Sunday, January 17, 2010

Our journey continues

On June 2, 2008 we brought our family to live in America. August was now sixteen months old. It was time for some real hard core studies of atresia microtia.
I started calling any affiliation to the deaf and hard of hearing. At this point, I was sure that August only had hearing in the left ear and there was only hope of ear reconstruction to the right ear. We did not know any other family with children that had atresia microtia. We had no mentors or guides to help us get more answers so I started just dialing and Googling everything possible.
At some point in July, I was given a group to contact called GLAD, the Greater Los Angeles for the Deaf. I spoke to a gentleman who finally understood that I was a mother looking for answers for my son.
I had called numbers of ENT's and the staff had no idea what atresia microtia even was. I didn't want to take my son to a doctors office that didn't understand what we were there for.
So you must understand how happy I was when I finally had someone that knew what atresia microtia was and that I needed answers. He soon had me connected to other families with children whom are deaf and/or hard of hearing. I was invited to private gatherings with these families to get familiar with others in the same boat. I had a phone conversation with a few and met with others.
But it wasn't until I met two beautiful ladies in Venice Beach one summer afternoon. August and I spent a few hours walking and talking with Jessica and Maddy. It was a turning point in our lives. Beautiful little Maddy was also born with atresia microtia and her mother was searching for answers as well.
As we comforted one another of our little gifts from God, we shared everything that we knew about atresia microtia. Jessica told me about the John Tracy Clinic and House Ear Institute. I shared with her about Early Start and programs that were available to help with early intervention.
But for me the turning point in my life was getting a call back from John Tracy Clinic telling me that they would give August an audiogram right away. They gave us a consultation and many connections to institutions to help us make the right decision for August.
At nineteen months old, we still had no idea if August had a working cochlea or not in the right ear. We still considered him to be deaf in that ear. So you could only imagine the flow of tears from my eyes when I witnessed my son for the first time respond to a hearing test on the atresia ear. Thank you John Tracy clinic!
The test showed that August's inner ear, the cochlea, was fully functioning. The issue was that he could not get sound through all the bone that was in the way of what should be his canal.
He could hear! He could hear! He actually could hear in that ear without a canal but things had to be extremely loud to get through the bones. It was the best day since August was born so far.
We were set up to meet with a speech therapist at John Tracy Clinic to help him get caught up. I was asked to attend meetings as well at JTC to meet with other families like ours and learn more about the deaf and hard of hearing.
What JTC did for our family is priceless. I was able to get all my tears and fears out and get more comfortable with what was to come for our August. They finally gave us the answer we had been waiting for on August's hearing ability.
For almost a year I stayed involved with JTC. August progressed in speech with the help of Mary at JTC. Everyone at JTC helped me understand and be comfortable with what we were dealing with in having a child with atresia microtia. They even gave us a BAHA (Bone Anchored Hearing Aid) to borrow for August. Which was something I thought was important to try before we spent tons of money on for nothing. Thank you JTC for your help, love, concern and support. Thanks to all the families I met at JTC. You too helped me heal and understand.

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