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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.



Wednesday, July 2, 2008

DAY +13

ALICIA'S MORNING STARTED OFF THE SAME AS THE LAST THREE. I THOUGHT THOUGH IF I WAS TO WORK WITH HER A LITTLE AND TRY SLOWING TO HAVING HER SIT UP AND PLAY A LITTLE THAT MIGHT HELP HER TO START FEELING A LITTLE BETTER. i GAVE HER A SPONGE BATH AND CHANGED HER CLOTHES AND BEDDINGS BUT THAT DIDN'T WORK TO WELL SHE STILL WANTED TO LAY DOWN SO I THOUGH OK LETS MOVE TO PLAN B.......... I CAN TRY TO BRIBE HER........... THEN I THOUGHT WHAT WOULD WORK......... THEO WAS COMING..........THAT WAS IT. I KNEW THAT IF I TOLD ALICIA THAT SHE WOULD HAVE TO GET UP AND PLAY WITH THEO IF HE CAME THAT THEO JUST MIGHT BE THE TRICK, AND I WAS RIGHT.

JESSE BROUGHT THEO AS PROMISED AROUN 2PM AND ALICIA WAS SO HAPPY. I HAD HER CLOSE HER EYES AND JESSE SNUCK IN WITH THEO AND WHEN SHE OPENED HER EYES SHE SMILED SO BIG!!!!!! SHE WAS SOOOOOO HAPPY!!!!!

THIS IS JESSE SURPRISING ALICIA WITH THEO

ALICIA TALKS AND ASKS FOR THEO ALL THE TIME. I DO NOT KNOW WHAT IT IS ABOUT THIS PUPPET BUT IT WORKED. SHE SAT UP FOR ALMOST 45 MINUTES AND PLAYED WITH JESSE AND THEO.




LOOK SHE IS UP!!!!!!!!!!!

THIS MORNING SHE SEEMS TO BE FEELIN A LITTLE BETTER. HER COUNTS CAME BAC AND HER ANC IS BACK AT 0.0 BUT ALL THE DOCTORS AND NURSES ARE TELLING ME THAT IS NORMAL. HER WBC IS STILL AT .2, PLATELETS DOWN TO 33,000 AND HBG IS AT 8.2. THERE WAS ONE CONCERN THAT THE DOCTORS HAVE AND THAT IS WITH HER PHOSPHATE LEVEL, WHICH THEY TOLD ME WAS ONE OF HER ELECTROLYTES. THEY ARE GIVING HER EXTRA DOSES TODAY IN HOPES IT GOES UP.

I ALOS HAVE SOME GOOD NEWS. WHEN I WOKE UP THIS MORNING THERE WAS A PATIENT ATTENDANT HERE AND SAID SHE WOULD BE SITTING WITH ALICIA UNTIL THREE THIS AFTERNOON. YES!!!!!!!!!!!!! I CAN WASH CLOTHES AND MAYBE TAKE A SHORT VERY MUCH NEEDED NAP. ALICIA SEEMS TO LIKE HER SO I HOPE SHE DOES NOT GIVE HER TO MANY PROBLEMS. I WILL BE COMING AND GOING ALOT, THERE IS NO WAY I WOULD BE ABLE TO STAY GONE THAT LONG BUT I CAN GET ALOT DONE TODAY KNOWING SOMEONE WILL BE WITH HER ALL THE TIME.

PLEASE KEEP CHARISSE IN YOUR PRAYERS. SHE IS A FRIEND I MET A T CAMP A COUPLE OF YEARS AGO. SHE HAS FA ALSO AND IS FACED WITH SOME CHALLANGES IN HER LIFE AT THIS TIME AND COULD USE SOME EXTRA PRAYERS.

THANK YOU EVERYONE FOR CHECKING UP ON ALICIA

6 comments:

Anonymous said...

It is great to see Alicia smiling. Michelle, I hope you are able to get a bit of nap. Thinking of you all...Dianne Ploetz and Family

Teresa said...

Wow, that's pretty amazing Alicia was up playing! She looked so cute and tiny in her photos. Hopefully her ANC will rise soon! Loved the photos...

Glad you are going to get a break. I think it'll help refresh you and help you not feel so trapped in there! We wish we could come and visit you guys.

We love your updates and hope and pray that things go well.

Love,
The clifton's

Anonymous said...

Whooo hooo...sitting up looks good!!! Theo is so cute! I'd even sit up for him!!!!

I tried to leave you a little bear holding a sign that says....A hug is worth a 1000 words......but it wouldn't accept html tags!

Blessings and BIG Bear Hugs,

Unknown said...

hi baby its mommy. Im so sorry it took me so long to sign today. I been really busy all day at work. when I talked to you today you sounded so happy and full of energy. Im glad you got up today and felt good for a lil while. Memea keep up the good work and keep using the trick with theo:) I love the both of you and Ill talk to you later.

Charisse said...

It is wonderful to see Alicia up and playing with Theo! Ha! It is funny what seems to get the children excited!
Thanks, Michelle, for the request for prayers for me on your blog. I really appreciate it. I have been really worried and anxious.
Love you heaps,
Charisse

Anonymous said...

Glad she finally got up...This whole psalm is so good for all who are overwhelmed. Continuing to pray!
Psalms 102:1-2 ((A Prayer of the afflicted, when he is overwhelmed, and poureth out his complaint before the LORD.)) Hear my prayer, O LORD, and let my cry come unto thee. Hide not thy face from me in the day when I am in trouble; incline thine ear unto me: in the day when I call answer me speedily.