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.

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.

Mission 6/6: Part 3

I’ve gotta say, I’m actually relatively happy with how things have been moving up to this point.

Yesterday I called up the ENT to see if they had gotten a response back from BCBS in the form of a denied pre-authorization. Shannon called BCBS directly a few hours later. It turns out that it was a good thing that I had called, because even though they had sent everything in, BCBS wasn’t going to process it because of the initial “stop” that the ENT’s office put on the pre-authorization when they were incorrectly told that any failed appeal would tack an entire year onto Alex getting his implants.  So when the ENT called the insurance company to get a status, they were able to hammer that out and make sure it WAS being processed.  We’ve been told that will take something to the tune of 72 hours to turn around, so basically this Thursday. Additionally, we were told that the ENT actually sent in material explaining why we wanted to go in early.

Good things taken from that:

  1. It validates our strategy of calling over and over.
  2. The ENT didn’t just tell us “We haven’t gotten a response yet,” they followed up with BCBS and actually got a status and fixed the issue themselves rather than waiting for us.
  3. The ENT is ALREADY sending in the information on why we’re trying to get Alex implanted early instead of just waiting for the denial.

I’m probably saying this too early, but I’ve been impressed and grateful for the proactivity of our little team. Our audiologist sent us her drafted recommendation to be sent in for any appeal process after she integrated the verbage “medical necessity” at our request, and even asked if we wanted to make any changes or tweaks.

These might all seem like small kindnesses, but they really do add up, and in the healthcare industry where you’re asking for someone to go the extra mile for you, it’s nothing short of great service.

Shannon and I have a very small hope that the pre-authorization will actually be accepted based off of what the ENT sent in as well as just looking at the calls that we’ve made in the past week. The logic would be that given what we’ve already done, they’ve gotta know that we’re going to appeal vigorously, so maybe it’s worth accepting it now and losing whatever administrative costs and headaches would be associated with the appeals process? It’s a very small hope, because at the end of the day, we’re talking about insurance. They’re going to put up whatever walls they can to see if we just lose interest, but maybe they’ll weigh that against the appeals process we WILL put them through.

On the ear tube front, Alex has an appointment for next week. It’s just an office visit, so no procedure will actually take place, but the good news is that we’d still have all of May to get the procedure done. I asked the office person I was speaking with if she could make note that we need to have the procedure done prior to June, and she said that that note was already on our case, but she’d put it in again. Obviously when we go in, we’ll make note of that yet again and be as nice about it as possible.

I think that’s about it for now. Probably more to come on Friday.

In other news, Alex has made some pretty good strides lately in the physical development arena. He’s sitting up on his own for longer and longer periods of time, and he’s now rolling from back to belly. We’re hoping that means crawling soon-ish. Alex has a physical therapy appointment tomorrow. We’re hoping to ask the therapist if she might be able to write something up about the benefits of to Alex’s physical development if he has a sense of hearing earlier than later. I also want to ask her about Alex’s balance again and make sure that he’s doing well on that front. I did more googling about Usher Syndrome (where you’re born deaf or hard of hearing and slowly go blind) and balance issues are often associated with it early on. Alex is doing DECENTLY sitting up and once did it on his own for a good nine minutes, but I’d like that reassurance if we can get it that his balance is in good-ish shape. We’ll get confirmation once his extended genetic results roll in, but we still have weeks to go for that.

Now that I think of it, we also have an appointment with our teacher of the deaf tomorrow as well – I’ll probably ask her if there’s anything she can write up, though I’m not sure what that would really look like. Won’t hurt to try.

That’s a wrap for now.

The Oral-Deaf Dinner and other General Updates

Finally getting around to this.

The day we had our dinner was the same day that we found out that Alex was going to be eligible for CIs. That was a pretty huge boost, so we walked in feeling pretty good.

The event itself was held in the basement of the building, so we got a quick look at some of the classrooms / playrooms that were setup.  Dinner was catered by a popular local restaurant. We sat down front and center and met with two other couples with hard of hearing kids. I can’t think of any remarkable conversations we had there, except that one of the couples knew in advance that it was going to be a near-certainty that their child would have hearing loss due to genetics (the mother wore hearing aids). That didn’t stop them, which is no surprise, but I thought that was sort of an interesting dynamic. Also nice – we got some good face time in with the administrator of the program, who is the same sweet woman who was kind enough to physically meet with us and tell us about the oral deaf school months back. We also saw our teacher of the deaf, speech therapist, and audiologist. Definitely feel blessed to have that kind of supporting cast who all work together.

