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!
"I Cannot Even Smile Here"
1 week ago