Ellie's mom posted this activation video on the Pediatric Ci Circle and I asked her for permission to share it with all of you. She generously granted permission to share her story so that others could learn a little bit more about the diverse journeys we all experience. My favorite part is when she hears her own voice, and she is at an age where she is able to collaborate with the audiologist, making the mapping experience a lot easier - she is ADORABLE!!! I sincerely apologize that I have been unable to add captions, I haven't had time, nor have I really looked into how to do it on Abbie's blog, but I will do that...still recovering from jetlag. Take it easy on the comments or I'll be forced to moderate - don't want to do that...there is a beautiful child involved.
Ellie's story...(Ellie's Mom sent me this to share with anyone reading)
Ellie was born 13 weeks early at a mere 2 lbs 1 oz (955 grams). Her first month of life was a hair-raising roller coaster ride - doing great one day and on the brink of death the next. She was too small to test her hearing until she was close to 3 months old. When they finally did it the results were inconclusive because she was moving constantly throughout. They thought she might have a mild/moderate hearing loss. We scheduled an ABR for as soon as we could after she got home - that was 5 months later. So at 8 months of age we were finally able to confirm that she did have a hearing loss that was on the mild side of moderate. She was fitted with hearing aids and so began a new part of Ellie's journey.
We didn't know what would be the best way for Ellie to communicate so we started out doing a TC approach. I had already planned to teach at least a few signs to help communicate basic needs before she was able to speak. I had friends who had done this with their (hearing) children and found it very helpful. When Ellie had learned about 5 signs, she suddenly seemed to make a connection with speech. After that, I couldn't get her to do any more signs. Then we pursued speech therapy and got her into a good program where she could learn to talk well.
We never really knew what the cause of her hearing loss was. She had been too tiny at the beginning to do an MRI or anything. Everyone guessed that it had been caused by a brain haemorrhage she'd had when she was 2 weeks old. Last summer, she experienced a drop in her hearing of about 15 Db. It wasn't until November that we were able to get an MRI scheduled and finally learned that her hearing loss was caused by LVAS and was a progressive loss that would (over time) almost certainly result in profound deafness. We were told to avoid head trauma as this could cause another drop in hearing.
Two weeks later on a Saturday evening, Ellie lost her balance while she was running down the hall and hit her head on the wall. This kind of thing had happened many, many times before. She's 4 yrs old. This time, however, she lost 40 Db. She suddenly jumped from the moderate/severe category right into profound. On the way to the doctor on Monday morning Ellie told me that "the doctor needs to give me a cochlear implant like Shelby." She was disappointed that he did not do this on that first day. She continued to tell us this as we waited through the steroid treatment and for our next doctor's appt.
It was so hard to wait.
When we went to the doctor again at the end of December, she told us "the doctor needs to give me a cochlear implant so my hearing aid will not be broken and I will not feel crazy anymore." It broke my heart. She had terrible anxiety. Everyday she told me that her tummy hurt - 10-20 times a day. We got through the waiting period by talking about it with her everyday. We had to "wait our turn." When she would tell us with a sad face that "I cannot hear very well." We would acknowledge it and then tell her that we loved her just the way she was even when she could not hear.
Somehow, we made it through.
You can see her joy at being able to hear on this video. It has only increased with time. Her stress level has dropped. It's not quite gone yet. She still feels a little stressed when what she hears doesn't make sense. But it's been 4-5 days since she has said that her tummy hurt. She is engaging in play again with her cousins. Her laughter has returned. Her happy, outgoing, confident personality has returned.
*I have never seen such an obvious reaction to sound as Ellie's behavior in the car...really amazing video*