My husband and I discuss the choices of sign and decide upon SEE. (Months later we switch to ASL) Books are bought and we start memorizing the alphabet...little by little...a few letters a day. I go for daily walks with Sarah in the jog stroller and one can see me pushing the stroller…my fingers moving all the time…practicing my alphabet and a few baby signs. ECI is set up quickly...within a week of Sarah being diagnosed. We are assigned a sign language instructor/AV therapist whose name is Lynn. She is wonderful!!
She is a graduate of Gallaudet University in Washington D.C....one of only 2% hearing individuals who are accepted into the masters program. She has spent years working for ECI and knows all the types of sign language. She is comfortable with SEE and helps us as we struggle to learn this foreign language. She also works with Sarah via play therapy to see if there are any "hearing moments". There are none. I buy a video camera and videotape Sarah once/week so as to monitor her progression or lack thereof of babbling/speech production. (By 9 months of age she is using only tactile babbling)
December 16th-- Sarah is fitted for hearing aids...though the overall thought is that they will not benefit her. However, this is still considered a pre-requisite to a CI. So...off to Denver Children's Hospital we go. We choose not to return to University Hospital ENT. Why?? Simple…not long after Sarah is diagnosed I get a call from Jennifer asking why we haven’t made a follow-up appt. I ask her why “they” never mentioned a CI and she says that there was no need to at the time….that a CI would have been discussed if Sarah failed 6 month trial of HA’s. Again I say: Hope should never be on a need to know basis.
Today we met Dr. Deborah Hayes and Jennifer Ivinson. Dr. Hayes has a Ph.D, CCC-A and Jennifer has M.A., CCC-A. They will both be involved in Sarah’s care and will be conducting her bimonthly booth tests. Jennifer fits Sarah for a HA in her right ear.. Jennifer asks me what Sarah’s sign name is and I tell her that I haven’t thought about one yet. But really…I don’t want to give her one. I want her name to be spoken aloud. On some strange level I believe that by giving her a signed name I am resigning myself to the fact that she is deaf. I refuse to do this….
December 22nd The babysitter left Sarah’s new HA on the bed while giving her a bath. Sophie (our rat terrier) found it and chewed it into 18 pieces…I counted them!!! Have not noted any hearing moments.
Thoughts about a Cochlear ImplantSarah has been wearing her HA for almost 2 months now and it is obvious that there is no benefit. Rick and I have been talking about a CI. I have had the opportunity to meet a few children who have received a CI in the Denver area. WOW!!! To hear a child, who was born deaf, talk and carry on a conversation is just beyond words (no pun intended). But is a CI the right choice for our daughter??? We are being told that children with AN show varying degrees of success with their CI. How much will Sarah benefit?? Well…she has nothing now…no signs of hearing…no progression of babbling...nothing. There is nothing to lose... easily said .
January 7th I cry again today. Something so silly but it made me so sad. I was trying to teach Sarah some colors and I was pointing at the purple toy and trying to sign at the same time. But she wouldn’t look at me. Her attention span is focused on the toy. I hold the toy up near my face and sign the color. She looks. But then I think…”What if she thinks the toy is the sign for purple?”. This is so confusing. I feel like I am unable to teach her. I feel like I am failing her. Lynn is next to me and she comforts me and tells me that Sarah will understand…it will just take time.
Dr. Berlin has again helped me out. He referred me to a mother who lives in the Denver area…Orla. Her son Piers has had a CI for 5 years and he says she will be an excellent support system for us. I call her up. We chat and she helps ease my sadness. I ask if I can meet her son and she says of course.
February-- Sarah is now 6 months old and has remained profoundly deaf with no hearing moments. Why wait??? We are going to pursue a CI. But who will perform the surgery??? It’s not exactly a routine procedure. Denver Children’s Hospital only performed 4-5 cases this past year. I am sure the surgeons are wonderful but we want someone with more experience. Orla suggests that we call Dr. David Kelsall…founder of Rocky Mountain CI Center...located in our hometown of Denver.
Except for one huge dilemma...his center is "out of network". However, Orla tells me not to be discouraged for each year Dr. Kelsall donates both his time and money and implants children who otherwise cannot afford such a procedure. So, I wrote him a letter today and will drop it off at his office tomorrow.
To my great delight he calls me the next day and informs me that he has privileges at Denver Children's Hospital and if Sarah is deemed a candidate he will perform the surgery. Yeah!!