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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, January 10, 2009

Day +205

Alicia is feeling a lot better today. The only problem she had today is with her Potassium. It has been very low. Normal range is between 3.3 to 4.6 and Alicia's was down to 2.1. After 4 IV bolus's and two oral yesterday and 2 IV and one oral today they finally got her count up to 3.5. I just hope it stays that way. I asked them what effects could come from it being low and they told me problems with her heart. She has not had a fever since Friday morning and so far all of her cultures have been negative. The docs told me it could take up to two weeks for any growth so I am still holding my breath. Her Wbc was down today to 14.7, this is still slightly high but far better from 38 Thursday night. This tells me that the antibiotics are working and what ever bacteria or infection she has is under control.


Her attitude is a lot better also. All off the nurse's can not believe how nice she is being. If you remember when she was inpatient for so long after transplant she was so mean to them and give them really bad looks so they are all stopping by her room and soaking up the kindness while it lasts. She did have one episode earlier though. I had went across the street to get some clothes and Bubba, her doll, and when I was walking back in her Nurse was waving at me to hurry. When I got in her room Alicia had her shoes and mask on once again and was pushing her pole out the door. I could hear her saying "I can not see mee-ma, I go find my mee-ma" The nurse said she was not taking No for an answer. The mistake I made was leaving her while she was asleep. I guess now I will have to wake her up and let her know I will be right back LOL.


You will not believe the comments I get on her baby Bubba. Everyone says he looks so real. One lady even stopped me while Alicia was pushing him in her stroller to tell me he was about to fall out. When she realized he was not real she just laughed. On the way up in the elevator a man did a double take and said "O my I thought that was a real baby. I was even holding him by his leg LOL. I had a friend with me and we decided it would be soooo funny if next time I would act like I was breast feeding him so I am going to try it LOL. Here are some pics I took earlier today.

This is of Theo and Bubba.... Yes Theo is here also..........................


And this is Alicia and Bubba..........................................................


I know I say this in every post but I want to thank everyone sooooo much for your support and prayers. I never imagined this journey would be so long and hard and it is all of you that gives me the strength to keep pushing!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

4 comments:

Anonymous said...

You are ALL in my prayers. Love, Dianne

Anonymous said...

So glad things are better today!
Doesn't matter where you pray...just pray in true faith! Praying so for your family right now!
Jonah 2:1-2 Then Jonah prayed unto the LORD his God out of the fish's belly, And said, I cried by reason of mine affliction unto the LORD, and he heard me; out of the belly of hell cried I, and thou heardest my voice.
Prayer Bears
My email address

Charisse said...

Bubba is gorgeous! When I was little I had a new born baby doll and everyone thought that was real as well. Isaac loves to baby it even though he is a boy. He has such paternal instincts!
Love ya,
Charisse

Anonymous said...

Bubba is adorable and so is Alicia. Does Bubba get along and play with Alicia's other babies???? Wishing you the BEST!