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.

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.

Six Waiting Rooms and an MRI

Alex had a big date yesterday with an MRI machine.

Quick recap.  The purpose of the MRI appointment is to ensure that the anatomy of the cochlea / nerve is compatible with cochlear implants. If there isn’t a nerve present at all, the implants have nothing to interface with, and therefore that person isn’t a candidate for cochlear implants. The chances of this happening, from what I’ve read, are pretty low, but it’s still the big gateway to get green-lit for CIs.

The MRI for a scan like this takes roughly one hour to complete. During the scan, the subject is sedated to ensure there’s no movement and placed on a table that eventually gets sucked into a massive electromagnet. The interactions between the person’s body and the magnetism drives the imaging. Unlike a CT scan, MRIs don’t use radiation, and there are no known side effects of MRI scans (phew). Once the imaging is complete, the results are checked out by a technician and then forwarded over to the ordering doctor (in this case, our ENT). At least at our hospital, that’s supposed to take about two days.

So that’s the procedure in a nutshell. Here was our actual experience, super-detailed in case we ever decide in the future to share specific hospital names or meet people in the area who are going to go to the same places we are:

A few weeks ago, we received some paperwork from the hospital indicating that Alex’s appointment was to begin at 10:45, but we were supposed to arrive at admissions at 8:30. He wasn’t supposed to eat any food / milk starting at some ridiculous time. I want to say it was midnight. So… a six month old baby, not having eaten for 8 hours, arriving at admissions, and then having to wait for almost three hours until the appointment begins? Didn’t exactly paint a pretty picture. Shannon called and the nurses explained that Alex could actually have formula / breastmilk at 4am, and could have a clear liquid up to four hours prior to the appointment (so something like 6:30). That was much more reasonable, so we had our plan.

Shannon and I were both pretty nervous about this appointment because of the consequences it could have as well as the fact that our baby was going to be anesthetized, but luckily we were still coming off of that great physical therapy meeting and we had a pretty fun weekend to boot. It was always on the back of our minds, though.

Yesterday morning, we followed the plan and filled Alex up with as much food as we could as late into the game as possible to hopefully keep him happy. He slept for a little bit on the car ride in. Of course, we hit a minor traffic jam to drive up our anxiety levels just a little bit more, but we still arrived on time.

First stop was admissions. They printed off an ankle bracelet for Alex and threw it on him. No lines or waiting there, which was nice. The lady who took care of us sent us over to the security desk to get passes and told us to head up to the pediatric same-day surgery admission area. Security took about two minutes (no line again).

We headed upstairs to the surgery admission area. This was one of the roughest parts of the day for me. First of all, this is an old hospital. A replacement is being built and everyone will be shipped over to the new place in two or three years, but it’s just a dreary, old building. The area we walked into was basically a narrow corridor with seating on both sides and old floors, windows, etc. I realize I sound like somewhat of a snob here, but when you’re bringing your kid in for a procedure, it’s preferable to not get the feeling that he’s going to be getting 1970s-era technology in 2014.

More sad, though, was the other parents and kids. You could see the look of anxiety on the faces of everyone present. Some of the kids looked scared. One poor little boy had a trach installed (a tube in the throat that he breathes out of). Very handsome little guy, too. Just very sad to see so many innocent little kids affected with issues that they didn’t deserve. Brought me down a bit.

At this point, it was about 8:45 / 9:00, and our appointment wasn’t until 10:45. We were afraid that we’d be sitting in that room for another two hours. Luckily, Alex’s name was called after about twenty minutes. We were taken back and a nurse gave him the basic pediatrician’s checkup – she measured him, weighed him, checked out ears and eyes, etc. We got him out of his pajamas and into peach scrubs, which he rocked. She also went through the usual hospital questions around allergies, reactions to anesthesia, past surgeries. As she was finishing up another nurse came in and asked the same questions. My crappy memory isn’t telling me what the difference between nurse two and nurse one was. I think nurse two was associated more with the MRI folks whereas nurse one just did the general measurement thing all day long for anyone going through that same-day surgery department. Anyhow, once she finished up, we were sent to another waiting room.

