#12 (Meeting BCH CI Team, Surgery Date, Choosing AB)

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Finn (age 7 months) & Kayla (4 years)

“Well, I guess, the fooling around is pretty much over!” That line from Caddyshack is a great representation of how we are feeling after yesterday. Seven months since this crazy train started and every once in awhile there is a day that ups the ante and yesterday was definitely one of those days!

Just to rewind a bit- Finn is part of the Cochlear Implant Program at Boston Children’s Hospital, which means that he has a group of specialists who all have Finn as their common patient.

This includes:

  • A surgeon (Dr. L)
  • An audiologist (Dr. O)
  • An Administrative Coordinator
  • A Speech-Language Pathologist (Dr. I)
  • A Psychologist (Dr. S)
  • An Occupational Therapist (TBD)

They even have big meetings together just to talk about him! Imagine some of the greatest doctors in the world, coming together to talk about the specific needs of your child. Have I mentioned how KICKA$$ Children’s is!?!?

First up was our meeting with our Cochlear Implant (CI) Speech-Language Pathologist (SLP) and our Communication Enhancement Psychologist (what a title!). We talked about the many services Finn is receiving and how he is developing and I got to have some nerdy shop-talk about language comprehension with them. The Common Core may or may not have been brought up. Ha.

Basically, they told us that Finn is doing great and we are doing everything possible to help him. Yay! We had met (and loved) the psychologist previously (I saw her speak at the CI convention in July & was psyched to find out she was on our team), but we were meeting the SLP for the first time and, once again, we are so happy she’s part of our team. She will meet with Finnegan every 6 months for years to come so our relationship is essential. She will also attend some of Finn’s mapping sessions . Dr. O, the audiologist, will do the actual mapping of the CIs after Finn’s surgery. (What is mapping? Click here to learn about it.)

FInn and Daddy checking out the art work- Finn loves the bright colors and the texture of the paintings in the waiting room.

FInn and Daddy checking out the art work- Finn loves the bright colors and the texture of the paintings in the waiting room.

Mommy's turn to tour the art with her baby boy. I kind of block it, but the mural behind me has ASL fingerspelled phrases having to do with Audiology.

Mommy’s turn to tour the art with her baby boy. I kind of block it, but the mural behind me has ASL fingerspelled phrases having to do with Audiology.

After that meeting, we went up to get blood work to send off to do some genetic testing. I try to tell myself that the results of this are only important in the fact that they can tell us if Kayla or other family members might also be genetic carriers of deafness, but to be honest, I still have a pretty strong desire to find out why he is deaf. I know it shouldn’t matter, but it does and I need to keep in mind that there is a good possibility that we may never know, but there’s also a chance these first blood tests come back with the exact reason. Until then, no matter how many rational ideas I hear or know, there will always be a crumb of guilt that somehow, it’s something I did wrong or could’ve prevented…as much as my reasonable side tells me that is bologna.

Within minutes of getting a ton of blood drawn, he was smiling and doing his new favorite trick: clapping when daddy claps!

Within minutes of getting a ton of blood drawn, he was smiling and doing his new favorite trick: clapping when daddy claps!

Next, off to meet our surgeon!  No offense to any surgeons out there, but they do tend to have a reputation for not exactly having people skills. Some come off as a bit condescending or “above” the average laywoman. Well, Dr. L destroys that stereotype in every way! I had had the pleasure of being in on a panel of CI surgeons last summer in which he was a speaker, so he was already on my radar as a potential for Finn; couple that with the MANY parent recommendations we got about him and we knew he was in the top echelon of CI surgeons at Children’s (and therefore, in the state/country). Meeting him yesterday was a huge step in this process. I mean, this is the guy who is going to be drilling a well into our baby boy’s skull, then stringing TEENY electrodes down through his cranium, into his cochlea, narrowly avoiding the nerves that control facial movement & taste, for an over 6 hour surgery. He might be the single most important person in Finn’s treatment.

And Dr. L  was brilliant. He did a great job of gauging what level of knowledge we were at (because I’m sure there are some parents who have a much better scientific background than us and many others who might be hearing what the surgery entails for the first time) and then explaining the surgery in extreme detail without ever once talking down to us or talking above our heads.

