Author: Andy

Six Waiting Rooms and an MRI

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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.

Physical Therapy Update

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

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

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

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

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

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

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

Busy Week Coming…

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It’s been a little while since I’ve written anything, so I figured I’d put a few updates out.

As the title says, we’ve got a lot of appointments coming up. Tomorrow at 3:15, I’m taking Alex to the audiologist. She’ll probably just give Alex new ear molds (his current ones are laughably too small) and MAYBE will do a sound booth test to see if he’s getting any sort of benefit from them. Zero hopes there, but that’s alright. Almost immediately after that meeting I’m going to have to run home so I can get him home in time for his physical therapy meeting. This one is kind of a big deal. We had a checkup appointment with Alex’s pediatrician, and when asked, he noted that Alex was a little bit behind physically. He didn’t think it was much, and he grounded us by making the statement that only 50% of kids are ahead of the curve, so it’s nothing to really be terrified about. Alex’s physical development is definitely something we want to make sure he stays on top of, though. Even though I don’t really think he has something like Cerebral Palsy, it’s still something I’m scared of. Alex still likes to fling his torso back sometimes, and we can’t tell for certain if that’s just a trick that he’s learned or if it’s reflux or if it’s something else. His neck control still isn’t perfect, but it’s been steadily improving. He can grab things with both hands pretty easily. He can stand up with support (i.e., his legs stiffen as they should). He hasn’t completely mastered tummy time yet, but I blame myself for that quite a bit since I basically tried to skip over that and put him right into sitting-up time (which he’s getting increasingly better at!).

Regardless of the things that he’s doing well, it’s tough not to fixate and worry on the stuff he isn’t, so we’re really looking forward to this next PT appointment so we can ask some pointed questions. We get that he’s behind on some stuff, but should we really be worried? Have you seen CP babies and did they look like this? What about other physical issues? The PT side of things is definitely something that’s weighing heavy, especially with Shannon who’s literally losing sleep over it, so we’re really hoping to hear some reassuring things tomorrow and keep plugging away.

Thursday morning we’re meeting with Alex’s teacher of the deaf. Not expecting anything crazy there, and I can’t really think of what we’ll be discussing. Nevertheless, we’re both fans of her, so I’m looking forward to talking with her and asking questions if anything interesting comes up. I’m somewhat dreading Friday. Around lunchtime, I’ll be taking Alex to get another blood draw for his next genetics test. We got the formalized results back, and they just tested for a single gene. The next round is going to be testing for 20-something different things. I have a feeling they’ll come back negative as well, but we’ll see. We won’t get those results back until after June, when Alex will have (hopefully) been implanted. He was an absolute champ at his last blood draw – no crying or anything, and he had a lot of swooning Quest employees “ooh”ing and “awh”ing over him. I hope he’s as awesome on Friday as he was last time around, but I won’t blame the little guy if he puts up a pout.

Monday is Alex’s MRI, which is the really scary one. The results of this test will determine if Alex is eligible for CIs and might give an indicator as to how compatible his anatomy is with them. It’s apparently very rare for patients to not be compatible, and when they are, a big reason for that is a missing auditory nerve. Alex’s can’t be missing because he can still hear very loud noises. It’s all of SOME comfort, but once you “win” the lottery once, optimistic chances don’t give me as much comfort as they used to.

For the MRI, Alex will require some form of sedation to make sure he stays still for the machine. It will most likely be administered by gas, and I remember reading somewhere that it could just be a very light form of sedation (like a sleeping aid). It sucks regardless. On top of that, Alex isn’t supposed to eat anything from midnight until when his MRI begins at 10:45. Seriously? Our six month old is going to be starving. Not pissed, starving. That’s really not going to help to tone down the stress of the whole event. It’s going to suck, but we’re just going to take it one minute at a time, get it done, and hope that we get back the results that we’re hoping for a few days after.

