we’re both fans of her, so I’m looking forward to talking with her and asking questions if anything interesting comes up. I’m somewhat dreading Friday. Around lunchtime, I’ll be taking Alex to get another blood draw for his next genetics test. We got the formalized results back, and they just tested for a single gene. The next round is going to be testing for 20-something different things. I have a feeling they’ll come back negative as well, but we’ll see. We won’t get those results back until after June, when Alex will have (hopefully) been implanted. He was an absolute champ at his last blood draw – no crying or anything, and he had a lot of swooning Quest employees “ooh”ing and “awh”ing over him. I hope he’s as awesome on Friday as he was last time around, but I won’t blame the little guy if he puts up a pout.

Monday is Alex’s MRI, which is the really scary one. The results of this test will determine if Alex is eligible for CIs and might give an indicator as to how compatible his anatomy is with them. It’s apparently very rare for patients to not be compatible, and when they are, a big reason for that is a missing auditory nerve. Alex’s can’t be missing because he can still hear very loud noises. It’s all of SOME comfort, but once you “win” the lottery once, optimistic chances don’t give me as much comfort as they used to.

For the MRI, Alex will require some form of sedation to make sure he stays still for the machine. It will most likely be administered by gas, and I remember reading somewhere that it could just be a very light form of sedation (like a sleeping aid). It sucks regardless. On top of that, Alex isn’t supposed to eat anything from midnight until when his MRI begins at 10:45. Seriously? Our six month old is going to be starving. Not pissed, starving. That’s really not going to help to tone down the stress of the whole event. It’s going to suck, but we’re just going to take it one minute at a time, get it done, and hope that we get back the results that we’re hoping for a few days after.

A lot happening. My hope at this point is that he has a quality physical therapy session that puts our minds at ease and that his MRI results come back quickly and that they’re encouraging. If those two things happen, it should be relatively smooth sailing until we come up on the surgery and genetic testing results. It would be nice if some of the stress dropped for a while, especially with spring and the promise of warmer days around the corner. Seems sort of symbolic when I think about it; it’s been a rough fall / winter, and we’re ready for some good news and a break.

First Appointments: Teacher of the Deaf / Speech Therapist

I’m way behind on writing. In some ways, I think it’s a good thing, because I originally started this off as just a place to vent off steam. As things have sort of calmed down and we’re not in complete terror / panic / depression mode, I’ve had less steam to vent. Regardless, we’re still very busy, still a lot going on. I have a lot to write about, so maybe I’ll try out this blog scheduler thing and tear a few blogs out right now.

A few weeks back, we had our first appointments with two more of Alex’s early intervention people; his teacher of the deaf and speech therapist. They’ll both be working on different things with Alex, even though the gigs seem very similar.

Starting with the teacher of the deaf – as is with all of our early intervention team, all of Alex’s therapies will either be at our house or at his daycare. I had a LITTLE bit of trepidation over this one initially, partially because I wasn’t sure what to expect. I thought this might actually be a deaf adult who would teach us some of the ropes and maybe push ASL as the only thing Alex should be working on right now or something (if you don’t know, the existence of CIs is a source of great consternation among some of the more… passionate… members of the Deaf community). I didn’t want to feel pressured to go that particular way. At the time, I knew that my fears were probably ridiculous. Our Early Intervention coordinator knew what our goals were, knew we had already expressed great interest in the speech center’s oral-based program, and that any teacher who was too militant about pushing toward an ASL-only route would probably not jive well with us.

I’m happy to report that my trepidation was a complete waste of energy. As it turns out, our TOTD is actually the main teacher at the oral school we want to send Alex to! That’s huge, since Alex will be with her all the way up until kindergarten (assuming, as always, that he’s eligible for cochlear implants). She works with the kids in the program all of the time, she’s seen what works well and what doesn’t, so to have her involved early and often is huge.

As far as the content of the first meeting with her, it was sort of introductory boilerplate kind of stuff. She told us about her, what she did with the kids at school, schedules, and the general things we would work on. A lot of good info exchanged. Some of my favorite tidbits that came out of it:

  • The kids at the school get live music therapy once a week. Cool to see that the school doesn’t take the attitude of some of the more negative or older opinions of CIs in that their users can’t enjoy music.
  • Unlike Auditory Verbal Therapy, which seems to be the most common sort of therapy done with children who get implants to learn to communicate orally primarily, the system that her school uses doesn’t discourage lipreading as a tool. AVT has had a great amount of success (we see it on the Facebook parent board all the time), but I think lipreading is a tool. I don’t want Alex to lean on it too much, but if he uses it to get a little help in understanding what’s being said in loud environments, I’m all for it.
  • That said – the school DOES emphasize listening as much as possible. Our teacher told us that they regularly ensure that the kids are listening by calling their names and asking them questions when they’re not looking, for example.
  • She likes that Alex is in daycare for a few days a week – it’s good practice to listen in louder environments as well as good for socialization skills (some kids who are hard of hearing have obstacles here).

Overall, it was great meeting her. Shannon and I both liked what she had to say as well as her personality. It’s also great that we’ll be able to ask her any questions we might have about the oral school since she’s probably in the best position to answer.

Now for the speech therapist – I obviously had a clearer idea of what she’d be working on, so I wasn’t too worried about how that would go. Our first meeting with her was relatively uneventful. You could tell that she walked into the house assuming that we didn’t really know too much about CIs / hearing aids and their effects on speech. She came armed with a lot of knowledge on CIs, but we actually knew most of it already. It was no problem, of course – she probably got a good feel for what we know already. We’re really looking forward to working with her, of course. Oh – she’s ALSO on the staff of the oral school that we’re hoping Alex will attend. Past that, not way too much to say. Shannon and I both liked her as well. She was a bit more down-to-business, but I appreciate that quality for her gig. All-in-all, that was a pretty uneventful meeting, but those will get more interesting as some time goes on.

So there’s the team, all assembled. I like who we’ve got, and I feel that Alex is going to be in good hands.