Yesterday I felt such peace. It was truly from God. I wasn't even concerned about the impending phone call from the Genetic Counselor from CHOP. But she never called. I left a message. No call.
I spent most of today being nervous. Nervous about when the phone would ring and nervous about Ava's consultation with her ENT for an evaluation for a frenulectomy. I don't know why, but that's how I was. I approached the appointment prayfully. I simply wanted to express to the ENT why I felt that this procedure was warranted even though clinically her frenulum is not tight.
They did not clip it in the office. The ENT feels that is cruel to do with out anesthesia for a child Ava's age. He did agree with my logic and thinking about why I want it done. However, he said that he is not in a rush to do it because he doesn't think it will help. I am supposed to email him once I have more results from CHOP and when we decide to have her MRI and Lumbar Puncture. If we do that at AI not CHOP then he said that he would clip it for Ava. Otherwise we have to figure out how to make that happen.
We still have not heard from CHOP. I am begining to think that our Genetic Counselor is ill. Everything in His time....
About Me
- Amy Benton
- In June 2001 I married my best friend, Allan. We have had five children, three of whom are living. Emily and Alexa are twins who turned 5 in Nov. Elaina will be 3 in March. Our baby Ava was born August 13, 2009 and died on Dec. 18, 2009. Our son, Eric, also died when he was 4 months old. He would have been 6 in Aug '09. They both had the same very rare Mitochondrial disease. A Fund has been established to assist with Ava's medical bills. If you feel lead to help us in that way Checks may be made out to "Ava Benton Medical Fund" and sent to: Linda S. Dilorio Wilmington Trust Company 151 Lantana Drive Hockessin, DE 19707.
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