A few weeks in

I’ve been posting a lot less frequently, I think, because I think we’re really starting to run low on big events. We’re definitely on that road that we were pining for so badly a few months ago.

Alex had his second mapping session last week. It went well, and went much like the first. The audi chose a few different electrodes to map for each of his ears and increased the stimulation until Alex would react (cry), then immediately turn the stimulation off and mark where that reaction took place. She felt that Alex’s right ear was already pretty close, so more time was spent on his left ear. We were given four more programs to move Alex through. Our next appointment isn’t for another few weeks, but this next one should be exciting, because they’re going to put Alex into a soundbooth and test his reactions. That should give us an audiogram which will give us a semi-decent idea about what sort of sounds he can hear and how loud he can hear them at, but it’s still a little bit of guesstimating since Alex isn’t at the point yet where he can say that he picked something up. So that’ll be interesting.

MORE interesting, though, is how Alex is doing with his CIs in practice.

In short, he now reacts to sound. It was subtle at first. I’d make a loud noise and he might turn slightly, but I’d say there was a good chance that I was making it up in my head. I’ve been very skeptical given that we thought he could hear prior to his formal diagnosis. But no, not anymore, this is for real. After his last mapping session, something seemed to click. I’d say that about three out of four times, if his name is called and the environment is relatively quiet, he’ll stop what he’s doing and look for the sound. I doubt that he gets that when we say “Alex” that we’re directly referring to him, but frankly, who gives a shit at this point. His brain is at least starting to get the concept of sound and Alex is clearly making the connection that when his new sense goes off that something in his environment is probably happening, so that’s… well, it’s amazing. I was braced to not see any results for a few more months.

I told Shannon that in a way, I feel like Alex is almost “whole” again (running under the assumption he had hearing prior to receiving ototoxic drugs). Yes, he’s behind, yes, the quality of what he’s getting isn’t nearly as good as what those of us who have normal hearing experience, but… this kid now frequently responds to us making sounds.The simple act of seeing him look around for what made that sound relieves so much of that fear and anxiety that wrecked me over the past year.

He isn’t babbling yet, but that’s not really expected for another few months. I’m fine with that.  He’ll only be fourteen or fifteen months by that point, and it’s not like his peers are going to be reciting Shakespeare to each other.

Shannon ran to Target last week and picked up all of the toys that our therapists use for Alex’s speech session. I’ll probably describe it in detail, but the idea is you have two planes, two cars, two horses, two baby toys, etc. You associate a few words with each of the toys and repeat them to the kid over and over. The words should use LING sounds (which cover the spectrum of speech sounds). At first, the kid just soaks up the sound and makes the association that what he’s hearing, words, have meaning and relate to these toys that are in front of him. Eventually, the exercise will get to the point where if we just say “up up up” while Alex has a plane in his hand, he’ll move the plane up in the sky without seeing us actually do it to demonstrate that he’s only using sound to get his cues. Our therapists didn’t tell us that we needed to do it, but what they do there is so repeatable that it seems silly to NOT do it. We’re essentially giving him three times as much directed therapy as he would’ve received otherwise, and on top of that, he seems to enjoy it.

Speaking of therapies, I just signed the paperwork to get Alex bumped up to getting both speech therapy and teacher of the deaf therapy once a week instead of once every other week. Now that Alex has his CIs and is demonstrating that he’s getting something out of them, we’re all about maximizing the benefit that he can get. Our physical therapist was over last night and re-affirmed that Alex is doing fine physically. She’s guessing that he’ll be walking by late October or early November, and at that point I think she basically ducks out. We still don’t have any concerns about him physically. Haven’t noticed any balancing issues. Alex still likes to bob his head occasionally, but it’s become very obvious that he’s doing it just for fun. He’s also waving now, which is also awesome. Seeing all of the communication paths getting built is very cool.

What else.

Our audiologist has coordinated with our ENT to request an FM system and I know that our service coordinator has the paperwork for that, so hopefully we’ll get that soon and have another tool at our disposal if we’re in loud situations.

People staring at Alex for a little too long still bothers me, but not as much as it was before. Much of that, I’m sure, is due to the fact that I’m not looking for people who are staring, so that helps. It’s also nice that there are still folks who still stroll up and say “he’s adorable!” and the like. Regardless, my sensitivity to it is starting to go down, especially now that we’re starting to see some of the very real benefits. As always, I’m completely of the mind that the bulky and easily visible setup he’s using today is merely temporary, so that’s a positive thing to hold onto.

The headbands are still working wonderfully. He still tears them off his head occasionally, particularly if he’s bored, but the whole thing is still much easier than dealing with his hearing aids and, in general, just not really a big deal. No issues with the devices or any of the equipment. I can change the batteries out in like twenty seconds now. We definitely have a manageable groove now.

Daycare is still working out well so far. Every time I’ve picked him up he’s had his CIs on, and every time I ask how he did with them today I’m told that they were fine, had to be replaced a few times, but no major issues. I like that he’s “mainstreamed” already, even though it’s not actual school.

I can’t think of much else to jot down here besides that I think Shannon and I are definitely feeling pretty hopeful and happy with how things are heading. I don’t think I’ve had a “wah, he’s deaf” moment that was strong enough to put me in a garbage mood for a few weeks now, and I’m ecstatic with how he’s already reacting. His therapy team remains awesome and I feel like Shannon and I are doing a good job with him to make sure he’s getting all of the support needed to maximize his benefit with the extra therapies, so the buildup of momentum I’ve mentioned before is still in full effect.

Eventually I’ll start recording some of his hearing moments and putting them up here to show more concrete examples of the sort of stuff I’m talking about, but that’s it for now!

Advertisements

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.

A Little Optimism

This is a short one, but was ready for something a little more uplifting after my last entry.

I’ve spent a good chunk of my lunch break on Google looking up my favorite topic, hearing loss. Typically when I hunt around, it’s for news on the cochlear implant, but today I decided to look a little more broadly, so I searched around for “Deaf cure.”  I apologize in advance if you take personal offense to the combination of those two words, but it’s a popular search term. Also, you probably shouldn’t be reading this blog.

The results of the search were pretty cool. Just about everything I read was recent or semi-recent, and all projections were that a flat-out biological fix for dead hair cells, the most common cause for deafness by a landslide, were roughly ten or so years away. These weren’t written by over-optimistic bloggers like me, they were from real organizations and real studies performed that have traction.

This isn’t anything I’m going to cling to for dear life, but wow – if that comes to fruition and Alex has his biological hearing before he even hits his teens, no strings attached, no equipment… just an incredible thought. It sounds incredibly too good to be true, but it’s already happened before with Polio, measles, smallpox.

My favorite bit from a scientist who’s working at a solution using stem cells: “I do know when I see a baby right now who hasn’t any hearing whatsoever, probably in her lifetime, [she] will have regenerate therapy available for her.”

Yes, please.