Tom sent Trevor to the store for a game like they played at the hospital. Trevor and Riley are upstairs shrieking with glee over the games. Tom is watching TV while playing on line free poker. Everything seems so normal. ZI am getting into this blog thing. Its still novel. I should be cleaning the house, but everyone knows how I avoid that job. It still looks pretty good anyway from Superbowl Sunday.
I took the paint off the banister rail the other night. It was a nice small project. I think I had coffe that day and needed to burn it off.
I started the medifast diet a few weeks ago. Since I eat with stress I am glad I have it. those small packets that you just add water transport easily and the fact I can snack all day is great. Every time someone comes to talk to us I break off a chunck from my snack bar. It also keeps us away from running up costly hospital lunches. Riley eats for free but I can't recommend the food. Neither did he after he tried it. So I shared my protein bar with him and he liked it, better than the hospital food.
He looks amazingly better after the transfusion Wednesday. He was literally bleeding out of his zits and his lips were turning blood blisters out by the hour prior to the platelets. He didn't need one today with his platelet count up, but the white cell count is still falling and there is no good treatment for that. Remember bubble boy? That is what Riley is becoming.
Time is not on our side.
I was going to ask a bunch of technical questions, but realized that I really just want to say I love you guys and am sending you good thoughts. Anything I can do?
ReplyDeleteHi Stephanie,
ReplyDeleteWe are also sending you lots of love and good thoughts from Brooklyn. I am sure this is very difficult and we can't imagine what you are going through, but we know that you are very strong and a wonderful mom.
Love,
Suzi, Dave, Emma and Sebastian