A Very Busy Week

Well, the title says it all.

Yesterday:

  • I took Alex to his three-month checkup at the pediatrician’s.  We talked for a bit about Alex’s hearing loss, but otherwise Alex was looking good from what the doc could see.  Good measurements, etc.
  • Our ENT called to give us a phone number to call the genetics department at the hospital Alex was born at.  We’re absolutely going to do it, but my heart races a little bit at the prospect of doing it and learning that our poor little guy has more hardship coming at him.  It may also show that Alex’s hearing loss is the only genetic challenge in front of him, though.
  • Buffalo Hearing and Speech confirmed an appointment we had next week for another ABR.  I asked to be transferred to the audiologist’s voicemail to give her an update on the whole auditory neuropathy thing, just to see if she still wanted the appointment for an ABR or if she wanted to do something different with the time.
  • Shannon was called by the hospital to confirm a follow-up appointment that they do with all kids who were born in the NICU.  From the sound of it, it’s going to be another evaluation to see how those NICU kids are developing and to catch anything early.  It seems pretty redundant at this point, but whatever.

Things are definitely picking up, which makes me generally happy.  It feels good to be taking steps forward.  There’s some sadness in all of the appointments because it feels like a sneak preview of what our life is going to be for the next god-knows-how-much-amount-of-time, but I’m taking the optimistic route and looking at all of these appointments as the beginning of us chipping away at the sum total that Alex will have to go to.  Taking yet more comfort from the hearing loss parenting board we’ve joined, it’s also cool to see that a lot of these parents are asking each other what they bought for their child’s therapists and audiologists for Christmas.  It firms up the notion that these folks are really here to go to war with Shannon, myself, and Alex and they’re going to have a huge impact on Alex’s life.

The audiologist from Buffalo Hearing and Speech got back to me today to respond to my voicemail.  This was the same kind soul who had to give us the news about Alex’s profound hearing loss but did so in a very sweet way, so it was nice to speak with her again.  Her general take on the auditory neuropathy confusion was basically this – the treatment is the same whether it’s AN or not, so it’s not worth losing sleep over it.  I asked her how many AN kids they’ve seen and how they’ve done, and it sounded like a dozen or so had come through and that they had done just as well as the other kids.  She also said that the results from Children’s were encouraging if for nothing other than the fact that the AN indicators she might’ve seen could have just been fleeting.  At the end of the day, her stance was that another ABR wouldn’t be necessary because it wouldn’t really change anything and that we could use our meeting time for something much more productive – getting Alex fitted for hearing aids!  That definitely perked me up.  Even though putting those hearing aids on Alex’s head is going to be tough because it’s going to drive home how REAL the idea of him wearing something on his ears / head for the foreseeable future is going to be, the thought that they might help him pick up some environmental sound and get his brain hearing more trumps the aesthetics, which I firmly believe are going to be temporary anyhow.  A few other tidbits of good news coming out of that phone conversation:

  • Bless our audiologist’s heart, she’s going to try to get the head person at the oral school on the phone to speak with us during our meeting so we can ask any questions we have for that track (the other of which is the ASL / total communication route).
  • She hasn’t seen any kids roll through in a long time that weren’t eligible for cochlear implants because of physical limitations.  Though that’s clearly not a guarantee that Alex is going to be the same, it’s good to know that if we choose to go that route, it’s likely the option will be there.
  • My dad as well as a local parent who is on The Board (which is what Shannon and I call it and what I’m going to use from now on to describe the fantastic Facebook board I’ve already gushed over) both recommended a specific audiologist in the area who’s apparently wonderful with kids and gets great results.  Her name was brought up during the conversation because she’s apparently hopeful to work with us, so I immediately said “Yes, we’ve heard great things!”  Great to know that the person we’ll be working with has already come highly recommended and is experienced.

So overall, a good conversation.  It would’ve been ideal if she had flat-out said “Yup, those other ABRs definitely cancel mine out, no AN for you,” but I still consider it all a solid win.  We’ll take what we can get.