Waiting room #2 was way, way better than #1. First of all, it wasn’t packed. Second, it didn’t look old and decrepit. Third, it had a TV going, and they even had video game carts where you could play Wii if you wanted. I thought that was a really nice touch to help distract kids who were about to undergo something scary. We stayed in that room for something like a half hour. Alex started to get fussy at this point to the point where Shannon and I had to take turns walking him around, but that calmed him down and we never hit an outright-screaming phase with him. A… guy (not sure if he was a nurse or not) came to the room to get us. We followed him into an elevator, where he took us down to where the MRI was. We were deposited into waiting room #3, which we had to ourselves. Alex was actually crying at this point, but Shannon pulled out her elite mommy skills and calmed him down, just about to the point of sleep. A nurse pulled us out of waiting room #3 to place us into waiting room #4.

Waiting room #4 was only about fifty feet from waiting room #3. Waiting room #4 was basically the consultation room; Alex’s last stop before hitting the MRI across the hallway. An anesthesiologist knocked on the door after about ten minutes and explained that Alex would be put under by first getting gas, then an IV. A tube would be placed partially down his throat to administer fluids if need be. Shannon and I had both been hoping that Alex would only need gas (the poor kid has been poked with needles way too much for a six month old), but we were assured that he’d be back up to normal by the next morning. He also said that the procedure would take something around an hour, and strangely asked if they were doing a brain scan, as if we were driving what they were going to do instead of what our ENT had ordered. I’m pretty sure that he was just looking for confirmation, but I certainly hope that that if we had said “full body” he would’ve raised an eyebrow. A few minutes later, they came for Alex, who was asleep at this point in his mom’s arms.

After leaving our keys / metal stuff in the waiting room, we walked across the hall and into the room hosting the MRI machine, which is pretty large and impressive. The thought briefly occurred to me that Alex was about to take advantage of a technology that wasn’t widespread twenty years ago and what sort of things he’d be able to take advantage of in the future.

We laid Alex down on a table and the anesthesiologist almost immediately placed a little gas mask over his nose and mouth (even with the binky still on). This was the toughest part. Our little guy was pretty combative and squirmy, probably from a mix of being woken up and having a mask placed over his face while being held down. Even though I knew that the MRI itself was harmless, seeing your kid get put under is a scary and emotional thing. I’d guess it took about thirty seconds for Alex to relax and close his eyes. We were shuffled out of the room and shown waiting room #5, but opted to go to the cafeteria and grab a mediocre lunch.

We were both obviously concerned, but I found a certain peace in knowing that the MRI procedure was no longer looming over us – he was getting it done, right now, working on putting it behind him and us. Despite seeing Alex put under, Shannon held herself together very well. We joked about how we hoped Alex would only have to go through three more procedures; implantation (first implants), re-implantation (fully internal implants), and ex-plantation (biological cure).

After lunch, we headed back up to the waiting room. They ran almost a half hour later than they said it would take. I’m not sure if that was because the hour figure was based solely around the MRI scan or if it included the anesthesia process as well, but it was scary when they were over fifteen minutes late. I had just walked out of the room to try to see what was going on when a nurse popped in looking for Alex’s parents. Shannon went in (only one parent can go in post-anesthesia, oddly). I didn’t hear anything back for about ten minutes, so I anxiously texted her. After a second text, she responded that everything was alright. A few minutes after that, she popped out with Alex, who looked groggy. Shannon explained that he was a little monster when he first woke up, and it took a lot to get him calmed down. I didn’t see it so I can’t really comment on it too much more, but it definitely sounded like it was pretty rough going for the little guy. Nevertheless, I was happy to see that he was calmed down with his mommy in the present.

We headed back up to waiting room #6, which was in the same area as waiting room #2, and were finally able to give him a big formula bottle. He was a little bit slow to take it. You could tell that his throat was bothering him a little bit. Shannon likened it to a bad cottonmouth, which seemed dead-on to me after seeing him. Anyhow, the idea of waiting room #6 (which was a check-up room) is that the nurses would take Alex’s vitals again and monitor him for a half-hour to hour, and if everything looks good, release us. Sure enough, we were let out at about 2:15.