The actual discussion was setup as a Q and A with four kids sitting at the head table.  One of the kids got a little shy and jetted out of the table, leaving three kids; one unilateral CI boy (I want to say he was about 9) and two twin girls (I think 11 or 12, but I’m sure my wife will correct me on this). One of the girls used two hearing aids, one used one hearing aid and a cochlear implant. I think they all started off with a quick introduction. Once they got to the boy with the CI, I definitely perked up, because this would be the first time we’d hear speech from a CI graduate of our boy’s future school.

And it was perfect. No affect detectable.

Now, his little boy did just give off a very quick and smart-alec remark, but it was enough to get a sense for how good his speech was. It was pretty cool to hear. He only had one implant, too! The downside to his smart-alec remark is that the crowd gave him a pretty big laugh, which guaranteed that every other answer he gave from there on out would be a one or two word deal looking for the same response, but that was sort of cool in itself. He’s a little boy, acting like a little boy.

The girls were pretty amazing. They had speech affects, but I didn’t really notice after two or three sentences. Great self-advocating, they explained that they were both great students, the works. Two very inspirational young ladies that definitely showed off a maturity beyond their age.

Throughout the talk I was amazed that these three kids were functionally deaf, yet here they were, hearing all of our questions without a hitch, talking about their experiences going to mainstream schools, etc. It all seemed amazing to me, and made me feel even more hopeful for Alex given that he’s going to go through the same program, but with another ten years worth of experience and another ten years worth of technology advances at his disposal.

I can’t think of too many answers that were given that really stuck out as interesting, but that’s probably because I’d already done lots of research so I was able to anticipate a lot of the answers. One of the topics that stuck for about 15 minutes was FM systems (an FM system is basically a wireless microphone that you give to a teacher / speaker / whatever that sends their voice directly into “listening” cochlear implants or hearing aids). It was a good conversation about how it’s important to keep them on and the struggles to maintain them, but it got a little long-winded given that most of the audience members wouldn’t have to deal with them for at least another five years or so. Sports was another conversation that went on for a bit and it went into some of the challenges CI users have there (helmets, waterproofing, hearing in loud environments, etc), but my takeaway was that it’s all absolutely doable with a little extra work. No problem, we’ll do extra work. The kids talked a bit about how they’d get pulled out of their regular classes occasionally for special speech therapy and things of that nature. That was a SLIGHT bummer to hear about because it’s another thing that’s going to broadcast to Alex’s peers that he’s different, but again… we’ll deal with it, just like these kids and their parents did and do.

Overall, I didn’t see anything really too surprising, but to see the kids in person was pretty inspirational and I liked seeing how the teachers interacted with the kids. You could tell that they had formed some pretty deep bonds.

I think that about covers it.

Nothing too new going on at the moment outside of that. I have to call our ENT and see what’s what in terms of making sure that our insurance is lined up and what they’ll cover – I just read on our Facebook group that many insurance companies will cover TWO speech processors per ear so that there’s always a backup, that’d be nice! We always have a close eye on Alex’s PT. He still likes to bob around, but as he continues to demonstrate that he can hold himself up in a sitting position firmly, it makes the bobbing look more like him saying “I don’t want to be held like this right now” vs. a physical issue. Regardless, it’s something we want to continue to stay on top of.

The genetic testing results still make me nervous when I think about them, even though we apparently won’t have those in hand for another month or two. Just really hoping that his deafness is all we have to deal with and worry about.

Past that, life is actually sort of normal. Alex still wears his hearing aids all the time even though we keep them off most of the time because of the incessant whistling, but he does great in NOT swatting them off. Hopefully that trend continues on and we get lucky enough that he doesn’t hate his CIs, because once he has those, they are staying the hell on. We’re going to take advantage of every minute of hearing time that we can early on and get this kid going.

Something we’re starting to investigate now is getting an FM system that we can use with Alex that we would own – most parents don’t have one because they’re typically only used at schools, but I’d love to have it for louder environments, long car rides, that sort of thing.

We still have early intervention appointments frequently, but they’re starting to feel routine and just slight pains in the ass rather than an invasion of our lives.

We’re still constantly concerned about Alex and his future, but it feels like things are starting to normalize just a little bit.

Physical Therapy Update

Just wanted to throw up a quick note about the PT appointment we just had last night that we were worried about – it went great.

