Friday, May 29, 2009

Happy One Month Hearing Ava!

One Month Post Activation

Ava continues to astound us. In addition to consistently turning to us calling her name, she is also able to localize and hear with a lot of background noise (and with six kids coming and going there is a ton of noise!). One example is her high chair is right beside the dishwasher. I had the dishwasher running and left the room and could spy on her without her seeing me. She was fiddling with her cheerios and I softly called her name with the dishwasher running right beside her and she sharply turned her head towards my voice. Without any visual cues she understands when I say "want up?". She also understands the words "banana" and "light" and "all gone". WOW. She sometimes understands "where's your toes?" but not quite consistently yet. When I sing the "happy and you know it" song, she claps her hands and stamps her feet (bangs her feet against the high chair as she's not walking yet) without me having to do the actions for her. AND she SAYS a word approximation for "HI" - she doesn't pronounce it like we would but she uses in the correct context and intonation almost like a two-syllable intonation-it is really hard to describe just what it sounds like but I plan to whip out the video camera tomorrow and try to capture all this stuff because I really don't think anyone is going to believe that she is saying hi (in her own way). If I close the door while she is on the other side of the door, then wait for a few seconds, then when I open the door she greets me with her version of "hi" - she does the same when she opens and closes a door - she does it almost every time. Or if someone just walks in the room that she is in she will look up and say hi. I'm not kidding!!!! She just seems so sharp and aware of all the sounds she is hearing I really believe she is soaking everything in. I am also positive that she has made the connection between having her processors on and being able to hear. Every morning when I put her processors on as soon as I turn the power on her face lights up like you wouldn't believe. I am so grateful for this technology - I am so freaking HAPPY. I never thought I would ever feel free - free from worry about her future, free from the pain from her deafness; that crushing hopeless frightened feeling we felt when learning of her diagnosis. But now, for today, I. really. feel. free.

Saturday, May 16, 2009

Documentary Film

Hello Friends!

Some time ago, when Ava was diagnosed, I set up a google alert on cochlear implants so that any news stories about cochlear implants would be emailed to me. This morning, I was alerted to a documentary being worked on a Chicago Family, the Stark Family, who consist of two deaf parents and two deaf children. The parents decided to implant their two children. The son was implanted at 17 months and their baby girl is being implanted this month. The mother is also going through the steps to be implanted herself as well. The documentary is not due until next year. Here is the link for the news story plus the website. The website contains a trailer-which is quite moving. I find this story to demonstrate the ultimate act of unselfishness that parents do out of pure unselfish love for their children; to give them every opportunity possible. I can imagine just how difficult a decision it must be for deaf parents, already immersed in the deaf culture, to implant their children. I am looking forward to seeing the documentary very much!

Wednesday, May 13, 2009

Post Activation Update-Two weeks post activation

Making Progress!

It's been two weeks since Ava's implants were activated. She is doing so well. She seems to be paying very close attention to all the new sounds she is hearing. She has such a good attention span. I'm learning through the AV therapy that consistency will be the key to Ava's success. Every morning we do exactly the same lessons with Ava. This is what we are doing at home. We start off by going through all her animal sounds - first, I hide the cow behind my back and make the "moo" sound. I point to my ear and ask Ava "do you hear that?" Ava starts looking for the cow as soon as I make that sound. While I continue moo-ing (hahah that sounds funny) I bring the cow into Ava's view. She gets SO EXCITED when I bring out the cow. Then we say "hi cow!" Ava plays with the cow until she gets bored with it. Then we say "bye-bye" to the cow and Ava puts it into a bucket. I continue with the horse (clop sound with your tongue), sheep, pig, cat, dog, chicken, fish (use the "sh" sound) and snake (use the "sssss" sound). She responds to all those sounds. We also do the same thing with the car (make raspberry with lips while doing brrrrr sound along with beep beep) and airplane ("ahhhhhh"). What Ava is now doing starting this week is vocalizing the car sound when she sees the car and the airplane sound when she sees the airplane. AND she can imitate both the short "ah" sound and long "ahhhhhhhhhhhh" sounds. At two weeks post activiation I'm told that this is nothing short of amazing. She clearly also understands "up" when I ask her "do you want up?" I'm still gesturing "up" with my hands so it may be she understands from the visual cues. Also when I say "give me the _____" whatever she is holding - I hold my hand out and she hands me whatever object she has. I will attempt later not to use the visual cues to see if she can receptively understand "up" and "give to momma". We also do the same songs over and over with her - if you're happy and you know it, row your boat, this little piggie, round the garden. We are constantly naming everything Ava looks at - names of family members, clothing items, food, body parts. I was advised that we should use the same name consistently - for example shoes - not boots, not sandals, not slippers, not sneakers, not runners but all are to be called shoes....for now. Another bonus...Ava's 4 and a half year old sister is a great teacher! Ava is crazy about Lauren and is constantly watching and listening to Lauren. If you can surround your baby with little persons I'm sure it would be a huge boost. We have to make learning to listen fun and what is more fun for a baby than another young child to watch and listen to!

Monday, May 4, 2009

Post Activation Update - Day 6

Our Superstar
It has been six days since activation. In short, Ava has been constantly amazing us with her new ears! She is both recognizing and localizing sound! She tolerated the different program levels on her processors so well that we were at the highest program setting (P4) in 4 days. Here are a few examples of what she is doing:
Sounds she recognizes:
-microwave beeping
-shaking of box of cheerios
-mommy and daddy's voice
-door knocking
-of the Ling Six Sounds - "ahhhh"
-we have been working on farm animal sounds using plastic fisher price farm animals - we were on the floor playing with the chicken and I used the "bock" bock" sound - Ava played with the chicken for a bit and then threw it off to the side and it rolled about 3 feet away - she became engaged in something else - at that point I started to say "bock bock" again and Ava turned around to look at the chicken she threw to the side - IS THAT A COINCIDENCE OR DID SHE RECOGNIZE THE CHICKEN SOUND? I guess time will tell.

-she REALLY LOVES songs - If you're Happy and You know it, This Little Piggie went to Market, Row Row Row your Boat.

Examples of localization:
-turns to our voice while watching baby einstein dvd or while engaged in play
-turns to sound of rattle in the appropriate direction while engaged in play
-we hide a plastic farm animal under a blanket - then we make the animal sound and she will search for the animal
-turning her head when we call her name - although this is inconsistent and I don't believe at this point she recognizes her name yet but she does hear our voice and turns toward it.
We learned today it takes approximately 10 months of hearing before Ava will form words - that is just average so it could be sooner or later than that time before Ava will start to form words.

Today, Ava had her second MAPing. We received 4 more programs which have increased volume and sensitivity levels. She tolerated the new program very well. I found it a bit troubling that she doesn't react much to the new sound levels but I was reassured that she is doing very well and her auditory nerve is functioning beautifully. (Ava is part of a study of bilateral implantation, therefore, in addition to her regular MAPing sessions, she also spends some time in the hospital lab for additional testing).

Oh, and did I mention that this is SO EXCITING! I look forward to waking up each morning with such anticipation of Ava's progress. Some days, there will be very little change from one day to the next. Other days there will be huge leaps of real progress. Some of the other CI mom's advised me to remember that this journey is not a sprint, but a marathon. While this may be quite true, I came across this quote by Michael Johnson ..."Life is often compared to a marathon, but I think it is more like being a sprinter; long stretches of hard work punctuated by brief moments in which we are given the opportunity to perform at our best".