The next two days will also be busy.  Tomorrow we meet with Early Intervention for Alex’s evaluation as well as the formation of his plan, which I don’t think should be anything too insane.  We know we want to go with Buffalo Hearing and Speech regardless of track.  Saturday we actually have an interview with a nanny.  We’re hoping to find someone who’s both reliable as well as experienced who can watch the kids for two days a week.  It’s easier on the kids, it gives Alex more one-on-one time, and it’s easier for Shannon and I to get straight to work and drive straight home to maximize the amount of kid time we get.  Shannon and I have already talked about how we want to supplement anything that therapy does with Alex (or ASL lessons) with him as well, so getting those extra 30 minutes for two days a week will be huge in helping Alex out while also not taking away from Taylor time.  The Boards have mentioned a few times that their children actually find the therapy fun, so with a little bit of luck our little sessions can feel more like play sessions.  Who knows.

In the midst of this whirlwind of activity, it’s a depressing thought that we have to take the efforts to integrate all of this into our lives, but I think we’re all about ready to get to work.

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A Sliver of News on the AN Diagnosis and other Thoughts

For the first time in what seemed like forever, we actually had a pretty nice weekend.  None of our evenings were complete Google-fests that got us worked up, and we were able to really enjoy our kids and the family dynamic in general.  Good for the soul.

On Saturday we went to Shannon’s workplace.  They’re a relatively family-oriented company, so they offer a breakfast where Santa shows up on a firetruck, kids get to ask for presents on his lap, etc.  There are various activities for the kids to participate in as well.  It blew my mind when I thought of the fact that this was actually the third time our daughter had participated in it, even though she’s only two.  Crazy how time flies.

Something I’ve found myself doing A LOT now when I’m in a semi-crowded area is searching for people with hearing aids.  I’m not sure why, exactly.  Maybe it’s to comfort myself that Alex won’t be alone in wearing assistive hearing devices (should he be lucky enough).  Maybe it’s because I’m interested in seeing how those people “do” in louder environments.  Regardless, one thing that particularly caught my attention at the event was the amount of people who were wearing glasses, kids included.  And though this analogy is obviously flawed, it made me think that if Alex is wearing assistive tech, is it really THAT fundamentally different than all of these people with glasses or braces?  Now, of course there ARE real differences.  Glasses are practically a fix.  You put them on and you’re ready to go.  With hearing aids / implants, therapy is basically required to teach children like Alex who weren’t born with hearing to learn how to use their sense and get them “caught up” with the hearing children who did.  Glasses are also very common on little kids, whereas hearing aids (let alone cochlear implants) aren’t.  Still, it lends a lot of credence to a common experience I’ve read from many different parents, and that’s that though their children’s peers are often curious about the implants, a simple “these help me hear” explanation suffices and that’s that.

It’s probably a coping mechanism and reach in general to say that an implant is similar to a pair of glasses, but it still brings me some comfort because there ARE some parallels there, the biggest of which is that a person with glasses who’s practically blind without them isn’t defined by them.

Anyhow, it was a nice little family event.  I was telling Shannon that it’s going to be very interesting to see what’s going on with the family at this point next year.  Maybe Alex will be a few months into his hearing journey by that point?  We’ll see.

Later that day I ran out to grab a pizza (our appetites have officially returned, which feels good) and grabbed our mail on the way out of the driveway.  In it was a letter from the hospital containing the official ABR report from Alex’s last test (this was the test where the audiologist doubted the auditory neuropathy diagnosis from a prior test).  I anxiously opened it to see if there was any new information – she may have collaborated with the other audiologist to compare notes, as I know that what gets sent to doctors / professionals is much more detailed information than the write-up that they send to patients.  But there wasn’t!  The write-up indicated that no signs of auditory neuropathy were observed in EITHER ear.  Again, this isn’t really news, but it was somewhat comforting to see that written out on the official report.  A little bit of hope.