Our therapist came over and immediately noticed that Alex’s head-lean was much improved from when she had last seen him in February. She opened the session by asking if we had any questions or concerns, which we obviously did. She took a look at his head control and his muscle tone, and to our great relief, she said she didn’t see any issues with him. Hell, she didn’t even say that he was behind. He sat up very well and held it for about a full minute, which is what she was looking for.

Basically, he kicked ass. We asked specifically about seeing anything that remotely resembled Cerebral Palsy and she couldn’t find anything, and in fact she saw Alex doing things that would be contradictory to CP symptoms – the biggies were Alex’s muscle tone and the fact that he moves his limbs independently. It was a great relief to hear all of that.

I feel the need to write that our physical therapist is pretty awesome. She’s very well-spoken and clearly educated, and she also has a good bedside manner. When we told her what we were worried about, you could tell that she got it, that she understood our concerns, and that she was going to take the time to put our minds at ease as much as possible rather than just blowing it off with a “Nah, don’t worry about it.” She even told us about her own experience with one of her sons who had a low APGAR score and how she completely understood being scared of milestones and constantly wondering what sort of horrors were going to manifest. It’s nice to know that she could relate.

Alex isn’t PERFECT physically, and we have one or two things to work on, but our therapist assured us that these weren’t neurological issues, just bad habits that we’d want to correct early to help ensure that he’s going to keep up with his development. No problem. We’ll work on it.

Physical therapy was the biggy yesterday, but while I’m at it I’ll also bring up the audiology appointment we had yesterday. It was a very straightforward one. We came in, Alex’s ear molds were changed out to the new ones, and that was essentially it. Our next appointment is in April and we’ll actually be in a soundbooth to test Alex’s testing with his hearing aids. That’ll be interesting, but our expectations are really low. We doubt he’ll respond to much, and that doesn’t matter since CIs are such a different beast that his performance with the hearing aids will have no bearing on what he’ll get out of his CIs (little aside – a poster on our Facebook group showed a before and after audiogram of her child, who went from 100db loss to 10db, which is basically the difference between a jet flying by and something quieter than leafs rustling.  Amazing.).

Very relieving to have a good PT session yesterday. Now for the biggy, the MRI on Monday…

Some more random tidbits

A lot has happened lately, so this is probably a good time to write about some of the stuff that’s fallen between the cracks.

Alex is still moving along at a good clip with his physical development. We were worried that he was developing a flat head, but he’s been doing much better with sitting up with a little bit of help and we almost never have him flat against the floor anymore. None of that would really be an actual health concern anyhow unless it got REALLY bad, but it’s still a mini-win for us that the flat spot is going away.

Speaking of physical therapy, Alex had another PT appointment last night. Not way too much to say there – he’s still on track for his age, and it was reiterated to us again that if Alex was to be evaluated today, he likely wouldn’t be a candidate for PT services. We still have a list of things to work on to help ensure that he hits his milestones for next months, but there’s nothing we really have to get him caught up on. The only thing that the therapist noted was that he still has a little bit of a side preference when it comes to leaning his head, so she encouraged us to hold Alex on his side so that the opposite side of his head is propped up a little bit higher to stretch that neck muscle a bit. No big deal, though.

His eye contact is fantastic. One of his favorite games to play is to stare up at one of us. When we make eye contact back (especially if we make a silly face at him), it’s almost a guaranteed smile. Eye contact is a good sign that he doesn’t have some other issues that we’re obviously hoping to avoid. Our speech therapist even noted that his eye contact is great and that he reacts very well to his environment. Great, and reassuring that we haven’t seen any signs of anything else coming.

We still haven’t gotten the results of Alex’s genetics testing. That should be coming this week. It’s very likely we won’t learn anything from it at all, except for what it possibly isn’t. Because of that, it’s nice to have our therapists telling us that they aren’t seeing anything else going on, at least yet. It makes me nervous to think about. I have a bad feeling we’ll get back some sort of result that’s full of “this MIGHT happen, and this MIGHT happen…” sort of stuff that will just make us worry. But as Shannon often tells me, it’s important that we stay in front of as much as we can, and she’s right.

