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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.



Thursday, March 1, 2007

Marcy 2007 entries

Thursday, March 22, 2007 11:24 AM CDT

Hello everyone,

Lil Anshon is one week old today. He is doing so well. Erika is taking him to the doctor this afternoon for his one week check up. He is such a good little baby, Im at Erikas now watching him while she goes to the doctor to get her staples removed.

I was right about Alicia being jelous. She has been staying with me since Lil Anshon was born, Erika is still moving very slow and Alicia is such a little busy body. We were over Erika's Sunday and the very first time I picked up lil Anshon Alicia wasn't having it. She jumped up right in my lap and wouldn't get down so I had to put the baby down. We are going to have to work on sharing Mee-ma. She also tried to jump off the porch and Erika had to catch her, Erika said that felt like she was ripping open inside. Hopefully by next week Erika will be feeling better so Alicia can go home. She starts back to school Monday, so I think we will spend Sunday again so Alicia can get used to being around the baby and being careful with Erika.

We finally found a Pediatician here that we like, she has a lot of special need children as patients and she is very eager to learn all she can about FA. That made me feel at ease finally.

I will update later, the baby is stirring so I think he might need a dry diaper, ( its so weird having a little boy)

I hope all is well with everyone.

Michelle


Thursday, March 15, 2007 6:43 PM CDT

HELLO EVERYONE,

I BECAME ANOTHER MEE-MA TODAY. ALICIAS LITTLE BROTHER WAS BORN THIS MORNING AT 8:30 AM. ERIKA DID JUST FINE DURING HER C-SECTION. "LIL ANSHON" IS SOOOOOO CUTE. HE WEIGHED 7 LBS 15 OZ.

OF COURSE THE FIRST THING I DID WAS COUNT HIS FINGERS AND THEY WERE ALL THERE. HE DOESN'T SHOW ANY SIGNS OF FA THAT I COULD SEE, ALTHOUGH IM NOT GETTING ANY HIGH HOPES UNTIL HIS RESULTS COME BACK.

THE TEST IS THIS EVENING. MY SISTER IS TAKING ALICIA TO THE HOSPITAL TO SEE HIM. I KNOW SHE IS GOING TO BE SO JELOUS.

MY FRIEND IS GOING TO PUT PICTURES OF HIM ON ALICIAS SIGHT THIS EVENING SO HOPEFULLY EVERYONE CAN SEE HOW CUTE HE IS. ( YES IM A PROUD GRANDMA)


MICHELLE


Sunday, March 11, 2007 6:26 PM CDT

Hello.

well we are in the waiting stages again. alicia is going to have another biopsy done in 2 months, hopefully they stay the same as last which said her monosomy 7 had dropped low enough for it to be counted and her blast count was down to 2%. i know that the monosomy can come right back so im not going to get my hopes up about it staying away because i have not had very good luck lately on having high hopes.


alicia and me did a live interview for childrens miracle network yesterday. i was kinda scared but alicia was herself and took everyones attention. i wish i had all her energy.


the count down is on... im going to be another mee-ma in 4 days. i am sooo excited. the first thing im doing is counting for 5 fingers. i just know he is going to be so cute. erika is having a c-section at 8:30 on thursday the 15th.


ill put pictures on alicias site just as soon as i get them.

michelle

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