IT IS SO HARD TO BELIEVE WE ARE OVER HALF WAY TO THE "MAGIC NUMBER" EVERYONE HAS ALWAYS TALKED ABOUT WHEN COMING TO TRANSPLANT. I HAVE HEARD ALOT OF PEOPLE ALWAYS TALK ABOUT THE 100 DAYS. BUT THAT IS NOT REALITY TO ME NOW. I DO NOT THINK THAT WE WILL BE GOING ANY WHERE NEAR KANSAS AT OUR 100 DAYS, BUT I AM OK WITH THAT . MY GOAL AT THIS POINT IS GETTING ALICIA WELL ENOUGH TO EVEN LEAVE THE HOSPITAL AND I DO NOT EVEN SEE THAT HAPPENING FOR AT LEAST A COUPLE OF MORE WEEKS AS LONG AS SHE KEEPS DOING WELL.
NO FEVERS AGAIN YESTERDAY OR THIS MORNING!!!!!!!!!!!!!!!!! SHE EVEN ATE A LITTLE YESTERDAY WHICH MADE ME SOOOOOO HAPPY. I BATHED HER THIS MORNING WHICH RELAXED HER AND SHE IS SLEEPING AGAIN. I AM VERY HAPPY WITH THE LITTLE PROGRESS I AM SEEING IN HER. I WANT TO TAKE IT SLOW AND NOT RUSH IT.
I WOULD LIKE A GOAL THOUGH. SOMETHING TO WOR TOWARDS IN ORDER FOR US TO BE ABLE TO GET OUT. I BY NO MEANS AM READY NOW, BUT IF I JUST KNEW WHAT IS NECESSARY THAN IT WOULD HAVE SOMETHING FOR ME TO WORK TOWARDS.
THEY HAVE NOT DID ROUNDS YET THIS MORNING BUT HER LPN CAME THIS MORNING AND THEY ARE TALKING OF STARTING SOME TUBE FEEDS TO SEE IF SHE CAN TOLERATE THEM, I AM KINDA HAVING CONFLICTING THOUGHTS ABOUT THAT BECAUSE SHE IS STILL HAVING ALOT OF TUMMY PAINS BUT I AM NOT TOTALLY AGIANST TRYING TO SEE IF IT MIGHT HELP. WE WILL JUST HAVE TO SEE WHAT THE DOC SAYS.
HOPEFULLY IF SHE FEELS WELL THIS AFTERNOON OR TOMORROW WE WILL BE ABLE TO HAVE OUR LONG AWAITED PRINCESS PARTY. I HAVE THE DRESS AND WHOLE OUTFIT THAT MY MOM'S CO-WORKERS SENT HER HANGING WHERE SHE CAN SEE THEM AND WE TALK ABOUT OUR BALL EVERY DAY. SO HOPEFULLY IT WILL COME TRUE SOON.
YESTERDAY ALICIA HAD COERED HER BED IN STICKERS THAT BONNIE AND ALL THE CHILDREN HAD SENT HER IN THE BOX LAST WEEK. SHE DID THIS WHEN I HAD LEFT THE ROOM AND WENT TO THE PARENT LOUNGE. WHEN I WALKED IN SHE JUST GIGGLED AND ALL I COULD DO WAS SHAKE MY HEAD. I TOOK A PICTURE BUT RETARD ME FORGOT THE MEMORY CARD AGAIN SO YOU JUST HAVE TO IMAGINE ABOUT 100 STICKERS ALL OVER HER BED.
THANKS AGIN EVERYONE FOR CHECKING ON ALICIA. I COULD NOT DO THIS WITHOUT EACH AND EVERYONE OF YOU.
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.
Monday, August 11, 2008
DAY +53
Posted by Michelle at 9:30 AM
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6 comments:
I hope you are able to have the Princess party today. Sending lots of love and prayers. Dianne
Hi Ladies,
We are here at Camp Sunshine missing your smiling faces! We are so glad to here that things are progressing okay. We all miss you and can't wait to see you next August at Camp. Keep healing and growing stronger.
Sending love from the Salo family
Greetings from Camp Sunshine! We miss you but know tht you will be with us next summer!
Glad to hear that Alicia's feeling better.
Love, Mary Ann
Hello Michelle and Alicia,
that is great about no fevers still! I am praying you get your ball soon! I am sorry I didn't get around to signing the last post!
Will be praying for Alicia at prayer meeting this week again.
Love Charisse
Hope you can have the princess party soon!!!!!!!!!
Still here praying!
Psalms 40:11 Withhold not thou thy tender mercies from me, O LORD: let thy lovingkindness and thy truth continually preserve me.
Prayer Bears
Comforting words...know that I'm praying!
John 14:1-3 Let not your heart be troubled: ye believe in God, believe also in me. In my Father's house are many mansions: if it were not so, I would have told you. I go to prepare a place for you. And if I go and prepare a place for you, I will come again, and receive you unto myself; that where I am, there ye may be also.
Prayer Bears
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