On the techy front, I’ve been excited about a recent MIT development that’s resulted in a CI proof of concept that’s completely internal. It’s a pretty slick design – the microphone resides in the middle ear, which effectively means that the acoustics of the users ears come into play, which is a little more natural. Obviously the coolest things about this design are really the invisible equipment and not having to worry about any of the downsides of that equipment. I think the big downsides to it would be that it would require a surgery to upgrade the hardware, though. Their design still uses an electrode to stimulate the cochlea instead of something like infrared (tens of channels of sound vs. HUNDREDS). That tech is a ways off, though, but the fact that they have a newer internal implant is awesome. I’m hoping that the model that we see for the internal implants involves a processor that’s still external, but much smaller than current processors (something like this, but preferably even smaller). Cochlear has an internal CI that’s been in testing for the better part of ten years now, and actually has two modes of operation – one that works completely using internal components, and one that works in conjunction with external processors. The former is the better sound, but the idea is that it isn’t required to be able to hear anything. I think that’s a great model to allow for upgrades as we go along without requiring surgery. A happy medium will be found.

Outside of that wall of techno-babble, I’m really thrilled that so much work is going into bringing such amazing advances that Alex and others will hopefully be able to use. Just thinking about him not having to worry about batteries or swimming or roller coasters or worrying about getting double takes makes me smile.

I recently asked our CI board about if and when they introduced ASL to their children. There was definitely some spirited dialogue generated from it, because it’s such a huge part of the strategy a lot of these parents used for coping with their child’s deafness. The thread is up to about 50 responses right now, and they’re all great in that everyone’s story was basically one of success, and they were just sharing their particular recipes. A lot of really interesting points were made both for and against teaching ASL prior to and during speech therapy. The one I found most convincing was that some children found it easier to use spoken language because they were already familiar with the concept of the words that they had learned from ASL. No one stated that ASL got in the way, but obviously it’s still a small-ish sample size. On the other side of the coin, there were many parents who posted that their children were oral-only and that their kids had no interest with learning sign language after their therapy. Cool to see that level of confidence placed in hearing / oral skills as the sole means of communication (minus writing and finger-pointing, of course!).

I think what I got out of the discussion is that there isn’t a clear-cut right or wrong answer, but it looks like ASL wouldn’t really get in the way of verbal development. I don’t think our current strategy of introducing ASL during or after Alex’s therapy is really going to change, but now I think the reasoning for that is going to be more about not inundating the guy with therapy and new things to learn instead of ASL impeding his verbal skills.  It’s still a tool that I still want him to have, though.

I think that about covers it! It’s been a busy week and we’re still figuring out Alex’s hearing aids, but I’m happy with the progress that we’re making.

I was telling Shannon that I have this future image of my head of having some of Alex’s buddies from his oral school come over to watch a movie in our home theater that we’re going to eventually put together (closed captioning, of course!), spoiling them with pizza and pop, and generally running around like the normal kids they truly were. Their parents could be upstairs with us exchanging our war stories of our respective journeys, how much we worried, how much work it all was. It’s a simple little scenario, but it gives me a lot of hope that everything will end up alright and that we’re just in a really tough stretch right now, just gotta keep plugging away.

First Physical Therapy Session

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…

Some More Random Updates

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.

A Relatively Quiet Week

There isn’t much going on in the way of news, but I felt like writing something out and keeping momentum. We don’t have any appointments this week! I was telling Shannon that I both like that and feel anxious about it. It’s nice to get a little bit of a break, but I also want to keep things moving. We’ve just about maxed out what we can do at this point, though – the genetics appointment is next week, early intervention is probably tearing through all sorts of paperwork and getting our therapy team lined up, and our ENT doesn’t have much for us until Alex can get his MRI done in March.

Despite the lack of appointments, we’ve been busy working with Alex on the minor issues that the physical therapist identified – neck strength and favoring his right side. Shannon and I have been very diligent on giving Alex plenty of tummy time, which has paid off well. Only a week later and he’s clearly MUCH better at getting his neck up nice and high, even if he’s still a little bit wobbly. We’ve also done a lot of work to encourage Alex to move his head to the left. That typically involves putting him on his side a bit so that gravity helps to push his head to the left (especially when sleeping) and putting him on the floor such that whatever action is occurring (Taylor playing with toys, the TV, mommy / daddy) is to his left. This has also paid off. He may still be favoring his right side, but at the very least it’s less noticeable at this point. Shannon and I hope to keep at it and see how much improvement we can get out of Alex before his PT appointment. Shannon has done some great research on head bobbling, and she’s identified that as an area we’ll still want to work on. According to what she’s seen, most kids’ heads generally stop bobbling by four months, so we only have a few weeks to get Alex to that point. I think that overall, we’re making great progress with working on Alex to address the issues the physical therapist brought up. It’s nice to see results!

