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.



It’s been a whirlwind day.

Before I talk about activation, I thought I’d make mention of the weeks leading up to this event. Shannon and I have both been excited to get Alex going, but we also had our (now well-documented) anxieties of dealing with the equipment and keeping it on him, dealing with the looks he’s going to get, etc. Driving to the audiologist’s office at Buffalo Hearing and Speech this morning, Shannon described herself as feeling a little bit numb, which I could definitely relate to as well. There was definitely a feeling of running on autopilot, not expecting any miracles. In fact, we were somewhat ready to hear disappointing news; maybe one of the implants wasn’t working well, maybe all of the 22 electrodes weren’t in the ears… who knew.

Another thing that I think was on both of our minds was that getting Alex activated wouldn’t suddenly fix things, even with all of his therapy sessions. There’s a lot of work and no guarantees.

So, we walked into the office numb with low expectations.

Our audiologist and one of her student assistants pulled us back into one of their offices. We had two pretty sizable briefcase-ish things waiting for us, full of batteries, covers, cables, chargers, and a whole lot of other stuff. I saw that our audiologist already had his speech processors out and hooked up to a laptop. The whole thing moved pretty fast, so I’ll apologize in advance for missing some of the details.

Basically, the first thing that was done is she ran an impedance test. The point of that test is to check to see that all 22 of the electrodes in each implant are firing. In order to run the test, she had to put Alex’s speech processors on one at a time. I’ve written before that I was expecting this to be a pretty emotional moment like the hearing aids were, but it didn’t actually trigger anything for me. I think part of that was because the processors and the coil (the round magnet part) were both smaller than I thought they’d look on him, part of it was that I had already dealt with hearing aids and gotten over how those looked, and the other part was that THESE devices could actually help Alex hear. So that wasn’t a big deal.

Back to the impedance test – after Alex was “hooked up,” the actual test only took a few minutes per side. Alex didn’t claw at his ears too much, which was good, but he was obviously pretty tired at that point so we knew that we were dealing with a timebomb.

The tests finished, and our audiologist informed us that we were good to go – all electrodes for both sides were working and in contact! Basically, that means that the full range of sound that the implants can provide are available to Alex at this point. Our surgeon did a great job placing the implants. I breathed a sigh of relief here, because now I knew that the implants were both working and at 100%.

The next portion of the activation was to actually turn the microphones on and start to give Alex a sense of sound. Our audiologist explained that the noise is typically nonsensical to patients at this point as their brain learns to deal with the new input. The plan was to start the “volume” at very low levels and slowly raise them until Alex had a reaction. I was recording everything when she started this step and just kept the camera trained on him and Shannon. I thought we were going to have some more warning about when they’d be giving him sound for the first time, but that didn’t really happen, so when Alex reacted, I was somewhat surprised. His first reaction looked a lot like a startle – he froze up, pouted, then started crying into Shannon. I wish I could say that it was immediately an incredible moment, but I’m not even sure if a sound made him do that or if it was just the ambient noise of the microphones being turned on, so at first I was a little bit confused. Oh well, our video probably isn’t going to go viral.  Ha. I honestly didn’t get as emotional as I thought I would because it all happened so fast and there was no obvious sound that seemed to cause his reaction, so I didn’t have that gut “OH MY GOD HE HEARD THAT” overload moment. It was still awesome to see it work, but it definitely wasn’t the payoff for all of the buildup over the whole journey or anything.

Anyhow, that was his right side. The audiologist repeated with the left side, and we had the same experience. He cried when the right levels were found. So we know the CIs are both saying they’re working, the electrodes are working, and that Alex is getting input from them, even if it’ just a garbled mess at the moment. The loop is closed, now he’s got everything he needs to get his hearing life started.

After both sides were verified to be working, the work was essentially done. I think we had only been there for about 40 minutes at this point. From here, the audiologist and her assistant had us practice replacing batteries and putting the processors on his ears. The batteries should last Alex through the day – good to hear since I had read of some CI users who would only have their batteries last for 6 or so hours at a time.  Our audiologist then wrote down part one of our plan.

Alex’s CIs have four programs on them right now. The idea of CIs is to slowly bring them up in how much “volume” they give to the user so that it doesn’t overwhelm the user and gives the nerves time to acclimate. The analogy that was made to us was going from a pitch black room to a bright room and the need to let the eyes adjust slowly. Our goal for the next seven days is to move Alex from program one to four, which is the loudest of the batch that the audiologist programmed into the speech processors. Tomorrow by the end of his second nap, we’re supposed to have him on program two. As Alex’cs CI levels are brought up, the sound that he’s getting will also be “shaped” by our audiologist to help maximize the quality of what he’s getting.

