Appointments, appointments, and more appointments

The real whirlwind of appointments and phone calls began in early June.

We were assigned a "service coordinator" through Children's Home Society. Probably not important enough to mention but the the service coordinator was actually assigned by the SHINE program, which is an off-shoot of the Early Steps program, which is an off-shoot of the Children's Home Society. Our initial service coordinator promised many wonderful and helpful things, but in the end, was not really able to deliver all she promised- most likely due to having too many cases and not enough time (and I imagine she was not paid enough either).

Actually, she has already left her position and a person equally as overwhelmed has taken over her cases as of mid-July. The service coordinator is supposed to be someone who helps with coordinating appointments for a family, attending appointments if need be, and just generally a helpful guide through the early days of discovering that your child has a disability.

Here is a quick run down of all of our appointments thus far:

April 13- Appointment with FSU's First Words Project, where we discovered for sure that Lily was language delayed. Also was noted that the "quality of Lily's utterances" was very nasal and unusual.

May 25- Lily has OAE hearing test. Audiologist recommends more testing at a later date. I leave not knowing the name of the test, just that the results were far from normal.

June 8- Lily and Charlotte and Kriste see Dr. Roberts, an ENT, at Tallahassee Ear Nose and Throat. The only ENT center in town. It was a nightmarish appointment with Lily and Charlotte battling over lollipops during the entire appointment. I left knowing that Lily likely had a "moderate" hearing loss based on the OAE- that was devastating enough news. I also left thinking that I didn't want to see that ENT again as he had no rapport with children - He yelled down the hallway - "I am going to need a holder!" He had to hold Lily down physically just to check in her ears... a task done without difficulty by our family doctor, and audiologists.

June 15- Lily has a soundbooth hearing test, which gives us a more complete picture of Lily's loss. This is the first time I see Lily's audiogram and hear the words "profoundly deaf in one ear and moderate-severely deaf in the other". Really devastating news.

June 20- Lily has an evaluation at the Children's Home Society to qualify her for services. It is a formality though as she already qualifies due to her level of hearing loss. The first sentence of the evaluation was "This is a large child" Her weight 38.6 pounds, length 38 inches...97th percentile."

June 22- Lily has a 2 year check up with our family practitioner. We tell him the news. We hope that he will suggest to other parents to be more aggressive if they have a concern about their child's hearing (there is more to this story but will share in a later post)

June 26- Lily's 2nd birthday and appointment with a new ENT. Since the first ENT appointment went so badly, I thought it might be wise to meet with another one in the practice. This one had better rapport with Lily but he was not very helpful. He didn't tell us anything we didn't already know and he didnt make any suggestion that Lily was a cochlear implant candidate. He told us that further testing , MRIs, genetic testing really wasnt necessary and that we don't really want to know why Lily is deaf. If we find an answer, it won't be something we want to hear he said. He also did not suggest a 2nd hearing aide to stimulate the right ear and he said "see you in 4 months".

June 29- More hearing testing and confirmation of what we already knew- Lily is deaf.
We are given a loaner aid today with no instruction on how to use the aid or take care of it. A mold of Lily's left ear is also taken. The audiologist informs me that there is no need to aid Lily's right ear, as it is non-functional. We hear later that this is not true, that the auditory nerve needs to be stimulated even if only loud, environmental sounds are heard.

July 6- A representative from the SHINE program came our house to explain all the options in deaf education. Options ranging from ASL to Total Communication to Auditory-Verbal Therapy are presented. We ultimately choose AVT, which we hope will give Lily the most normal life possible.

July 10- Lily has an appointment to receive her new ear mold. We chose pink and white swirls. The audiologist gives us a different loaner aid until Lily's real aid is ordered and received. She calibrates this loaner aid in Lily's ear (which was loud and scary)and Lily is terrified. From then on, getting the aid into her ear is nearly impossible.

July 14- The SHINE representative returns and Kriste shares with her what communication method we have chosen. Auditory verbal. We hope that this is the right choice for Lily. Some days I see it as the only choice. There is an ongoing debate over Sign Language vs. AV - and whether a person can fit in to the deaf community if they get implant or use AV...or if you are deaf and don't know sign language you cant communicate with other deaf people. Right now with her limited hearing she can say many words so we feel like this is the way to go.

July 21- We meet Janet Kahn of FSU for the first time finally. Childrens Home Society covers cost until age 3 (we hope!). We spend almost 3 hours at FSU as Lily is tested to determine her language capabilities. Lily keeps her hearing aid in the whole time and does pretty well. The deficiences are evident in following multiple step directions, pronouns, prepositions.

July 31- Lily's first AVT session. It will be mid-September before we have another session because of FSU schedule and it is now up to us to keep the momentum going.

-Kriste