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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.



Friday, October 24, 2008

Day +127 ( I think)


Well it is a very rainy and cold day here in Cincinnati. We were very lucky to get everything done and all of her infusions in Day Hospital yesterday so we did not have to go over today. We have had a nice day in the room just hanging out and playing. Alicia has taken my blood pressure ten times today and my temp about twenty times. She always wants to play doctor ( i wonder why) Now she is hooking her baby up to the line her fluids are on after I unhook her from it. I am so glad she has not tried to give me a Central line. She asks about Theo all the time now since she has not got to see him since she got out of the hospital. Now she has a doll named Katie that she gives meds to all of the time. Here is a picture of poor Katie............
Those are band aides all over her legs, and she has a central line Alicia gave her but you can not see it very well in the picture but you can see the lines hooked up to it. Katie was a gift from Reid and Abby, If Abby could only see Katie now LOL!!!!!!!!!!!!!!!!!!
By the way Alicia dressed herself today. As I am writing I can hear Alicia walking in here pushing here pole. She has learned how to move that thing anywhere she wants it to go. I am surprised she has not tried to unhook herself!!!!!!!!!!!!!!!!!!
I wanted to Thank a very special friend for making Alicia soooo happy the other day. Her name is Tricia, she is the lady that Reid and Abby are staying with. She bought Alicia all kinds of things and Alicia loves it. She got her a Dora doll and clothes and all kinds of accessories, and the cutest Dora outfit and coat and skirts and shirts and a rolling suitcase to carry it all in. Tricia opened her house to Abby to stay after her Transplant without even knowing them. She is honestly an Angel from God I believe. Thank you so much Tricia.
i also want to thank my SPECIAL friend Dianne for the many many many gifts and cards you have sent my whole Family, I am soooo lucky to have you as a friend. And thanks to Keith for the coolest phones you brought Alicia, she loves them and it seems like every morning around 5am one of them starts beeping. I have not figured out how to shut them up yet. I also want to thank EVERYONE for all of the support and prayers. I know there are many people who follow Alicia's progress and I do not know it. I want everyone to know that i appreciate everything. And Thanks to Roni, who I used to work for (and Erika does still) she had sent a baby doll with Erika the last time she came and Alicia loves it also. It is a little black baby doll and Alicia named it Chocolate LOL.
I will update more the beginning of the week after I have a chance to talk with Dr Davies. This weekend Alicia and I plan to just relax and play!!!!!!!!!!!!!!!!!!!!!!!!!!!

5 comments:

Anonymous said...

Thanks for the update. I am convinced that Alicia will become a nurse when she grows up! She is such a sharp cookie. Glad to hear you had a good day. Love, Dianne

Anonymous said...

First time on your blog - great post. Your daughter is shaping up to be a terrificnurse!

Anonymous said...

Well I'm sure Alicia feels better when she can have control over something...even something like giving her doll medicine.
Words of comfort for this weekend. Praying!
Proverbs 3:5-6 Trust in the LORD with all thine heart; and lean not unto thine own understanding. In all thy ways acknowledge him, and he shall direct thy paths.
Prayer Bears

Charisse said...

Ha! The dolly is covered in tubes! Alicia sure seems medically minded! I am glad that things are going well and I look foward to the update after you have spoken with Dr Davies. I am praying that it will be a good update :-)
Love Charisse

Anonymous said...

It's so great to see Alicia's progress and to hear the good news. Am hoping and praying that Dr. Davis' update is positive and that all will be well. Wishing you both the best always.
Mary Ann