Activation!

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.

Surgery Date 2.0

A few things have happened this week, but I think I was just a little tired of talking about it to write.  Here goes.

It was obviously a pretty rough weekend, emotionally. Alex, however, was a champ. He was practically back to his usual self by the evening of his surgery day. By Saturday, no sweat. We took his bandage off and it really didn’t look too bad, though it was still tough to look. The inside of Alex’s ear bled all weekend, which we were prepared for. Hanging in limbo without having another surgery date was awful. His post-surgery care was pretty easy. He had an oral antibiotic twice every day and eardrops twice a day as well for the infection.

My plan on Monday was to call the ENT’s office during lunch and ask about when the ear bleeding would stop and, by the way, did you guys figure out a surgery date yet?

Shannon and I chat online every day at work, and we both agreed that we wanted to get this done by July.  July had to be the month, and if it couldn’t be accommodated, we might have to email around to New York, Cleveland, etc to see if we had any alternatives to get this kid his ears.

About 15 minutes before I was going to call the ENT, my phone rang. It was the office. I was told that we had a new date. The all to familiar sensation of my heart skipping a beating hit again, and then I heard “July 29th.” I was pretty happy with it, all things considered. It was about seven weeks after Alex’s first surgery. As a bonus, his surgery will start at 8:00 am, so we won’t be waiting too long. Not as if that would really matter; if it didn’t start until 4:00 pm and they wanted us there at 6:00 am we’d do it in a heartbeat just to be done with it. It’s nice that we can at least say that it’s going to happen (hopefully) next month.

We also had our post-surgery appointment with the surgeon. I could write for miles about this, but the quick version is that Alex is healing well. The blood coming out of his ear tube (on the side that he had his partial surgery on) is still fine, and it’s slowing down. Apparently Alex’s little surgery surprise is such a rarity that it’s only happened to our doctor twice in the span of fifteen years. Conservatively figuring one surgery every other week, the chance of this happening to Alex was roughly .5%, or 1 in 200. This kid. We thanked the doctor for getting us back into the schedule so close the minimum of six weeks and tried to show our general appreciation. When asked if we should do a preventative course of antibiotics or anything to help lessen the chances of another surprise, we were told we probably wouldn’t have to worry about it due to the sheer rarity of it happening weighed against the possible detriments. Fair enough. We have another appointment with him a few days prior to the surgery where he’ll hopefully take a good look at Alex’s ears and, if action needs to be taken, have enough time to do it prior to surgery date 2.0.

So we’re idling again, which sucks, but at least we’re on the calendar. We’re still ahead of the curve in terms of getting Alex his implants early enough in his life that he can take full advantage.

Now to twiddle our thumbs for seven weeks.

The Day Before

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

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

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

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

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

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

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

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

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

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

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

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

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

The Pre-Surgery Consultation

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

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

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

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

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

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

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

General Early Intervention Status

I thought I’d write about how all of our early intervention stuff has been going, just to give an idea of what it’s been like. Our focus had definitely been on getting the health insurance on board with the June date, so writing about these sort of fell by the wayside.

I guess the first thing to say here is that they don’t feel terribly inconvenient or time-obtrusive. I was worried about that when we first set out, but it really hasn’t been too bad. A lot of that is probably because I have a relatively flexible work schedule and our therapists have been awesome about coming either first thing in the morning or after I already get home, so even though we typically have one or two therapy sessions a week, they basically just eat up home-time, so no big deal. And of course, we’re always interested in picking their brains about what they’re looking for, what else we can be doing with Alex, bounce questions… so yeah. Even though I cringed when I had first read about having appointments all of the time, I’m pretty happy to say at this point that it hasn’t really been a big deal overall. All of our therapists are awesome and we welcome all of their help and experience.

Breaking it down…

 

Physical Therapy:

We’re still doing PT once a month. They go for about an hour. Our PT generally starts by asking us if we have any concerns, which we almost have. Once you have a kid who has one disability / issue / whatever you want to call it, everything that you would’ve otherwise written off as him just being a weirdo or taking his time becomes something new to worry about and research. So, as a result, whenever our PT asks us that question, we usually have something for her. Luckily, Alex has been doing well, in general. His balance is solid, he’s sitting up for decent pieces of time, etc.

