Last minute trip to Gainesville today

Lily and I drove to Gainesville today to meet with the cochlear implant evaluation team. We were scheduled to meet with them on December 20th, which seemed like an eternity to wait, so when the call came yesterday asking if we were available to meet this morning at 9:00am, I jumped at the chance. It turns out that we met with only one person, Dr. Lori White, and she was a very kind and knowledgable person. She was great with Lily and it felt like she really listened to what I had to say in regards to why I want an implant for Lily. She had some audiology students do a bit of soundbooth testing on Lily and it was obviously inaccurate. Thankfully, she recognized that and will wait to get further testing results from next Wednesday's ASSR. She asked that I get Lily's audiologist at FSU to do another round of soundbooth testing without her hearing aids in her ears so that we have several ways to "prove" Lily's levels of loss. Lily has become very accustomed to soundbooth testing and was faking everyone out by placing puzzle pieces in a puzzle after sounds were made in her headphones. I know her well enough to know that it was not a fair test and that she was just placing the peices down after pausing a few seconds. She would even pause and place a piece down when no sound was made.

We have just 2 more appointments to go to and we will know if Lily is a candidate for an implant or not. We see Dr. Antonelli on November 8th for a follow-up appointment and we may just find out that day what their answer is. Dr. White admitted that Lily is not a clear cut case, as she has a decent amount of residual hearing in her left ear at this point. But she agreed with me that hearing one only one side is a huge barrier to learning (read this man's account of life with one working ear!) and that two ears are better than one. They will also take into consideration that Lily's inner ear anatomy predisposes her to further hearing loss. And weirdly enough, the fact that Lily's cochlea is malformed could work in her favor eventually. She said they are a very conservative clinic and do very few bilateral implants because in a deaf patient with normal inner ears, they like to keep one ear available for future technological developments. When a cochlear implant is inserted, it destroys the cochlea and there would be no going back to it's former state. In Lily's case, her cochleas are already "damaged" so that would make her a more likely bilateral candidate if she should lose the rest of her hearing in her left ear.

Effects of Hearing Loss on Development

American Speech-Language-Hearing Association (2005)

It is well recognized that hearing is critical to speech and language development, communication, and learning. Children with listening difficulties due to hearing loss or auditory processing problems continue to be an underidentified and underserved population.

The earlier hearing loss occurs in a child's life, the more serious the effects on the child's development. Similarly, the earlier the problem is identified and intervention begun, the less serious the ultimate impact.

There are four major ways in which hearing loss affects children:

1. It causes delay in the development of receptive and expressive communication skills (speech and language).
2. The language deficit causes learning problems that result in reduced academic achievement.
3. Communication difficulties often lead to social isolation and poor self-concept.
4. It may have an impact on vocational choices.

Specific effects:

Vocabulary

* Vocabulary develops more slowly in children who have hearing loss.
* Children with hearing loss learn concrete words like cat, jump, five, and red more easily than abstract words like before, after, equal to, and jealous. They also have difficulty with function words like the, an, are, and a.
* The gap between the vocabulary of children with normal hearing and those with hearing loss widens with age. Children with hearing loss do not catch up without intervention.
* Children with hearing loss have difficulty understanding words with multiple meanings. For example, the word bank can mean the edge of a stream or a place where we put money.

Sentence structure

* Children with hearing loss comprehend and produce shorter and simpler sentences than children with normal hearing.
* Children with hearing loss often have difficulty understanding and writing complex sentences, such as those with relative clauses ("The teacher whom I have for math was sick today.") or passive voice ("The ball was thrown by Mary.")
* Children with hearing loss often cannot hear word endings such as -s or -ed. This leads to misunderstandings and misuse of verb tense, pluralization, nonagreement of subject and verb, and possessives.

Speaking

* Children with hearing loss often cannot hear quiet speech sounds such as "s," "sh," "f," "t," and "k" and therefore do not include them in their speech. Thus, speech may be difficult to understand.
* Children with hearing loss may not hear their own voices when they speak. They may speak too loudly or not loud enough. They may have a speaking pitch that is too high. They may sound like they are mumbling because of poor stress, poor inflection, or poor rate of speaking.

Academic achievement

* Children with hearing loss have difficulty with all areas of academic achievement, especially reading and mathematical concepts.
* Children with mild to moderate hearing losses, on average, achieve one to four grade levels lower than their peers with normal hearing, unless appropriate management occurs.
* Children with severe to profound hearing loss usually achieve skills no higher than the third- or fourth-grade level, unless appropriate educational intervention occurs early.
* The gap in academic achievement between children with normal hearing and those with hearing loss usually widens as they progress through school.
* The level of achievement is related to parental involvement and the quantity, quality, and timing of the support services children receive.

Social functioning

* Children with severe to profound hearing losses often report feeling isolated, without friends, and unhappy in school, particularly when their socialization with other children with hearing loss is limited.
* These social problems appear to be more frequent in children with a mild or moderate hearing losses than in those with a severe to profound loss.

What you can do

Recent research indicates that children identified with a hearing loss who begin services early may be able to develop language (spoken and/or signed) on a par with their hearing peers. If a hearing loss is detected in your child, early family-centered intervention is recommended to promote language (speech and/or signed depending on family choices) and cognitive development. An audiologist, as part of an interdisciplinary team of professionals, will evaluate your child and suggest the most appropriate audiologic intervention program.


©2005 American Speech-Language-Hearing Association.

Getting back to the new "normal"...

Things were a bit off-kilter this week since Charlotte's injury occurred but we are slowly getting back to normal. I emailed Dr. Antonelli to ask what I needed to do to get the appointment for the ASSR scheduled. The next morning, the person I had been having a hard time getting a hold of to arrange Lily's appointment finally called. She talked to Chris (I was at FSU with Lily for her AV session) and gave him a date of November 1st for her ASSR. Chris did not ask her what time the procedure will be but I sure hope it has been scheduled for first thing in the morning. Lily will have to have no food/water for 6 hours before the procedure. While I am relieved that we finally have a date for the procedure, I have 2 reservations about this date- one is for superstitious reasons (a few coincedental family accidents happening on this day: sister badly burned as a toddler, brother broke arm falling from tree, I fell and knocked out my permanent front teeth at age nine) and the other because Charlotte is over-the-moon excited about Halloween this year and is so excited about going trick-or-treating. We can trick-or-treat while we are in Gainesville, I imagine. So we will forge ahead with the November 1 date...

We have a follow-up appointment with Dr. Antonelli on November 8th. I have lots of questions since learning about Lily's EVA. I plan to ask how to go about doing genetic testing. We need to find out if she has Pendred Syndrome or not. I have been doing more and more reading about EVA and all the possible issues that this involves. I also want Charlotte to be tested to find out if she is a carrier- I think it is important for her to know this. It is strange to think that one of my parents passed this recessive gene along to me and that is has silently lurked in my family through the years. We know very little about my grandfather's background since he was adopted so don't know if there is a history of deafness there.

One more month and we will have more answers....

Now things are even more interesting...

Charlotte broke her arm yesterday evening. She has a Supracondylar Fracture of the Humerus. I don't know what we will do with the month of October in regards to all of our appointments, but maybe it will be best for us to take the month off anyway. Charlotte is doing well, just hates the cast.