We have another meeting coming up with Buffalo Hearing and Speech which we’re assuming will consist of yet another ABR, so maybe at that appointment it can be hammered out either way. We’re still really hoping it isn’t AN because that would mean that Alex might get some benefit from the hearing aids he should receive within a month and, more importantly, give Alex a better chance of not having any other associated health issues.

Speaking of appointments, Alex has a pediatrician appointment tomorrow.  I’m looking forward to asking a few questions to our awesome doctor and hoping to walk out with a clean bill of health that I can then report to the Early Intervention evaluator that’s coming over on Friday.

Emotionally, it’s still a roller coaster.  It’s easy to get caught up in both the lows as well as the highs (though a “high” is just feeling relatively normal).  The Facebook group I mentioned has been a great source of information, comfort, and realism.  What’s great about it is that there are tons of great uplifting and happy stories, but at the same time there are also real stories about the occasional sadnesses involved.  A great example was a mother asking the board about what they said to their kids when they got to the point where they’d ask why the other kids didn’t have to wear “ears” or when they’d be able to take theirs off.  Leaving my techno-phile hat off and ignoring my belief that that’s all going to go away given time, I appreciate those stories because it gives us a hint as to what we MIGHT be in for and it also makes the happier stories all the more real and graspable.  Needless to say, I’m now a big believer in the power of support groups.

Alex is also helping us to keep our heads up by being a good little guy in general.  We’ve gotten a few laughs out of him and he definitely likes to smile at us, which I like to interpret as his faith that we’re going to do everything we can to help him kick as much ass as possible in this world.  There’s always just a little bit of sadness with each of these moments, though, because you can’t help but wonder WHY any of this is happening to such an innocent and happy little dude.  I often feel bitter that Alex is our last child and we can’t even enjoy him and the completion of our family as much as we would be in the alternate universe where he was completely fine.  That isn’t to say we don’t love him as he is now, obviously, but there are very few moments when we’re not thinking about the whole thing and worrying about what’s coming up and if we’re doing everything that we can for him.  It pisses me off that we can’t enjoy this time to its fullest.

All of that said, we’re definitely doing better.  We’re smiling a little bit more and depressed a bit less, though there’s always that underlying sadness present.  I think we’ve come a long way in a few weeks.  Getting rolling with Early Intervention this Friday could go either way.  I’d like to think it will make us feel better because it’ll feel like now we’re actively doing something for Alex, but it could also be a reminder of the long road ahead of us that we didn’t choose.  We should hopefully get closure on which way Alex is going to go within a few months (hearing and mainstreaming or visual / ASL / deaf school) which should also be a big help in getting us moving down the path of what’s best for Alex.

Just keep swimming.

First Meeting with Early Intervention

Just a few small updates.

I met with Early Intervention for the first time yesterday.  The way it works is an initial service coordinator comes out and basically explains what the next steps are at a high level.  They are:

  • An evaluation has to be performed.  This evaluation is basically what enables your child to participate in the program.  We were told a few times that Alex’s hearing loss diagnosis was probably enough in itself, but as part of the necessary boilerplate (this is a government-funded program, after all), an evaluation still needs to be done.  The evaluation itself is apparently only going to take about an hour or so, and they’ll be looking for other potential issues Alex might be having.  Tummy time was mentioned a few times, neck strength, motor skills, that sort of thing.  Knock on wood, we’re not too nervous about Alex physically.  He feeds well, he sleeps well, he smiles, he makes eye contact, and he’s picking weight up.  Our pediatricians haven’t noticed anything at this point either.
  • The next step after the evaluation (and I’m told that we’ll actually do this the same night of the evaluation which may be because Alex’s should be pretty easy) is to formulate a starting plan.  That’s probably where we’ll say “speech therapy, Buffalo Hearing and Speech intervention program,” etc.  Shannon and I are looking forward to this piece, because that’s going to be the blueprint for Alex’s immediate future.  A large component of that is going to be having a specialist go to our house and give us some guidance on how to best interact with Alex.  Really looking forward to soaking all of that up!
  • Once the formal evaluation write-up gets to the Early Intervention folks, the plan essentially activates, gets funded, and away we go.