A cool thing that I forgot to mention out of the audiology appointment we had last week was that part of the oral school’s “curriculum” includes a music class. I LOVED hearing about that. Shannon and I are both relatively musical people. Our favorite game of all time is probably Rock Band, we both like musicals, and we commonly have music playing in the background when we’re home. Taylor’s also quite the little singer.

Among the many things that hit me hard with Alex’s diagnosis was that he wouldn’t be able to appreciate that as much with us because he’d either be unassisted-deaf or be using cochlear implants (which currently aren’t known for being great with music). To hear that the school does any element of music therapy was wonderful, because it will be catered toward kids like Alex and it implies that, contrary to a lot of older stuff you’ll read on the internet, music isn’t useless noise to some of these kids. I can’t end this paragraph without also mentioning that there’s good stuff coming down the pipe for music comprehension through cochlear implants, too. I’m excited to know that Alex might be able to join his family of music appreciators. Shannon and I both want so much for him to enjoy Christmas music with the family next year.

On the topic of implants, I’ve still been doing a lot of research on implants so that if we’re eligible, we’ll know which direction we want to go and not feel rushed. At this point, I think we’d lean toward the Cochlear Nucleus 6 system. There are lots of good reviews from both adult users as well as parents of kids who use them that indicate that they sound “fuller” than previous models and that they also do wonderfully in noise compared to previous models. They’re also splash-proof! We like what we’re reading about them so far, and it helps that Cochlear owns something like 65% of the market. Technogeek note – they’re also the company who are known to be testing the fully-internal implant that I really, really want Alex to eventually get.

Despite all of the optimism and hope I think I’ve been showing here, it’s still really sad to know that our hopes, at least for the interim, will still involve Alex having a very obvious apparatus on his head. We’ll often read posts from parents on the boards discussing their strategies for dealing with when people ask about what the implants are (with varying degrees of politeness), and it just sucks to know that Alex will have to deal with that for an appreciable amount of time. The term “it’s just not fair” has been used quite a bit in our household. We’re still very grateful that the opportunity to experience sound and speech will be available to Alex, of course, but it sometimes pains me to look down at his perfect little head and know that, in some way, it’s going to be “spoiled.” When Alex gets his hearing aids, I’m sure that those shallow concerns will fade into the background if we know that he’s getting sound, but it’s sad to contemplate in the present.

What else… I think Shannon and I have found that it’s becoming much easier to talk about Alex’s hearing loss in a more matter-of-fact sort of manner without getting emotional about it. We went to a family party and Shannon brought the topic up very smoothly (everyone was probably wondering about it but afraid to ask), and we gave a general update regarding what we were hoping was going to be coming down the road. Being able to do this without getting measurably sad might not sound like much, but it’s a small victory and one that we’ll take.

Last interesting thing of note – Shannon has been visiting Alex at daycare during her lunch hours at work. It works out pretty well because her office is only a few minutes away from Alex’s daycare, it gets her some extra time with him that includes a little bit of physical therapy, and it also shows the good ladies who work there what sort of things we’re working on with Alex. During conversation with the teachers in Alex’s room, one of the teachers revealed that she has a daughter with hearing loss as well. Though hers was not enough to qualify for cochlear implants, she DID say that she has all kinds of experience dealing with hearing aids that have fallen out or are squealing, and so she can certainly help out when Alex gets his as well as be the go-to person for other teachers if Alex has any problems. Since we still haven’t found a nanny yet, that’s significantly comforting! One of our fears with leaving Alex in daycare is that we won’t be able to emphasize enough to the teachers how important it will be to keep his hearing aids / speech processors on or that they won’t know how to do it, so knowing that there’s a pro in the school really helps to alleviate that concern.

I think that about wraps it up for now – happy holidays!

The Early Intervention Evaluation / Plan Development Session

Last Friday was our first “big” meeting with the Early Intervention folks, so I wanted to outline how that went.

Three kind ladies came over; one was the EI coordinator that I had met with the week prior, one was a physical therapist, and one was a speech therapist. They introduced themselves, shook hands, took shoes off, yadda yadda. Very polite and kind, which I only bring up because this was a somewhat unnerving meeting for us. It’s easy to just write out what was happening and leave it to a series of events, but underneath everything there’s that feeling of “Wow, my kid is really in Early Intervention.” It was nice that the introduction to all of this was in OUR house and with non-clinical… humans. I felt that they were very considerate of the situation.

