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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.



Thursday, November 13, 2008

Day +147

I fell in love with this picture so I thought I would share it with everyone. First off NO she does not wear dresses this time of year but Reid bought it for Alicia and the day she got it I could not get Alicia to take it off, she even slept in it. She LOVES it.

We got some results back today in Day Hospital. actually that is where we are right now. Alicia is asleep and has been alot of the morning but I guess she has a good reason to be tired. Her HBG came back this morning at 6.7 so we are waiting for her to receive red blood.

Her stool sample also came back and it showed white cells in it. They are not sure as to why yet so they started her on another med that will cover any virus but it also will make her not want to eat ( go figure ) Alicia has not ate well in almost two weeks. Her x-ray also show that she had alot of stool (poop) caked up inside of her which could be from not drinking much an the extra calcium they are giving her. They decided against giving her the rest of the infusion that caused the reaction last time and they said when will get it the first of next week.

We did get some good news this morning!!!!!!!!!!!!!!!!! Alicia's Platelets went up!!!!!!!!!!!!!!!!! From 27,000 to 49,000 I am sooooo happy. This is the first time besides a couple of weeks ago since she got the transfusion on Sunday. This is a very good sign!!!!!!!!!!!!!!!!!!!!!!!!!!

I want to thank everyone who has been sending Alicia cards for her Birthday. Sam ( our friend with fa and who went through transplant with Alicia) sent her the cutest card!!! it sang "celebration and Alicia started shaking her booty the moment she opened it. I laughed so hard.

We are still planning on celebrating Alicia's birthday on Sunday. Erika and I are going out Saturday to find that special present from Mommy while Alicia and Daddy stay at the room and get some much needed "them" time. Of course I am keeping the boys as close to me as possible this weekend. I am soooo excited. I just want to squeeze them and I only have 1 day left!!!!!!!

If I do not update this weekend I am very sorry but I want to spend as much time with my grandsons as possible. Have a good weekend I now I will.

5 comments:

Anonymous said...

I LOVE the photo of ALicia in the dress. She looks lovely. Can't wait for you guys to have the special b-day celebration this weekend. Great news regarding the platelets. Thinking of you.

Dianne

jennifer said...

hey there mama...I found you!!! That picture of alicia is sooo cute. I am glad that you get to spend the weekend with your family. It is so funny because every time I see you I want to burst into song...me-mawwww....LOL!!! I will talk to you later.
Jennifer

Charisse said...

What a sweet picture of Alicia in her dress. Now she just needs to be sitting on a picnic blanket with beautiful green, grass all around her. Lovely!
Platelets are GREAT!
Love Charisse

Anonymous said...

Hope Alicia's having an amazing birthday!!!!!!!!
May the Lord give you His peace and strength to face whatever lies ahead. Praying!
Isaiah 26:3-4 Thou wilt keep him in perfect peace, whose mind is stayed on thee: because he trusteth in thee. Trust ye in the LORD for ever: for in the LORD JEHOVAH is everlasting strength.
Prayer Bears

Anonymous said...

I love that photo too, she looks like a model! Happy Birthday Sweetie! Hope it is wonderful...just like you! I'm late getting your package out but look for it!!!!!!

Blessings and Bear Hugs