After the PT finishes up “testing” for whatever concerns we had, which she explains in great detail, she takes Alex through the paces for everything we didn’t ask about and asks questions, usually in the form of “Has he done x yet?” An important thing she told me during our last PT session that probably would’ve saved me some stress if I had known it before – when you see PT guidelines like “Can sit up without support for 30 seconds,” they mean “Has demonstrated that he can sit up for 30 seconds” and not “consistently sits up for 30 seconds.”

After that, she goes through what she’ll be looking for at next month’s appointment and shows us exercises that we can work on with him to help push him along the path. The mantra remains to give him enough of a push that he can succeed but as little as necessary to make sure he’s working for it.

Once we get toward the end of our time, she writes down all of the exercises that we should be working on with him, and that’s that. She always tells us that we should feel free to text / call her with any questions, and she’s been great in that regard. We’ve only used that once when we were really concerned, and she got back to us very quickly.

Once Alex hits ten months of age or so and things really start picking up with crawling / walking, we might bump our appointments up to an every other week type thing. Our time with our PT is always very educational and often calming, so at this point I have no issue with doing that to make sure that Alex keeps pushing forward. But overall, he’s been pretty solid in the PT department. He’s not as far along as his older sister Taylor was, but he’s not showing anything that concerns our PT. So far, so good.

 

Teacher of the Deaf:

These are every other week and only go for about a half hour. Because our TOD actually works at the deaf-oral school Alex will be going, our sessions generally started as a “here’s what’s going to happen once he gets implanted and once he starts going to school” type thing. I think she wasn’t expecting us to have researched as much as we had in advance – we’ve gotten that a few times. Anyhow, the past three or four of our meetings have followed the same pattern. The TOD brings a bag of toys with her and works on getting Alex interested in one toy at a time. The toy generally “does something” – i.e., it’ll be a ball that has a button which causes it to light up, or a car that she’ll drive up to his face, but the idea is that there’s an action associated with the toy. Her goal has been to get Alex to make eye contact to signify that he wants that action to happen to. He’s been great in this area. When Shannon and I feed him solids, most of the time we won’t give him his next spoonful of food until he makes that eye contact, so he’s used to this. I have a feeling these meetings are going to pick up after he gets his implants, which I’m excited for, because right now Alex isn’t really being pushed. That’s not necessarily a bad thing, because we’re both grateful that he’s nailing the eye contact thing, but it’s going to be really cool when we can start having him use his new ears to vocalize to get those toys to move or whatever the next step ends up being.

 

Speech Therapist:

The speech therapist’s visits are pretty familiar to the TOD’s at this point. She comes every other week for a half hour.  She usually first asks us how Alex is doing with his hearing aids, whether or not we see him reacting to any sound, and if we’re having any issues with keeping them on his ears. After the quick status update she starts working with Alex. Like the TOD, she also brings toys, but they’re various animals. She works on getting Alex to make eye contact and then making the animal sound (“A doggy says woof woof woof”). Again, not really too much happens here. Alex watches intently, but you can tell that he’s not going to really maximize his value here until he gets his CIs. We’re really looking forward to his speech therapy sessions as one of the goals we have for Alex is to get him talking as early as possible and hopefully work on any affect he might start out with.

So there it is. We’re getting excited to REALLY get Alex going in a few months and teach him how to use his new ears and we’re thrilled with the supporting cast around us.

Mission 6/6: Part 3

I’ve gotta say, I’m actually relatively happy with how things have been moving up to this point.

Yesterday I called up the ENT to see if they had gotten a response back from BCBS in the form of a denied pre-authorization. Shannon called BCBS directly a few hours later. It turns out that it was a good thing that I had called, because even though they had sent everything in, BCBS wasn’t going to process it because of the initial “stop” that the ENT’s office put on the pre-authorization when they were incorrectly told that any failed appeal would tack an entire year onto Alex getting his implants.  So when the ENT called the insurance company to get a status, they were able to hammer that out and make sure it WAS being processed.  We’ve been told that will take something to the tune of 72 hours to turn around, so basically this Thursday. Additionally, we were told that the ENT actually sent in material explaining why we wanted to go in early.