After the introductions, we basically got right to playtime with Alex. The ladies watched how he moved, cooed, reacted to us, etc. He was very well-behaved and even put on a bit of a show. After about twenty minutes of observation, the physical therapist made note that Alex was heavily favoring his right side, especially when laying on his back. She said that this wasn’t a MAJOR concern, but was still somewhat of a concern that we’d want to work on. She showed us a few exercises that we could perform and also emphasized that we’d want to give Alex a little more tummy time. None of that came as too much of a surprise. Shannon’s very perceptive and had noticed that Alex favors his side, and her equally perceptive mother had noted the same thing. As far as neck strength, we were admittedly much better with ensuring that Taylor had plenty of tummy time when she was a baby. I think a downstream effect of the gutpunch we received with Alex’s hearing loss was that some of those things fell more into the background. The physical therapist rated Alex as being somewhat behind where he should be at his age, but not by much.

The speech therapist noted numerous times that Alex was doing wonderfully with his cooing and eye contact. Hearing about his little speech was another both-good-and-bad moment. Great, he can coo, but he can’t hear himself and he’s going to stop eventually. The positive outweighed the negative, though, and we were thrilled when the speech therapist put his cognitive and speech skills ahead of Alex’s age. At least we have a little buffer! It was also nice to hear it validated that his eye contact was solid.

The next step of the meeting was to develop the plan. It was emphasized that we would be able to make any changes or tweaks as we go along and as we learn more about what’s going on with Alex, so we didn’t have to worry at all about oral vs. total communication or anything like that. That kept things pretty basic.

The output of that plan:

  • Alex will have a physical therapist that will check up on him once a month to see how he’s doing with his neck strength and to ensure that his right-side-favoring doesn’t become a real issue. Again, the PT wasn’t extremely concerned, but she did say it’s something that we should keep an eye on before his muscles get too used to the imbalance and it becomes more difficult to fix. Shannon and I actually like the idea that he’s going to get that individualized attention and have yet another set of eyes watching him for anything that might come up.
  • Alex will go through Buffalo Hearing and Speech for his audiological needs (hearing aids, etc). No surprise there.
  • Alex will have a speech therapist – I’m interested and excited to see what comes out of this at this young of an age.
  • Alex will have a teacher of the deaf. I asked what this person would be doing because I honestly didn’t know, and we were told that, for example, this person can make recommendations on what kind of toys we can get for Alex that are visual, how we can organize things for him, etc. I’m also really looking forward to working with this person and picking their brain.

We’ll have four appointments a month, and they’ll all be tentatively targeted to happen between 1:00 and 3:00 on Fridays at our house (which is huge!). That’s when Taylor naps and when Shannon’s mom is watching the kids, and it’s also one of the easier times for me to work from home or take PTO. I plan on being at as many of the appointments as I possibly can be. I really like the idea of Shannon’s mom being so involved because she’s a huge part of our kids’ lives. She’s already expressed how excited she is and she’ll take copious notes. Her readiness to do everything she can for Alex comes as no surprise.

That basically wraps it up. It was a whirlwind of activity that lasted for about an hour and twenty minutes, but I felt like Shannon and I soaked a lot of really good information up. We’ve DEFINITELY stepped up our game with the concerns that the PT brought up, and it feels good to be working on something with him / for him. I think we’ve already seen some progress; we’ll definitely keep it up.

My attitude toward Early Intervention is becoming increasingly grateful – I LIKE that Alex has all of these people who are going to be watching out for him and helping us know how to best steer him along the way. It’s like he has a team dedicated to helping him kick ass even above and beyond his hearing loss.

Next up – we have an appointment at Buffalo Hearing and Speech this week that I mentioned a few posts ago. We’re hoping Alex gets fitted for hearing aids and that we learn a bit more about the oral and total communication tracks that are offered. This Friday we’re supposed to have a follow-up meeting with the NICU Alex stayed at to follow up, but we’re hoping we can get out of it on the basis that we’re already in Early Intervention and getting evaluated, so there seems to be little point in wasting time by re-iterating that all is not honky dory. If we have to go to the meeting, however, we’re hoping to line up an appointment with the Genetics department there to get that moving along while we’re there. The hospital isn’t exactly next door to us and Shannon and I are trying to streamline these meetings wherever possible for the sake of our bosses’ sanity.

In other news, Alex continues to become an awesome kid. He’s very smiley and is starting to laugh a little more consistently, and he’s generally pretty easy going. He loves his family. I’m getting less sad about looking at him during these moments and getting my chin up higher as time goes on. It’s nice to see some of the initial pieces coming into place.