Thursday, December 17, 2009
Saturday, October 31, 2009
Sunday, October 18, 2009
Monday, September 28, 2009
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.
Tuesday, September 15, 2009
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
Sunday, September 6, 2009
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."
Monday, July 13, 2009
Wednesday, July 1, 2009
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.
Saturday, June 27, 2009
Monday, June 15, 2009
Wednesday, June 10, 2009
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....... :-)
Friday, May 29, 2009
Saturday, May 16, 2009
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
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
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:
Wednesday, April 29, 2009
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!
Thursday, April 23, 2009
Friday, April 10, 2009
Wednesday, April 1, 2009
I have posted a slide-show of the surgery day - which you can view here. Enjoy!
Sunday, March 29, 2009
Saturday, March 21, 2009
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.
Thank you for reading and God bless :-)
Sunday, March 15, 2009
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.
Wednesday, March 11, 2009
Tuesday, March 10, 2009
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!