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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.



Tuesday, June 24, 2008

Day +5

Yesterday was not as well as the past few days, we had a few bumps, but we got past them.

Our day started off with Alicia pulling off her dreesing to her C-Line and they had to do a re-dressing which she does not like at all. Usually it only has to be done once a week on Friday, but she pulled it off yesterday so it had to be replaced.

She had a pretty good day after that with just some diareha and upset stomach ( no vomitting). Then about 8pm she had her NG tube put in. She did not like that at all (but who would). It was the worst thing I have seen so far. They wrapped my baby up in a blanket and held her head and inserted a tube down her nose, it was horrible, she screamed and gagged yelled my name. I did not let her see me cry but when I left the room I bawled like a baby. I pulled myself together and went back in and told her how pretty she looked. After the tube she went to sleep and did not want anyone to touch her but me. I stayed til she was all the way asleep, then went to the RMH for some much needed rest since Denise was leaving today. (Denise left at 8 this morning)

Today Alicia is still not acting like herself. She is still sleeping only waking up long enough to make sure I am still here and going back to sleep. (I wish this was me going through this not her)

Her CBC is the same as yesterday. Still 0.0 ANC and .2 WBC. Her Platelets are still holding at 99,000 from the transfusion on Saturday and HBG is 10.2.

I want to check on Jacy before Alicia wakes up so I will update tomorrow.

Mee-Ma

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