August 4th 2003- 2 days after Sarah's first birthday: OR day!! Boy are we nervous!! We are scheduled to arrive in pre-op at 1100 with an OR time of 1:30. Sarah isn’t allowed any food/liquids after 0730 so I wake her up early for her bottle and then off to the park we go where she tires out and falls asleep on the ride over to the hospital. Poor little baby!!!
She has no clue what is going on but she sure does like the yellow scrub outfit that is waiting for her. And the p.o. Versed…yummy she said!!! We are able to walk her into the OR suite and lay her down on the table. She is almost asleep from the p.o. sedative and the anesthesiologist begins to sing her a song about 4 little ducks as she places a mask over Sarah's face. Rick gives her a kiss on the forehead and I follow suite and then we leave...neither one of us can look back at her...so small on that table....so vulnerable.
We wait...silently. Dr. Kelsall has said the insertion itself will take about 2 hours and then an extra 30 minutes or so to check the electrodes. What an eternity!!!
One hour after start time we receive a call from the OR stating that the implant is in and that they are ready to test it. This is where I start pacing and chewing my nails. Will it work??? Will she have the chance to hear?? Forty minutes later Dr. Kelsall emerges and walks up to us smiling....he says that the NRT showed the nerve was responding with only a small amount of current. We waited 12 months for this day!!! Words cannot even begin to describe what I am feeling....our little Sarah is being given a chance!!!
August 25th, 2003: Activation Day We count the minutes!!! 9:45...Monday...Allison Biever's office. My husband and I and Sarah’s ST Nanette Thompson are all ready to hear Sarah react to her first sound. The video camera is ready to go. Sarah is busy playing with some legos and doesn’t mind the harness being put on her and the wires connected and the magnet slipped into place. Shortly after, Allison whispers "go"...and I utter my first words "Hi Sarah". She pauses instantly and stares at her legos and then my husband’s deep voice echoes my "hi Sarah". And then the floodworks!!! She bursts into tears and flies into my arms looking wildly around not knowing what is happening. I begin to cry and Rick begins to cry and we all laugh with joy. The second happiest moment of my life. "You heard!! You heard"!!!
Learning to hear-- It takes Sarah about 2 weeks to get used to sound. She cries for almost 20 minutes each morning when I "hook her up". I hold her in my arms...make sure the t.v. is off and there is a quiet environment…and then place the magnet on the right side of her head. I don’t speak to her for a few minutes after hookup as she is very upset. When she begins to calm down I whisper to her softly telling her it is ok. After about 20 minutes she gets down off at lap and goes about her daily routine. She seems to enjoy sound...thrives on it.
Three weeks post activation she is answering to her name almost 100% of the time. Her first sound is "aahh". She opens her mouth really loud and belts out "aahh" and smiles. She begins mimicking sounds very early.."aahh", "moooo", "maaa". If you call her from another room (same floor) she will come and look for you immediately. When the phone rings she puts her finger to her ear to lets us know that she hears it and will then walk to the phone holder. Sophie (our rat terrier) makes her laugh so hard..all that barking!!!
By 10 weeks of hearing-- If you ask her to show you her shoes or her books she will go into her room and retrieve a shoe or a book. She is amazing!!! Her progress is fascinating!! Each day is something new. I have bought her this popup book about colors/animals. Each page has an animal which fits the specific color. For 2 weeks straight she brings me this book and I read it to her… literally 10-15 times/day. She never says anything…just listens. Then one day as I am turning to the page with the orange tiger and am about to say "tiger" and do my imitation of a growl she points to the tiger and does her own imitation. I laugh and laugh.
Her audiogram after 3 weeks shows that she is hearing 10-15 dbl across the board!!! Nanette, Sarah's ST, is wonderful.... Sarah adores her and they have such a good time during therapy. She looks forward to her "visits" at Nanette’s office. In addition, Nanette visits our house once/month and works with Sarah in her own environment. And everything that they do together I repeat with Sarah on our days off. Always, always talking…that is the key....never stop.
We choose to leave the processor on all day even during her naps...only taking it off at night. Naps don’t work too well the first few weeks as I am sure it is rather noisy for her. But she eventually gets used to it. At night she sleeps 12-13 hours/straight. Hearing makes her tired!!!
5 months post implantation-- Receptively Sarah seems to have caught up to her hearing peers. Of course I am constantly talking to her...everything we do whether it is walking up the stairs or putting on our socks...I am talking...explaining to her the actions and the words. She has about 5 words in her vocabulary... "dada".."hi".."no"...Ma" ( mine) "da" (that) and is still signing a few baby signs. My husband and I have chosen to discontinue signing with her. We don't want her to use the signs as a crutch. We want to immerse her in the spoken language. And keep in mind that is was only 12 months old...so her knowledge of sign language is only about 15 signs or so. (In hindsight I am not so sure this was the right thing to do but at the time we thought we were doing what was best for Sarah.)
August 2004: 12 months post implantation We have now temporarily moved to Houston where we will be for 3 years. Sarah is receiving therapy thorugh ECI( home ST bi monthly) as well as at Texas Children's Hospital (TCH) bimonthly. They have a wonderful cochlear implant division there. Diane Baker is her new ST. Coincidentally, at one time she was Nanette's teacher...small world!! Sarah now has a vocabulary of about 25 words. She is speaking 3-4 word sentences though most is only understandable by me----toddler language. We are already working on our 's's and "p's". Receptively Sarah is testing at a 2 1/2 yr old level and expressively is at 1 year and 7 months... just a bit behind.
October: Sarah's audiologist is Dr. Ross Tannini and the implant co-ordinator is Jody Haymond. During the first few months there we begin chatting about bilateral implants. Currently, their clinic is following about 4 children who have been sequentially implanted. And their progress thus far is good. We are interested. If not now...then when? The longer we wait the longer her left auditory nerve has time to atrophy. Boy...another hard decision. I mean...it's like that old saying "you have your cake and now you want to eat it". We have made so many promises to God to give our daughter the gift of hearing and now we are asking for more??? We feel selfish one some level.
In the end...we go for it. Again, not much to lose. She has had no hearing moments from her left side. Bilaterals are showing promise with localization, background noise, and head shadow effect. We want our daughter to have the least possible struggle in life. Her parents have two ears...most people have two ears!!