Alec has been having a difficult time lately. Mouth sores and throat sores are present. His skin is changing colors, very deep, deep tan. They attempted the feeding tube and he vomited it up accompanied with a nose bleed. He has been getting platelets pretty much every other day. His pressure is sky rocketing again 140/100 he is one pressure medicine to control it. Fevers have been in check knock on wood. To date though he has only needed 1 transfusion. He is weak and just wants to go to Disney to train to be a Jedi, soon enough my son, soon enough.
He has not eaten but continues to ask for different foods, like spinach ravioli's from the price club and carrots, which of course he can't have. No fresh fruits or veg tables for a while at least 6 months. He is cheered up by a new favorite movie Spirit, our friends who we met here at the hospital had given Alec a bag of goodies and when he found out it was from his friend Hannah he smiled from ear to ear and couldn't wait to watch his new movie.
I know I have not been keeping up to date as often as I would like to, but I have gotten all your phone calls and prayers thank you so much.
Till next time keep the faith.
Love,
Amy
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