3 days and counting

There are three days left until we go to see Dr. Antonelli at UF Shands. Part of me is terrified that he will say that she is not a candidate. The other part of me is terrified that he will say she is a candidate. The surgery seems scary and it is hard to imagine them shaving off half of Lily's pretty blonde curls and making a permanent, quarter-sized hole in her skull.

Part of the process in getting ready for this appointment has been gathering up copies of all the evaluations that Lily has had and of all the audiological testing. In an earlier post, I described my memory of Lily's early tests. It turns out I was pretty close. Lily did pass the newborn screening in her right ear and it was because she was too awake that testing on the left ear was incomplete. It was 3 weeks after the newborn screeening (not 6 like I thought) that we were at the audiologist. The report written by the audiologist says that Lily passed the ABR in her right ear. It says with more description what parts of the ABR she passed in her left ear but does not come out and clearly say that she fails in her left ear. The OAE says she passed in her right ear and that further testing is necessary for her left ear. There is some terminology and a few graphs that I am unable to interpret at this point. (I recently did an audiology quiz on a site for audiology students and I did pretty well. Not an expert by any means but I know a lot more about ears than I ever thought I would.) I am hoping that Dr. Antonelli will be able to explain to us what he thinks about those tests from 2 years ago.

It is very likely that we will never find out why Lily has hearing loss. There is only one conclusion to make about Lily's hearing when you compare those early tests to Lily's most recent ones: her hearing loss has been progressive. There are many possible causes of progressive hearing loss, such as Unknown Nonsyndromic Genetic, Syndromic Genetic (like Enlarged Vestibular Aqueduct Syndrome) , Meningitis, congenital Cytomegalovirus (CMV), Neural degeneration, Teratogen (Chemotherapy), Low birth weight/premature, and Perilymph Fistulas. I haven't explored all of these causes yet and am not sure if I ever will. Some are easy to rule out, like meningitis, Perilymph Fistulas, and chemotherapy. She has never been on any antibiotics (of which some are ototoxic) and has never had much more than a minor cold or stomach bug. If Lily is a cochlear implant candidate, then we may find some answers. Or not.

I talked on the phone today with the mother of a 15 year old girl here in Tallahassee who has bliateral implants. Her daughter received her first implant at age 2 and was, at the time, the youngest person in Florida to receive an implant. Children as young as 6 months are receiving implants in some parts of the country these days. Anyway, we are meeting with this family on Wednesday evening next week. It is my hope that we will have Deaf/Hard-of-hearing role models for Lily as she grows up. Maybe this girl will turn out to be one of them.

Oh, and we are still waiting for Lily's hearing aid but I have recently had a lot of help from our service coordinator/Program Director of Early Steps. She tells me that I am keeping her on her toes. She has been talking with Lily's audiologist and with someone from the State of FL and it looks like we will likely be able to get even more financial help with Lily's aid. We have been told to hold off until after our appointment with Dr. Antonelli because they think that he will want to aid both ears initially. I am not sure why there has been such a struggle in getting this aid. Surely there are other parents of children with hearing loss that have been through this process. 1 in 600 children in Florida each year are born with hearing loss. There were 3900 babies born in Tallahassee last year. That means roughly 6 kids per year, which means about 18 kids 3 and under that are served by the Early Steps/SHINE program. I just don't understand why it seems like they don't know what to do with us. Maybe I ask too many questions....

-Kriste