That was just about it. Our audiologist, like the rest of our team, is awesome. She was clearly invested in Alex and excited to get going with him. She even played with him for a while before we left.  We took the CIs off of Alex before we left since they’d come off in the car anyhow (we’ll work on that and see what we can do).

The rest of the day was interesting, but that’s probably better left for another post.

Overall – thrilled that we’re at this point. There’s a shitload of work in front of us, but Alex has his CIs and they’re working. They might be ugly and they might not sound incredible, but they’re enough for now and they’re only going to get better. Activation wasn’t a massive deal at the end of the day, though it was still a big step that’s now behind us.

Post-Surgery Checkup

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

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

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

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

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

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

Hopefully it’s all smooth sailing until then.

More Weekend Recovery

A few minor updates for the story of Alex’s recovery.

His bleeding has slowed way down. It’s almost stopped. At this point I think it’s only really coming out of one of his ears and occasionally, if he has a runny nose, you’ll see some red in it. The first 48 hours after his surgery were the worst in terms of the bleeding, then it suddenly got a lot better, and now we’re waiting for it to completely stop. Having a few tissues close by is really all that it’s been taking in the meantime.

His incisions look great. I was telling Shannon last night that I think that Alex’s first incision from his botched surgery was noticably wider than his new ones, and my guess was that they did that because they knew he was coming back in. His left side seriously just looks like it had a light scratch on it. His right side side is coming along very nicely as well. Message to past self: As bad as the wounds look right after surgery, it’s crazy how much better they get within days. Don’t sweat it.

You can see his implants if you’re looking for them, and I mean really looking for them. I noticed when I gave him his last bath that they were pretty clear when his hair was wet to highlight where they were, but it’s more like you can see a light impression vs two incredibly obvious quarters coming out of his head. When his hair is dry you can find them if you know where to look. When his hair grows out a little bit more I think they’re going to be next to impossible to notice. Pretty cool. You can definitely feel them under his skin, but it isn’t weird; they don’t stick out that much.

Alex’s personality is back to 100%. Like many of the other posts we saw on the CI parent board, it took Alex about two days to kick all of the drugs out before he was obviously back to being himself. He wasn’t a monster to deal with, just a little lethargic. His sleep patterns didn’t change all that much, aside from surgery day.

So really, recovery truly wasn’t all that bad. When I read about how the CI implantation didn’t qualify as being a major surgery, that sounded odd, but I get it now. It was no walk in the park and our hearts ached for our boy, but Alex bounced back so nicely that when I was looking at him yesterday, it was sort of hard to believe that he had been through that surgery only five days ago. By that same token, it’s also weird to know that his surgery is done. It’s been looming over us for so long and we’ve done so much reading and research and had so many conversations about it that to know that we’re now on the other side of the surgery still feels alien. I still find it hard to believe that he’ll be hearing in a month. I hate that he’s going to have visible equipment on his head for the foreseeable future, but I also know it’s going to temporary. Yet another way that our Facebook CI parent group has been awesome is that we were subscribed to it when the Nucleus 6 processor (that’s what Alex will be starting with) first became available, and it was great to see how many parents chipped in to say that they had upgraded and commented on how much better their kids said they sounded and how much smaller they were. The trend will continue, and that takes a lot of the sting out of it for me NOW, but when we actually put them on him that could change. Then again, he’ll actually be hearing us, so that trumps that. Well; it’s easy to rationalize, but we’ll see what happens on activation day. Cannot wait.

What else… though our doctor didn’t say anything about the topic, we decided to keep Alex out of daycare this week. Even though the incisions look clean as a whistle, we decided it wasn’t worth the risk to potentially expose him to something like a dirty little hand or some type of exotic cold virus while he’s healing. Granted, this decision was pretty to make because my work flexibility is very high right now so it isn’t a big deal to stay at home, and on top of that, I only have to stay home for two days to keep Alex out for another eight. I write that out because I don’t want anyone reading this to freak out and think that they might have to do the same thing when they don’t have that flexibility. Shannon and I just very risk averse and are fortunate enough to be able to do those things without rocking any boats with work.

