|Boo, at the wrong date on the picture|
In a homeschooling house full of 7 kids & 3 guniea pigs....there is never a dull moment! A lot of people show genuine concern for us and want to know how we are doing, as the road we've left behind was not a pleasant one. So, here I am, to tell some of our stories...share some of our days...and open up a part of our world to you! Come join us on our journey so you won't miss the moments that take our breath away!
Wednesday, July 27, 2011
A Whole New World!
41 months ago, Duckling entered into an unfair world of uncertainty. No one could have guessed the challenges she would face in such a short amount of time in her life. We found out she was deaf the day after she was born. With the traumatic events that were taking place during that time of my life, I was thankful that my baby girl was here and that she was ok. The fact that she couldn't hear, really didn't matter. The nurses felt my reaction to the news was odd, but that's where I was at that time in my life...learning that there were bigger things to be upset about and figuring out ways to accept things that we couldn't change.
It took 5 months to get a diagnosis of EVA (Enlarged Vestibular Aqueduct) and Severe Mastoid Disease. She immediately received her hearing aid. Her initial hearing loss was only in one ear, but we are not guaranteed that she will always have hearing in her "good" ear. It has always been recommended that we learn/use sign language. She was signing by the time she was 9 months old, but then we ceased teaching/signing (big mistake)!
12 months ago, there was a drastic change in her hearing...in the last 6-12 months she began refusing her hearing aid and her language development severely declined. I began to notice that it often appeared as though she was ignoring people who were speaking to her and I would have to appologize for her and tell them that she simply can't hear them. I began to notice that as I tried to get her attention outside or to tell her she is getting too close to the road, or to wait for me to go across a parking lot that she was unable to hear me. I noticed my little girl slipping into her own little world of silence and I began feeling the pain that was expected of me that day after she was born. I began feeling guilty that just a few years ago, her being unable to hear was not a big deal and now it was all that mattered. I began to worry that she would loose what little hearing she had left and I was so scared for her. You can't imagine what it is like to hear a song and wonder if your child will always be able to hear it or what it feels like to feel you "have" to teach your child to sign "I Love You" because you don't know if they will always be able to hear you say it. When you sit in a hearing booth with your child and you see first hand exactly what they can't hear, it is absolutely heartwrenching. I do have to say it is one of the hardest things I have to watch as a parent...there is almost nothing more devastating.
Today...she has entered into a whole new world! A world in which she can hear everything going on around her! They did one last hearing test (the 3rd one in about a month) to make sure one last time, that there was no hearing left. They confirmed their prior results...there is no way to make use of her right ear...but, there is a way to pick up sounds on her deaf side, so that she is able to hear them! With a bone anchored hearing aid, we are hoping to offer her a safer world (as being in a noisy environment is very unsafe for her), we hope to lessen her frustration (as hearing in a crowded place is not possible for her) and to better her capability of developing the language skills she is missing.
Today, she received a Ponto Bone Conduction Hearing Aid.
This bone anchored hearing system can pick up sounds on your deaf side, convert them into sound vibrations and transfer them to your healthy ear via the skull bone. To read more about this and how it will help with her current one sided deafness, click here. She will be testing this system for the next 3 weeks. So far, just today, the results have been absolutely amazing! If we like the results we get from this system, she will get a system to call her own. When she turns 5 she will then be implanted with a titanium post, the receiver will then "snap" right onto a post that will be behind her ear. Until then, she will wear a headband to hold the receiver in place. Also, with this system we also will have the capability of adding an FM System if we choose to use one later.
For most people, the biggest milestones in their toddlers lives are watching those first steps...for us, it's watching the look of amazement on her face as she hears sounds in a way she has never heard them before!