The First Few Days Post-Activation

A few more notes about activation day…

A question we got asked a lot on Facebook and through text messages was how Alex was reacting to sounds – the answer was that he wasn’t at all because his program was set so low. No big deal, but I was a little surprised because I hadn’t read that after activation, the users still don’t react to sound until after a few mappings. No big deal, though. Given his crying reaction, I’d rather he be eased into it rather than thrown into the deep end and hate it.

When we got home and put the processors on, it was pretty tough to actually keep them on his head. Cochlear ships their processors with Snugfits – they’re basically a piece of bendable plastic that hugs the ear to help keep it on.  It looks like this: 

They actually didn’t work HORRIBLY, but Shannon and I counted having to replace the magnets (aka coils) 15 times for Alex in the span of an hour and a half. The Snugfits worked reasonably well when he wasn’t doing anything too crazy, but the kid’s almost a year old; he’s doing a lot of crazy stuff, throwing himself around, standing up on things, etc. The Snugfits didn’t really stand up to that sort of abuse. Every time Alex reached up to his head, we expected the processor to come off. Worse, we couldn’t really pick Alex up and snuggle up with him without expecting that his processors were going to fly off.

This all added up to a lot of stress and felt familiar to the feeling we had when we were wrestling with his hearing aids, albeit not quite as bad due to the lack of feedback and the knowledge that unlike the hearing aids, that his CIs were ACTUALLY doing some real good for him. The stress inevitably lead to a few more conversations about how unfair this was to Alex. We felt relieved when he took a nap, because that was a break from watching his every mood and anticipating having to replace the equipment on his head.

At one point we tried using a headband that we’d read a lot about, called Hearing Henry. We tried using it with the Snugfits still installed, but we couldn’t get it to sit on his head correctly at the first pass so we gave up on it quickly in favor of just getting them back on his head. Shannon and I agreed to mess around with the headband after he went to bed to see if we could figure it out.

I’d say ignoring activation, day one was really about starting to get acclimated and process everything that had been given to us, starting with just keeping the things on his head.

 

Day 2

At the end of activation day, Shannon and I resolved to give the Hearing Henry headband another shot. This time, I removed the snugfits, and Shannon put the headband together. When Alex woke up, we threw it on his head, and… thank god.

I have nothing but good things to say about this thing. It holds the processors to Alex’s head and does it securely, so I’m no longer watching him every second and expecting to see a processor about to come loose, on the floor, in a mouth, or even worse, flat-out missing. The headbands weave the wire that connects to the coil (magnet) through them, which basically means that when the magnet falls off, it’s always generally in a position such that you can just flip up the magnet easily. Add it all up, and basically this piece of cloth has greatly made the CIs a lot easier to keep on Alex’s head, which is actually a huge deal.

This might be self-delusion talking, but I also find the headband to be sort of cute and maybe even less weird-looking than the snugfits. I’ll eventually post some pictures of what all of this looks like (I REALLY need to include the activation video on the activation post, derp), but I think Alex actually looks sort of cute with him on.

That said, there’s no doubt that he’s still wearing equipment on his head. You can clearly see the magnets are still there, and the processors are still visible. That’s completely fine with me, though, because it’s more functional and frankly, I’d rather Alex “own” his CIs than try to hide them, and instilling that in him starts by my leading by example as his parent. I’m already envisioning putting Bills / Sabres logos on them and the like.

After Alex’s first nap, we bumped him up to the second program on his CIs, which were a volume level up from the first. I was all ready to flip back to the first program if it proved to be overwhelming for him, but the kid handled it like a champ. I don’t think he so much as flinched. We experimented with loud noises to see if he’d react again, but no such luck. Not unexpected or disheartening in the least at this point, though. Speaking of reactions, though – Alex definitely lights up a little bit when we first put his processors on after he sleeps. So there’s no doubt that he’s getting some signal.

