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!

http://abclocal.go.com/wls/story?section=news/disability_issues&id=6815556

www.louderthanwordsdoc.com

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!

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".

AVA CAN HEAR!!!

Activation

Ava's activation was a success! It was the coolest thing ever - like witnessing a live miracle. BUT it was nothing like I expected. There was no drama or a-ha moment for Ava. She was cool as a cucumber. There were no tears nor discomfort - Ava took it as it came. First, the audiologist did a "mapping" of the cochlear implants ("CI's"). I will briefly explain what "mapping" is later in this post. Then one ear was activated first, then other the ear and then both at the same time. In the video below, Ava is hearing through both implants. You will note the change in her eyes/expression when I first start talking to her - she pauses briefly to listen to the sound of my voice.


Mapping

Programming the cochlear implant - called "mapping", refers to the setting of the electrical stimulation limits necessary for Ava to perceive soft and comfortably loud sounds. During mapping, the threshold and comfort levels of each individual electrode (which is in the internal implant) are adjusted in order for Ava to hear a wide range of sounds. There are 22 electrodes. Threshold adjustments are what allows for access to environmental and soft speech sounds. Comfort level adjustment refer to the amount of electrical current needed to hear a comfortably loud beeping signal. These measurements are downloaded into Ava's processors. The initial settings on her CI's are very, very low right now. So, while she will hear environmental sounds like the phone ringing or door knocking and our speech, the settings are too low for her to discriminate the different speech sounds. The audiologist instructed us to increase the sensitivity on her CI's every other day so that there is a gradual introduction to sound, so as not to bombard with so much sound that it would be uncomfortable. Next week we return to the audiologist for another mapping session. Then, her mapping sessions will be on a monthly basis. Mapping sessions are required as over time the settings can become weak due to tissue growth surrounding the implant, thus needing more power or electrical stimulation. Also, when maps are new, they sound really loud to Ava. As she adapts to the volume levels, the volume will seem weaker to her over time and the signal will no longer be strong enough. Therefore her processors will be always be mapped time after time. When a map is performed efficiently, Ava's hearing should be in normal to near normal range!!!

So now that she can hear, what do we do?

Ava will continue with her weekly auditory verbal therapy. There is a hierarchy of learning oral language. First, Ava's receptive language will need to be developed before she can start to talk. She is at square one, like a newborn baby. She now has to learn to listen to all the different sounds in her world. She needs to detect sounds (called Auditory Awareness) - such as the door, phone, a dog barking. Then she has to learn to discriminate sounds such as a cat meowing vs a dog barking or recognize her name being called. There are several additional steps to learning receptive language but I will get into that as we follow her progress. We will be spending our first several weeks pointing out all the sounds for Ava. For example, when the phone rings, we will excitedly point to our ear, look at Ava and say "do you hear that?" and then point to the phone and say "phone". We will praise her everytime she vocalizes. She will learn that language is power.

Ava is already amazing us with her very obvious awareness of sound around her. She is constantly turning her head, although not consistently yet, to the sound of my voice, at close range. She is responding to a knocking sound and clapping sound. I put a baby Einstein video on for her and in the past, she would look at the video then stop to play with something or divert her attention to something else. Today, however, she stared intently at the video and did not move a muscle throughout the whole video! I positioned the speakers so that they were facing towards her. It was incredible to watch!

Stay tuned!!!

Another Hospital stay but Ava has her new Bionic Ears!

Hello friends!

I am late in writing this as we just got home from the hospital yesterday. Last week, I noticed a lump on the side of Ava's neck. I was told to bring her to the hospital at the same time she picks up her equipment as the clinic is just down the hall from the audiologist's office. Turns out Ava developed an infection in one of her lymph nodes which caused it to fill with pus and swell to about half the size of a golf ball. We were absolutely terrified and were so relieved when we learned it was only an infection. We didn't like the fact that she had to be put under general anesthetic again but it was only for about 15 minutes tops so the surgeon could drain the pus. It really put a damper on the excitement about getting her equipment, etc. but now that we are home with some powerful antibiotics we can finally relax and concentrate on educating ourselves on her new "ears". We picked up Ava's new "ears" Tuesday morning just before being admitted to the hospital. We received a detailed tutorial on the equipment from the audiologist. She gave us two huge boxes of stuff - extra cables, batteries both disposable and rechargeable, recharger, accessories for keeping the equipment on her ears better, drying/sanitizing kits, etc. I read through the manual while Ava was in the hospital so I am all pumped and prepared for the big ACTIVATION DAY!!! Below you will see the coil, which is the round thing on her head. The coil contains a magnet to allow it to stay connected to the implant beneath the scalp. The piece on her ear is called the processor, which contains little microphones to pick up sound and convert it to electrical impulses. The electrical impulses are transmitted through the coil, which then transmits it to the implant under the scalp, which in turn stimulates the auditory nerve. The long wire down her neck is connected to the controller, which is clipped to her clothing. The controller holds the batteries and contains the customized settings (such as volume, sensitivity levels depending on whether she is in a noisy environment, listening to music, in a quiet environment, talking on the telephone or just for everyday listening). Once Ava is about 2 years old and her ears are big enough, the controller will be connected directly to the earpiece processor and worn as one piece behind the ear.