A lot happening. My hope at this point is that he has a quality physical therapy session that puts our minds at ease and that his MRI results come back quickly and that they’re encouraging. If those two things happen, it should be relatively smooth sailing until we come up on the surgery and genetic testing results. It would be nice if some of the stress dropped for a while, especially with spring and the promise of warmer days around the corner. Seems sort of symbolic when I think about it; it’s been a rough fall / winter, and we’re ready for some good news and a break.

A Little Optimism

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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.

First Round of Genetics Results Are In

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Shannon already did an awesome job giving a recap of this over at her blog, so I’m not going to re-write what she’s already succinctly done.

I had been calling the genetics office looking for Alex’s results since they were running a bit overdue, but somehow Shannon got the call. She got the news and then called me. I missed her first call because I was doing something with the kids and couldn’t get to the phone in time, but then I also heard my Google Chat starting to blow up. Right then, I felt pretty confident that it was Shannon telling me she had heard from the genetics department. A rush of adrenaline hit me almost immediately.

I called Shannon back and she told me the news – it isn’t Connexin 26. My heart sank. As Shannon mentioned in her blog, Connexin 26 doesn’t come with any other catches other than deafness, so this felt like a “good” option was suddenly taken off of the table, even though I was assuming it wasn’t Connexin 26 anyhow.

We’ll be doing another round of genetic testing, which means another blood draw and more fearful, adrenaline-filled moments. I’m pretty scared of what can come out of that. Shannon already mentioned the biggy, which is Usher Syndrome. I’ve done a lot of research into that particular disorder and, as with deafness, there are at least two very good things coming down the road for blindness. One is that there are very promising looking gene therapies (plural!) that are actually in human testing right now that would halt the progressive blindness. A few of them are corrective as well.  Beside those fixes, if all else fails, a new bionic eye which is coming to the US very soon.

Regardless of all of that, I definitely hit a slump when Shannon told me the news, but she also managed to pick me right back up that night when we talked about it a bit more. She and I both feel that it isn’t Usher, and even if it is, the good news is that it usually doesn’t start to take vision until roughly ten years of age, and that age range can be pushed back by a few more years if a lot of vitamin A is taken. That gives about fifteen years for the gene therapy or something better to come along. The prospect is still TERRIFYING, of course, but knowing that it isn’t necessarily a foregone conclusion that our poor boy would be both deaf AND blind would at least give some real hope. I hope we never have to worry about anything like that, but I was happy to see that sort of help on the way for those who do.

I moved slightly off-topic there – Shannon picked me up by saying something that resonated, and that’s that she feels that the antibiotic that was given to Alex during his time at the NICU was what took his hearing. It’s a bittersweet thing to consider, if true, especially since Alex didn’t have an infection at the time. I find myself almost hoping that that’s the cause of it because the “only” other thing that sometimes accompanies the hearing loss is vestibular issues, but as Shannon pointed out, Alex seems to be developing physically at a good rate. I feel that he doesn’t have any major issues there, but that could also be wishful thinking given how young he is. I could certainly see how it would be difficult to make that determination until Alex hits, say, a year, where balance should be mastered.

Under that scenario, I’ve also thought about how it would be ironic that technology basically took Alex’s hearing, but I’m depending on it to bring it back to him.

Before we can get more genetic testing done, the genetics office we went to first has to get approval from our health insurance to make sure they’ll cover it. That’s supposed to take a week or two. After that, if approved, we’ll get Alex’s blood taken again and wait with racing hearts to get those results back (Usher will be tested). I have a gut feeling that those will also come back negative and we’ll never really know what caused Alex’s hearing loss, but since Alex was initially diagnosed, I no longer trust my gut which said that there was nothing wrong with him.

Thinking about all of this and feeling my anxiety level going up reminds me of when we were in one of our audiologists’ offices a few months ago and a conversation was had about how most parents don’t get genetic testing. I can sort of relate to why they wouldn’t. When Shannon first told me that they wanted to do a second round of testing, I was very tempted to say that we should just stop torturing ourselves and deal with whatever may come as it arrives. She shook me out of it immediately by saying the obvious – we want to make sure that we get as far in front of whatever could potentially be coming as possible. Dead-on correct, of course, and I felt guilty afterward for even considering we should stop just so that I would maybe have a little less anxiety. I would have come around on my own, but I guess I’m writing all of this out to say that I couldn’t really relate to the parents who opted to not get genetic testing done previously, but I understand a little bit more now.

