More on the CI Journey

Yesterday we were at Nemours in Wilmington (the children's hospital where all Ryan's appointments are located) doing some fun hearing aid fittings.  I must say, Ryan is such a trooper.  The ear mold for her left ear wasn't correctly fitted, so the tech tried to fit it correctly for her.  Unfortunately, after about an hour of putting the hearing aid in and out repeatedly, she thought it would just be better to remold her ears again.  Which, I'm definitely not complaining as taking molds of her ears are great so that her aids will continue to fit her as she grows.  In the mean time we do have a left hearing aid that works, it's just kind of hard to keep in her ear consistently.

Ear molds!!  I laugh at this pic because the tech and me wore her out and she fell asleep during the molds.  Too funny.  The tech said that a baby falling asleep during all this was a first!  Ha!!

After the appointment that ended up lasting 1.5 hours, we had to rush home to meet with our Early Intervention coordinator.  (Weekly appointments).  We had a ton of fun with Ryan and her hearing aids on.  I will film her and put it on here, but basically, Ryan is responding to sound!  Which is awesome!!!  I'm trying to not get too excited, as she definitely does not respond to speech or normal noises, but she does respond to really loud (seriously loud) noises with her hearing aids on.  I'll take a couple of videos and you'll see what I mean. It's not like she is really turning her head consistently towards the loud sound, but she blinks and/or her eyes open really wide-- it's the faintest of response, but it's still a response.   I'm just glad that these hearing aids will just help her little brain be stimulated prior to 9 months with the CIs.

Also, we spent last Friday evening down in Wilmington-- these trips are pretty much weekly now-- for a Cochlear Implant Christmas Party at the Nemours. As any normal obsessed parent would, Sean and I saw this as a fantastic networking opportunity.  

We learned a lot from many parents, from which CI manufacturer they chose for their child and why, and which school they chose to send their child to for learning.  Many parents send their kids to The Clarke school, which is an oral / auditory school for the deaf located 20 minutes from our house.  There are only four Clarke schools in the country where children who have a severe to profound hearing loss learn speech as their primary language.  No sign language is even taught at the Clarke school--not even baby sign language.  Now, if you have a child who is hard of hearing, you probably know that this methodology of not teaching deaf children ASL (American Sign Language) is pretty controversial as there is much research in support and in disagreement of ASL correlating to spoken language development.  A few of the couples we spoke to that evening send their child to pre-school at the Clarke school, and love it, as their children's language has just taken off while preparing them for mainstream kindergarten.  This is so encouraging since almost all of the parents we spoke to, their children were implanted no earlier than 15 months, and all were sequential implants- no bilaterals.  So, even though I keep telling myself I want Ryan to have CIs earlier, I guess I'm okay with 9 months, bilateral.  I just wish it were tomorrow.

As far as manufactures go, we are still doing much research and plan on sitting down with a rep from each manufacturer to understand the future plans and pipeline for each product.  Sean and I are confident that all three CI manufacturers are solid options from being able to understand and learn spoken language, but we want to know what the future is for each of these companies, and how are they looking to enhance their technology further.  

Up next, Genetics testing on January 3rd!!!!