We decided to go out for lunch to get the kids out of the house. This was Alex’s first outing with his equipment and I was anticipating some double-takes and the occasional stare. I think Shannon was as well, but we didn’t really talk about it too much on the walk over. When we arrived, Alex definitely got some looks. I keep telling myself that 95% of the looks he’s going to be getting are from curiosity, especially because in my heart of hearts I’d probably do a double-take as well despite knowing what they actually are. All of the other parents on the CI board that we read say the same thing – that anxiety eventually just outright disappears. It’s the outright gawking and murmurs of “what’s wrong with him” and “OH MY GOD WHY DID YOU ABUSE YOUR CHILD WITH THOSE THINGS” crowd that makes me more leery, though. At the restaurant, we got a lot of looks, but it’s gotta be said that I was actively looking for them. Shannon did notice a mom and her daughter who were sitting behind me that were outright staring at Alex and making remarks to each other about it with gross looks on their face to the point where Shannon was staring back at them for a good 15 seconds and they didn’t notice.  Again, I get the looks, but… a little tact. I’m still formulating how I’m going to handle the stares. Right now, I think just stating “You’re staring.” in a loud, matter-of-fact tone is the leader, because it’s a simple observation, yet it’s loaded with embarrassment and shame. Ha. Regardless – I was proud that we put that milestone behind us.

That about wrapped up day 2. The headband did an awesome job and made keeping the CIs on a relative cinch which lead to a relatively stress-free day and we got the first outing behind us. I went to bed that night with a feeling that this would be doable for the next five years until Alex gets his next upgrade, which are practically guaranteed to be smaller / easier to deal with than these. Good feeling, big win, go team.

 

Day 3

Day three was rather unremarkable. In fact, I only have two bullet points written down – he flinched a little bit when we turned his CIs on again for the morning, and we moved up to program three. Shrug.

 

 

We’re now on day six and on the fourth program, which is right where our audiologist wanted us to be. We haven’t had any major struggles with the CIs dealing with them ourselves, and the headband has kept things completely sane. Tomorrow is Alex’s first day at daycare, though, so there’s definitely some anxiety over how that’s going to go. Shannon wrote a great one-pager for the ladies watching over him which basically equates to “Keep them on him when he isn’t sleeping and here’s how you get the headband on!” which is probably all that’s necessary at this point. We plan on asking the good teachers at Buffalo Hearing and Speech if they can stop in at daycare and show the ladies some more about them, like the programs, what the buttons on the processors do, troubleshooting, etc. I’m really hoping it goes well, but I have faith in the teachers there. They took outstanding care of Taylor when she was in that room and they’ve all been following Alex’s progress steadily so they’re clearly invested in him.

That catches us up. I’m stoked that Alex is no longer just floundering – he’s on his way to catching up. Every minute those CIs are on him, he’s building up his foundation to hearing and speech. Excited and grateful.

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The Day Before

When I first started researching CIs after we found out that Alex was deaf, I was really interested in getting an impression of how parents felt prior to the surgery. What I could find was pretty sparse, usually just one-liners about it being but scary but exciting, so here’s my opportunity to jot some things down.

Overall, it’s a crazy mix of emotions and thoughts to the point where I feel somewhat numb because there’s so much going on all at once.

I can barely believe that this is happening tomorrow, first of all. It feels like we’ve been waiting for this day for years now, even though it’s only been a few months. It seems crazy that tomorrow we’re going to walk into a hospital with our boy without an implant, and (hopefully) walk out with our boy with one. There’s been so much hype to sending him down this road that it’s staggering that he’ll have the raw materials needed for hearing in less than the span of a day.

Despite Alex being deaf, I feel lucky that Alex is getting his CIs early, that he was eligible for them, and that that technology exists today, and for all of the advances he’ll see in the future that will hopefully continue to take away the compromises he has to make as a result of his deafness.