I had mixed feelings about the meeting itself – this is still so new and fresh that it was tough to realize that this was real – my kid’s in early intervention.  At the same time, it’s somewhat empowering.  The coordinator I spoke with was very sweet and supportive, and she emphasized a few times that Shannon and I will be in the driver’s seat.  We’re going to have a team of people working toward getting Alex whatever sort of help we can, and we can change the plan as we go along and learn more about our little dude.  We’ve got ’em for three years.

Another thing that I was happy to learn is that we’re probably less than a month away from getting Alex hearing aids.  Now, we still don’t know if Alex has auditory neuropathy or not, which comes into play.  If he DOES have it, then it’s likely that hearing aids wouldn’t do anything for him except for make white noise sound louder.  However, if he doesn’t, we could expect that Alex would at least be able to hear a little bit more than what he can do now.

A recurring vision that I’ve had is that I’m sitting in my chair in our family room, looking at Alex’s back (he’s facing the TV, maybe playing with some toys or his sister).  I call his name or make a loud sound and he turns around.  That sounds incredible to me right now.  We don’t have any sort of high hopes for the hearing aids, but any possibility that they might be able to help Alex at all feels like major progress.

We’ve been diagnosing and testing for what seems like forever.  Though it feels like we still don’t have any traction walking down any particular path, it feels good that we’re going to at least start walking.

Other notes… the hospital called our ENT and stated that they didn’t want to try to get an MRI performed on Alex until he hits six months.  Though that’s no surprise and didn’t feel like any sort of major setback, it’s somewhat disappointing that we won’t know if we have the option of cochlear implants for that period of time.

We still don’t know what’s up with the auditory neuropathy.  We have another appointment setup with Buffalo Hearing and Speech and we’re somewhat assuming that they’ll perform yet another ABR to look specifically for AN, but who knows.  If nothing else, that appointment should be informative so we can learn a bit more about their two programs (one that’s based around using hearing technology to boost listening / speech skills for mainstreaming and one that’s more of an ASL route but uses total communication that would include any hearing capabilities).

I’m tempted to write about how the family has been doing in general, which is definitely BETTER, but I’ll save that for a later post.

Introduction, Part Three

Continuing…

After the ABR where we discovered that Alex was functionally deaf, Shannon and I were obviously distraught to the core.  His “out of the box” hearing was practically non-existent.

One of the last kindnesses the audiologist gave us was to refer us to a new ENT whom she referred to as “THE guy for cochlear implants around here.”  She even called their office for us on the spot and arranged an appointment; she got us in something like four days later, which is apparently miraculous because this doctor is very sought after.

She also gave us a quick background on our two basic options that we’d have at this point – we could try for a listening / speech approach, or we could go the ASL route.  No decisions were or have been made at this point because we don’t have enough information to make an informed choice, but I’d be lying if I said that we didn’t ask more questions about the hearing / speech approach.  Apparently most of the kids that go through that program have great success in mainstreaming (that is, going to typical schools and basically being brought up to be a part of the hearing world), which was good to know.

Our nights were awful.  One thing that was particularly difficult was falling asleep, because the silence beforehand gives plenty of room for the mind to race.  To make things worse, Alex was still waking up once or twice a night to feed, so we had to go through the process multiple times per night.  Each time we woke up we realized that it still wasn’t just a nightmare that we were waking up from; our child was still deaf.

During the days, much research was done around cochlear implants, including how well they work, how they do with music, what sort of future-tech was coming up, etc.  Again, it was all a compromise, so it was all very difficult to feel positive about.