Good things taken from that:

  1. It validates our strategy of calling over and over.
  2. The ENT didn’t just tell us “We haven’t gotten a response yet,” they followed up with BCBS and actually got a status and fixed the issue themselves rather than waiting for us.
  3. The ENT is ALREADY sending in the information on why we’re trying to get Alex implanted early instead of just waiting for the denial.

I’m probably saying this too early, but I’ve been impressed and grateful for the proactivity of our little team. Our audiologist sent us her drafted recommendation to be sent in for any appeal process after she integrated the verbage “medical necessity” at our request, and even asked if we wanted to make any changes or tweaks.

These might all seem like small kindnesses, but they really do add up, and in the healthcare industry where you’re asking for someone to go the extra mile for you, it’s nothing short of great service.

Shannon and I have a very small hope that the pre-authorization will actually be accepted based off of what the ENT sent in as well as just looking at the calls that we’ve made in the past week. The logic would be that given what we’ve already done, they’ve gotta know that we’re going to appeal vigorously, so maybe it’s worth accepting it now and losing whatever administrative costs and headaches would be associated with the appeals process? It’s a very small hope, because at the end of the day, we’re talking about insurance. They’re going to put up whatever walls they can to see if we just lose interest, but maybe they’ll weigh that against the appeals process we WILL put them through.

On the ear tube front, Alex has an appointment for next week. It’s just an office visit, so no procedure will actually take place, but the good news is that we’d still have all of May to get the procedure done. I asked the office person I was speaking with if she could make note that we need to have the procedure done prior to June, and she said that that note was already on our case, but she’d put it in again. Obviously when we go in, we’ll make note of that yet again and be as nice about it as possible.

I think that’s about it for now. Probably more to come on Friday.

In other news, Alex has made some pretty good strides lately in the physical development arena. He’s sitting up on his own for longer and longer periods of time, and he’s now rolling from back to belly. We’re hoping that means crawling soon-ish. Alex has a physical therapy appointment tomorrow. We’re hoping to ask the therapist if she might be able to write something up about the benefits of to Alex’s physical development if he has a sense of hearing earlier than later. I also want to ask her about Alex’s balance again and make sure that he’s doing well on that front. I did more googling about Usher Syndrome (where you’re born deaf or hard of hearing and slowly go blind) and balance issues are often associated with it early on. Alex is doing DECENTLY sitting up and once did it on his own for a good nine minutes, but I’d like that reassurance if we can get it that his balance is in good-ish shape. We’ll get confirmation once his extended genetic results roll in, but we still have weeks to go for that.

Now that I think of it, we also have an appointment with our teacher of the deaf tomorrow as well – I’ll probably ask her if there’s anything she can write up, though I’m not sure what that would really look like. Won’t hurt to try.

That’s a wrap for now.

The Oral-Deaf Dinner and other General Updates

Finally getting around to this.

The day we had our dinner was the same day that we found out that Alex was going to be eligible for CIs. That was a pretty huge boost, so we walked in feeling pretty good.

The event itself was held in the basement of the building, so we got a quick look at some of the classrooms / playrooms that were setup.  Dinner was catered by a popular local restaurant. We sat down front and center and met with two other couples with hard of hearing kids. I can’t think of any remarkable conversations we had there, except that one of the couples knew in advance that it was going to be a near-certainty that their child would have hearing loss due to genetics (the mother wore hearing aids). That didn’t stop them, which is no surprise, but I thought that was sort of an interesting dynamic. Also nice – we got some good face time in with the administrator of the program, who is the same sweet woman who was kind enough to physically meet with us and tell us about the oral deaf school months back. We also saw our teacher of the deaf, speech therapist, and audiologist. Definitely feel blessed to have that kind of supporting cast who all work together.

