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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, July 3, 2008

DAY +14



YESTERDAY ALICIA HAD AN AWESOME DAY!!!!!!! SHE STAYED AWAKE ALMOST ALL OF THE DAY. AS YOU CAN SEE BY THE PICTURES SHE EVEN GOT OUT OF BED!!!!! SHE PUSHED THE HUGE IV STAND ALL BY HER LITTLE BITTY SELF AROUND THE BED AND BACK AGAIN!!!!! I ALMOST CRIED. I WAS SO PROUD OF HER. THIS IS ONE STEP CLOSER TO RECOVERY. OUR GOAL IS TO GET HER UP EVERY DAY AS LONG AS SHE IS WELL ENOUGH. IT DID TAKE ALOT OUT OF HER, IT WASN'T LONG AFTER THAT SHE FINALLY WENT TO SLEEP. SHE EVEN ATE A HALF OF A PIECE OF PIZZA AND TOOK THREE DRINKS OF CHOCOLATE MILK. THEY SAID IF SHE KEEPS GOING FORWARD IN THIS SPEED AND SHE HAS COUNTS THAT WE COULD BE OUT AND AT THE RMH BY TWO TO THREE WEEKS. I SURE HOPE SO.
THIS MORNING STARTED VERY EARLY. THE NURSE CAME IN AND NEEDED TO DO A FINGER POKE TO GET BLOOD. ALICIA'S GLUCOSE LEVEL WAS THREE TIMES OVER THE LIMIT. THEY DREW IT EVERY HOUR AFTER LOWERING HER TPN AND IT SEEMED TO BE GOING DAON A LITTLE. TONIGHT THEY ARE GOING TO TRY TO KEEP HER OFF THE TPN AND UP HER FEED LEVEL SO HOPEFULLY THAT WILL WORK.
I HAVE COMPANY ALL DAY. CAMERON IS HERE STAYING WITH US WHILE TINA IS WITH JO. SHE IS HAVING SURGERY TODAY SO PLEASE KEEP HER IN YOUR PARYERS.
ALSO PRAY ALICIA HAS ANOTHER DAY JUST LIKE YESTERDAY!!!

7 comments:

Anonymous said...

Your love for Alicia must bring her great comfort. My best wishes to you both.

Anonymous said...

It is great to see Alicia up and about!! Love, Dianne, John and Michelle

Teresa said...

That's incredible she is doing so well! To think how quickly she can go from being completely wiped out to feeling a little bit better. That's awesome! It's great to see her up and about. She's such a doll. Give her a hug for us!! Lots of love and prayers your way...

Anonymous said...

Thrilled that she's doing better today!
Call upon the Lord in every trouble! Know that I'm praying!
Psalms 9:9-10 The LORD also will be a refuge for the oppressed, a refuge in times of trouble. And they that know thy name will put their trust in thee: for thou, LORD, hast not forsaken them that seek thee.

Anonymous said...

What wonderful news!!! She is doing so well! I am so proud of her and of you! Alicia is so lucky to have you Michelle! You are Awesome!!!

We will be there soon. Not sure when, but within a couple of weeks. I am SURE will come visit! I need one of those special hugs from Miss Alicia!

(((HUGS))) to you Michelle! Hang in there....

Charisse said...

Michelle, you are so sweet. I love how you love your "best friend" so much that you will do anything for her. That is such a wonderful dedication in a family. There are not many grandparents who will give up everything for a grandchild....not these days....there are and then there aren't. It is great to see pictures of Alicia up and about! I pray and hope it is only about 3 weeks til she can go to RMH!
LOve Charisse

Anonymous said...

Alicia,
Hooray on the ANC! Wonderful counts. Glad you enjoyed the walk. Be good for Mee-ma.
Hugs,
the Fiaschetti FAmily
Mary Ann, David, Joey & Peter