Tuesday was Prestons first day of kindergarten! He was a little nervous at first but by the time I picked him up he was smiling ear to ear and talking non stop about how great his day was! He said he likes his teacher and he made new friends. He told me all about his classroom and his little cubby where he keeps his things. He thought that was really neat. He also told me about 50 times that there is something on the playground that he can't play on until next year because he could fall off and get hurt. Preston shared with me how he got to pick his food at the cafeteria and what he ate. Surprisingly he made healthy choices! Needless to say I am one proud mama! He did great and I am so excited to watch him grow and learn this year. He has a great teacher who loves her job and all her kids. I think this is going to be a great year for him!!!
Preston also is playing T-ball. As far as I can tell (this coming from someone who knows nothing about the sport) he is pretty good. So far he has been hit 2 times with the ball and shook it off both times. He is really learning how to catch now and is hitting like a pro. Throwing is something he has always been good at, comes natural to him. Games start soon and although it is a wicked schedule (all weekday games!) I think he is really going to enjoy it. I am very excited to see how he does!! he really seems to love the game.
As for the other two...I met with the genetics team last week. First time we have met since Phillip was first diagnosed. Although there isn't a lot known about this condition they are learning new things little by little. We did find that kids with this condition seem to all have a history of seizure. There isn't any solid proof yet that this is linked for sure but some really strong evidence this could be the cause of seizures in the boys. They are still working on researching this deletion. His doctor gave me a couple of websites of support groups and told me the best way to learn about this condition is talk to other parents going through the same thing. I couldn't agree more. He also said he believes the boys have some kind of autoimmune disease that we haven't found yet, may never find because technology just isn't there yet. Not that knowing would change anything. He did suggest we get another cystic fibrosis test, but we have done 2 of them, maybe 3? I think he just never could sweat enough for them. But I think they looked for genetic markers for that and didn't find any. So although they couldn't tell me a ton more than we already know I felt good about the meeting. I got some good information and some stories from other parents to read over. All in all it was a good meeting. Phillip is doing well. Upped his feeds again now he is back to the weight he started at again. Payton is doing great. He is loving preschool. Tells me he is so excited to go! I love it. He is really settling into his own.
So thats it for us. I hope everyone is doing well and thanks for stopping by!!! Please remember to keep my friend Kelli in your prayers (mylifegodswill.blogspot.com)!
Have a good one!