It was a very, very tiring experience. I’m sure the majority of it was from the anxiety we felt. Alex took a huge nap when we got home, and when he woke up, seemed to be about his normal self. I gave him a bath to wash the hospital off of him and we had a pretty normal evening with him, complete with some tummy time and physical therapy. Felt very good to bring him home, and made me appreciative that, if Alex gets them, that he’d likely be home again the day he goes in for his CI surgery.

At some point before lunch today I’m going to be calling our ENT’s office to ask how long it would take to get the results back, and when they roll in, to PLEASE let us know as soon as possible. They likely won’t be in until tomorrow or so, but I want them to know that we are actively looking for this and are going to be a pain in the ass until we find out what’s up. I’m somewhat concerned about the extra amount of time that the MRI may or may not have taken. I have dark visions of the MRI operators saying “What’s this? Where’s that?  Zoom in.” sort of stuff. We’ll see.

As nervous as I am about the results, I’m still happy that the MRI is at least DONE. It was a big milestone and it’s behind us now, and even if the results come back and they’re not great, it’s still a step in the journey that we had to take and it’s been taken.

We have a dinner on Thursday with the oral-deaf school Alex will hopefully be attending. We’re hoping beyond hope that we’ll get good news prior to that and be able to look forward to the sort of things we suspect we’re going to see and the stories we suspect we’re going to hear at that dinner.

Done. Good results, please.  PLEASE.

Alex has Hearing Aids

2/18/14, 3:00pm

At some point in the past, I think I wrote about how I felt that getting Alex’s hearing aids would be a double-edged sword. Well, I guessed right.

It’s been an emotional few hours. Alex’s dispensing appointment ended just three hours ago at the time of writing this. The appointment itself was very straightforward. We arrived at the building with a few extra minutes to spare; the roads in Buffalo are somewhat messy today. In the waiting room, I saw my first cochlear implant user in person – he looked to be in his 40s and had one CI. The magnet was underneath his hat, somewhat hidden. I couldn’t stop looking – not because it was weird, but because I’ve done so much research on these and had yet to actually see a person wearing.  He was at the office with his daughter. Our audiologist approached them both in the waiting room with a few CI parts – it was then that I saw that the daughter also had a CI. She had a light speech affect when she spoke, but I later learned that she was implanted after having been in school for a while with hearing aids, so she learned to speak based on them. Regardless, it was amazing to see. Aside from the SLIGHT affect (which I was actively listening for), you would never have known she was a CI user. Of course, it helps that the daughter had long hair, but still. Just very cool to see.

When the audiologist was in the waiting room taking care of the family I mentioned, she spotted a few other patients, gave them hugs, exchanged big smiles, etc. Loved seeing that sort of interaction. I’ve felt that our Early Intervention team is truly going to be a major influence on our lives, and to see her genuine reactions was both touching as well as exciting as a parent who was about to start down the path with her.

We met with our audiologist on time (you really begin to appreciate these things after you go to enough doctors appointments). It was my first time meeting her, but between what I’d seen in the waiting room and all of the recommendations that had pointed us to her, I already had a very positive first impression.

As far as the dispensing process went, it was an understandably clinical affair. The casualness of it was tough to deal with, though. Shannon and I, up to this point, hadn’t had to deal with anything visible on Alex indicating that he was deaf. He’s still so young that his deafness isn’t evident in our everyday interactions with him. So after our audiologist put Alex’s hearing aid into his little baby ear for the first time, it hit hard. I knew it was coming, but that action seemed to bring a close to one phase of his life, where no one would know that he had any issues and where his physical needs were that of any other child, to an end. A wave of sadness passed over me, and I knew it had to Shannon as well, who was brave enough to hold him throughout. This didn’t last for entirely too long for me, though. The rational part of my brain kicked in and I reminded myself that we’re doing all of this so that Alex will be able to experience sound, and that’s the goal. This isn’t going to be easy or handed to us or him, and I think it would’ve been odd if WE were very casual about it. I wonder if parents who have to get their kid glasses go through something similar?

