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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.



Monday, August 18, 2008

DAY + 60

WELL THE LAST TWO DAYS HAE BEEN SOOOOOO BUSY. ALICIA IS DOING WAY BETTER TODAY. SHE IS GIVING THEO A PIC LINE LIKE HERS RIGHT NOW. IT IS SO CUTE. I JUST TOOK PICTURES BUT FOR SOME REASON I AM HAVING TROUBLE DOWN LOADING THEM TONIGHT SO I WILL POST THEM TOMORROW.

THEO IS SUCH A LIFESAVER!!!!!!!!!!!!!!!!!!!!!!!!! HE NOW GIVES ALICIA ALL OF HER VITALS. THE NURSE'S LOVE IT BECAUSE THEY USUALLY HAVE TO FIGHT WITH HER FOR A SHILE BEFORE SHE WILL LET THEM DO THEIR JOB. NOW ALL THEY HAVE TO DO IS LET THEO HOLD THE THERMOMETER AND SHE DOES WHAT EVER IS NEEDED. THEO NOW TAKES INSULIN SHOTS ALSO AND HE HAS TO HAE IS SUGAR CHECKED EVERY THREE HOURS LIKE ALICIA. SHE DID GET KIND OF UPSET YESTERDAY THOUGH BECAUSE SHE COULD NOT UNDERSTAND WHY THEO WAS NOT BLEEDING. I REALLY DID NOT KNOW HOW TO OVER COME THAT ONE. LOL. WE ALSO FOUND OUT THAT THEO IS VERY MUCH A BOY YESTERDAY. ALICIA WANTED TO PUT A DIAPER ON HIM LIKE SHE HAS AND WHEN I WENT TO HELP HER I ABOUT FELL OUT. YES HE HAS IT ALL!!!!!!!!!!!!!!!!!!! SHE DID NOT SEE AND I HURRIED UP AND TOLD HER THEO IS A BIG BOY AND HE IS POTTY TRAINED AND DOES NOT NEED A DIAPER. SHE WAS COOL WITH THAT THANK GOD!!!!!!!!!!!!!!!!!!

ALICIA GOT HER PIC IN THIS MORNING IN HER ARM AND I AM SOOOOO HAPPY. FOR THE LAST TWO MORNINGS THE CVC TEAM HAS HAD TO COME IN AND DO HER DRAW BLOODS WITH INSERTING A FRESH IV. ALICIA DID VERY WELL AND DID NOT CRY BUT I CAN TELL SHE IS GETTING VERY IRRITATED. THEY HAD A PROBLEM PUTTING THE PIC IN HER RIGHT ARM AND AFTER TRYING FOR ABOUT A HALF OF AN HOUR THEY MOVED TO THE LEFT AND GOT IT RIGHT AWAY. IT SEEMS TO BE WORKING WELL WHICH I AM SO RELIEVED.

HER MAIN ISSUE IS HER BLOOD SUGAR AND BLOOD PRESSURE. YESTERDAY SHE ACTUALLY WENT DOWN TO 23 AND WENT INTO A DIABETIC SHOCK BUT THE BROUGHT HER OUT OF IT FAST AND THEY ARE WATCHING HER VERY CLOSE. HER BP HAS ALSO BEEN BEEN ERY HIGH FOR TWO DAYS NOW BUT IT IS UNDER CONTROL WITH ALOT OF MEDS.

I WANT TO THANK KAYLA VERY MUCH FOR THE CAMP SUNSHINE SHIRT THAT SHE SEN TO ALICIA. SHE MADE ME OUT IT ON HER RIGHT AWAY WHEN SHE OPENED IT. THANKS KAYLA!!!!!!!!!!!! MY FAVORITE WAS THE POWER PUFF GIRL MOVIE THOUGH. I WAS SO HAPPY TO SEE THAT...... NO MORE SPONGE BOB!!!!!!!!!!!!!!! AT LEAST FOR TODAY. THANKS AGAIN KAYLA.

WELL IT IS GETTING LATE AND ALICIA AND THEO NEED THEIR MEDS AND PJ'S ON. ( I WILL DRESS THEO :)

THANKS AGAIN FOR ALL OF THE PRAYERS FOR ALICIA, AND A SPECIAL THANKS TO YOU DONNA FOR WHAT YOU DONE FOR US!!!!!!!!!!!!!!!!!!!!!!

5 comments:

Charisse said...

I am glad that Alicia seems to be doing better. What a shock about Theo! Ha! I didn't realise he would be fully equipped!
I hope you have a good sleep.
Love Charisse

Anonymous said...

Thanks for the update. That Theo is really something. Sweet dreams. Dianne

Anonymous said...

You are SOoooooooooo Welcome! I am glad she liked it! I really missed you guys at camp this year. It wasn't the same without you!
(((HUGS)))
Kayla

Anonymous said...

Am so happy to hear that Alicia is doing better. ontinue to think of you daily and to pray.
Love,
Mary Ann

Anonymous said...

Michelle,
Thank goodness for Theo and MeeMa. Alicia is one lucky little girl and with a very loving FAmily too! We are all praying for her to get well each day. And, what wonderful news that she is 100% donor. All the bad blood cells are gone and now the new healthy cells can give her back her spunk and energy.
Mary Ann, David, Joey & Peter
Fiaschetti