I can’t think of too much else to touch on. Alex’s recovery really wasn’t bad. Our prior research and Facebook board prepared us pretty well in terms of expectations. Again just feeling very grateful that Alex is on the mend and doing great.


Shannon did an excellent job recapping the actual day of the surgery on her blog in terms of what happened. Overall, I was cautiously optimistic the morning-of that it was gonna happen. He didn’t have a cough, didn’t have a fever, and the visit to the pediatrician the day before had set my mind at SOME ease that, just maybe, his weird inhaling thing wasn’t something to be terrified of if it was just that, by itself.

Sort of sad to say, but the trip into the hospital, going to admissions, getting the security badge, and then waiting to be called into an exam room was so totally standard at that point that it wasn’t too scary. As Shannon wrote, we were both sort of operating the assumption that his surgery was going to be canceled anyhow. I started getting excited for the surgery after the nurse practioner ran a quick physical on him, especially after she took a look at his throat and confirmed that there was nothing going on there that could prevent any sort of issue for the breathing tube.

Our surgeon was great that day, though some of that might be because we didn’t have way too many questions for him to answer. When we saw him prior to the surgery, it was really just a “Yup, here we are, we know the score, let’s go” kind of thing. I was a little nervous when Shannon handed Alex over to one of the nurses for him to be taken off to surgery, but I think most of that came from a position of hoping that he was going to be implanted. I knew he was going to be alright, or at least I didn’t let myself think that he wasn’t going to be. That comfort level was almost certainly due to the fact that we’d already done this before.

The wait was the wait. Not much to discuss there. I had a sensation of being very humble; every time I noticed someone walk in and glanced up to see that it wasn’t our surgeon, I felt grateful.

When the nurse popped out to say that Alex had one side done… huge relief. Huge. So relieving that I think I was actually in shock, but the positive kind. Though he was only halfway done with his surgery, he now had enough to be able to hear. It hasn’t been until recently that cochlear implants are done bilaterally (one per ear), and we’ve seen plenty of cases where unilaterally implanted kids still had great speech. We were now strictly in bonus territory. He’s gonna hear on his birthday! For the holidays! I’ve been really excited for the holidays this year, especially since it felt like last year’s were basically destroyed by the news of Alex’s diagnosis.

When I first saw Alex after surgery, I actually thought he looked pretty good, considering. Again, a lot of that is probably just because I’ve already seen what he looked like with the bandage on one side of his head, so this wasn’t a huge shocker. He was a lot groggier than last time around because he was under for longer. Sabertooth stopping by and Christmas in July were pretty awesome. I’ve gotta remember to donate something next year, or at least for this coming Christmas. It meant a lot and, as much as I thought the movie was stupid, I’d like to pay it forward.

The hospital discharge was pretty standard. All I really remember from the drive home was focusing on the drive and trying to avoid big potholes. Though Shannon and I were both relieved, it was an odd sort of relieved, because even though Alex had his implants, he had also just had a major surgery. I think the real celebration is going to begin either during his activation or the first time he shows a sign that he heard something that’s softer than a jet engine going by.

That night he was just out of it. Sucked to see, but pretty typical. He gave us a tough two hours in the night, but that obviously wasn’t his fault. I think the thing he hated the most was that he could really roll on his head because of his Princess Leia bandages. Once we took those off (and thank god that the incisions looked good and that the implants weren’t incredibly obvious), I think he was able to get a little more comfortable.

It’s been relatively smooth sailing since. After he gets up from the evening or a nap, he usually needs his nose or ears cleaned up, but the amount of blood has definitely trailed off. It was very gratifying to give him a bath after the designated 48 hours had elapsed, and I got to once again wash the hospital off of him, hopefully for a long, long time.

The areas around his implants are still swollen; it’s tough to say what the “final product” is going to look like, but then again he has hair coming in. The next few weeks will be telling with regard to head shape. His eyes are much less puffy than they were. I’m guessing a few more days and those will be back to normal.

Most importantly, his smiley / laugh-y personality is just about at 100% again after three days. It was relieving to get him to smile and laugh at me again.

So really, the recovery hasn’t been all that horrible. I think we gave him Tylenol twice yesterday and that was it. Nothing so far today, though he did spit up a little bit of blood today. I had read that that’s to be expected, but called our surgeon to ensure that was the case and got the affirmative there. We’re told that it can go up until about a week, and if it happens again after that, we might want to call.