The day of our appointment with the ENT rolled around.  Our new doctor was definitely an improvement from the last guy – our audiologist had given us a heads-up that this would just be a very quick and cursory check, but our doctor answered almost every question we had accumulated at that point.  It was nice to be able to ask an actual professional questions and get real-world answers rather than reading clinical statistics from Google Scholar.  He seemed rather matter-of-fact about going with cochlears at that point, and most importantly, he said that if that’s the approach we were to take, he’d want to do so as early as possible.  The earliest he had implanted was eight months, but typically he could get them done by nine months.  The FDA currently recommends waiting until one year despite all of the studies that scream “THE EARLIER THE BETTER!”, but the doctor ensured us that he could petition and we’d have a decent chance of pushing it through.

Throughout the discussion, the doctor brought up the term “auditory neuropathy.”  I didn’t think anything of it at the time because it basically sounded like the medical term for “deaf” or “hearing damage brought on by damaged nerves.”  On our way out, the doctor mentioned that he wanted to line up an MRI if possible so he could get a better idea of what was going on with Alex’s ears.  A challenge with this is that it takes something to the order of 40 minutes to complete and requires the subject to stay very still.  No easy task with a squirming infant.  Typically, children are anesthetized, but he wasn’t sure if we could do it with Alex being this young.  Nevertheless, they would follow up and see what the MRI folks would recommend (we haven’t heard back from them yet, but I’ll share that info here when we do).

Later that night, we had our first social dinner outing since having Alex with Shannon’s best friend and her fiancee.  Though we weren’t sure if we would really be able to enjoy ourselves, it proved to be extremely therapeutic.  They asked questions about it.  They offered encouraging words.  They didn’t try changing the subject.  They obviously were interested in what was going on with Alex as well as our well-being.  Basically, it was fantastic, and it’s yet another reason that I appreciate that we have the two of them in our lives.  Yes, some alcohol might have helped as well, but it was great to feel somewhat normal for a few hours.

Again, this good feeling would be unfortunately short-lived.

Shannon brought up that the term “auditory neuropathy” sounded strange when the doctor had brought it up.  I told her my initial thought on it, which was that it was just a fancy term for “deaf.”  We went to sleep for the night.  Alex woke up at around 3:00 in the morning to be fed.  During that time, Shannon and I started looking up the actual term “auditory neuropathy,” which was also present on the ABR report we had received that day.

Our third drop straight into deep depression commenced.

Auditory neuropathy, as it turns out, is a SPECIAL type of deafness (you have to win the lottery to get this, it’s something like 1 in every 100,000 children will have it) with a few terrifying characteristics.

  1. Cochlear implants don’t always work with it, or they don’t work as well.
  2. Hearing aids flat-out won’t do anything for it except for rare cases.  Therefore, putting hearing aids on Alex prior to getting cochlear implants (if we were to go that route) would likely do absolutely nothing for him.
  3. It’s something that’s relatively “new” in terms of being diagnosed, so there isn’t a dearth of experience in treating it.
  4. Worst of all – auditory neuropathy is often accompanied with other issues.

That was the end of our sleep for that night.  We had gone from adjusting to a perfectly healthy baby to a baby with moderate hearing loss to a baby with profound hearing loss to, now, a baby who would potentially not even benefit from cochlear implants AND who was more at risk for having additional health issues.

The latest bit hit us the hardest.  This might be because we’d already endured the previous two hits, so we were already raw.  There was a lot of pleading for the evil to cease.  “Please stop.  That’s enough.  We can’t take any more.”  We began to make peace and accept that we could have a child who would simply not have hearing, and potentially have worse things coming on the horizon.  We’re still trying to make peace with this possibility.

Two days later, we went to Shannon’s mom’s house to spend the day.  It’s always been a boost to the soul to visit for a few hours – Taylor and Alex’s grammy and grampa love taking care of them and spoiling us.  It’s also nice to get out of the house occasionally, especially when you’re sending so many hours writhing in depression within it.  Shannon and I had a good discussion on the way over (as we usually do) about what sort of GOOD things the future might hold, and how that rational thought that we’d deal with whatever came our way and adjust our lives accordingly was worth holding on to even as we were bottoming out.