Here is a video describing a lot of what he told us:

This is the part that got exciting. Last summer, we were given a checklist of steps that have to happen to qualify and then be approved for the surgery. We have made absolute sure that we have checked each step off at the earliest moment possible. If they said,for example, that Finn needed an MRI between 4 and 8 months, we were calling for the appointment at 3.5 months. If they said we would probably need to decide on preferences for surgery “at some point” we sat down, did as much research as possible and were ready with our solid decisions at the very next meeting. This sounds a bit boastful, and you might be sick of hearing it, but I cannot stress enough how VERY VERY important it is to take control of anything you have the power to control when it comes to your kid’s health. Obviously, we could NEVER have done it without the invaluable resources we have had with Early intervention (EI) and Children’s, but as we’ve been told time and time again, proactive parents get things done faster and make everyone’s job more efficient.

Anyway, now that I have just completely come off as a pompous bighead, I’ll extrapolate on that with what happened next.

On our checklist, the order is supposed to be something like after seeing the surgeon, the CI team (all 6-8 professionals) will meet and talk about your case and make a decision whether or not your child will get the go-ahead to have Children’s do the surgery. Then you do blood work, CT scan, pick out a CI device, talk about what kind of Speech-Language therapy approach you will take, and a few other things.

During our conversation with Dr. L, we shared with him what we’d shared with the SLP and Psychologist that morning about how we had pretty much done everything on that list (besides the CT scan, since it wasn’t ordered yet) and we had made all of our decisions.

We explained the research we had done and how strongly we felt about having the implants done bilaterally (both sides at the same time/same surgery) and how, to us, it made more sense to add a couple hours onto one surgery than have 2 separate surgeries with the risks of anesthesia and also risks of making one ear the “strong” one and the other the “weak” one, never fully able to catch up to the ear that was implanted first.

We shared with him our extensive research into the different CI companies and asked his opinion on our decision to go with Advanced Bionics (more about AB below).

So we finish up our spiel and he picks up the phone and cryptically says to the person on the other line, “yea, they are definitely all set, come on up.” Haha, I felt like we had passed some sort of test.

We had been told (as recently as that morning!!) that we would have to wait to find out a surgery date and for the team to have their meeting and discuss our case. On our checklist sheet, there were definitely a few steps left before something more “official” was told to us. Instead, in walks in the Administrative Coordinator (she is basically the conductor of this CI orchestra and handles almost all the insurance stuff, schedules all the appointments, and pretty much keeps everyone’s ducks in a row). Dr. L gives us this kind of half-smirk and I can’t remember exactly what he said, but something to the effect of  us seeming to have a pretty good handle on everything and the we were “obviously knowledgeable” in our decisions (see, I blame our specialists for my sense of self-importance haha). At this point, he said the CI team meeting was more of a formality than anything and we were good to go!!

The Admin. Coordinator sat down and said the words that gave me & Dan chills: “How does February 27th sound for the surgery date?”  AHHHHHHHHH. A date. What is it about having the date set that made it SO INCREDIBLY REAL. I felt like I was going to throw up and I wasn’t sure if it was from nerves, excitement or some combination of both! Dan’s face showed such an identical reaction that I almost laughed out loud.

surgery date

Then it was kind of a whirlwind. A nurse came in to ask us a bunch of routine pre-surgery questions and order a CT Scan for Finn to look at his ear bones. Then, she sent us up for more blood work (poor Finn was such a trooper as the nurse had to stick the needle in and draw blood from almost exactly where he had had it done about 3 hours earlier!) to analyze before the surgery.

And this is where the unique set up of Children’s CI program has its advantage. As I’ve shared in previous posts, the CI program has it’s own area in the hospital. So, at another hospital, to see the SLP and then the psychologist and then the surgeon, we would have been going all over the building to those different specialties. I’m sure this does not make a massive difference in treatment, but yesterday was proof that it makes a big difference in ease of communication (and when isn’t communication a vital part of anything in life?). Besides making it easier for us as parents walking room to room instead of wing-to-wing or even building-to-building, it also made it so when Dan asked a question about our CI device that was better suited for an audiologist to answer, they just had us walk down the hall and grabbed her from her office for a quick chat. We hadn’t had an appointment; we didn’t even have to find an office. We just had a quick question that was easily answered and then Dr. O, our audiologist, -who, I know has her own schedule and probably a million things to be doing- took the time to go get the actual device, show Dan all the parts, and chatted about it for about 15 minutes, thoroughly answering his questions and sharing her own expertise. Just because she happened to be in the hallway when we were on our way out.

