#6 (1st ear Molds)

Finn had his first (of his bi-weekly) ear molds done today. These molds were made out of a silicone foam that took an impression of his ear canal for his Hearing Aids. The Hearing Aids were ordered today and will be in July 18th.

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New nickname: Puddin’ Ear

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Ear Mold #2
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Sizing up a Hearing Aid to see if it will fit.

You might be wondering why he has to get Hearing Aids if he is profoundly deaf and those won’t make him hear. Well, first and foremost, if he is a candidate for Cochlear Implants, it is mandatory that he wears Hearing Aids for a certain amount of time first. This rules out any possibility that his hearing can be improved with Aids instead of major surgery. Basically, this is a formality because with Profound Hearing Loss, Aids really don’t do much. That’s not to say that they don’t do anything for him though. At the very least, they will help stimulate some nerves in his brain. They know from the past that kids’ brains whose hearing nerves aren’t stimulated while young start switching to relying more and more on other nerves, like one’s for sight and for lack of a better term, the hearing nerves atrophy. Basically a use it or lose it situation. So even if he isn’t hearing, he is still being stimulated. Plus, there is a slight chance that he could hear some lower frequencies with the aids in, but that is not very likely.

One cool thing our Audiologist said to us is that this is the youngest baby she has gotten aids for by about a full month. She has been in the field for 30 years and says that Finn is ahead of the game in every aspect of his treatment (Early Intervention, Audiology, and all the appointments that go along with qualifying him for CI surgery) and is VERY happy (almost seemed surprised) at how well he is developing in other areas -basically no difference at this point between him and a hearing 2.5 month old, yay! Another HUGE shout out to Stephanie because without her input early on, I would not have known where to start and would never been at this point already!

One thing I knew already, but has been driven home hardcore is how much parents can influence treatment of their children by being advocates (and maybe slightly pushy…and maybe, very rarely, a snarling Mama Grizzly :o) ) There have been many calls to our health insurance where I have felt like I have to educate them on the process and usually they come around to understanding why they have to pay for an EKG or an eye exam, for example, when it is his hearing that is the issue. At other times, things are just not moving at a pace that I am happy with and it is amazing how many times a simple, polite, call or email will help nudge some paperwork through and move the process along- (actually, starting tomorrow, Children’s Radiology secretaries will be getting used to hearing my voice every morning as I call daily until they move up Finn’s MRI. Sorry, but I’m not waiting til the END of the month to find out the most important information for the future of Finn’s treatment if there is any opening to be had earlier!).  We’ve also had to make hard decisions in order to get the best care. We ended up having to switch Pediatricians because we were having to fight for every appointment to be at Children’s. We have now been to both Tufts & Children’s multiple times and I cannot tell you how much more comfortable we’ve  been at Children’s at every level. It is no contest. And if that is where we feel he will get his best treatment, we shouldn’t have to fight for it to be there, especially when it wasn’t a health insurance problem, it was a practice affiliation (which we are finding out is a lot more BS than we previously thought). We lucked out with our new Pediatrician and after one visit, both of us feel extremely confident that we made the right choice.

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An example of Children’s level of care: They had this book waiting for Kayla to take home to teach her about her brother’s Hearing Aids. ❤

So Hearing Aids are on their way, ASL program is in the works (a big shout out to the amazing response from family members in wanting to join us for this class; we are very touched by this and will keep you informed of when it will begin), MRI & Genetic testing scheduled for July- afterwards which we will know if he can get the Cochlear Implants!!!! I may not be religious person, but definitely willing to accept any and all prayers, good thoughts, juju, Karma, or anything else people want to throw our way as this HUGE part of his diagnosis gets closer!

One final note: I have had a lot of people come up and thank me for starting this blog, saying that it has allowed them to follow Finn’s progress and feel part of it without having to bug us or ask invasive and/or uneducated questions. I just want people to know that they should feel 100% comfortable asking any and all questions they might have. Dan & I knew nothing of what this journey would entail and have only learned about it by starting with the very basics and asking/reading until we found answers. Any questions you may have are probably ones that we have already asked and would be more than happy to share with anyone. The doctor’s warned us that when he gets his Hearing Aids, and in the future when he (HOPEFULLY) gets the CIs, strangers and others might be very keen to asks us questions (or even, as we’ve already experienced few times, offer condolences as if he has some sort of life-threatening disease) and we want to make absolutely sure that we show Kayla & Finn that there is no shame, no embarrassment  in Finn’s hearing loss. It is simply a part of his life that makes him unique. People showing interest, asking questions, etc. is welcomed because it shows that we are not alone in supporting Finn. We have had only very minimal negative experiences so far- an example  a woman in the supermarket asked Kayla about her brother and when Kayla told her that he was deaf, she said, “Oh, no, oh my God, I’m so so sorry.” Kayla’s response is one that I hope everyone who knows Finn will keep in mind. In classic Kayla fashion she replied, “ummm, he’s fine, ya know!” She was confused at why this woman would be feeling sorry for her baby brother when, to her, he is like any other baby brother in the world. So lucky to have such a great kid who knows exactly what’s up.

That’s all for know. Any questions, comments, you can leave here, but also feel free to text/e-mail/Facebook me if you feel more comfortable.

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Kayla reading to Finn…this is the morning that she said to him “Don’t worry, I’m going to look EVERYWHERE and find a machine that will make your ears work.” <3<3<3

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