It’s OFFICIAL, FINN IS A CANDIDATE FOR COCHLEAR IMPLANT SURGERY!!!! What an AMAZING feeling! This is a huge step in figuring out what direction Finn’s treatment will take. It opens up doors and gives us (and down the road, Finn) CHOICES.
The final step in Finn qualifying for CIs was an MRI he had on July 26th. Dan & I both wrote a lot about that day on our Facebook page so some of you might know that it was not a very fun experience. The poor guy couldn’t eat for about 10 hours and also had to have IV anesthesia – and at 3 months old, there was no way to tell how well his body would handle that. It was a pretty sleepless night the night before and an anxiety-filled day. We got to Children’s at 9:45am on the dot and he was prepped and ready to go by 10:30 and only then did we find out that the first MRI they had that day had run long so they wouldn’t be able to take us until 12 noon. Dan & I did everything possible to keep our little man happy (including some pretty sill dancing & singing) and tried to not give off too stressed of a vibe. Sitting there though, not knowing how he would do when he was sedated, not knowing if he’d have trouble breathing (the “intubation” info the anesthesiologist gave us did little to set us at ease!), and knowing that the results from this test would tell us if our son would ever have the possibility of ever hearing our voices, was a little much.
I have to give props to Finnegan though- he was a trooper! Didn’t even start fussing until they gave him the IV and he came out of anesthesia very well. He was smiling within 5 minutes of waking up and took a bottle within the next 15 minutes! This is an indication of how well he will take anesthesia come surgery time (though that will be a much heavy dose!).
This was at hour 6 without eating and he was still smiling : )
Trying to distract him pre-MRI in any way possible! Loved the “little” Johnny they gave him to wear!
Poor bubby got an ice pack for his foot IV…the Pulse Ox thing on his toe was kinda cool though.
Daddy feeding him his 1st post-anesthesia bottle, which he took like a champ!
First minutes of wake up…even though he looked terrible (to us), it was a HUGE relief to see those eyes open and take him off the machines!
Like I said earlier, these results set us up for a much more structured path over the next few months. Things have been pretty up in the air as to next steps for us, but with just one MRI, we have a solid map of what the next year (years to come actually) will look like if everything goes as planned. We have been accepted into the CI Program at Boston Children’s Hospital which puts Finn on a CI team. The team includes: his family, a CI audiologist (different from his current audiologist), an administrative coordinator (to handle paperwork & fight our insurance battles for us- more about that below), a Speech-Language Pathologist specifically trained for CI patients, a psychologist (to walk us trough the process as a family & help us understand development growth, & what our expectations should be having a child with CIs), an Occupational Therapist, again, specifically trained for CI patients, and a CI surgeon. These are just the people who Finn automatically sees, but if other specialists are needed, Children’s has just about every specialty.
We have met out CI Audiologist and she is great! We talked about some of the things to expect and she confirmed that we will be aiming for the CIs to be done when Finn is 10 months old. This is a bit of a challenge since the FDA is dragging their butts on lowering the age and still has the official recommended age at 12 months, but Children’s has been doing 10 month olds much more routinely now. It is just a matter of getting insurance on board. An interesting side-note: we found out that NYU is regularly doing them at 8 months old because insurance in NY is not as rigid as MA. The researchers are coming out with more and more studies linking early CIs with better results and really, after 6 months old, risks of anesthesia and bone migration (the skull is still forming so the bones are still moving) don’t really differ from that of a 12 month old.
After meeting our audiologist, we also had a GREAT opportunity to attend the 2013 Northeast Cochlear Implant Convention– a convention that only happens once every 2 years that we randomly found out about and were able to attend thanks to Children’s for getting us a ticket (also, thanks to Brenda who originally let me know about it!!). We are so lucky to have been able to attend this before he has his surgery so that we could get information and see and talk to kids and adults of all ages with CIs who were implanted at all different ages. You can read all about how much a CI can enhance a kid’s life, but actually talking to a kid or a kid’s family who has one, went much further to reassure us that Finn really is going to have every opportunity a hearing kid has and though he will always be deaf, it doesn’t mean that he won’t hear.
