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.

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Mission 6/6: Success.

Yesterday Shannon got a call back from the insurance person she had spoken to a few days ago with the wonderful message that we had actually been pre-authorized. This means that Alex is now a go for his 6/6 surgery and will have a few extra months worth of hearing than the current FDA-recommended minimum. By the time Alex goes to his oral-deaf school, he will already have eight months of hearing under his belt.

I think I’m still in shock. I was fully expecting that we were going to have to file a formal appeal. We were all ready to start pushing things and calling whichever party had the ball in their court until we had our approval, but it wasn’t necessary.

I wish I could say what EXACTLY got us pre-authorized if it would help anyone else, but we can’t be 100% positive. Our theory is that the pre-auth department opened the case, saw that our surgeon had already stated why we wanted to go in early (I want to get whatever he sent in and post the important bits here), and also saw that Shannon and I were all over the process and clearly were ready to appeal hard, and decided at the end of the day that it’d be more cost-effective to push us through on the basis that they’d be paying for the operation a few months down the road anyhow.

So we’re thrilled. Alex is going to hear when our family and friends sing “Happy Birthday” to him in September, and he’s going to be soaking up sound when he’s still young. This is his best chance to have age-appropriate speech at the youngest age possible, and even though therapy and our work with him is going to be a huge part of the battle, it all requires the raw materials to be in place and now we’re in position.

Next steps: We have an appointment scheduled with our ENT / surgeon in mid-May to ask any questions we might have about the procedure and pick out what sort of accessories (remote control, extra cables, batteries, etc) we want to get along with Alex’s cochlear implants.  We’re still thinking we’re going to go with the Cochlear N6s. I want to see the full list of accessories we can get for it as well as an idea for what the limitations are on how much stuff we can get, but Cochlear’s website is basically a pile of shit so… we’ll see.

Thrilled to be in this position, though. A lot went down this week.

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.

Mission 6/6: Day Two

Actually went pretty well.

For whatever reason, the ENT called Shannon instead of me, but the news was still what we would call “good.” They finished submitting the pre-authorization on Wednesday to insurance, which is great. I had a weird feeling that was going to slip by a week or something.

More importantly, they told Shannon that they (meaning the office and the doctor) are completely planning on filing a petition. Since we didn’t know if the doctor would have any sort of issue doing that due to time constraints or prior experience, it was really relieving to hear that they’re on board with fighting to make Alex’s June date a reality. While on the phone, Shannon told the office that we had also reached out to our audiologist and were getting something from her for the appeal and asked if there was ANYTHING else we could be doing. The person on the line said “no,” but I think I’m going to start compiling that list of research demonstrating the benefits of early implantation. I’d LOVE if I could find something that would imply that BCBS could potentially save money down the road by going in early, but that’s probably a stretch goal.

Next steps are to find out about getting Alex’s ears drained out, but I’m almost afraid of doing that too early for fear that the fluid gets drained in the next few weeks, only to come back right in time for the surgery. We’ll see how that goes, but the most important thing right now is to know that we’ve successfully rallied the troops. Starting this Monday I’ll start hounding BCBS about getting the pre-authorization through whether it’s accepted or rejected, and I also need to ask about the appeals process.

Kid wants to hear.

Mission 6/6: Day One

When I write this blog out, I think about it from the perspective of what I would’ve wanted to read when we had first found out that Alex was deaf, to know the details of how the whole process really worked instead of just reading vague statements about how there were lots of appointments and lots of healthcare struggling. That’s definitely not a jab at the myriad amount of people who’ve currently written about the same topic, but I always appreciated it when someone went into a little detail, so I’m going to do the same thing here by giving the day-by-day events whenever anything happens on our mission to get Alex implanted as early as possible. Our current goal is to to try to keep Alex’s current surgery date of 6/6, and if that has to slip, the very next available date possible.

After all of the events that transpired on Tuesday, we decided to give our ENT until Thursday to finish submitting the pre-authorization before starting to call daily until it was done. We also wanted to start working on the appeal and gathering as much material as possible for that. To that end, we emailed our audiologist, who agreed to write something up for us on our behalf. She probably thinks it’s just a small thing to do, but we definitely appreciate the hell out of it, since her professional and veteran opinion carries weight. Anyhow, she said she’d try to get that out to us by Friday.

I left a voicemail with the ENT this morning saying that I wanted to confirm (gotta use that word) that Alex’s pre-authorization for surgery was sent in and to also ask if we could go with a different ENT than who was recommended for Alex’s ear tubes given the aggressive schedule. When they call back, if they say that the pre-auth was sent in, I’ll ask about typical turnaround and see if there’s a number I can call to inquire about status, make sure it’s received / processed, let them know that this is six weeks away, WHATEVER I can do to push it along. I’ll also ask the ENT if they can start getting an appeal ready if that becomes a process, offering to help however I can in compiling scholarly articles, mentioning that we’ll have an official recommendation from our audiologist, etc.

I have a feeling that if we’re going to get burned somewhere, it’s going to be when the insurance formally rejects the pre-auth and the ENT doesn’t have an appeal ready to go shortly thereafter. I plan on asking allllll of the details around this, but BCBS’s appeal process can supposedly take around a month to complete, so a quick turnaround between rejection letter and filed appeal is key.