A note about our decision to go with Advanced Bionics: choosing between AB and Cochlear (and to some extent Med EL) is like choosing between a Porsche and a BMW (I stole this analogy from someone, can’t remember who). Every person we have talked to or read about (and that is a huge number) is happy with the device s/he has. We have never heard anyone say they wished they’d gone with a different company. That being said, it is still a major decision because it’s essentially choosing which computer you are putting into your child’s head FOREVER (and you thought deciding between the iPhone and Galaxy was a tough decision!).  To make the decision even harder, both Cochlear and AB had brand new processors approved this year, so that didn’t help sway us. Ultimately, we chose AB because of the conversations we had with adults who chose AB for themselves and some differences with electrodes (and other technical stuff that Dan is much better at explaining) and, to a lesser extent, the waterproof capability (to be fair, Cochlear has a waterproof case, but not a full waterproof device like AB). The best part of making a decision like this is that though we did take painstaking measures to find out as much as we could about both companies, we knew whichever way we went, we would be in good hands. I want to give a big shout out to both companies for their excellent customer service and availability through e-mail, Twitter, & Facebook. I was amazed that I could send out a Tweet asking a question specific to my needs and both companies would respond within 24 hours. I wish more companies in life had this level of customer outreach.

ABLogo

Those of you on Pinterest, Advanced Bionics is on there and even people who are not even remotely in need of CI information would find their pins really neat. Some heartwarming videos and just plain old cool stuff!  AB Pinterest Site.

Here is a boy named Andrew who had gotten Advanced Bionic Implants when he was a baby, but just got the new Neptune AB processor (which is waterproof) and his first bath being able to hear:

Another advantage to Children’s set up was that while Dan was talking to Dr. O., I got to meet an absolutely beautiful 19-month old girl and her mom who had just moved from Ireland to have the CI surgery and future treatment at Children’s hospital just the month before. They shared their stories and the struggles they faced being in a country that doesn’t have the newborn hearing screening and how they were told again and again that their daughter probably just had fluid in her ears or was just not focusing. I invited her to the Shared Reading Program and asked a passerby (no idea if it was a nurse, secretary or doctor) if they had any extra fliers for it, and we had one in about 1 minute. We talked about American Sign Language and all the resources we had been able to utilize for free. And seeing this beautiful girl, smiling and laughing when Finn made babies noises and looking from person to person as we spoke, obviously hearing the world around her, when only a MONTH before she had heard nothing, was inspiring. It also reinforced to me how very fortunate we have been in where we live. Not just living in the U.S., but in Massachusetts. People as close as New Hampshire have been told that there just are not as many or as good of resources for deaf children in their state, especially when you compare it to Massachusetts and other states like ours.

There are a few more updates to share with you all, but I wanted to get the big stuff out of the way first. Look for another post Friday or this weekend for a more general update of Finn’s progress, development, and other happenings since it’s been a while.

I leave you with three things today:

First, you may have thought that Amazon announcement about possible droid package deliveries was cool, but what about bracelets that translate sign language?! Read here about this technology that may be available in the very near future:

http://abcnews.go.com/m/story?id=20963684&ref=https%3A%2F%2Fm.facebook.com

Second, a touching article from a mom about how adults and kids sometimes react to her special needs child and some things to help you if you are in the situation. Just having hearing aids has elicited varying responses from strangers and I am sure that will be 10 fold once he has what looks like headphones attached to the side of his head. I think the woman in this article does a great job of not shaming anyone who has reacted negatively or awkwardly because most of those reaction do not come from someone trying to be mean, but rather, someone who just isn’t informed/never has had experience. Anyway, she explains it much better than I could:

http://www.andbabiesdontkeep.com/talking-to-kids-about-disability-and-he-who-must-not-be-named/

And lastly, I’m not the most up-to-date person when it comes to the world of reality TV, but I guess last season on Project Runway, there was a deaf man who has Cochlear Implants and he shared some interesting food for thought about myths of being deaf. You can read that article here:

http://www.chicagotribune.com/health/sc-health-1030-justin-leblanc-20131030,0,1549786.story

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