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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.



Sunday, August 10, 2008

DAY +52

ONCE AGAIN SORRY FOR NOT UPDATNG YESTERDAY. THIS TIME IT WAS ON PURPOSE THOUGH. YESTERDAY MORNING ALICIA WOKE UP WITH NO FEVER, THAT WAS THE FIRST MORNING WITH NO FEVER IN A WHILE SO I DECIDED NOT TO GET EXCITED. I REALIZED EVERY TIME SHE WOKE WITH NO FEVER AND I GOT ALL WORKED UP AND EXCITED THAN IT WASN'T TO LONG BEFORE SHE SPIKED ONE. SO I TOOK YESTERDAY MINUTE BY MINUTE AND IT WORKED. SHE OFFICIALLY HAS NOT HAD A FEVER FOR 38 HOURS. ( I AM NOT GETTING EXCITED THOUGH :) THIS MORNING SHE WAS EVEN NICE TO ERIN ( HER NURSE ) I WAS PRETENDING TO BE ASLEEP BECAUSE EERYONE TENDS TO THINK ALICIA IS EVEN WORSE WHEN I AM AROUND AND SHE DOES VERY WELL WITH THE NURSES WHEN I AM NOT IN THE ROOM. ( SURELY NOT :) SO FAR SO GOOD THIS MORNING ALSO. WE ARE ON OUR 987,098TH EPISODE OF SPONGE BOB.

SHE HAS STILL BEEN COMPLAINING ALOT THAT HER TUMMY HURTS. I BELIEVE THEY ARE GOING TO DO ANOTHER CT ON HER STOMACH TODAY TO SEE HOW THE FLUID IS THAT THEY SEEN TWO WEEKS AGO WHILE WE WERE IN ICU. I DO HAVE GOOD NEWS. THEY DID A CT ON ALICIA FRIDAY OF HER HEAD AND THE PRESS IS GONE!!!!!!!!!!!!!!!!!!!!!! I WAS SO HAPPY ( AND YES I DID GET EXCITED ABOUT THAT ONE ). I NEEDED SOME GOOD NEWS VERY BAD AND IT CAME JUST AT THE RIGHT TIME. I AM SO THANKFUL THAT SHE DOES NOT HAVE ANY PERMANENT DAMAGE FROM THE PRESS. SHE WILL STILL BE ON THE SEIZURE MEDICINE FOR AT LEAST ANOTHER 6 MONTHS BUT I CAN LIVE WITH THAT.

I HOPE EVERYONE IS HAVING ALOT OF FUN AT CAMP. I MISS BEING THERE SOOOOO BAD. YESTERDAY WHILE ALICIA WAS SLEEPING THAT IS ALL I COULD THINK ABOUT. THE COSTUME DANCE WAS LAST NIGHT AND THAT IS ALWAYS ALICIA'S FAVORITE. RACHEL AND KRISTIN HAD TO BE WORE OUT BY THE TIME THE NIGHT WOULD END. ALICIA WOULD TAKE TURNS HAVING THEM PICK HER UP AND DANCE. ALICIA LOVES TO DANCE AND SHE CAN GET HER LITTLE BUTT MOVING PRETTY GOOD. IT WAS SO CUTE TO SEE HER AND EMMA AND HAYLEE DANCE LAST YEAR. AND THE TALENT SHOW WAS ANOTHER ONE OF ALICIA'S FAVORITES. WE HAD ALREADY STARTED WORKING ON A SONG SHE WAS GOING TO SING THIS YEAR. SHE WAS GOING TO SING "YES JESUS LOVES ME" AND SHE HAD LEARNED TO SIGN THE WHOLE SONG AS SHE WAS SINGING IT. I TRUELY HOPE EVERYONE IS HAVING ALOT OF FUN, AND THANKS TO EVERYONE WHO HAS ASKED ABOUT US ( SMILE TINA ) AND THANKS KAYLA FOR CALLING LAST NIGHT. IT FELT SO GOOD SO HEAR THE KIDS LAUGHTER IN THE BACK GROUND. I CAN NOT WAIT TO SEE ALL THE PICTURES. I KNOW THAT WILL MAKE ALICIA SMILE.

NEXT YEAR WE WILL BE THERE. ALICIA AND EMMA WILL BE RUNNING IN THE HALL AND ALICIA WILL SING HER LITTLE SONG AND I WILL BE SOOOOO HAPPY TO SEE EVERYONE!!!!!!!!!

3 comments:

Anonymous said...

We love you Michelle and Alicia!!!
Krisstina, Keith, Jo, Jacy, and Cameron

Sending more pictures tonight!!

Anonymous said...

Great to hear the good news! Love, Dianne

Anonymous said...

Keep up the no fever!!!!!!!!!!!!!
Continuing to pray!
Isaiah 26:3 Thou wilt keep him in perfect peace, whose mind is stayed on thee: because he trusteth in thee.
Prayer Bears