I feel blessed and overwhelmingly grateful that we have an awesome team already assembled and ready go for him. In fact, his speech therapist texted me today and told me that she was thinking about us, and to keep her in the loop. I was telling Shannon that it’s such a small gesture on her part, but it means the world to know that the person who’s going to help drive Alex’s speech is already so invested in him. I know the others on the team feel the same way as well. The same, of course, goes for both of our families, who are going to support the crap out of this kid.

I’m incredibly heartbroken that his perfect little baby head is about to be cut open and sewn back together. There’s no real way to lighten that up without being dishonest. I know that we have a great surgeon and that from the pictures I’ve seen, that healing is quick and the scars aren’t really visible most of the time, but I utterly despise the fact that we have to do that to our baby in order to give him his shot at what so many other kids have by default.

I’m scared about the surgery for a few reasons. As helpful as the Facebook CI boards have been for us, today they’re filled with posts about post-op scariness in the way of swelling, infection, that sort of thing. This is a pretty straightforward surgery, but there’s no such thing as a surgery without risk. On top of that, Alex has developed a cold in the past few days. Last night he was coughing frequently through the night to the point where he woke up; I had to “fix” him a few times until he finally went down. Even then, he was coughing through the night. Our sleep was not the best, and I’m sure Shannon’s was even worse than mine. If Alex is too sick (and the criteria for what that means seems to vary), his surgery could be postponed. I feel in my gut that that isn’t going to happen if not just because kids are ALWAYS sick and, on top of that, I think that he just has some post-nasal drip, but the possibility is there. Luckily he’s home with his aunt today, and she’s reporting that he’s getting plenty of sleep, is eating well, and isn’t snotty or coughing much.

What I’m really trying to hold on to, though, is my excitement to get this kid going. Shannon recently blogged about how much it sucks to see that Alex is REALLY starting to get behind his peers now in terms of speech and language. It’s scary to see it creeping on and know that it will only get worse as time goes on without any intervention. There have been a few awesome videos on the CI boards recently that show what some of these kids can accomplish even after just two or three months; the two that come to mind are one that shows a child reacting to words without any visual aid and another of a boy who was babbling and then said “bahbah” or something similar. It completely blows my mind that, if we’re lucky, Alex could be babbling and even give us a word or two by Halloween or Christmas. And what a difference one year would make. Last Halloween we had learned that Alex had some degree of hearing loss, but it wasn’t known exactly how much it would be. We were thinking hearing aids might’ve just been able to do the trick. We were sad, but it wasn’t the end of the world. By Christmas, we knew that he was deaf and were just crawling out of the resulting pit of depression. I think we really lost that Christmas, which is a time that our little family usually loves, so the mere idea of him babbling or having a word or reacting to sound this time around would be a complete and amazing 180 from last year’s experience.

The roller coaster analogy seems very fitting here. It’s sort of like when you’re being taken up that first hill and you look around and can see all the twists and turns, but you can’t see the entire track laid out and trace it from start to end, so you just settle back and get ready for the ride, because there’s no getting off now anyhow.

I should also say that I’m very proud of Shannon and I for getting to this point and staying sane. It’s pretty awesome to know that our marriage not only withstood this initial shock, but made it just a little bit easier to deal with because I know that I had her in my corner. We’ve luckily been on the same page with all of the important decisions; there was never a big heated debate for us about whether or not to send Alex down this route or not, it just boiled down to “do we want him to have this opportunity?” and the answer was always “yes.” We certainly think differently at times, but I think the differences are complimentary and beneficial to us as a team. We’re both invested as hell in this kid and maximizing what he can get out of this approach. Countless conversations have been had strategizing how we’re going to give this kid the best go at it and what we can do to support and cheer him on. We’re going to jump at any opportunity to help him along and give him a kick-ass life, we’ll spend whatever amount of money it takes. We’re a focused team and giving 100% to Alex feels completely natural, not something impeding on our lives.

