Winter Fun?.....and Ava's Progress

Winter is here in Toronto, much to Ava's chagrin. She is not thrilled with the snow, refuses to walk on the stuff and throws off her mittens in protest with a resounding NO! She also refuses to have anything to do with Santa; having brutally endured not one but two Santa photos. The first of which she would only participate if I was in the picture holding her and the second time she screamed her head off even as I held her. Funny thing is she would really admire Santa from a distance...pointing to him, smiling, saying "ta ta" and even watch older sister Lauren practically tackle the man with excitement.

Ava just completed both hearing testing as well as testing of auditory comprehension and expressive communication. On the hearing testing, she is hearing around the 20 to 25 decibel range with her CI's! This range covers pretty much all of the speech sounds. With respect to the auditory comprehension, she scored in the 97th percentile and equivalent to a one year 9 month old HEARING child. With respect to expressive communication, she scored again in the 97th percentile and equivalent to a one year eleven month old HEARING child. Ava has only heard sound for seven short months and is one year 5 months old. She has SURPASSED what the average hearing child of her age would be expected to score on these tests! This is proof that early intervention, an excellent implant team (thanks to Sick Kids hospital and Dr.Papsin), an experienced audi with superb mapping skills (thank you Susan Drukker) and an amazing auditory-verbal therapist (thank you Mila DeMelo) whom we follow her activities at home faithfully and God Himself = an incredible little girl who is excelling beyond belief.

Merry Christmas and Happy Holidays!

FINALLY! Ava has her new processors!

Ava picked up her new Nucleus 5 processors yesterday. They are very sleek and much thinner than the Freedoms. The reason Ava was able to get the upgrade was because she was implanted with the Nucleus 5 back in March as part of the study. Now that the N5 processors have been released, she was able to upgrade so that her internal implant now matches the external processor. Here are a few pictures to show the comparison of Freedom vs. Nucleus 5 processors:

In addition to being much smaller/thinner, the new processor has:

-improved water resistancy - IP44 and IP57 ratings

-auto-telecoil

-remote control - the screen on the Freedom processor which was used for programming and troubleshooting, etc has been replaced by a remote control which has a much larger screen and is also in colour - this is a fantastic feature as it also features a trouble shooting program and takes you through a step by step list of how to troubleshoot-the remote is also used to adjust volume and sensitivity levels- the remote is also used to test the processors to make sure they are working properly

-the coil headpiece is now detachable from its cable

-two batteries instead of three

However, the processor is only using disposable batteries for the time being as the rechargeable battery has not received FDA approval - it is unknown as to when the rechargeable battery will be approved - we have been using the rechargeables with the Freedoms and have never used the disposables - it was so much more convenient. The disposables apparently have a life of 38 hours. So for Ava, the batteries will last just over three days as she wears her processors about 10 hours/day.

For some people, this upgrade may cost thousands of dollars. Do I think it is worth it? Depends on what the cosmetic difference is worth to you. All in all, the technology of the N5 processor as a hearing device to my knowledge is probably not much different then that of the Freedom. If it were us, we probably wouldn't pay to upgrade at this time. Ava was doing remarkably well with her Freedoms, having met or exceeded her targets for 6 months post activation.

HAPPY TRICK OR TREATING!!!!

A Sunny Farm Day, Language Explosion and Walking!

A Sunny Farm Day

Today we took the girls to Downy's Farm during its annual pumpkin festival. I took my older children there every year when they were small. The farm is fantastic. They have a giant corn maze, huge pumpkin patch, petting zoo, farm animals, hay rides, fresh pies, haunted house, make your own scarecrows, to name a few things. Can you imagine Ava's surprise at meeting the farm animals up close for the first time! She was awestruck and speechless. It was hilarious. She met two cows, sheep, goats and geese.

