Day +12
Compared to yesterday, today was pretty calm for Max. He was pretty tired and a bit crabby. He has had a red rash on his face for the past few days and it is getting worse. It is now on his arms, back and tummy. His face is as red as a tomato. They are not sure what the cause is. It can be a medication, a combination of medications, or Graft vs. Host. Today they changed one of his blood pressure medications to see if that helps. They have also started him on 2 different creams in case it is GVH. He is losing his eyebrows and I think his beautiful long eyelashes too. It makes him look a bit sicker. His WBC was up to .7 today (up from .3 yesterday) which was good. They need to see consistent growth before anyone gets excited.
Grace and I had quite a day today. We have been worried about her lately. Most of the kids around here are older than her. It has been an adjustment. Sometimes they do things that she is too young to do or shouldn't do, and it has been hard explaining this to her. Also, older kids don't always want to play with someone so much younger, and it absolutely breaks our hearts when she asks if she can play and they are not interested in playing with her. Most of the time they are willing to let her join in, but sometimes Mike and I have to ask on behalf of Grace. She has been picking up on the intense stress around here and has been crying a lot.
Today was much better, and Grace attended the last session of "Camp Wanna Read A Book", a summer book club at RMH run by a retired teacher and her husband. They went all out, pitching a tent and cooking lunch outside on propane stoves. We also made paper snakes and cookie sandwiches.
After a late nap Grace and I attended a Luau at RMH. It was a huge event, much bigger than I had anticipated. In addition to a big meal and extensive decorations, they had live music, dancing, caricature artists, and fun outfits for the kids. Grace had on a grass skirt, lei, flamingo hat, flower tattoo and blow up guitar. She, of course, stood right in front of the musicians and danced along to the music.
After all of that we went to the hospital to see Mike and Max. We stopped in Kendall's room to drop off a lei for her. Grace got to go inside and see her friend for the first time in almost a month. It turns out Kendall's cheeks look just like Max's and they are using the same creams.
As I watched the luau, I got choked up several times. The staff and volunteers at RMH have devoted themselves to making life better for families in unthinkable situations. The children and families at RMH have amazing will and spirit. Max is no exception. Despite the harshness of a BMT, Max has continued to make developmental progress. He is consistently pushing himself to sit from laying down. He has learned what the words hug, kiss, nose and "where's your movie" mean. His fine motor skills are coming along. We are so proud of both our children.
-Margaret
Grace and I had quite a day today. We have been worried about her lately. Most of the kids around here are older than her. It has been an adjustment. Sometimes they do things that she is too young to do or shouldn't do, and it has been hard explaining this to her. Also, older kids don't always want to play with someone so much younger, and it absolutely breaks our hearts when she asks if she can play and they are not interested in playing with her. Most of the time they are willing to let her join in, but sometimes Mike and I have to ask on behalf of Grace. She has been picking up on the intense stress around here and has been crying a lot.
Today was much better, and Grace attended the last session of "Camp Wanna Read A Book", a summer book club at RMH run by a retired teacher and her husband. They went all out, pitching a tent and cooking lunch outside on propane stoves. We also made paper snakes and cookie sandwiches.
After a late nap Grace and I attended a Luau at RMH. It was a huge event, much bigger than I had anticipated. In addition to a big meal and extensive decorations, they had live music, dancing, caricature artists, and fun outfits for the kids. Grace had on a grass skirt, lei, flamingo hat, flower tattoo and blow up guitar. She, of course, stood right in front of the musicians and danced along to the music.
After all of that we went to the hospital to see Mike and Max. We stopped in Kendall's room to drop off a lei for her. Grace got to go inside and see her friend for the first time in almost a month. It turns out Kendall's cheeks look just like Max's and they are using the same creams.
As I watched the luau, I got choked up several times. The staff and volunteers at RMH have devoted themselves to making life better for families in unthinkable situations. The children and families at RMH have amazing will and spirit. Max is no exception. Despite the harshness of a BMT, Max has continued to make developmental progress. He is consistently pushing himself to sit from laying down. He has learned what the words hug, kiss, nose and "where's your movie" mean. His fine motor skills are coming along. We are so proud of both our children.
-Margaret
posted by Mike Ciacciarelli
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