His hearing aids are pretty small, even on his little ears. We chose a silver color because we wanted to give him a spiffy color without it being insanely fluorescent, but also didn’t want to try to completely hide them with a clinical beige. Our audi (let’s go with that to keep things short) explained how to insert them into Alex’s ears, how to change the batteries, how to store them, etc. She told us about next steps, which involve testing Alex with his hearing aids in a sound booth, and tweaking the aids (which basically means turning up the power). After she finished with the boilerplate, we talked about Alex’s upcoming surgery date; she was surprised that we had one that early. She also explained that she’s worked with our doctor quite a bit, and that he does somewhere in the vicinity of 50 surgeries per year. That’s quite a lot if you think about it. She also stated that if she had a child who was going to get a CI, that she’d go through him. That was all great information and very relevant; Shannon and I have talked a lot about how, if we find out that Alex is eligible for implants, that at that point we’ll really research doctors and surgeons across the US to determine who we should go to if our current surgeon didn’t have a lot of experience. It’s good to know that if we’re lucky enough, it’ll be less of a decision to make.

After the mini Q&A, we made two follow-up appointments. One for Alex’s next hearing aid tweak, coming up in a week or two, and one for his activation(!) for the week after the fourth of July. I tried to see if we could get in beforehand so that Alex might be able to hear fireworks, but in reality, there’s no way we’d have the kids up that late at night anyhow. Ha. Our audi gave us a little bit of insight into the activation process – it’s about two hours long, and the idea for the first “stimulation” is to give the child just enough sound that they visibly respond to it. She explained that usually, the reaction is annoyance. Then she takes it back a step. At subsequent appointments, the sound will be brought up and up as the child learns to tolerate their new sense.

By the time we finally left, Alex was clearly tired. His hearing aids were out for the car trip, because they will whistle if they’re close to a surface, like his car seat. We left to pick our daughter up from daycare. I think Shannon and I were both in relatively good spirits afterwards, though we were both on the same page of regarding the moment his hearing aids were first put on as being a really big deal, even if he’ll only be wearing THOSE for a few months.

Things got tough when we got home.

We put Alex’s ears in, and had trouble getting them to stop whistle. Most of you have probably heard what a whistling hearing aid sounds like – it’s a quiet, but annoying screech that has a weird digital quality to it, like a really bad MP3 downloaded from Napster circa 2000. I was having a lot of trouble getting the sound to stop. What made it worse was knowing that that sound was being blasted into his ears. Now, I know that he’s deaf and can probably barely hear that if at all, but that whistle is a very blatant reminder that my son can’t hear. I took a big emotional dip here. As I said before, Alex is at an age where you wouldn’t know that he had any hearing loss or anything else wrong with him unless you were going out of your way to test his hearing. Now, all of a sudden, there are two devices visibly strapped to his ears and this goddamned sound that’s coming out of them every few seconds. It completely broke my heart.

Taylor was in the room while Shannon and I were wrestling with Alex’s hearing aids – she took immediate interest. I know that this probably sounds like it’s a good thing, and Rational Me says you’re right, but I couldn’t help but feel hurt by it. I don’t think Taylor has really “gotten” that Alex can’t hear her, and now she did. I felt sorry for her, as if something was just taken away from her as well. It was a stupid thought, but you can’t trump emotion with rationale, so I welled up a bit.

We placed Alex on his bouncy seat with his hearing aids on. I was somewhat pleasantly surprised that this didn’t make his aids whistle too badly, even though they were clearly going off every time he moved his head too far to one side. Shannon got her camera out and snapped a few shots. Alex was still whistling, so I took him out of his chair and laid him on my lap as I sat down. His ears were still whistling. It was another dagger to the soul – I can’t even hold my own boy now without his disability coming into play. I know that we’ll figure out how to get the whistling down and that we’re going to learn how to deal with it like it’s second nature, but it’s a very visceral punch to the gut.