Upon arriving at the house, the kids were immediately spoiled.  The TV was tuned to Disney Junior, which contains most of Taylor’s favorite TV shows.  At one point, there was a show called “Little Einsteins” on.  It’s basically an educational cartoon that places a lot of emphasis on a few bits of classical music every episode.  While it was on, I was holding Alex, who was resting in my arms, looking innocent and beautiful.  Every time they played a little musical hook was like taking a knife to the heart.  He couldn’t hear this.  Even if he had cochlear implants, he probably wouldn’t hear it with the same fidelity that we could.  I broke down and cried silently on the couch.  I even received the added bonus of feeling guilty about doing it because I know that Shannon’s mom could probably see me, and I highly doubt that made her feel any better.  Certainly one of the lowest emotional moments I had had so far.  In my life.

I think that by this point I had lost something to the tune of 15 pounds in just over a week.

The following day we had another ABR with the hospital we had performed the first one with.  The main objective of this particular ABR was to get a good measurement of Alex’s left ear now that Buffalo Hearing and Speech had gotten a solid reading out of Alex’s right.  I held Alex again while Shannon waited in the hospital waiting room.  Before the audiologist began the test, I gave her an update (suspected auditory neuropathy, profound hearing loss), mostly to encourage her to tell me what she was doing as she went along without worrying that she was going to casually deliver horrific news to a dad who thought everything was AOK.

After about an hour’s worth of testing, we received some interesting news – she didn’t see any sign of auditory neuropathy in Alex’s left ear.  That was somewhat unbelievable, considering that auditory neuropathy is almost ALWAYS present in both ears.  She explained something about a wave V (I’ll try to get more detail on this as it unfolds in case it helps anyone else) and how it wasn’t exhibiting signs of neuropathy.  It might’ve been because it was smooth?  I’ll clarify later.  My hope didn’t skyrocket (or, at least, I won’t let myself admit it), but it was a potential win.  I eagerly asked her if she could re-test Alex’s right ear to scan solely for auditory neuropathy.  She agreed.  Flipping Alex over woke him up, but luckily I was able to get him back down again after about twenty minutes.

She couldn’t find any signs of neuropathy again.

The testing concluded and Shannon was brought into the room to discuss the results (I specifically asked for this to make sure she could hear everything the audiologist had to say as well as have the opportunity to ask questions).  She re-iterated that she couldn’t find any signs of AN, but she also didn’t have the report from Buffalo Hearing and Speech that might’ve shed some more light on what THEY had seen.  Again, I tried not to get my hopes up too much.  We had been told that Buffalo Hearing and Speech had the latest and greatest equipment, so maybe they were looking for something different than the hospital was.  Our souls had already been squashed three times in the past two weeks, so this the prospect of any hope just felt like a cruel setup.

The audiologist went on to answer all of our myriad questions.  She had previously been involved with the early intervention program, so we got to find out a lot of great information about the two tracks – one for auditory / verbal, one for ASL.  We discovered that the ASL track was actually more based on total communication (so ASL, speech, hearing, lip-reading, everything available) which made us feel better about that program.  It was pretty informative.  She was also kind enough to give us the opportunity to email her the ABR report stating that Alex had auditory neuropathy so that she could take a look, and she promised to get back to us with her input.  She did so a few days later and stated that she didn’t read anything on the report that would make her back her opinion out that Alex was free and clear of AN.

At this point, I think we’re basically caught up in terms of diagnosis.  We don’t know if Alex has AN or not.  Over the past few days I’ll admit that I have some hope that he doesn’t have AN on the basis of the latest ABR as well as a few things that we thought were odd that the audiologist agreed with – namely, that his OAE test was always coming back as negative.  With AN, an OAE typically shows as normal for a period of time and then goes to abnormal, but that takes a lot longer than the ten weeks that Alex had been around for.  Typing this, I can feel the letdown that I’m already setting myself for, but I guess we’ll just call it cautious optimism.

We haven’t heard back from our doctor yet regarding Alex getting an MRI (step one in determining whether cochlear implants would work for him).  We have our first early intervention meeting scheduled this week, but that’s just going to be boilerplate.

At least we’re moving.