Explosion

Ava's implants have been activated for nearly 6 months. Not only has Ava started walking this month, but there has been an explosion in her expressive language and receptive language. Month by month she has added a word or two to her vocabulary. This month, not only has she amassed another 8-10 words, she also can speak those new words much more clearly. She has also put two words together for the first time "don't touch" (but does not say this clearly) and she wags her arm and shakes her head no when she says it. Today she said "sock".....(pronounced as "saw") and she said this with the "s" sound. I was so shocked! I understood that many hearing children don't use the "s" until they are nearly 3 years old. I could almost swear I heard the "ck" sound at the end one time but it was pretty darn close. Her receptive language has really taken off too......she seems to understand everything....."go get the ball" , "do you want a book?", "give the cow to mommy", "kiss the baby", "gimmee five", "where's the ______ . Her favourite book is "Brown Bear" by Bill Martin Jr. She wants us to read this book over and over and over! At the end of that book, there is a compilation of all the animals in the book on one page. Tonight, when I asked her "where's the white dog", she pointed to it as well as correctly pointing to every single animal on that page. There is one other book she really enjoys and that is "Where's Spot" by Eric Hill. She doesn't have the patience for any other books yet except a couple counting books (one cat, two babies, three dogs, etc).

At the same time, we have noticed a change in her personality. Let's just say she is well on her way to entering the "terrible twos". She is starting to throw little tantrums if I have to take something away from her or if she doesn't get what she wants when she wants. And she is into EVERYTHING. She loves emptying and dumping things....her clothes out of her drawers, the pots and pans, the pantry. She is like that cartoon character-the tasmanian devil - causing a whirling mess everywhere she goes. So I allow her one cupboard in the kitchen that she is allowed to rummage in. She enjoys singing and doing the actions to the "head and shoulders, knees and toes" song.

In comparison to my 4 older hearing children, I can see how Ava is making huge strides in all aspects of her development. Being a deaf child with cochlear implants has not in any shape or form limited Ava's development or potential. She really is just a regular kid but special in her own lovable ways. Who could ask for anything more than that?

Unexpected Surprise!

AVA SAYS "APPLE"!!!!!!!!

Please let me tell you the story of our unexpected surprise at about 5:30pm tonight. I was cooking dinner. As usual, Ava was impatient because by 5pm she is a starving green eyed monster who MUST EAT at 5pm (like her daddy lol!) Well, as usual, dinner is not ready at 5pm, so poor little Ava has to WAIT and wait and wait......So, she starts to whine a little. The pasta is boiling away. I decide to pick up my hungry child and bounce her on my hip while I stir the pasta. I move over to the kitchen window and stare outside, watching the leaves fall from the trees and thinking how autumn has arrived and we should close the pool soon. And out of nowhere, without warning, Ava leans over from my hip, points to the apple on the window sill and says "a-pple" just. like.that. "a-pple". As clear as it could ever be. As clear as if I had said it. Two concise clear syllables; pronouncing each vowel and consonant "a-pple" just. like. that. I pause and just stare.....totally disbeliving....what.I.just.heard. I scream for my husband...."DID YOU HEAR THAT? SHE SAID APPLE!!!!!" Ava has never, ever said apple. Ava has never even had a word approximation for apple. Nada, never,zilch. HOLY CRAP i just about fainted. It was the most unexpected yet sweet surprise I have ever had IN MY ENTIRE LIFE! It was beautiful and insane at the same time. I said to my husband, "do you think she will say it again?" I grab the apple out of Ava's hands (already half devoured by her!). My husband positions the video button on his i-Phone......and here is the precious video....


So, I dedicate this video for all my friends who have precious children who are blessed to have (or are about to receive) cochlear implants. Ava is 14 months old and has been hearing for just under five months. And today, without warning or expectation, she said apple. Just.Like.That. I am so HAPPY! She is the "ap-ple" of my eye.

Ava's Song

Ever since I started writing this blog, it really has been all about...well, Ava of course. But just as important are the members of Ava's family who all play a fundamental role in her journey. Ava is very fortunate to have Markus as her daddy (and I as his wife). Markus is a children's singer/songwriter. He has appeared on Treehouse Tv and wrote and performed the live stage show for Bob the Builder , which has toured all across Canada. Markus also wrote a live stage show for Toopy and Binoo, which is currently touring across Canada. Ava's daddy wrote her a song, which was performed for the first time at Union Hearing Aid Centre's annual "Hear Here" fundraiser. I am proud to post the "unplugged" version of the song, along with the lyrics. To hear the song, click on "Ava's Song" on the sidebar to hear the song OR scroll down to the very bottom of the page and there's a music player with a video montage of the song. The song is currently being mastered at the studio and the mastered version will be posted in time. So grab some tissues, hold your beautiful child and enjoy......