I put Taylor to bed for her nap and came back downstairs. Shannon flipped her laptop around and showed me one of the beautiful pictures she had taken of Alex, and it immediately brought me to tears. No particular reason, just the straw that broke me down from the whirlwind of the day’s events.

Alex Hearing Aids

2/18/14, 5:00pm

Well, got the above out of my system. As it turns out, the abundant whistling that we were experiencing out of Alex’s hearing aids was just because we didn’t have them in his ears completely, causing them to feed back. We both knew that could happen, but I had thought I had them in good enough. Shannon figured it out like the warrior genius that she is, and the whistling subsided almost completely. I quite love this woman. Anyhow – I was holding him as usual, sans whistling, shortly after. Huge relief. The whistling was just the salt in the open wound, so for it to go away was very good for my psyche despite how silly that might sound.

Afterward, I headed outside to shovel out the driveway, which gave me a little bit of time to think and put things back into perspective. Knock on wood, but right now, he isn’t in a wheelchair / paralyzed. He isn’t dying. He has a very common ailment that’s being aggressively worked on, from multiple angles, to either nullify or flat-out cure. His first assistive devices will be the bulkiest and crudest he’ll ever use. I walked back into the house feeling just a little bit better. It was tough to submit to putting equipment on my son, and it’s going to be tougher to actually put him through a SURGERY… but you know what? We’ll bust our asses for him and persevere. I know our boy is going to amaze us every time I look down at him and he gives me a huge smile back, as if he’s telling me that he already knows that everything’s going to be completely fine.

It was a roller coaster of a day, and as I told Shannon, it won’t be our last.  It’s a tough road, but it’s still one that we’re happy to be on given the circumstances. It’s all worth it to slowly open the world to him. One step at a time.

Alex has a Surgery Date

Last week I received a call from a phone number I didn’t recognize. Six months ago, my usual strategy was just to ignore all of them and listen to voicemail to make sure it wasn’t spam or recruiters, but I now get a little excited every time the phone rings since it might be Alex-related.

I was in the middle of a meeting when my phone lit up, but I ducked right out of the room to pick it up. It was Alex’s ENT, and they called to casually tell me that they had set a surgery date to install his cochlear implants, on June sixth. I was stunned. Our MRI to determine his eligibility for CIs isn’t going to happen until March, and our last appointment with our ENT was literally back in December with no other movement or communication really occuring since.

The person I was speaking to (who wasn’t the doctor) basically explained that they were basically just blocking off a slot of time for Alex’s surgery before the schedule became too hectic, and that a surgery was still completely contingent on the MRI results and another consult or two with the ENT. They were blocking off time for a roughly five hour bilateral surgery (i.e., they will install both of his implants at the same time, which is what we want), and potentially (only potentially!) an overnight stay at the same hospital Alex spent his NICU time at.

So even though I understand that from the ENT’s perspective that he’s just booking out time, it still has two key implications:

  1. The FDA recommendation of waiting until one year of age for implantation is going to either be a non-issue or that they feel that the case to make is going to be simple enough that it’s not worthy of holding his surgery up
  2. That Alex will be implanted just prior to his nine month birthday and likely activated just before the fourth of July, giving him almost three more months of hearing than those who wait for a year (a VERY SIGNIFICANT amount of time).

It was a fantastic call to get. We’ve built up so much momentum now between Alex’s early intervention team (of which the key members work at the oral school) and now his surgery that it’s going to be nothing short of a devastating blow if we come to find out that Alex won’t be able to get CIs due to anatomy, but at this point I think both Shannon and I are willing to take the risk that all of that momentum will be for nothing if it also means that we’re firing on all cylinders if we get the go-ahead.

I got off of the phone and immediately messaged Shannon with the news. She was just as thrilled as I was, if not more. As I was writing to her, it occurred to me that our little guy might be able to hear fireworks on the fourth of July this year, and that he might even squeeze a word or two out by Christmas of this year. Just incredible to think about.

We’re both very excited to have an actual target already. We weren’t anticipating on getting it for at least another month, and even then that we’d have to battle tooth and nail to get Alex implanted as early as possible. To see that they’ve even tentatively booked a surgery slot for us is a true relief.