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ALICIA'S JOURNEY WITH FA

Welcome to our blog where we try to keep family & friends updated on our daughter/granddaughter, Alicia, who is one of the most adorable five year olds ever! She was born with a very rare & aggressive disease, called Fanconi anemia, which causes bone marrow failure, as well as different cancers . She is currently undergoing a bone marrow transplant to try to cure her bone marrow issues. If you'd like to gain a little more background, please visit our first entry HERE.



Saturday, November 8, 2008

Day +142

Everything is still going well with Alicia, although we are driving each other crazy spending so much time just the two of us in this room at the RMH. Alicia still thinks that she has control of the TV and lights here like she did when she was in the hospital. Usually after about 15 minutes of arguing she wins and I just go get on the computer. The computer is the one thing she could never tell me that was hers... LOL.
We have another very bust week next week at the hospital. We have to be there every day but Thursday but I am sure they will find a reason for us to be there that day also. The Home Health Nurse is coming out Monday instead of Tuesday to do her IVIG. Hopefully Friday will be a short day since Mommy and Daddy will be here.
Yes I am still on the count down.............. 6 MORE DAYS!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! I just want to hug my grandsons sooooooooo bad. They are going to be tired of me before they leave!!!
Alicia started getting Birthday Cards Today THANK YOU SO MUCH!!!!!!!!!!!!!!!!!!!!! She three today, one was from Karen from Denver, Carol ( Dianne , John and Michelle's friend) and the Flemings. Thank you guys soooo much. Alicia was soooo happy when she looked in our box and seen she had mail. This is prove of the Joy she felt, look at the smile on her face.....
Tomorrow starts her Birthday week. She is soooo excited, she keeps telling me "almost my Birthday"
I do not think the "real Sponge Bob' idea is going to pull through so we are just going to have a small party for her.
Thank you to everyone in advance who is planning on sending her a card to make this a "Special Birthday!!!!"
P.S
Happy 17th Birthday Jacy!!!!!!!!!!!!!!!!!


1 comments:

Anonymous said...

Looking cute as always!
We have the same Angel, preparing our way Home. Praying!!!!!!!!!!
Exodus 23:20 Behold, I send an Angel before thee, to keep thee in the way, and to bring thee into the place which I have prepared.
Prayer Bears