Ava's Song - Words and Music by Markus 2009 all rights reserved

I listen to the wind in the trees
I understand when you talk to me
All the sounds that are part of me
I hear the love of my family

My life is filled with sounds to enjoy
I sing with Daddy when we play with toys
I laugh with Mommy and the girls and boys
All I hear brings me love and joy

It's the words I hear when you talk to me
It's the songs I sing when you sing with me
All the world is opening up for me
When I listen and I hear

I listen to the wind in the trees
I understand when you talk to me
All the sounds that are part of me
I hear the love of my family

Where has the summer gone?

I can't believe it's September! School starts in a few days as well as hockey, gymnastics, dance lessons, homework, school projects......at least if the weather holds up we should still get in another month of swimming.

Ava resumed her AVT about 3 or 4 weeks ago. Boy does it feel good to have that therapy back. Ava has been hearing for 4 months now and she is 14 months old. She is now at the stage where she is using jargon and sounds like she has her own language. It can be quite amusing, especially when she is angry. If her older sister takes a toy away from her, she will use this really angry jargon at her sister. I can only imagine what the real interpretation is.

Ava's receptive language has really exploded. She seems to understand everything. She can point to 7 body parts when asked. She can do the actions to 3 different songs on verbal cues alone. She can pick the correct object out of a group of 3 or 4 objects when asked "give me the ______" She turns to her name consistently. She understands (but doesn't obey) "no" (she thinks its a funny game instead). Her favourite thing to do is to go upside down on all fours. Here is a video of her doing it on my verbal cue alone.



She still isn't walking yet. She is so close but really not that interested. She can stand alone and hold her balance really well and cruise all over but she would rather crawl - and she does this at lightening speed! Anyone else out there have late walkers?

We spent a weekend in August at the annual VOICE camp. It was held at Bark Lake in Irondale, Ontario. It was our first time there and my husband Markus was asked to do a concert for the kids. It was the most fantastic time ever. We met so many really wonderful families and it was great to swap stories and tips with other parents of kids with CI's and hearing aids. It was really well organized with activities for the babies and kids of all ages - canoeing, fishing, hiking, high ropes, beach and great food. We are looking forward to coming back year after year. Thank you to Rhonda and Shawna for making us feel so welcome. Here are a few pictures.




I will close with a quote from a VOICE poster. I read it a couple weeks ago and it had quite an effect on me and sums up how right we were in our decision to have Ava implanted.
"I am 5 years old. I like school, especially gym. I talk to my daddy when he calls me from work. I tell my dog Scooter stories. I listen to music. I am deaf, I can speak and I have a voice."

NO AVT!!!!

I know, I know, I haven't been posting as often. My reasons? #1 -S U M M E R! That means 6 kids running in and out of the house. #2 - here in Toronto, the City's unionized employees CUPE 416 and CUPE 79 are on STRIKE. What does that mean? No garbage pick-up. No city-run summer camps (affects 3 of my kids-which means they are home ALL THE TIME) and, worst of all, NO auditory verbal therapy for Ava. That really, REALLY sucks. She's only been hearing for just under 3 months and the therapy is CRUCIAL to her language development. The therapy should be considered an essential service. The longer the delay in therapy, the longer it will take for Ava to catch up. What makes me ill is that we used to have a really great therapist who is a Teacher of the Deaf (TOD) who wasn't connected to the City. But we were told we weren't allowed to use her because she was missing some sort of certification - really a political excuse, but, whatever. So then we were referred to another really great therapist who happens to work for the City and now we can't use her either because of the strike! So, where does that leave us? WITH NOTHING. We have not been successful in finding another therapist as of yet for temporary therapy during the strike. We will have to pay out of pocket and find private therapy, which we will do if this strike doesn't end in the next couple weeks.

Despite not receiving the therapy, I do feel that Ava is still moving along with her hearing and receptive language. She is imitating many sounds now. She vocalizes ALL THE TIME, a real chatter-box. She seems to be building many approximations and her receptive language continues to grow too-we can see she understands more and more words now. So I guess its all good for now but without that professional feedback, the doubts really creep up on me - very unsettling feeling.