This whole process is terrifying, but I think it all falls in line with how I think and hope the next five years are going to go; the first year is going to be the hardest, and though the next few won’t be a cakewalk either, they’ll be better. I feel like we’ve already dealt with so much, from the diagnosis to the emotions afterward to the research to the doctors to the early interventionists… and we haven’t even hit the MRI yet, which will give us a good indication of whether or not Alex is a candidate for CIs and how GOOD of a candidate he might be. Never mind the surgery that’s looming!

Regardless – it’s a one step at a time thing, and I’m lucky as hell to be in this with a woman of my wife’s caliber. Every day is its own victory, and our little boy continues to give us signs that he’s going to be fine, from the smiles and laughs he gives us (especially Shannon!) to his progress with his physical development. The kid’s already a warrior, like his mom.

As always, more to come.

Some more random tidbits

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

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

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

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

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

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

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

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

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

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

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

Alex has Hearing Aids

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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

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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.

First Appointments: Teacher of the Deaf / Speech Therapist

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I’m way behind on writing. In some ways, I think it’s a good thing, because I originally started this off as just a place to vent off steam. As things have sort of calmed down and we’re not in complete terror / panic / depression mode, I’ve had less steam to vent. Regardless, we’re still very busy, still a lot going on. I have a lot to write about, so maybe I’ll try out this blog scheduler thing and tear a few blogs out right now.

A few weeks back, we had our first appointments with two more of Alex’s early intervention people; his teacher of the deaf and speech therapist. They’ll both be working on different things with Alex, even though the gigs seem very similar.

Starting with the teacher of the deaf – as is with all of our early intervention team, all of Alex’s therapies will either be at our house or at his daycare. I had a LITTLE bit of trepidation over this one initially, partially because I wasn’t sure what to expect. I thought this might actually be a deaf adult who would teach us some of the ropes and maybe push ASL as the only thing Alex should be working on right now or something (if you don’t know, the existence of CIs is a source of great consternation among some of the more… passionate… members of the Deaf community). I didn’t want to feel pressured to go that particular way. At the time, I knew that my fears were probably ridiculous. Our Early Intervention coordinator knew what our goals were, knew we had already expressed great interest in the speech center’s oral-based program, and that any teacher who was too militant about pushing toward an ASL-only route would probably not jive well with us.

I’m happy to report that my trepidation was a complete waste of energy. As it turns out, our TOTD is actually the main teacher at the oral school we want to send Alex to! That’s huge, since Alex will be with her all the way up until kindergarten (assuming, as always, that he’s eligible for cochlear implants). She works with the kids in the program all of the time, she’s seen what works well and what doesn’t, so to have her involved early and often is huge.

As far as the content of the first meeting with her, it was sort of introductory boilerplate kind of stuff. She told us about her, what she did with the kids at school, schedules, and the general things we would work on. A lot of good info exchanged. Some of my favorite tidbits that came out of it:

  • The kids at the school get live music therapy once a week. Cool to see that the school doesn’t take the attitude of some of the more negative or older opinions of CIs in that their users can’t enjoy music.
  • Unlike Auditory Verbal Therapy, which seems to be the most common sort of therapy done with children who get implants to learn to communicate orally primarily, the system that her school uses doesn’t discourage lipreading as a tool. AVT has had a great amount of success (we see it on the Facebook parent board all the time), but I think lipreading is a tool. I don’t want Alex to lean on it too much, but if he uses it to get a little help in understanding what’s being said in loud environments, I’m all for it.
  • That said – the school DOES emphasize listening as much as possible. Our teacher told us that they regularly ensure that the kids are listening by calling their names and asking them questions when they’re not looking, for example.
  • She likes that Alex is in daycare for a few days a week – it’s good practice to listen in louder environments as well as good for socialization skills (some kids who are hard of hearing have obstacles here).

