Some pictures of Lilys past week. We had Uncle Chris visit, some family cookouts with cousins, a little splash pad fun, & she was finally cleared to have smores, so her 1st one in over a year. Now she is going to get a surprise visit today from one of the girls from Bethel Colleges volleyball team. Lily is a part of a pretty awesome program called Team Impact. A college athletic team sort of adopts a child with a chronic illness and literally drafts them on to the team. Lily had to sign a letter of intent and all! She was drafted spring of 2013. Because of her immune system she hasnt seen any of them since last September. Today one of the girls that actually graduated last year is coming to play! Lily has no clue shes on her way! Yesterday I had a meeting with the principal of Lilys school. The one that she will be hopefully going back to this school year. Here we dont have just an elementary, we have 4 lower elementary schools (k-2) then 1 upper elementary (3-5). Since Lily is going into 3rd grade she will be at a new school. Last year after we got back from Cincinnati Lilys schooling was changed. She went from only online schooling to part online, some in home tutoring, & being a part of her class at Congress Elementary. She skyped them and did class writing projects with them from home then sent them to the school to go in the classroom with the other kids papers. This is a little untraditional. Not something that they normally do, but considering the amazing & supportive district we are from they did this for Lily. No surprise, this ended up being the best thing for her as far as learning, because of that, this is what I have requested to be done again this year until she can return. So far it sounds like there wont be a problem with this. She has already been placed in a class at the school and the principal is going to get the ball rolling for everything else. It is times like these that I am beyond thankful for the community we live in. They have been nothing short of wonderful and everyone goes above & beyond for Lily and whats best for her. We have made the appointment to get her back on her ADHD meds so that she can put all of what she needs into schooling this year before she returns to the classroom. As of right now she only has a max of an hour in her before she doesnt have an ounce of focus & concentration left in her. I havent had her on the meds since we found out about her having to go thru transplant because it wasnt needed especially with everything else they were pumping into her, but now its time to get them regulated again so she can catch up in school. We did find out that she is free and clear of any bmt appointments until the middle of October when we go to Cincinnati for her 1 year check up!!!!! She will just have to have labs done locally inbetween now and then, but thats 2 1/2 months with no appointments other than pediatrician and a prosthetics! Wow!
Posted on: Fri, 08 Aug 2014 15:37:50 +0000
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