Ava just had her Baptism yesterday. It was such a beautiful day and she looked so precious in her white gown. The priest was very considerate and took care not to get her CI's wet. I noticed a few stares from the congregation. That is to be expected. It's too bad that CI's really are quite foreign to people even now-a-days. I would love it if people asked questions about Ava's CI's. The more we can educate the general public, the better it will be for Ava. I took the kids to a fast food place for lunch last week and a kind elderly woman approached me and asked me about Ava's CI's. After I explained that they allow Ava to hear and learn to speak normally, she told me that Ava is a gift from God and how blessed we are to have her. And how right she is!

Happy Birthday AVA!

AVA IS ONE!!!



Ava turned one year old yesterday! It was such a huge event for us, considering all that Ava has been through in her short 12 months! She is such an incredible, happy and sociable little girl. She is trying so hard to talk and uses her voice all the time. She loves her CI's and loves hearing stories, music, our singing and laughing. While she loves listening to all her musical and noisemaking toys she also loves the quieter sounds, such as the soft gurgling of the coffee maker, and the dings of the microwave when her food is ready. She loves watching her Baby Einstein videos. She loves chasing big sister Lauren all over the house and doubling over with giggles. She loves bubbles and eagerly says "or" for more.

Ava, you are my angel. Never be afraid to dream big. Never believe you have limitations, because you don't. You.Can.Do. Anything. Just spread your wings and fly, baby.

PS - Ava's newscast airing has been postponed to JULY 8TH! Stay tuned.

Amy

Ava's going to be on the news!!!!

This little monkey is going to be on the local evening news - want an autograph? We were approached by our cochlear implant program and asked if we would agree to be interviewed on a newscast about the importance of early detection of hearing loss. Me, be on tv? Damn right I will! We headed down to Sick Kids hospital so that Ava could be filmed having a mapping done. The following day, the news team came to OUR HOUSE and did some more filming of me working with Ava and then a one on one sit down interview. How cool was that!! The clip will be aired on Wednesday, July 1st (Canada Day) during the 6 o'clock news on Global Toronto. It will be aired across the country. However, for our American friends, you can catch the clip after 8pm (EST) on July 1st on Global's website here. Look on the side menu for "Family Health" with Beatrice Politi. The clip should remain on their website for a few weeks.

Ava's 1st birthday is on Tuesday. Words cannot describe just how special and important this occasion will be for our family. Ava is our miracle baby in so many ways and not just through the miracle of her cochlear implants.

Ava is babbling!

Last Thursday - June 11th (6 weeks post activation) Ava decided that she would start babbling. YEA AVA! She's giving me mamamamama and rarararara. She is well on her way to acquiring speech. I have been waiting for this day and it came! I am so THRILLED!

Finally, some videos - Six weeks post activation!!!

I am finally posting some videos of Ava showing her progress with her CI's.

In this video, Ava demonstrates the "ahhhhh" sound while eating (as in using the spoon as an airplane) and her approximation of "all done"


In the next video, Ava is responding to "where's the light" by first looking up at it and then by pointing to it. This video clearly demonstrates the "power of the pause" meaning give your child a chance to respond by allowing ample time to process a question and to formulate a response.


Ava has figured out how to use her little pointer finger. I love it!

Other things.......She can imitate a growl sound for the lion.
She can differentiate between where's daddy, where's mommy and where's Lauren by looking at the right people.
She will point to the eyes on a doll when asked "where's the eyes?"

Stay tuned for more videos....... :-)

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.

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!

IT'S A GO!

Ava had her final pre-implant audiology appointment last Friday and we met with the surgeon. We learned that the fluid in her ears is nearly gone - that was what I was most worried about as I understand there would have been a delay of the surgery if she still had the fluid in her ears - she would have needed tubes to drain the fluid first, which is another surgery altogether.

Today I took Lauren and Ava to the Bob Rumball Centre's Easter Egg Hunt. This is also where I took the baby beginner sign language classes a few months ago. I just love visiting the centre because you get to meet other parents who have deaf children and learn from their experiences. I feel so much at home there, being hearing impaired myself. There were kids with all different levels of hearing loss and some of the parents were deaf as well. A lot of the families were using sign language. So many people were drawn to lil Ava - she is so sociable and eager to engage anyone to play.