Overall, it was great meeting her. Shannon and I both liked what she had to say as well as her personality. It’s also great that we’ll be able to ask her any questions we might have about the oral school since she’s probably in the best position to answer.

Now for the speech therapist – I obviously had a clearer idea of what she’d be working on, so I wasn’t too worried about how that would go. Our first meeting with her was relatively uneventful. You could tell that she walked into the house assuming that we didn’t really know too much about CIs / hearing aids and their effects on speech. She came armed with a lot of knowledge on CIs, but we actually knew most of it already. It was no problem, of course – she probably got a good feel for what we know already. We’re really looking forward to working with her, of course. Oh – she’s ALSO on the staff of the oral school that we’re hoping Alex will attend. Past that, not way too much to say. Shannon and I both liked her as well. She was a bit more down-to-business, but I appreciate that quality for her gig. All-in-all, that was a pretty uneventful meeting, but those will get more interesting as some time goes on.

So there’s the team, all assembled. I like who we’ve got, and I feel that Alex is going to be in good hands.

Hearing Aid Update

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Things are thankfully starting to pick up again, in fact so quickly that I’ll have to divide up all of the updates into a few separate posts.

Alex still doesn’t have his hearing aids yet, but we aren’t stressing out quite as much about it anymore because we learned a bit more about the timeline. If Alex is eligible for CIs, we’re going to go for it. The FDA, however, has a requirement that any potential CI candidate use hearing aids for six months to ensure that they can’t get any benefit prior to implantation. When we met with our ENT a few months back, he told us that the earliest he had implanted was nine months. We’ve done enough research to know the importance of getting implanted as early as possible, so given that, we want to shoot for that nine month mark as long as Alex’s age doesn’t increase the risk of the surgery. Of course, he’s four and a half months old right now, so even if he had his hearing aids today, the earliest he’d be able to get implanted would be ten and a half months, with actual activation (when the CIs are actually turned on) not happening for three to four weeks after THAT. I get that that extra month and a half probably doesn’t sound like that much time, but it’s literally forty-five more days of hearing experience that Alex would miss out on when his brain is trying to soak up as much as possible. There’s also the angle that we’d be twiddling our thumbs around during those 45 days while absolutely nothing happened.  Shudder.

It turns out, however, that Alex’s profound hearing loss actually helps him out in this regard. We learned from Alex’s speech therapist (more to come on meeting her and Alex’s teacher of the deaf) that the six month time frame from the FDA can be easily petitioned, it isn’t hard-set, and it’s often shortened in cases such as Alex’s where it’s fairly obvious that hearing aids won’t get the job done. Phew. We’re still disappointed that Alex didn’t get his hearing aids earlier, but unless unless he isn’t eligible to receive them, cochlear implants are the end-game anyhow.

More on the hearing aids, though – we’ll (finally!) be receiving them in the next few weeks. The last holdup was getting approval from the Early Intervention program (so really, the county) to pay for them. He’ll need to get re-fitted since his last fitting was back in December and he’s a fast-growing baby, but we’re tackling that this week.

I have some mixed feelings on putting the hearing aids onto Alex. There’s a part of me that’s going to hate putting them on him the first time, because I think in some way his deafness will become all the more real. I’m naturally biased, but I think the kid’s adorable. It sucks to know that he’s going to have to wear these, and further down the road, the even bulkier CIs. The techy side of me immediately wants to step in and say “It’s temporary, no sweat!” which makes me feel slightly better about the long-game, but until we have that fully-internal tech or that biological fix, he’s going to have that apparatus visible. It’s not fair to him.

Overwhelmingly, though, I’m excited to get started. We don’t anticipate that Alex will suddenly be able to pick up on more sound than he is now, but we’ll be making progress. He’ll be getting used to having stuff on his ears, we’ll be getting used to him having stuff on his ears and chasing it down / replacing it / playing with the settings / charging batteries etc. It’s step one to bringing some sound into his world, and I completely embrace that.

More to come on his hearing aids, and I still need to write about our initial appointments with Alex’s teacher of the deaf and speech therapist.