Now Ava is to wear this equipment, unactivated, so that she gets used to wearing it before they turn it on. Because of the surgery she had Tuesday night, we delayed putting the equipment on until today. So, I'm thinking, I've seen how it all works, read the manual, piece of cake; I mean I have hearing aids myself so how hard can it be??? BOY WAS I WRONG! It was not easy getting the equipment on her head at all. I sat her on my lap and doesn't she arch her back, kick her legs, cover her ears with her hands, grabbing my hands, her ears, her hair, ANYTHING to try to stop me from putting the damn things on her ears. I mean who can blame her after all the poking and prodding she received at the hospital being admitted twice since her implant surgery. After I finally got the processor and coil on the first ear, I start putting the equipment on the other ear and well doesn't everything fall off the first ear while I'm trying to put on the other ear! And then the coils fall off while she is squirming. And then the processors fall off again. Fall off Fall off Fall off! I look at my husband and say just how is she going to hear if everything falls off so easily? Out comes the super sticky toupee tape which is quite cumbersome because it is double sided tape and trying to peel the backing off of it is next to impossible. So I tape the processors to her ears and that seemed to do the trick. I adjusted the strength of the magnets so that the coils wouldn't fall off so easily. You have to be careful with the magnets that they aren't adjusted too tight as it will cause sores on her scalp. After lots of tears (both mine and Ava's lol) we FINALLY get everything on and to stay put. On the advice of some other moms I bought a couple Hanna Anderssen pilot caps and put one on so that she can't try and pull her equipment off. The cap looks great and holds everything on nicely. The audiologist told me that once Ava makes the connection that the equipment is what is giving her access to sound, she will readily keep it all on.

We have to remember, that while the equipment looks daunting and weird, it will allow my DEAF CHILD TO HEAR. Young children weren't implanted until the 1990's. Prior to that time, being profoundly deaf meant communication by sign language, going to a deaf school and never learning to speak. NOW my deaf child will hear and speak. She will be mainstreamed at a regular school and will speak just as well, if not better, than her hearing peers. This is nothing short of a miracle.

"A man, as a general rule, owes very little to what he is born with - a man is what he makes of himself"

Alexander Graham Bell

We have an activation date!

Ava had her one week post-op check-up yesterday. Her steri strips were removed and she is healing nicely. I can't believe how small the incision is. Both incisions look identical. In the picture you can see a small dark scab which is where her drainage tube was.

She has no discomfort from the incisions whatsoever. I was so glad to finally be able to wash her hair.

At this appointment I received Ava's activation date, which is Tuesday, April 28th!! I am so excited!

Ava's Surgery!

I'm so pleased to report that Ava's surgery was successful! Wow, where to start? We arrived at the hospital at 6am for pre-anaesthetic assessment. Ava was changed into little scrubs, we said our good-byes and she was whisked off to the OR. The surgery lasted about 5 hours and then another 2 hours for recovery. The surgeon was able to make full insertion of the electrodes and they all tested perfectly. Soon after Ava was moved to her room she started acting like her old self smiling and playing with her toys. She had a really good appetite too. The pressure bandage was soaking up a lot of drainage and blood from the incisions and leaked down her neck but I was told it really looked worse than it was and it was a normal amount of blood. She was put on an antibiotic and given tylenol with coedine. It was a long night of on and off sleeping. She developed a fever which, again, I was told was normal and was quickly controlled with tylenol. This morning, I awoke to find that she had removed her pressure bandage herself and was playing with it in her crib! So much for the dramatic unwrapping of the bandages. She didn't have much of an appetite this morning and has been mostly sleeping since we got home.

The next step is returning to the hospital in one week to have the steri-strips removed. Then, in another two weeks we will get her external equipment along with instructions on how it all works, how to troubleshoot, etc. It is highly sophisticated technology. Then, approximately 3-4 weeks post-op, they will activate her implants and she will hear for the very first time. I do not have an activation date as of yet but hopefully find out that date next week!

I have posted a slide-show of the surgery day - which you can view here. Enjoy!