We are to check-in at the hospital at 6am Tuesday morning. The surgery commences at 8am and is approx. 5 hours long. That will be the longest 5 hours of my life! My parents are going to come from Tobermory to pace the floors with us. I will stay with Ava overnight at the hospital and she will be released Wednesday morning. It will still be another 3 to 4 weeks after the surgery before her implants can be "activated" so as to allow ample healing of the incisions. But soon sweet little darling you will be able to hear me tell you how much I love you. Soon you will hear the birds chirping, doggies barking, Daddy's stories, the doorbell ringing, the beeping of the microwave and the whispers of Lauren's secrets. You will come to know that the colourful mobile over your crib plays three different lullabies and the little red horn on your car goes beep-beep when you press it. There's a whole new world waiting for you Ava and I can't wait to show it to you!

Welcome to Holland

I came across this piece that was posted by a brilliant mother on her blog. The piece, entitled "Welcome to Holland", was written by Emily Perl Kingsley. Ms. Kingsley is a writer for "Sesame Street" and has a son with Down Syndrome. She wrote the piece to help people imagine what it would feel like to raise a child with a disability. It was Ms. Kingsley who encouraged Sesame Street to include children with disabilities on the show. She has written over 20 children's books and won numerous daytime emmys through her writings for Sesame Street.

WELCOME TO HOLLAND
c1987 by Emily Perl Kingsley. All rights reserved.

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......


When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Colosseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland." "Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy.

"But there's been a change in the flight plan. They've landed in Holland and there you must stay."

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very, very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

That piece reminded me of the raw emotions I felt upon learning Ava's diagnosis. I felt like everything was on standstill - time just stopped. Then the grief and constant crying for two or so weeks. And then, I educated myself. Like a sponge I soaked up any and all information I could get my hands on. Talk to and meet other parents, join support groups, talk to professionals, surf the web, borrow books and videos from the library, take sign language classes -. And then, the grief stops - you smack yourself in the back of the head and say ENOUGH its time to move forward. You have a beautiful, healthy baby who cannot hear. What are you going to do about it? Just like in the beautifully written piece by Ms. Kingsley, you catch your breath and notice all the beautiful things that Holland has to offer and you realize you would never trade Holland for Italy, ever....

Ava's surgery is only 10 days away! We have one more appointment left with audiology on March 27th. At the last couple appointments the audiologist was unable to do part of the testing due to fluid in Ava's ears from a cold she had a while ago. I hope it is all cleared up - I'm not sure if that will affect things if she still has fluid in her ears as far as the surgery date. We also have an appointment with the surgeon that day. Hopefully I will find out the time of the surgery and pre-op instructions at that appointment.

Thank you for reading and God bless :-)

Cochlear Implants-What they look like and how they work

Cochlear Implants - Surgery

With Ava's surgery just over two weeks away (two long weeks that is!), many of you are wondering just what exactly will be done to Ava? Last month I came across a webcast of a live surgery of a little boy receiving his second cochlear implant. The webcast is about 1 hour long. The surgery is narrated by the surgeon in real time as well as the audiologist who gives a description of the implant and how it works. WARNING-the webcast is graphic so if you have a weak stomach then I recommend you do not watch it. If you do watch it, you will be amazed at how miraculous the technology really is.

http://www.or-live.com/RainbowBabies/2419/

In the US, I believe the surgery is an outpatient procedure. However here in Toronto the patients are kept in the hospital overnight and discharged the next day.

The small incisions take about 3-4 weeks to heal. At around 3 weeks post-op, we will be given all the external equipment as well as equipment instruction. Ava is to wear the equipment not yet activated for one week to get used to having it on. At around 4 weeks post-op, we will see the audiologist who will then "activate" the cochlear implants and Ava will hear for the very first time! We will be sure to videotape this activation for all to see. Some babies react to the sudden onset of overwhelming sound by crying (which is a good thing because that means they can hear!), some babies don't react much at all at first. This is all very exciting, however, the fact is that once the equipment is activated, it is going to take a few years of weekly auditory verbal therapy for Ava to make sense of sound, to give it meaning and develop language. Essentially, Ava's hearing will be that of a hearing newborn baby once she is activated. She will have to play catch up so that by the time she enters kindergarten she will be even with her hearing peers in terms of speech and language. She has a head start because she is being implanted at such a young age. The rate of success of catching up to her peers is high and quicker than those implanted at a later age. It will take hard work , perseverance and patience. Ava is so lucky to have 5 siblings at home to constantly bombard her with language. We can see she wants to communicate so very much as she is always studying the movement of our mouths while we talk and seems puzzled by it.