We’ll see how those calls go and I’ll be sure to write about what I learn here.

I’m starting to get the impression between the conversations we’ve had so far and from some responses we’ve had on our Facebook support group that not a lot of parents are too aggressive after health insurance initially denies the procedure. Personally, I can’t relate to that, especially given all of the research about the benefits of early implantation and just the raw prospect that he could be hearing and soaking up sound sooner than later. I’m not sure if we’re forging new territory locally here or not, but we’re definitely going to put up a fight.

Getting Ready to Go to War

Just before lunchtime yesterday, Shannon gave me a ring and asked me what the worst thing I could imagine happening right now would be. My heart immediately started racing and I started thinking that she had gotten a call back about the genetic testing or that Alex was somehow no longer eligible for CIs or something equally bad, but I asked her to just tell me what was up.

Our ENT called her and stated that our health insurance company, Blue Cross Blue Shield, had not only denied Alex’s June surgery pre-authorization (where the ENT / surgeon makes sure that health insurance is on board with a procedure before it happens), but had also stated that if we attempted to appeal it and lost that Alex wouldn’t be able to undergo the procedure until a year after the failed appeal.

I calmed down a bit from there because that information sounded completely odd. I’ve worked in health insurance before and even though I wasn’t processing claims, I worked closely with the people who do, and I’d never heard of that sort of punishment for failing an appeal. Shannon and I both believed that what was actually meant was that if we lost an appeal, that Alex wouldn’t be able to get his implants until HE turned one year old, which would make much more sense.

At the end of the phone call it was decided that I would call BCBS to get confirmation that our suspicions were correct about the one year figure and that Shannon would call our very helpful audiologist to get her take on the process and basically let her know that we’d be going for an appeal that she would likely end up contributing to.

It took me about a half hour to get my answers, but after getting off of the phone with BCBS, I had learned two important things.

  1. That Shannon and I were right about the one year thing, and
  2. That the pre-authorization was never formally denied.

Figuring out number one was the most important piece at this point, because it was basically expected that we’d have to appeal but not that there would be an awful punishment in place should that appeal fail.

Number two was also key to know because without a formal denial, there can’t be a formal appeal. I called our ENT and asked to set an appointment up with our doctor surgeon so that we could discuss the process of the appeal, ask him how these things generally know, etc. The nurse / administrator I was on the phone with was obviously trying to lean us away from that direction, which I was alright with as long as things kept moving. The most important thing at this point was to CONTINUE the pre-authorization that the ENT had stopped after BCBS called and said it likely wouldn’t be cleared. Before they called Shannon, they were getting ready to cancel Alex’s surgery date! Once they file the pre-auth, we’ll get the rejection which will list whatever objections the health insurance company has, and then an appeal gets sent back refuting that reasoning or demonstrating the medical necessity / benefit of doing something contrary to those reasons.

That’s all well and good, but we’re only about six weeks away from Alex’s scheduled surgery at this point, so this is going to require some crazy amounts of pushing.

We plan on talking to our audiologist who has put some of these appeals together before and see if she can draft a personal recommendation for Alex. I’m going to collect a list of all of the research from Google Scholar that covers the benefits of early implantation. We’re also going to ask our physical therapist if she can write something up formally about what she’s told us, which is that deaf children sometimes don’t develop physically quite as fast as their hearing peers because they can’t take advantage of auditory stimulus to, say, attract their attention in another direction or entice them to roll over. The ENT will also likely write something up about the low-risk of the operation itself.

Apparently the appeal process can take up to a month, but our hope is that given our surgery date and how common performing this procedure early is combined with our plans to call daily and ask for updates, that we can get this done in time… but it’ll be tight, and it’s going to require our ENT to be on top of things (we’re going to call them daily as well).

Shannon and I came up with this plan over another phone call about 45 minutes after she had first called me.  I hung up the phone, and then got another call. The ENT office again. They said that based on the MRI showing a bit of fluid in Alex’s middle ear and the results of a tympanogram test we had asked to be done, that they wanted Alex to see another ENT and have his ears drained since they have to be clear for the surgery. I immediately got on the phone with the ENT they pointed us to and asked to be put on the priority call list after explaining the situation, especially since they needed to do a consultation meeting first prior to a procedure, if it was deemed necessary. Again, we have six weeks for what’s probably going to be an ear tube procedure.

So the heat is on and the pressure is up, but we’re going to do everything that we can to get this done and get Alex his surgery in June. He’s ready, the benefits are obvious, and it would be a travesty if he lost a few months of hearing time because of red tape. The good news is that even if Alex had to wait for a year to get implanted, the results are still very favorable, but there’s really no advantage in waiting aside from the prospect of a better CI coming along in that time frame. The healthcare pushback is also a common thing, so it’s not as if we’re seeing something wild and crazy. I’d feel a lot better if we had another three or four weeks, but we’ll deal with it. It seems that booking time in the OR for these surgeries can be tough to schedule, so if we lose our June date, I’m not sure how far back that would push us, so it’s go time. Time to REALLY start going to bat for our boy.

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.