Tuesday, January 3, 2012

University of Louisville

Today we had to be there at 8:30. We left at 8:00 and good thing we did. The ramp we needed to take was closed so we had to detour. When we got there they immediately started. Josh and I went with Dr. Mervis and Keelie stayed with the staff. The first hour was Josh and I answering tons of questions about Keelie and her speech and behavior. We found out that the first diagnosis of a duplicate 7q11.23 was in 2004. There was an individual diagnosed with dup 7 who wasn't diagnosed until her son showed it. She was actually pictured as a child client in Hodson's and Paden's book on Targeting intelligible speech. So she was being studied for her speech not even knowing she had a dup 7. The nerves in Keelie's frontal lobe could also be a delay from the dup 7. She couldn't really say if the seizures were related to the dup 7 or not because only a few others had seizures.

this is an article from the research we are in at the University of Louisville. It has a lot of information in it.
http://louisville.edu/psychology/mervis/research/Velleman%20-%20%20Mervis%20ASHA%20Perspectives%20Dup7%202011.pdf

Dr. Mervis told us she could tell Keelie was intelligent and social. After the interview I went to a playroom with Keelie. We were filmed for 30 minutes. They were in a separate room and they had hidden cameras so Keelie didn't know anything was going on except she was playing with Momma. After the playtime we went back to talk to Dr. Mervis some more. She did inform us that of the 40 families they are studying most have successful jobs and college educations. She also told us that there were approximately 50 noted cases of dup 7. She said there could be more. They are just undiagnosed. The dup 7 was actually discovered by accident. A child was being tested due to his severe speech delay. Basically we just answered a ton of questions today. I went back alone at 2:00 for a Mom interview. It wasn't much. They were screening me to see if I had anxiety. Basically to see if I was handling Keelie's disorder alright. Thursday we see the speech therapist. We will first go in Thursday morning for a short evaluation where she will look at pictures. Ryland is also involved in this one as well. They just asked if he could since he is so young and we are here. So why not.

So for a little fun we did go swimming. My goodness why does my child want to swim when it's 28 degrees outside. Ha ha. But we went. It's bad because we have to walk across the parking lot to get there. It's in a workout center since we are on a campus. Then we went to the Old Spaghetti Factory. It was fun. Tomorrow should be a fun day then back to the university on Thursday. Good night all.

2 comments:

  1. It's amazing that God has opened this door to knowledge and research for you. I praise Him for what He is doing on Keelie's behalf - and for her mom and dad.

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  2. Thanks for the update! Praying for your sweet family!

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