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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, July 27, 2008

DAY +38

HAPPY BIRTHDAY ANSHON!!!!!!!!!!!! ANSHON IS ERIKA'S FIANCE' AND THE FATHER OF MY TWO GRANDSONS. I HOPE YOU HAVE A GREAT DAY ANSHON!!!!!!!!!!!

SORRY I DID NOT UPDATE YESTERDAY. THEY SWITCHED US TO A DIFFERENT ROOM AND THEY DID NOT BRING ME A COMPUTER UNTIL LATE LAST NIGHT. ALICIA'S NEW ROOM IS NOW 505 IN AN, HER NEW PHONE NUMBER IS 513-636-1505.

ALICIA SEEMS TO BE DOING A LITTLE BETTER. SHE IS STILL ONLY EATING A LITTLE BUT I GUESS A LITTLE IS BETTER THAN NOTHING. DR JORDAN WHICH IS THE DOCTOR ON ROUNDS THIS WEEK TOLD HER "NO TUBE' IF SHE EATS AND TAKES MEDS, SO THAT IS HOW I AM BRIBING HER. SHE CALLS DR JORDAN THE "NICE DOCTOR" SO I THINK IS IS NOT WANTING HER TO STOP THINKING THAT AND HE IS WAITING AND LETTING THE NEXT DOCTOR BE THE "MEAN DOCTOR" AND PUT THE TUBE BACK. I SO HOPE NOT BECAUSE I BELIEVE THAT IS DOCTOR DAVIES.

ALICIA'S BP AND SUGAR LEVEL SEEM TO BE UNDER CONTROL FINALLY. AND HER COUNTS ARE LOOKING GOOD ALSO. NOW IF WE COULD JUST STILL GET THE GVH UNDER CONTROL WE WOULD BE DOING ALOT BETTER. HERE COUNTS TODAY ARE

WBC--6.9
HBG--12.2
PLAT--65
ANC--5.11

WOW HUH?

ALICIA IS GETTING TO BE SUCH A BIG GIRL. I WOULD NOT BE SURPRISED IF SHE DOES NOT HAVE A DEGREE BY THE TIME WE GET OUT OF HERE. SHE HAS BEEN FLUSHING HER OWN CENTRAL LINE AND PUSHING HER MEDS IN HER NG TUBE FOR A WHILE NOW. SHE HAS EVEN STARTED POKING HER OWN FINGER FOR BLOOD DRAWS TO CHECK HER OWN SUGAR LEVEL BUT YESTERDAY TOPPED IT ALL. I WALKED IN AND ALICIA WAS GIVING HERSELF HER OWN INSULIN SHOT. SHE CLEANED THE AREA WITH ALCHOHOL, PINCHED HER SKIN AND INJECTED AND PUSHED HER OWN INSULIN. NOW WHAT FIVE YEAR OLD WILL GIVE THEIR SELFS A SHOT????????

ERIKA WILL BE HERE IN FIVE DAYS!!!!!!!!!!!! I CAN NOT WAIT. ALICIA WAKES UP EVERY MORNING AND COUNTS HOW MANY DAYS TIL MOMMY COMES. SHE THINKS SHE GETS TO GO BYE-BYE WITH HER AND I KEEP TELLING HER THAT SHE HAS TO STAY WITH ME BUT SHE JUST TELLS ME, "NO DOCTOR SAID I GO WITH MOMMY, I HAVE TO" SO I DO NOT KNOW HOW I AM GOING TO OERCOME THAT YET.

WELL ALICIA IS WAKING UP SO OUR DAY IS ABOUT TO BEGIN. PLEASE PRAY WE HAVE A GOOD DAY.

HERE ARE SOME PICTURES I TOOK OF ALICIA JUST "MONKEYING AROUND"



1 comments:

Charisse said...

Hello Michelle,
I am glad that Alicia is doing a bit better. Her counts are great! How encouraging. It will be good when Erika gets there. Poor Alicia. If she is anything like Isaac, when her mumma gets there, she just wants to be with her. It is hard when they realise they cannot be with them from then on. Will be praying.
Love Charisse