Great news! Went to the Ophthalmologist yesterday and they did a whole bunch of different tests and all of them came back normal for Finn’s age! It is a huge relief because that rules out some syndromes that could’ve gone along with hearing loss. The visit was at Tufts Floating Hospital instead of Children’s Hospital and I can’t exactly pin point it, but I just felt out of sorts there. Both doctors were super nice and I trusted them completely, but the rest of the place- from the condition of the bathrooms to the friendliness of reception- just didn’t have the same feel as Children’s does. We are probably spoiled because Children’s is just above & beyond from the second you walk in, but when dealing with major issues, isn’t that what you want??
The reason for Tufts is that our pediatrician does not have an affiliation with Children’s and therefore, cannot usually refer to them. Through a loophole, he did get us referrals for the Audiologist, but not other specialists. We are in a hard position again because this year there might be other specialists we are referred to and after yesterday it confirmed to us that we don’t want to be pigeonholed into any other hospital. We have an MRI coming up and I will not go anywhere but Children’s for something that major! So we are back to where we were a month ago with probably needing to switch pediatricians. The good news is that I think we found someone who not only is affiliated with Children’s, but also currently sees a child with hearing loss so she is familiar with what he is going through.
Today we were back at the Audiologists for another series of hearing tests. They re-did the ABR (The auditory brainstem response (ABR) test gives information about the inner ear (cochlea) and brain pathways for hearing.) and found the same results as Mass Eye and Ear did -diagnosis of Profound hearing loss where he had no response in either ear for anything up to 95 decibals (about the level of a music concert), which is the highest they can test at this age. This ABR went WAY smoother than the last one, which took over 4 hours. Again, Children’s being designed to treat Children they had a couple things available during testing that Mass Eye & Ear did not. The coolest being the “headphones” that played the sounds- at MEEI they balanced huge headphones next to his ear that fell every time he moved (one reason the test took so darn long). Here is what the Mass Eye & Ear headphones looked like:
Today’s test, the headphones were actually just a little wire that they stuck in his ear! So cool:
Besides the headphones, he had a bunch of electrodes attached to read his brainwaves. He got a nice little exfoliating facial first. Pretty much like a free day at the spa ; )
In addition to the ABR, he also had a Tympanometry test (assists in the detection of fluid in the middle ear, perforation of the eardrum, or wax blocking the ear canal) which came back normal- meaning that the hearing loss isn’t cause by something like ear wax build up or an easier-to-fix issue (we were told this was probably not the case anyway, but was good to double check). Lastly, they did an Otoaccoustic Emmissions Test (Otoacoustic emissions (OAEs) are sounds given off by the inner ear when the cochlea is stimulated by a sound) which just confirmed all the other tests by showing no response.
Even though these tests didn’t give us any new final results, it was good that they were consistent so we weren’t DEEP down inside thinking maybe, possibly the tests were all wrong. There really is no room for doubt at this point that Finn definitely has Profound Hearing Loss. Also, it is good to have these results because between this and the Ophthalmologist appointent, we are starting to narrow down the outliers that would prevent Cochlear Implant surgery. Cannot wait for that MRI in July to check out his anatomy and see what’s going on in there!
It will be a busy, busy summer. I go back to work for just one week next week, and then starting the week of the 24th we have weekly visits from a Teacher of the Deaf, a weekly 2-hour parent-infant group, a weekly visit from a representative from The Learning Center (Deaf Early Intervention Program), bi-weekly ear mold/hearing aid appointments, regular visits with the ENT and pediatrician, plus a visit to a Geneticist, an MRI, and I am sure some other test will pop up! Kayla’s school ends June 19th so she will be thrown into the mix a lot more as well. A bit overwhelming, but we have to keep in mind what the doctors told us at our first visit: this is a very front-loaded condition; a TON of stuff to do the first year, a lot the next few years, but a few years from now, it will just be check-ins.
Kayla & Finn continue to be troopers throughout this whole process. Kayla loves to explain to people what it means to be deaf. She also let me know that one of her baby dolls is deaf “just like Finn!”. She asks me almost daily what different words are in sign language and we go to the internet and look up the video ad practice (I could not find “Disney World” in sign language so I need to ask about that!). She seems genuinely interested in hearing about his doctors appointments when she gets home from school.
Finn is being amazing for how much he gets shuffled around and forced to either be awake for some tests, asleep for others, unfed for a little while for others- he isn’t on a schedule yet or sleeping through the night, but we get good stretches out of him and honestly, how can we expect him to get on a regular schedule when every single day he has a new schedule! All I care about is that he is happy and healthy and both of those things seem to be very true right now.