Dr. Gordon from PRF responded to my email and said she would be happy to talk with me over the telephone on Tuesday. I said I would love to talk to her and asked that it be in the afternoon when I can be home and without children. I am waiting to hear back from her on what time works for her. Please pray that I am able to get some answers as to the possibility of treatment sooner than one year. Her son has progeria and she started PRF. In 10 years they have identified the gene and started clinical trials with medication so she is a woman of action! I just hope I can be so delightful that she can't resist bringing us up there and treating the boys.
I guess I have not noticed how far the gap is between Nathan and his peers. One of the neighbor kids was over hear the other day. He is 3 1/2 and runs like crazy, jumps and even jumped off our fourth step onto the ground. Nathan can't even walk down those steps without help and can't jump off one step. It made me sad watching them. Libby and her friend and the 3 1/2 year old would be playing in the back. They would run around to the front and Nathan would slowly make his way to the front. By the time he got there, they would be on to some other area. Eventually he gave up and played by himself. The impact of his physical disabilities on his social and emotional development is beginning to worry me. I just worry that he is not going to be able to do what little boys do.
Nathan also got his first pair of crocs thanks to Meemaw Falcone. I am always sad when I see little kids in crocs because Nathan cannot wear them because he is so unstable and his feet are so narrow. Well, he has to wear socks but he is doing alright in them. He certainly loves them, especially because the holes are Mickey Mouse ears. I'm a nervous wreck! Maybe I could write to Croc and have them make a special pair of narrow Crocs that would fit him better!