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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.



Saturday, July 5, 2008

DAY +16

YESTERDAY WAS A GOOD DAY, WE HAD A FEW BUMPS BUT OVERALL IT WAS A PRETTY GOOD DAY.

THE SORES IN ALICIA'S MOUTH ARE STARTING TO HEAL, WHICH IS CAUSING ALICIA TO BITE ON THE SCABS ON THE INSIDE OF HER MOUTH. SHE IS BITING SO MUCH THEY ARE BLEEDING, I HAVE TRIED EVERYTHING TO KEEP HER FROM DOING IT BUT NOTHING IS WORKING. I DO NOT KNOW WHAT TO TRY NEXT. IT HELPS A LITTLE TO HAVE HER SUCK ON ICE BUT THAT ONLY LASTS SO LONG. THI PICTURE IS OF HER BITING ON HER MOUTH.......



















EVERYONE IS PROBABLY WONDERING WHAT IS THE DEAL WITH THE GLOVES. WELL THAT WAS OUR FIRST BUMP YESTERDAY. ALICIA'S POOR LITTLE FINGERS ARE SO SORE FROM BEING POKED FOR BLOOD TO GET HER SUGAR LEVEL THAT SHE STARTED PEELING THE SKIN ON HER FINGER TIPS, SO THIS WAS MY WAY TO PREVENT THAT WHICH HAS WORKED VERY WELL. NOW IF I COULD ONLY COME UOP WITH A PLAN FOR HER MOUTH UNTIL THEY BOTH HEAL.

OUR LAST LITTLE STUMBLE WAS ABOTU TEN THIRTY LAST NIGHT. ALICIA SWOLL UP LIKE A BALLOON. SHE WAS SO SWOLLEN HER DIAPER WOULD NOT EVEN FIT. I GUESS SHE WAS TAKING IN TO MUCH FLUID AND NOT PEEING FAST ENOUGH SO THEY GAVE HER SOME MEDICINE CALLED LASIKS THAT MADE HER PEE ALOT SO NEEDLESS TO SAY I DID NOT GET MUCH SLEEP LAST NIGHT BETWEEN VITALS. FINGER POKES FOR BLOOD SUGAR LEVELS, INSULIN SHOTS AND CHANGING DIAPERS EVERY THIRTY MINUTES.

ALICIA LOVED THE FIREWORKS LAST NIGHT. SHE COULD SEE THEM OUT HER WINDOW IF SHE STOOD UP IN HER BED, WE ALSO WATCHED THE MACY FIREWORKS SHOW ON TV SO SHE KEPT LOOKING BETWEEEN THE BOTH. I SAT IN BED WITH HER (SO SHE WOULD NOT FALL WHEN SHE STOOD TO SEE THE ONES OUTSIDE) WE HAD A REALLY GOOD TIME. I DID MISS BEING AT HOME WITH ERIKA AND THE BOYS BUT NEXT YEAR WE WILL HAVE AN AWESOME 4TH. THIS PICTURE IS OF US WATCHING THE FIREWORKS OUT THE WINDOW....















TODAY HAS STARTED OUT VERY GOOD. WE ARE ON OUR 7TH SPONGE BOB EPISODE. ALICIA GOT UP FEELING VERY WELL. HER SWELLNESS HAS WENT DOWN, I HAVE WASHED AND LOTIONED HER UP, CHANGED HER CLOTHES AND SHEETS AND NOW SHE IS WATCHING MORE SPONGE BOB. (GREAT)

BUT THE BEST NEWS IS ALICIA HAS AN ANC OF 5OO!!!!!!!!!!!!!!!!!!!!!! THE DOCTOR JUST TOLD US THAT IF HER ANC IS OVER 500 TOMORROW THAN ALICIA WILL BE ABLE TO WALK IN THE HALL FOR A WHILE !!!!!!!!!!!!!!!!!!!!! I AM SOOOOOOOOOOOOO EXCITED FOR HER. WILL EVERYONE PLEASE PRAY THAT ALICIA'S ANC IS OVER 500. I THINK THAT WILL HELP RAISE HER SPIRITS WHICH WILL HELP HER HEAL FASTER AND MOVE CLOSER TO GOING HOMW TO OUR FAMILY.

SHE IS ALSO EATING PRETTY WELL THIS MORNING ALSO. SHE HAS ATE TWO FRENCH TOAST STICKS, EGGS (WITH KETCHUP) AND CHOCOLATE MILK. ANS SHE IS ALREADY ASKING FOR PIZZA. (WHAT EVER IT TAKES:)

I WILL UPDATE IN THE MORNING ( KEEP YOUR FINGERS CROSSED ON HER ANC)

THIS IS HER TODAY.........................

5 comments:

Anonymous said...

Hi ladies,

Love the photo of you two watching the fireworks. ANC of 500...fabulous!!! Love, Dianne

Ne Ne said...

hi guys you look really pretty with your sponge bob bandana on that i bought you see you in 11 days love you Ne Ne

Anonymous said...

Isn't there a monitor that works on other parts of the body like on the arm to check blood sugar?!
Glad you got to see fireworks! Glad to see a pic of YOU, too!
Praying for your family!
Psalms 33:18 Behold, the eye of the LORD is upon them that fear him, upon them that hope in his mercy;

Teresa said...

I'm seriously super impressed! An ANC of 500 already?! That is great (seems kind of early compared to other FA kids I've followed, but maybe I'm remembering wrong!). That is so wonderful!!!!

I have to say that you make me crack up every time you mention something Alicia is watching and then your little comments like "great" or something. I can just imagine the torture of having to watch all those shows! haha! That's too funny;-)

I'm glad you got a photo with her! I feel for her and the blood sugar pokes. I'm having to do that too for gestational diabetes, but I"m betting she has it done more often. It gets OLD real fast.

Glad things are going so well! We pray that they continue to do so.

Charisse said...

An ANC of 500 is wonderful! Yay! I pray that the ANC count is even more high the next day!
Love ya,
Charisse