We saw a geneticist yesterday. He was a very nice and sharp guy. I thought it was interesting that he didn’t 
come in and explain things about Lilly starting with the basics, he began by saying, “What questions do you have?” I appreciated that. He assumed we had done research and were aware of many things already. Of course, as with any good “teacher,” he eventually did remind us of the basics about Williams Syndrome (WS). We really didn’t learn anything new, but what we had learned previously was confirmed by an expert who has had previous experience with WS.
We’re also grateful for the occupational therapy that is offered to Lilly, and this will actually take place in our home. That is a real blessing. Three ladies were in our house this morning discussing the strategy for the next few months.
Next week, we go to the heart doctor to see how Lilly’s arteries are doing. Please pray with us that they would not narrow, but actually improve.
Click here for a little letter I wrote to Lilly (it includes other pictures with Katie, Luke, and Daddy).
February 26, 2009 at 8:37 pm
My name is Sarah, my sister (Leslie) is 23 and has williams symdrom. When she was first diagnosed they didnt know near what they know now, they only knew off 300 cases, and we have learned alot through the years. When Leslie was little they didnt give us alot of hope and they didnt believe she would accomplish very much. She graduated high school and worked at the same job for 6 years and is a wiz at computers, videos games, and she loves novels. She can figure anything out on the computer, and can read a 400 novel in about 4 days, but sometimes she has trouble with simple things like folding and putting away clothes. but she has achieved alot more than they predicted. I was just writing to give you a little hope for the future. If you ever have any questions feel free to write.
February 27, 2009 at 4:29 pm
Dear Sarah:
Thank you for your story and kind words. That is amazing that not very long ago there were only 300 known cases. There have been significant advancements in understanding and diagnosing!
Thanks for taking the time to write and offer encouragement.
Warmly,
Steve