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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.



Tuesday, October 7, 2008

Day +110

Well we had a little scare last night but not enough to set us back!!!!!!!!!!!!!!!!!!!!!!! Alicia's temp got up to 37.9, it is not counted as a fever until you get to 38.0 so she was the closest you can get to having one. I was thinking to myself "YOU HAVE TO BE KIDDING ME"!!!!!!!!!!!!!!!!!!!!!!!

Her potassium was also very low when they did her Cbc's yesterday so they had to give her a Bolis is which is large amount at one time. Then they waited an hour and drew more blood to check it again. She ended up having to have 2 bolis's before they could finally get her Potassium to a level they were ok with. They are also keeping a close eye on it today.

Then this morning her WBC and ANC were very elevated and it has been going up a little every day. To me that would mean she is fighting something that we do not know about but the Docs do not think that is the case since they have been doing cultures every 72 hours for a while now and nothing has shown up. They are going to keep on doing cultures so if that is the case it will show up in one and since she has not had a fever in over three weeks they say not to be alarmed with the elevated counts ( although we were as close to a fever as you can get last night)

Today they are going to do some more test just to make sure there i nothing going on. On top of the blood culture's they are doing a urine and stool test. They are also going to do another Ultrasound bu this time they are going to focus more on her spleen. They said that could also be a reason for the high Wbc.

Alicia is still doing very well though. She seems to be feeling better more and more every day. Right now she is coloring and watching Halloween h20 fir the 2ooth time in three days. Sponge Bob was pushed to the side. She is still not eating well at all. They raised her feeds and she seems to be tolerating them so hopefully hen we get out Monday she will eat more at the RMH. She always seemed to do better when we were at the RMH on passes last month.

Mommy and Daddy will be here in three weeks again. They will be here the weekend before Alicia's Birthday on November 18th. We are All excited!!!!!!!!!!! This time they are bringing my Grandsons and they are staying for four days not one. We are going to keep Alicia and the boys apart so that means I will get alot of time with the boys when Alicia Mommy and Daddy are together. I CAN NOT WAIT TO SEE THEM!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

6 comments:

Charisse said...

Wow, that was close to the "fever" status. I am glad that it has not affected the going home plans :-)
It will be real nice to be able to see your grandsons! Yay! Will Alicia be able to see them through her window?
Love Charisse

Anonymous said...

Hi from MN! Thinking of you. Dianne

Anonymous said...

Praying!
Psalms 46:1-5 God is our refuge and strength, a very present help in trouble. Therefore will not we fear, though the earth be removed, and though the mountains be carried into the midst of the sea; Though the waters thereof roar and be troubled, though the mountains shake with the swelling thereof. Selah. There is a river, the streams whereof shall make glad the city of God, the holy place of the tabernacles of the most High. God is in the midst of her; she shall not be moved: God shall help her, and that right early.
Prayer Bears

Anonymous said...

Hope you guys are having a good day. Love, Dianne

Anonymous said...

Stopping by to let you know I'm still here praying!
Psalms 46:10-11 Be still, and know that I am God: I will be exalted among the heathen, I will be exalted in the earth. The LORD of hosts is with us; the God of Jacob is our refuge. Selah.
Prayer Bears

Anonymous said...

Alicia,
Hello!
I just stopped by your site to check on you.
You are still in our prayers!
Dianna is having her transplant too.
I hope we get to see you again at the next Camp Sunshine!
Best Wishes,
Nanette Foster (Dianna's Mom)
www.caringbridge.org/tx/dianna