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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.



Sunday, June 22, 2008

Day +3

Alicia had another good day yesterday!!!! She has still been her little wild self. The only bumps yesterday was with diareha (very bad) I bet I changed 20 diapers yesterday. It brought back memories of when she was younger. She still has the pooping problems this morning, I changed one a few minutes ago that was the worst!!!! Ok enough about poop. She didn't have problems with her BP or vomitting yesterday, although I thought while we were talking to Lori and Sarah on the phone yesterday that she was about to but it was a false alarm. (sorry Lori)

She feels well this morning also, She even felt like standing in the shower so she could have a sponge bath and she even let me brush her hair. ( I cried while I was brushing it cause thoughts came to my mind that this would most deffinatly be the last time I would brush her hair for a long time.) I told myself that I was not going to brush it because she doesn't like it when it hurts to brush her hair, and it was going to fall out so why put her through the pain, but this morning she asked me to brush it so i did. (very gently).

A nurse just walked in our room to stop one of Alicia's machines from beeping and she was a VERY LITTLE nurse and Alicia started looking at her wierd and I thought OMG "please don't say anything" but of course she did.LOL
she said "Hey your little" I had to laugh!!!! I told her "Alicia your little also" and Alicia just started giggling.

There wasn't much change in Alicia's counts this morning. Her WBC is .7 her ANC is still 0.0 her HBG is 10.4 and platelets 177,000 (she did get a platelet transfusion yesterday, they were back down to 12,000).

They are also going to reduce her morphine but not remove it completly. The Doctors said that the worse days are almost here so they do not want to get ehind in her pain manaement but they do not want her to get to much if not neded also. I hope she does not start having alot of pain when they reduce it.

Yesterday I actually ot some rest. I went to the RMH and took a nap for four hours with out being woke up in between. It felt wonderful!!! (Thanks Denise)

Alicia's breakfast just arrived so she needs me, she asked for spegghetti this morning but I finally got her to agree on pancakes and eggs and she said ok if she could have ketchup on her eggs. (what ever it takes)

Mee-Ma

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