Alex had a visit from his speech therapist yesterday, who was very sweet about the surgery. It meant quite a bit to us that all of his teachers at Buffalo Hearing and Speech were so obviously concerned with how he was doing, even though they’ve probably seen these surgeries many times before. Alex is really in amazing hands there. We’re working on getting Alex to lipread, especially “up,” “bye,” “yes,” and “no.” I just ordered a Mr. Potatohead to use to point out nose / ears / eyes. I think I’m going to work on that a lot with him now, and hopefully that will help when he gets activated and both sees AND hears me say it to make that association between sound and things. I can’t believe he’s going to hear us in a month. Holy shit.

PT-wise, Alex is fine. Not even worried anymore. He’s crawling on his hands and knees now and is pulling up on things like it’s nothing. Boy, do I wish I could send a message back to myself and Shannon in March and say “HE’S FINE PHYSICALLY, WILL CRAWL BEFORE 11 MONTHS, HE DOESN’T HAVE USHERS, AND HE’LL GET HIS CIS.” We obviously still have a road in front of us; I’m already preparing for the infinite amount of times Shannon and I are going to wonder if that was a speech affect we just heard or if it’s just because the kid is x months old. In the meantime, those are some pretty serious victories.

The only other thing I can think of to comment on is that we’re about to start the process of requesting an FM system through early intervention. I get the impression that not too many families have one for their own personal use. I want one if not just for long car rides to Shannon’s mom’s house or to have handy for noisy environments. Taylor likes music and things that are noisy, so having an FM system to let her have those things while also making it easier for Alex to hear us would be a boon without having to take too much away from Taylor.

So, there we are. A lot happened in a very short amount of time. It’s nothing short of exhilarating to know that he’s going to hear the world around him in a month.

Alex is now Bionic


I didn’t want to write too much leading up to Alex’s surgery today just because I didn’t want to hype it, and frankly I’m a little bit superstitious, so I didn’t want to do what I did last time and make an event of his surgery.

It worked, despite a serious amount of excitement.

The surgery was straightforward; no complications, no catches. Our surgeon mentioned that Alex’s eardrum might’ve looked SLIGHTLY pink, but that was the extent of it.

I’ll write something up in detail later, but bottom line is that we went in at 6am and were home by about 4:30pm. Alex has been very tired – much more so than when we brought him back from his botched surgery. That probably has something to do with the fact that he was under for a lot longer as well as the fact that more work was done. Shannon hit up the boards to see if near-constant sleep after the surgery was normal and got a lot of “affirmative”s, so that was good enough to  help us relax.  He’s been in his crib since about 7:30 now, not a peep.

Tonight’s probably going to be tough and I’m guessing that tomorrow will be pretty tough as well, but the surgery is done, and Alex now has the raw materials for sound. He’s finally got that and is healing up. 

Details to follow, but wanted to write that all is generally well over here, though today was damned tough and the next few days are probably going to be a bastard as well. But we’re thankful for where we are and what we have, and for all of the positive thoughts and prayers that were sent our way to help make it happen.

Here we go again…

It’s been pretty quiet around here for the past few months, so my posts have slowed down a bit. The last thing of note that really happened was Alex’s genetic results coming back clear, but past that, we’ve basically been in cruise control and trying to keep him moving forward with his physical therapy. He’s making good, steady progress in that regard. Our physical therapist has told us, again, that Alex would not qualify for PT at present if an evaluation was done on him now. He still likes to wag his head around a bit, but she feels relatively confident that he’s just “looking for input.” His balance is fine, and he can always be distracted from said wagging, so we’re still looking good on that front.

I feel like I’m basically mirroring what Shannon wrote on her blog today, but the new thing to stress about is that Taylor has a cough and fever. Alex’s surgery is six days from now. The concern, then, is that Alex will catch whatever Taylor has, become sick, and have his surgery postponed again. Alex doesn’t have a fever. He’s snotty, but I think just about every kid at this age is to some extent so that doesn’t concern me too much. He also isn’t coughing or sneezing an irregular amount. 

It seems that the criteria to go through with the surgery is generally:

  1. The lungs are clear of fluid
  2. No fever present
  3. No major ear infection present

I’m not sure how I feel about him still looking OK at this point. If he was symptomatic NOW, then at least there’d be a good chance that he’d be on the mend by next week. I think I’m happier that he’s not showing anything yet.

We have a meeting at the surgeon’s office on Thursday as a pre-surgery checkup. That could be interesting. My fear is they take a look, see something going on, and flat-out say that they’re going to reschedule the surgery. My hope is that I’ll tell them the situation and they’ll say that he looks fine, but will prescribe some preventative antibiotics as an extra precaution.