The actual discussion was setup as a Q and A with four kids sitting at the head table.  One of the kids got a little shy and jetted out of the table, leaving three kids; one unilateral CI boy (I want to say he was about 9) and two twin girls (I think 11 or 12, but I’m sure my wife will correct me on this). One of the girls used two hearing aids, one used one hearing aid and a cochlear implant. I think they all started off with a quick introduction. Once they got to the boy with the CI, I definitely perked up, because this would be the first time we’d hear speech from a CI graduate of our boy’s future school.

And it was perfect. No affect detectable.

Now, his little boy did just give off a very quick and smart-alec remark, but it was enough to get a sense for how good his speech was. It was pretty cool to hear. He only had one implant, too! The downside to his smart-alec remark is that the crowd gave him a pretty big laugh, which guaranteed that every other answer he gave from there on out would be a one or two word deal looking for the same response, but that was sort of cool in itself. He’s a little boy, acting like a little boy.

The girls were pretty amazing. They had speech affects, but I didn’t really notice after two or three sentences. Great self-advocating, they explained that they were both great students, the works. Two very inspirational young ladies that definitely showed off a maturity beyond their age.

Throughout the talk I was amazed that these three kids were functionally deaf, yet here they were, hearing all of our questions without a hitch, talking about their experiences going to mainstream schools, etc. It all seemed amazing to me, and made me feel even more hopeful for Alex given that he’s going to go through the same program, but with another ten years worth of experience and another ten years worth of technology advances at his disposal.

I can’t think of too many answers that were given that really stuck out as interesting, but that’s probably because I’d already done lots of research so I was able to anticipate a lot of the answers. One of the topics that stuck for about 15 minutes was FM systems (an FM system is basically a wireless microphone that you give to a teacher / speaker / whatever that sends their voice directly into “listening” cochlear implants or hearing aids). It was a good conversation about how it’s important to keep them on and the struggles to maintain them, but it got a little long-winded given that most of the audience members wouldn’t have to deal with them for at least another five years or so. Sports was another conversation that went on for a bit and it went into some of the challenges CI users have there (helmets, waterproofing, hearing in loud environments, etc), but my takeaway was that it’s all absolutely doable with a little extra work. No problem, we’ll do extra work. The kids talked a bit about how they’d get pulled out of their regular classes occasionally for special speech therapy and things of that nature. That was a SLIGHT bummer to hear about because it’s another thing that’s going to broadcast to Alex’s peers that he’s different, but again… we’ll deal with it, just like these kids and their parents did and do.

Overall, I didn’t see anything really too surprising, but to see the kids in person was pretty inspirational and I liked seeing how the teachers interacted with the kids. You could tell that they had formed some pretty deep bonds.

I think that about covers it.

Nothing too new going on at the moment outside of that. I have to call our ENT and see what’s what in terms of making sure that our insurance is lined up and what they’ll cover – I just read on our Facebook group that many insurance companies will cover TWO speech processors per ear so that there’s always a backup, that’d be nice! We always have a close eye on Alex’s PT. He still likes to bob around, but as he continues to demonstrate that he can hold himself up in a sitting position firmly, it makes the bobbing look more like him saying “I don’t want to be held like this right now” vs. a physical issue. Regardless, it’s something we want to continue to stay on top of.

The genetic testing results still make me nervous when I think about them, even though we apparently won’t have those in hand for another month or two. Just really hoping that his deafness is all we have to deal with and worry about.

Past that, life is actually sort of normal. Alex still wears his hearing aids all the time even though we keep them off most of the time because of the incessant whistling, but he does great in NOT swatting them off. Hopefully that trend continues on and we get lucky enough that he doesn’t hate his CIs, because once he has those, they are staying the hell on. We’re going to take advantage of every minute of hearing time that we can early on and get this kid going.

Something we’re starting to investigate now is getting an FM system that we can use with Alex that we would own – most parents don’t have one because they’re typically only used at schools, but I’d love to have it for louder environments, long car rides, that sort of thing.

We still have early intervention appointments frequently, but they’re starting to feel routine and just slight pains in the ass rather than an invasion of our lives.

We’re still constantly concerned about Alex and his future, but it feels like things are starting to normalize just a little bit.

Six Waiting Rooms and an MRI

Alex had a big date yesterday with an MRI machine.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Done. Good results, please.  PLEASE.

Physical Therapy Update

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…

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.