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!