Regardless, there’s not a whole hell of a lot we can do at this point past wait, keep the kids apart, bust out the hand sanitizer, etc. I want to say that Taylor has caught fevers a few times and Alex didn’t, but my awful memory probably isn’t to be trusted.

I think… THINK the good news is that we still have almost a week until the big day. Taylor’s cough hasn’t been too crazy today, but she always seems to get postnasal types of coughs where things are OK during the day, but really pick up in the evening. With a little bit of luck we’ll keep them separated, Taylor rebounds fast, and that’s that. Again, probably wishful thinking.

And, of course, both kids were healthy for the past five or six weeks.  We’re now bumping up against a timeline that would allow him to hear his family and friends sing “Happy birthday” to him in a few months, so… come on, universe.  Cut the kid some slack.


A Little Relief

I got the call yesterday; the extended genetics panel came back CLEAR. Alex doesn’t have Usher’s or any other scary genetic syndrome. It’s a somewhat bittersweet victory because Shannon and I both feel like it was the antibiotic (gentamicin) that took Alex’s hearing from him, but  for me, the sweet outweighs the bitter. I’ve been terrified that Alex’s deafness was just a symptom of something bigger and worse, and now that’s basically gone.  Thank god.

The positive spin I’m putting on the antibiotic factor is this; if medicine took his hearing, it’s going to have to give it back to him as time goes on. I feel like because it appears that all Alex has to deal with is deafness and because of all of the developments happening on that front, he’s going to have the opportunity to take back what was taken from him.

Alex was supposed to be activated today if his surgery had gone through last month. To say that it’s a bummer that it didn’t happen is an understatement, but I’m very, very grateful for the clear genetics panel, so that helps to offset the frustration just a little.

That’s about all that’s going on, but I’m very, very happy to be writing this sort of update instead of what could have been the alternative.

Ear Infections and Anxiety over Genetic Testing Results

I was telling Shannon earlier this week that it was probably about time that I threw something up here, so here goes.

There hasn’t been way too much going on.  We’ve left Alex’s hearing aids out for the time being because he has a bit of an ear infection. It’s a mild one, and it makes me glad that we have the ear tubes that are helping drain all the fluid out, but of course it also makes me concerned that this little guy is somewhat prone to ear infections in general. The sheer chances that we would have his surgery postponed again seem fantastically small, and that’s of some comfort, but it would certainly be nice if he hadn’t made us raise our eyebrows like this. Luckily, we still have it on the calendar to get him checked out the week before to make sure he looks good, and on top of that, we might have some extra ear drops in case we see something go down after that checkup.

What’s really been on my mind, though, is the results of the extended genetic testing panel we had done for Alex. I called the genetics office this week asking for the results or at least to get a status since they were due to be in a few weeks ago. I was sent to the voicemail of one of the genetic counselors, who in return left me a voicemail saying that the director of the lab they were being processed at had to approve them, and he was off all next week. I called back and asked for some clarification; does he have to approve of them because they found something? I was told no, he has to review every result, regardless, prior to it being sent out the door.

Now, in a bubble, I’m not way too concerned that there’s more coming besides Alex’s deafness. I’ve done a pretty significant amount of research on the genetic angle of it. Basically, there’s only a 50% chance that it’s genetic in the first place, which would be interesting because no one in Shannon’s family or my own are deaf. Of some of the scarier things that can come with deafness, most of them have other telltale signs that Alex isn’t exhibiting, or at least isn’t CLEARLY exhibiting; stuff like balance issues, different colored eyes, skin issues, that sort of thing.

I’ve said it before, but the thing I think I’m most concerned about is Usher’s Syndrome, in which deafness is accompanied by blindness later on. That’s the one that often comes with balance / vestibular issues that our PT doesn’t believe Alex has. Additionally, this particular syndrome has a gene therapy available for the vision part of the disease that’s in testing right now, so even if it WAS Usher’s, there’s good reason to believe that Alex wouldn’t have to deal with the terrifying blindness aspect to it.

So basically, we think we’re OK, but that’s why I’m just defensively worried at this point. Hey, I wasn’t too worried when we took Alex to get his ears tested after failing his newborn hearing test, either. I guess we’ll see next week. With a little bit of luck, we’ll get some confirmation that this is all Alex is going to have to deal with in the future.

God knows the kid deserves a little bit of luck at this point.