How do cochlear implants work?

In normal hearing, sound moves in the ear canal and strikes the eardrum. The soundwaves cause the eardrum to vibrate which move the inner ear bones which in turn cause the fluid in the inner ear to move the hair cells inside the cochlea. The hair cells convert this movement into electrical impulses which are sent to the auditory nerve into the brain thus the brain perceives sound. In sensorineural hearing loss, the hair cells inside the cochlea are damaged therefore the brain doesn't receive sufficient electrical impulses. In persons with mild, moderate to severe hearing loss, such as mine and daughter Lauren's, hearing aids are sufficient to amplify the sounds so that the remaining hair cells can still be stimulated and do their job. In Ava's case however, the hair cells are too damaged or missing altogether so hearing aids cannot help her.

A cochlear implant consists of an internal component and external components. When Ava has her surgery, the surgeon will be placing the internal component, which is a receiver/stimulator that is positioned under the skin in a bed created in the bone behind the ear. An electrode array, consisting of 22 tiny electrodes is surgically inserted approximately one inch into the cochlea.

The external components, which will be on the outside of the head, consist of a light-weight sound/speech processor (resembles a hearing aid) composed of a directional microphone worn behind the ear and a transmitter which is placed over the spot where the implanted receiver is located and held in place by a magnet.

How it works - the external sound/speech processor (which is the device behind the ear that looks like a hearing aid) captures sound and converts it into digital signals. The processor sends the digital signals to the internal implant which is under the skin behind the ear. The internal implants converts the signals into electrical energy, sending it into the electrodes inside the cochlea. The electrodes directly stimulate the auditory nerve bypassing the damaged hair cells and the brain perceives these signals as sound.

What does it look like?

This is what the external components look like. Because Ava's ears are so small, the sound processor is too heavy to stay on her ears. The processor can be separated so that the microphone part, which is lighter, can stay on her ears while the bottom half which is the controller and holds the batteries can be pinned to her clothes or inserted into pockets I will have to sew on or inside her shirts (more like a job for Ava's grandmothers I can barely sew a button). When Ava is about 2 years old or so, her ears should be able to support the full weight of the sound processor and controller (BTE or behind the ear).

Below is a link showing a diagram of Ava's external components. We will be able to choose what colour we want to use - probably dark brown to match her hair.

http://products.cochlearamericas.com/diagram/freedom-babyworn-diagram

I hope I have given a somewhat accurate description of the surgery and components of the cochlear implant. If you come across this blog and note any inaccuracies, please leave me a comment so that I may fix them.

AV therapy and new tricks

Ava's auditory verbal (AV) therapy is every Monday but we had to reschedule this week so we had therapy today. Ava has an amazing therapist named Sandra who was also my daughter Lauren's (4, bilateral hearing aids-moderate loss) therapist. Sandra has been working very hard at trying to get Ava to detect some sound so as to form pathways in the brain so that once Ava starts hearing with the implants, sound won't be so foreign to the brain. Also we have been working on getting Ava to vocalize as a means of communication (other than crying of course). One of the sounds we have been working on is "uh oh!" whenever Ava drops a toy off her high chair. Well today Ava dropped something and Sandra did her usual "uh-oh" and paused for Ava's reaction and Ava actually said "uh-oh" back and looked back at Sandra for her reaction! It was more like "uh uh" but it was definitely a deliberate attempt at vocalizing that sound. Sandra and I looked at each other completely speechless for a few seconds and then we started hollering with excitement. Another new trick Ava did today was while Sandra was showing her this toy where there are different knobs and a Sesame Street character pops up when the knob is manipulated. Ava really loved this toy. I started asking Sandra a few questions about Ava's upcoming surgery so Sandra's attention was diverted to carrying on this short conversation with me when suddenly Ava decides she's had enough of waiting to be entertained so Ava grabbed Sandra's finger and placed it back on the toy so as to indicate to Sandra "ok enough gabbing let's get back to work now". This is all so exciting as there have been times where Ava didn't really respond much at all to therapy but lately she has been demonstrating that she is definitely getting something out of it despite hearing very, very little with her hearing aids.

I didn't make it down to the hospital for Ava's blood test today. We will be going tomorrow morning instead.

Introduction and Background

Welcome!