We had a couple of things we really wanted to focus on at the convention. First and foremost probably being which CI company to go with. This is such a hard decision to make. There are three companies we can choose from ( Cochlear, Advanced Bionics, and MED EL) and positives and negatives of all of them and not having any background in the field, Dan & I are in research mode times 1,000 to make sure we choose the best option for Finn. It is a bit overwhelming knowing that we are deciding about the piece of computer they will be permanently putting into his skull!! YIKES. We were reassured by many people that there really is no “wrong” decision. All three companies are great and not one person either of us talked with wished they had gone with a different company. I think we have narrowed it down to two, but still have some research left to do before we decide.
I think one of the most important messages Dan & I have learned and want to convey to friends and family is that a Cochlear Implant is NOT a magic computer nor a bionic ear (though this term is thrown around a lot I noticed, even at the convention). Finn will always be deaf and even with CIs, he will always have to “work” at hearing. Something that drove this home for us was a conversation Dan had with a woman who was working the convention and also had a CI. She and another CI user were talking about the day and he made a joke about her using an interpreter all day. She laughed it off, but explained to Dan that with all the work she was doing, if she had to use her active listening skills all day she would have been too exhausted to drive home that night. Now, it does seem like every single person with a CI has their own version of how it impacts their life or how they manage using them, but this was something that we had not really considered. We knew that crowds might be hard for him or other places with a lot of loud noise could bother him and that we have to make sure we do things like talk face to face and (in our case) supplementing with ASL will help, but I don’t think it ever occurred to us how much he is going to have to “work” at hearing. We also know that EVERYONE is different and although the technology is getting better and better and we are on board to do the most intensive therapy we can to get Finn on a mainstream level, it is not a guaranteed success. The amount of hearing he gains could vary pretty dramatically. We just have to do the very best we can on our end and be happy with our results knowing we gave it our all.
The Keynote speaker of the NECI 2013 was an author named Michael Chorost. He has written a couple of books (and writes for Wired magazine, which is just plain cool), including the book below about getting CIs at the age of 33 years old:
Rebuilt: How becoming Part Computer Made Me More Human
I have read articles on CIs until my eyes blurred, but his talk went the furthest into helping me understand explaining how my son will hear. He gave a great example. I will try to repeat it here:
Try to read the following sentence:
“lk rdg txt wth hlf th lrs whtd ut.”
It took me a while, but I finally worked out that it said:
“Like reading text with half the letters whited out.”
He said that hearing with a CI is like “constantly figuring out what the vowels are”. He went into great detail about what hearing with CIs is like and I filled about 10 pages of notebook paper that I will spare you from reading, but trust me, it was all awesome information!
Besides talking about CIs, Chorost did a great job of talking about being out in the real world and “equalizers” that put him and anyone in the world on the same playing field as anyone else. It was a pretty inspirational speech and I am looking forward to reading his book.
In addition to the Keynote speech, the other two sessions I found most interesting was the session on child development specifically for a child who is deaf and a Meet the Surgeon panel where A LOT of questions were answered about the surgery itself. I actually got to meet and talk face to face with two of the Children’s surgeons, one of whom may potentially be Finn’s.
I feel like I have glossed over a lot of what’s gone on the last few weeks because to go into detail about everything would turn into a 20 page post, but if there is anything you have more specific questions about that I mentioned, please feel free to ask me or Dan and we’ll happily go into detail. I will also write another post soon to fill in some of the other things I left out tonight.
I leave you with two things tonight: The first thing is a link for you teachers out there. It is about acoustics in the classroom and it is NOT specific to CI STUDENTS. It is REALLY dense, but definitely worth a skim through if you have the time. It shows what an impact the acoustics can have on all kinds of aspects of the classroom and the students:
And lastly, some pictures from the NE Cochlear Convention (some I took and the rest are from the NECI2013 facebook page):
Comic Book about a kid who saves his town with his “Robot Ears”
Kid’s percussion instruments up for auction
Teddy bear with a CI
A soccer ball creature created with CI parts.
Got to meet this little cutie. Not even 2 years old and had her CIs for about 8 months and almost caught up with her peers already! Amazing.
Author Michael Chorost
Kris Martin. IRL Professional Race Care driver who has a CI was there to hang out and chat with the kids/teens.