If you’ve looked up any deaf / CI stories about kids who went the speech route, you’ll know that the surgery is really the beginning of the story, but I think that the surgery is to the beginning of that story as stepping out of an airplane is to going skydiving. Tomorrow, we commit to a decision that will have some permanent implications, but I really feel that we’re doing the right thing for our own child.

Anyhow.  If we’re lucky and everything goes smoothly, tomorrow Alex will get his surgery. It will take about six hours. After a few hours of observation, we’ll be able to bring the little guy home tomorrow night (for anyone who cares enough, I plan on posting updates here in the form of quick posts). He’ll have a bandage on his head for one or two days, and when that comes off, the incisions will heal pretty rapidly afterward from what we’ve seen. He’ll have a post-surgery appointment during which we’ll be told that he’s healing wonderfully so far. For a few weeks after that, he’ll continue to heal up. We may or may not put his hearing aids back on just to make sure that he stays used to the idea that he’ll have stuff on his head. We’ll keep pushing him to get crawling and moving. A few days after the 4th, Alex’s CIs will be activated and he’ll be exposed to the world of sound.

I’m definitely afraid that everything won’t go as smoothly as above, especially because most of our experience with this little troublemaker has been the opposite of smooth, but… I’ve got faith in this kid and the supporting cast. I think we might just get our Christmas babbles this year, but there’s only one way to find out.  It’s time to take the leap.

The Big Day is Sneaking Up

It’s pretty crazy to write this and think that a week from now, Alex will have undergone his CI surgery to place the electrodes into his little cochleas and give him the foundation he needs to be able to start hearing us.

I feel strangely calm about the whole thing. I think most of that is because Shannon and I have both done our research on the surgery and, maybe more importantly, we’ve seen a significant amount of parents post on the forums we read every day about how they went in for surgery and it was a relative cinch. It’s also nice to know that it’s very likely that he’ll be home the day of his surgery as well. We’ve already seen Alex go under from anesthesia twice now and know that he doesn’t have any really terrible reactions on his way out, so that’s not a huge concern either.

I’ve written before that I have a lot of conflicting feelings about the surgery, but the one that trumps the rest is that it’s going to be great to just be done with it. The thing I get the most emotional about is when I look at his perfect little head and think about the fact that he’s going to have scars on it for the rest of his life unless he goes out of his way to undo them (and we WILL give him that option down the road if he wants it). The implants being in his head don’t bother me too much because I’m completely of the mind that over the larger scheme of things, they’ll be temporary (based on the stuff being worked on now and future tech), and they’re going to enable some wonderful things that he simply doesn’t have access to today. I’m completely encouraged by the results that other parents have gotten in the past using older technologies and therapy methodologies, and it’s comforting to know that whatever solution we give Alex now, it’s going to be the most crude he’ll ever have to deal with. It’s only getting better as time goes on – just ask the parents who went through this in the 90s when processors were still body worn and barely gave access to speech.

All of this said, I have no doubt that this is going to be one of the toughest steps of the journey. Friday’s going to be tough, and I’ve often read that the surgery day is one of the hardest parts of the beginning of the journey, but the good news is that it’s relatively downhill from there. We’re going to have our issues, we’re going to have a lot of speech therapy to put the little guy through, we’re going to have to advocate for him, but I think that stuff will be a little easier to deal with because we’ll have a lot more control in those situations.

Even after all of the hours of researching and reading blogs of the parents who have already gone down this path, it blows my mind that in a month or so, my son is going to be able to hear me say his name, his mom tell him she loves him, and his older sister sing “Frozen” over and over again. I’ve brought up a few times with Shannon since we got our surgery date that I was stoked that Alex would have his “ears” for Christmas this year, especially since I feel that we were sort of robbed of a good one last year since the news that he was deaf was still very fresh at that point. One year later, he MAY be saying a few words here and there. Just awesome.