I am new to the blogging scene so I will learn as I go along. The purpose of this blog is to share my experiences as a mother of a deaf child in the hopes it may comfort other parents who are just learning of their child's diagnosis of profound hearing loss. I've spent countless hours researching the internet, reading many, many wonderful and informative blogs and talking to many professionals about my daughter's options.

A Little Background

My name is Amy and I am happily married with 5 children and 2 stepchildren. I was born with sensorineural hearing loss in both ears (severe to profound in right and moderately severe in the left) and I wear hearing aids. My husband is hearing. My 3 oldest children are hearing, my fourth child, born December, 2004, has moderate hearing loss and wears hearing aids in both ears. Then, little Ava, born June 30, 2008, was diagnosed with profound hearing loss in both ears when she was nearly 3 months old. We were completely shocked since Ava had passed one of the the earlier screening tests in her right ear! I was devastated and spent a good week grieving. We were referred to Toronto's Hospital for Sick Children's wonderful Cochlear Implant Program and haven't looked back since!

Method of Communication

For my husband and I, our decision to give Ava cochlear implants was a no-brainer. We live in a hearing world so naturally we want Ava to be able to hear and speak. That is not to say I didn't research all of the possible methods of communication. We even took a basic sign language course to learn a few signs because for the time being, Ava cannot hear, so we want to be able to communicate with her in the most effective manner possible, until such a time that she can hear. She can do the sign for "milk" and "more" and knows the signs for "bath" and "all done". She lifts her arms when she wants up and can wave "bye-bye". If Ava later decides that she wants to be part of the deaf culture then that will be her choice. But for now, we as her parents feel this is her best option since the younger the child is when they receive cochlear implants, the greater chance they have of developing normal speech and language. Our goal is to have Ava mainstreamed into regular school at kindergarten.

Here is a link to the Hospital for Sick Children's Cochlear Implant program. Here you will find information about how a cochlear implant works and about the candidacy process. http://www.sickkids.ca/CochlearImplant/Cochlear-Implant.html

Ava was fitted with her hearing aids as part of the cochlear implant process in October, 2008 (4 months old). She also began her auditory verbal therapy soon afterwards. The hearing aids have been of very little benefit to Ava. However, with the aids, she certainly can detect certain loud sounds that are close to her such as a maraca or the "ah" sound and will turn her head toward that sound. With her aids, she seems to respond when my husband plays the guitar for her or if we have a CD playing with the volume turned way up. She is a very happy and vocal baby full of giggles. She loves to be tickled, fly like an airplane in the air and play peek-a-boo. She is very visual and at times studies her toys intently before shoving them in her mouth whenever possible. She is trying to figure out just how to feed herself a cheerio as it never seems to make it to her mouth getting lost somewhere in her tiny fist. She is sitting up well and is about to crawl any day now. Her favourite person in the whole wide world is her older sister, Lauren, who is 4.

Ava had her MRI a couple weeks ago. All seems to be well because they called me with a surgery date of March 31st-she will be 9 months, 1 day. We were told, however, the MRI showed some kind of a cyst and that they need to run a blood test but that its nothing to worry about and is one of those things had she never had an MRI we would never know about the cyst. Of course I'm going to worry a bit. I mean will the cyst grow, etc. and what are they testing for? I will ask tomorrow when we go down to the hospital to do the blood test. She also must fast for the test and can't have anything to eat/drink after midnight tonight. That is going to be a challenge as she has been waking up lately demanding a 5am snack!

One Implant vs. Two?

We have decided bilateral implantation is the way to go. With two implants, Ava will be able to better localize sound and understand speech in noisy environments. That's the problem I have with hearing aids, it only acts as sound amplification so when I am in a noisy environment the background noise gets amplified too so it is hard for me to understand speech and I have to rely on lipreading. Two ears are better than one. If for some reason there is ever device failure on one side Ava will still be able to hear. My husband and I did initially think we would only do one implant given some of the success stories of children with one implant but we are convinced two implants are best.

So, there you have it, my first blog post. In the months to come I hope to post details of Ava's CI surgery, activation, mapping and language progress. I will also tell you more about my wonderful blended family. I hope this has provided you with some comfort if you are a parent early in the days of your child's initial diagnosis of a hearing loss. There really are so many options available if you take the time to do some research and coming across this blog is a great way to start. I am so very excited and looking forward to Ava's upcoming surgery and bright looking future very much!