Early childhood intervention

General Early Intervention Status

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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.

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Mission 6/6: Part 3

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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 Early Intervention Evaluation / Plan Development Session

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Last Friday was our first “big” meeting with the Early Intervention folks, so I wanted to outline how that went.

Three kind ladies came over; one was the EI coordinator that I had met with the week prior, one was a physical therapist, and one was a speech therapist. They introduced themselves, shook hands, took shoes off, yadda yadda. Very polite and kind, which I only bring up because this was a somewhat unnerving meeting for us. It’s easy to just write out what was happening and leave it to a series of events, but underneath everything there’s that feeling of “Wow, my kid is really in Early Intervention.” It was nice that the introduction to all of this was in OUR house and with non-clinical… humans. I felt that they were very considerate of the situation.

After the introductions, we basically got right to playtime with Alex. The ladies watched how he moved, cooed, reacted to us, etc. He was very well-behaved and even put on a bit of a show. After about twenty minutes of observation, the physical therapist made note that Alex was heavily favoring his right side, especially when laying on his back. She said that this wasn’t a MAJOR concern, but was still somewhat of a concern that we’d want to work on. She showed us a few exercises that we could perform and also emphasized that we’d want to give Alex a little more tummy time. None of that came as too much of a surprise. Shannon’s very perceptive and had noticed that Alex favors his side, and her equally perceptive mother had noted the same thing. As far as neck strength, we were admittedly much better with ensuring that Taylor had plenty of tummy time when she was a baby. I think a downstream effect of the gutpunch we received with Alex’s hearing loss was that some of those things fell more into the background. The physical therapist rated Alex as being somewhat behind where he should be at his age, but not by much.

The speech therapist noted numerous times that Alex was doing wonderfully with his cooing and eye contact. Hearing about his little speech was another both-good-and-bad moment. Great, he can coo, but he can’t hear himself and he’s going to stop eventually. The positive outweighed the negative, though, and we were thrilled when the speech therapist put his cognitive and speech skills ahead of Alex’s age. At least we have a little buffer! It was also nice to hear it validated that his eye contact was solid.

The next step of the meeting was to develop the plan. It was emphasized that we would be able to make any changes or tweaks as we go along and as we learn more about what’s going on with Alex, so we didn’t have to worry at all about oral vs. total communication or anything like that. That kept things pretty basic.

The output of that plan:

  • Alex will have a physical therapist that will check up on him once a month to see how he’s doing with his neck strength and to ensure that his right-side-favoring doesn’t become a real issue. Again, the PT wasn’t extremely concerned, but she did say it’s something that we should keep an eye on before his muscles get too used to the imbalance and it becomes more difficult to fix. Shannon and I actually like the idea that he’s going to get that individualized attention and have yet another set of eyes watching him for anything that might come up.
  • Alex will go through Buffalo Hearing and Speech for his audiological needs (hearing aids, etc). No surprise there.
  • Alex will have a speech therapist – I’m interested and excited to see what comes out of this at this young of an age.
  • Alex will have a teacher of the deaf. I asked what this person would be doing because I honestly didn’t know, and we were told that, for example, this person can make recommendations on what kind of toys we can get for Alex that are visual, how we can organize things for him, etc. I’m also really looking forward to working with this person and picking their brain.

We’ll have four appointments a month, and they’ll all be tentatively targeted to happen between 1:00 and 3:00 on Fridays at our house (which is huge!). That’s when Taylor naps and when Shannon’s mom is watching the kids, and it’s also one of the easier times for me to work from home or take PTO. I plan on being at as many of the appointments as I possibly can be. I really like the idea of Shannon’s mom being so involved because she’s a huge part of our kids’ lives. She’s already expressed how excited she is and she’ll take copious notes. Her readiness to do everything she can for Alex comes as no surprise.

That basically wraps it up. It was a whirlwind of activity that lasted for about an hour and twenty minutes, but I felt like Shannon and I soaked a lot of really good information up. We’ve DEFINITELY stepped up our game with the concerns that the PT brought up, and it feels good to be working on something with him / for him. I think we’ve already seen some progress; we’ll definitely keep it up.

My attitude toward Early Intervention is becoming increasingly grateful – I LIKE that Alex has all of these people who are going to be watching out for him and helping us know how to best steer him along the way. It’s like he has a team dedicated to helping him kick ass even above and beyond his hearing loss.

Next up – we have an appointment at Buffalo Hearing and Speech this week that I mentioned a few posts ago. We’re hoping Alex gets fitted for hearing aids and that we learn a bit more about the oral and total communication tracks that are offered. This Friday we’re supposed to have a follow-up meeting with the NICU Alex stayed at to follow up, but we’re hoping we can get out of it on the basis that we’re already in Early Intervention and getting evaluated, so there seems to be little point in wasting time by re-iterating that all is not honky dory. If we have to go to the meeting, however, we’re hoping to line up an appointment with the Genetics department there to get that moving along while we’re there. The hospital isn’t exactly next door to us and Shannon and I are trying to streamline these meetings wherever possible for the sake of our bosses’ sanity.

In other news, Alex continues to become an awesome kid. He’s very smiley and is starting to laugh a little more consistently, and he’s generally pretty easy going. He loves his family. I’m getting less sad about looking at him during these moments and getting my chin up higher as time goes on. It’s nice to see some of the initial pieces coming into place.

A Very Busy Week

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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.

A Sliver of News on the AN Diagnosis and other Thoughts

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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

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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.