It’s going to be a hellishly long five or six hours. But I can’t wait to put this puppy behind us and get to the good stuff. There’s a light at the end of this tunnel.

The Pre-Surgery Consultation

Last week we met with our ENT who will be performing Alex’s surgery a week from this coming Friday (wow). We weren’t really too sure what to expect from this, but figured it would just be the surgeon giving us the quick breakdown of the procedure and for us to pick out all of Alex’s CI equipment. I asked in advance if Alex actually needed to be there and the receptionist said “yes,” so we brought him along.

After the typical 15-20 minute wait, the doctor came into the waiting room we were huddled in, greeted us, and simply asked if we had any questions. That caught both Shannon and I slightly off-guard, as we thought he was going to basically walk through what the surgery day would be like and ask questions based off of what he said. We’ve already done a great deal of research on the subject so we didn’t really have anything specific to ask, so Shannon asked the doctor if he could describe, in general, how surgery day would go. His response was “It’s going to be a long day,” with a smirk. We were both a little bit annoyed with that response, but I didn’t actually hold it against him for saying that. This is a guy who does these surgeries on a weekly basis and sees countless patients. What’s a scary five hour surgery to us is just a mundane procedure that he’s done hundreds of times to him, so I’m sure that’s sort of a natural response. Of COURSE it would’ve been nice if he had recognized that he had two concerned parents in from of them and treated the question that way, but… I get it. We’re quickly learning that doctors operate efficiently by being clinical. It might seem cold-ish at times, but the only thing that matters here is that we’re with a great doctor who’s going to get the job done. That’s all that matters at the end of the day.

We didn’t really have too many other questions. He noted that because Alex has ear tubes that we’d probably see some blood draining through them after the surgery and to expect that (good to know), and that Alex would LIKELY be able to be taken home the day of the surgery. That’s also huge. He’s going to place the magnet (the circular part of the CI) about four centimeters behind his ears, which I actually prefer to some of the other setups I’ve seen where they’re a good three or four inches away. The only other thing I can think of that he said was that Alex would likely be the youngest patient there, and therefore would be the first to get his surgery, which is slated to take roughly five to six hours. We thanked him again for pushing our insurance company to pre-authorize Alex’s surgery and asked about when we’d need to pick out Alex’s gear and accessories, so he sent us over to one of his administrative folks.

Shannon and I have been very interested in how the accessory process would go, since we couldn’t really get a good dial on how it worked in general. We knew that you got to pick out a few things, but weren’t sure if you were capped at a certain cost and what would come with the CIs out of the box. Oh, and to clarify – the accessories we’re talking about are things like molds that cover the CIs so that they can be used under water, remote controls that show the status of the CIs and can switch through their various programs, audio cables, that sort of thing. I had tried looking at Cochlear of America’s website to get a feel for this, but for whatever reason, I could never get it to show up properly in the browser.

Anyhow, choosing the accessories was relatively easy. Most of the stuff we wanted to get came standard, we got to pick out a remote, and we even get to select two additional accessories in a year, which is a nice touch given that there’s going to be some interesting wireless stuff coming out for the CIs that Alex is getting. We went with black CIs, but they can be skinned easily if he wants to customize them down the road. We were pleased to learn that a new waterproof accessory that Cochlear had just come out with would be included in the package for free. Nice to know that Alex will be able to enjoy sound when we take him to pools and the like.

And that was about it. I would’ve preferred if the doctor didn’t just ask us if we had any questions and had given us a quick breakdown of the procedure and it also would’ve been nice if we could’ve really studied the accessory list at home, but overall it wasn’t bad. Oh, and Alex was never looked at or checked out, so he didn’t ACTUALLY need to be there. Would’ve been nice to have just let the little guy stay at home, but not a huge deal.

Next time we see the doctor, it’ll be the day Alex goes in for his surgery. It’s exciting and scary at the same time, but we’re eager to just bring him back home and start the healing process and get this kiddo moving.

Mission 6/6: Success.

