Her teacher sent a letter home yesterday that she is teaching the kids a new finger-play song about penguins and at the end of the song she gives all of the children a goldfish (must go along with the theme). She asked for me to send in some sort of special gluten free snack Lily could have after the song and I thought it was really cool that everyone seems to be slowly adjusting to this new lifestyle.
I have been diving hard in to the Turner's world lately. I have been joining groups, looking to talk to teenagers and older women with Turner, and basically just try to educate myself as much as I possibly can. In reality, the only advocate a child has are their parents, so in order to get her the best possible care with the best possible outcome, I have to educate myself as much as I can. There is a great foundation (www.turnersyndrome.org) that is the Turner Syndrome Society of the United States. They hold a national conference every year, and I think I am going to go. I have enlisted my Mom and my mother in law to go with me. This year it is in Buffalo, NY and it is a 2 day conference. I hope to go and meet some women with TS that can tell me more about their story and some things they wish that they knew to do when they were younger.
I also found a section of the website called "research." I found this really cool study in Stanford University. They are looking to do a neurological study on girls aged 3-12. They want to learn more about learning, behavior, genetics and brain development of girls with TS. I emailed them to find out some more about the study and it would involve flying out to California (all travel and lodging expenses paid) where they would spend 2 days with Lily. On day 1 there would be an IQ test, behavioral studies and about her learning habits. Day 2 would be Lily having an MRI where they would play different types of games with her and watch how her brain reacts. I think it would be so cool! It is the first study of its kind done and we would continue to get updates on the study and different things they are finding out. We would return a year later for a repeat study. I have to send them Lily's genetic testing that diagnosed her with TS and we should hopefully know if she is accepted for the study in the next couple of weeks. If you would like to see about the study, here is the link: http://cibsr.stanford.edu/participating/participating_turner.htm
shannon, you are amazing! you are a wonderful mother! You and Jimmy are so blessed to have such a wonderful girl like lil. she is truely magnetic. she draws you in and no one can help but love her. She will grow up to be a woman who can accomplish anything. I remember when i first got to know you guys the first thing I noticed is how everyone that knows her gravitates to her. she is completely magnetic, that is the word that reminds me of her. I love you guys, Ilove her and would do anything for all of you!
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