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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.



Wednesday, February 18, 2009

Day +244


Another long night. Alicia's HBG and HCT were both low with the CBC taken yesterday so preparing for the mediport being put in today they started transfusing her blood around one am. That of course means BP checks every 15 minutes for the first hour and every thirty the following hour than an hour after that. Alicia also got another IV ( this makes her twelfth since ICU) and of course this one gave her problems also. Her machines beeped all night so needless to say we are very tired. I am so glad we will be discharged tomorrow!!!!!!!!!!!!!!!!!!!!!!!
Megan with Child life came in yesterday with Freddy which is Theo's cousin. He has a mediport and wanted to show Alicia how cool it looked. (how cute) Alicia looked at him kinda crazy in the beginning ( he is orange) but she warmed up to him quick. Poor Theo was pushed to the side and she wanted to keep Freddy. That didn't happen though but now she is excited about getting a new line today (Thank you Meagan and Child Life, you all are so wonderful) This is a picture of Alicia and Freddy......................................................
And this is of poor Theo and Bubba ( I heard Theo was going to have to retire after Alicia)
Alicia's procedure is set to happen at 1pm but I also heard that once the labs come back and they her HBG and HCT are high enough than we are heading down early. I will let everyone know how she does.
I almost forgot, lil Anson called me yesterday and he was talking so well. He kept saying HI. He will be 2 on the 15th of March I can not wait to see him and I am so glad I will be home for his Birthday!!!!!!!!!!!!!!!!!

1 comments:

Charisse said...

Wow, the orange doll is huge! Ha! I have forgotten its name...hehe. No wonder Alicia looked at him strange. Hehe. I am glad she is excited about having her new line now :-)
How exciting to be going home!
Love Charisse