Yesterday Shannon got a call back from the insurance person she had spoken to a few days ago with the wonderful message that we had actually been pre-authorized. This means that Alex is now a go for his 6/6 surgery and will have a few extra months worth of hearing than the current FDA-recommended minimum. By the time Alex goes to his oral-deaf school, he will already have eight months of hearing under his belt.

I think I’m still in shock. I was fully expecting that we were going to have to file a formal appeal. We were all ready to start pushing things and calling whichever party had the ball in their court until we had our approval, but it wasn’t necessary.

I wish I could say what EXACTLY got us pre-authorized if it would help anyone else, but we can’t be 100% positive. Our theory is that the pre-auth department opened the case, saw that our surgeon had already stated why we wanted to go in early (I want to get whatever he sent in and post the important bits here), and also saw that Shannon and I were all over the process and clearly were ready to appeal hard, and decided at the end of the day that it’d be more cost-effective to push us through on the basis that they’d be paying for the operation a few months down the road anyhow.

So we’re thrilled. Alex is going to hear when our family and friends sing “Happy Birthday” to him in September, and he’s going to be soaking up sound when he’s still young. This is his best chance to have age-appropriate speech at the youngest age possible, and even though therapy and our work with him is going to be a huge part of the battle, it all requires the raw materials to be in place and now we’re in position.

Next steps: We have an appointment scheduled with our ENT / surgeon in mid-May to ask any questions we might have about the procedure and pick out what sort of accessories (remote control, extra cables, batteries, etc) we want to get along with Alex’s cochlear implants.  We’re still thinking we’re going to go with the Cochlear N6s. I want to see the full list of accessories we can get for it as well as an idea for what the limitations are on how much stuff we can get, but Cochlear’s website is basically a pile of shit so… we’ll see.

Thrilled to be in this position, though. A lot went down this week.

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.

MRI Results

Yesterday was another big day. We got our MRI results back and also went to the oral-deaf dinner, which was pretty cool. The latter deserves its own post so I’ll hold off on that for the moment and get to the test results.

I called our ENT’s office on Tuesday, the day after the MRI, just to let them know that we’d finished it and would love to know the results as soon as they roll in.  They recommended that we call back on Thursday, which was the same timeline the hospital gave us.

Thursday morning rolled around. I called at about 10am, and the receptionist I spoke to told me that the results were in, but the doctor didn’t have a chance to look at it yet. Argh! She made another note on our account saying that we had called again and said that the doctor would almost certainly be able to get back to us today.

At 1:30 or so, I got the call. I didn’t recognize the number, so I immediately picked it up, and I’m pretty sure my heart rate doubled in a span of three seconds. I was speaking to a nurse and not the doctor, so I got the short version, which is… Alex is completely eligible for cochlear implants. No issues with his anatomy, no catches, nothing weird going on except for some fluid around his inner ear, which the nurse was quick to say was likely just from a cold, which Alex has. It was, maybe, a thirty second conversation.

So, there it is. Alex is cleared, and he is going to hear. We can stop saying “if Alex is eligible” every time I mention CIs. We don’t have to do any more research on brain-stem implants or worry that we’re getting ourselves too psyched up at watching what kids with CIs can’t NOT do, etc. I’m still not sure if I’m in shock or not, but I know for sure that I’m greatly relieved. The chances of him not being eligible were always slim, but the stakes were really high.

So with that huge, massive, gigantic breath of relief, we’re going to have a surgery coming up in June. I think our next steps are to have another appointment with the ENT (if they don’t call me in the next week, I’ll be calling them) to talk about the procedure and I also want to make sure that health insurance is lined up, pre-approved, etc. Our health insurance was really good about approving his extended genetic testing as well as his MRI, so the track record is good so far. This, however, is a 150k cost. Hopefully they’ll play the game the same way and Alex will be hearing us in July.

I feel like we can start enjoying life just a little bit more again.