About 6 months ago I ran into a lady named Jodi that does ABA with her daughter. I wanted to get together and see if she had any ideas that would help me out in Sawyer's program. We had a great time getting to know each other and sharing experiences. Before I left she told me that Sawyer reminded her of her friends daughter. So I asked more questions and they really did seem to have a lot in common. She told me her friend thought her daughter had Pitt Hopkins syndrome. So I went home and did some research. After researching I felt like there was a good possibility that this could be what Sawyer has. It is a deletion or partial deletion on chromosome 8. So I made the appointment with the geneticist at Primary Children's. The appointment was 5 months out. Finally the day had come December 4, 2012. I was sitting in the waiting room with the boys in the double stroller waiting for Ben to meet me. I saw a lady with her daughter that had some characteristics like Sawyer. The spirit told me to go talk to her, but I thought it would be inappropriate so I ignored it. After a while I gave in and went over to her. I told her that her daughter was beautiful. I told her I didn't want to get to personal, but I was wondering if she knew what her daughter had. She said she would love to talk. As the conversation went on I found out that she also thinks her daughter has Pitt Hopkins, but she has yet to have the test done because the insurance hasn't been cooperating. I observed the interaction between the daughter and mother and was very surprised that it was the same interactions I get with Sawyer every day. The nurse then called her back.We didn't have time to get each others information. A nurse walked in to the our room later and handed us a piece of paper with the ladies name and phone number on it.
Then the nurse came in and said there where Jazz players that had come to visit the children and asked if we would like to visit with them and get an autographed ball. So we got our picture and a signed ball. I think I was more excited than anyone else in the family.
The visit with the doctor went well and he actually listened and he seemed to think that I could be right about Pitt Hopkins. They have decided to do a microarray test and if nothing is found we will do other tests. After I had left the office I called my friend Jodi to tell her of the experience I had of meeting this lady. She asked if her name was Stacy Davenport and it was. The lady I met in the waiting room was Jodi's friend she had talked about. I later called Stacy and we talked about all the similarities in our children. I know that I have been lead by the spirit to meet the people that our in my life and I am so grateful to finally find someone that has been through and is going through similar things. It will be very interesting if both of our kids have Pitt Hopkins. It is very rare conditions with only 250 children in the world being diagnosed.
Wednesday, December 5, 2012
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