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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, November 5, 2008

Day +139


Alicia is still doing very well!!!!! We had a little scare Tuesday morning, she woke up about 7am gagging like she was going to throw up so I stopped her feeds and she went back to sleep. I took her Temp every hour but she was fine. When she woke up she was acting like herself so I chalked it up to eating to many chips just before she went to bed.
Monday was a pretty quiet day, she had a clinic appointment in the morning and she did great. Tuesday morning she had class with Mrs Ellie and she learned the words that started with "M" like Mee-Ma!!!!! After class Jim her Therapist arrived and her worked with her for about an hour. Alicia took to Jim the very first time she met him which is unusual lately. Alicia seems to be kinda mean to new people lately but it is because of so many Doctors and Nurses messing with her. But she just loved Jim. Here are a couple of pictures during her Therapy session Tuesday........................

He has been working alot with strengthening her legs.
While Jim was here I got a call from the front desk telling me that I was going to have to move rooms again... YES AGAIN!!!!!!!!!!!!!!!!!!!!!! They assured me that it would be the last time, they are remodeling the bathrooms and the room they moved us to is already done. We are now in Rm 2.
It took me about five hours but I finally got everything moved and put away. I am so glad the Home Health Nurse was there giving Alicia her IVIG so it made it alot easier on me to get everything moved.
Today she had to be in Day Hospital for an infusion and Cbc. It all went well and her Wbc came down just a Little to 22.6. Her HBG also went down so we have to go back to Day Hospital in the morning for Red packed cells. Hopefully while she is there getting blood they can give her the infusions she is to get on Friday so we can have a 3 day weekend. Theo also came to see Alicia again in Day Hospital, Theo has saved me time and time again. Here is another picture of the two of them, Alicia decided to have Theo be the bald one today..................
I took this picture om Tuesday also. A friend of hers gave her this wig ( it has never been wore by anyone else )
I guess it is true that your hair color can change after transplant.... LOL
Tomorrow is going to be another long day so off to bed for me. Alicia has been asleep for a while now. I am still excited only 8 more days til Mommy Daddy and baby Brothers!!!!!!!!!!!!!!
Anyone that is going to send Alicia a card during her "Birthday week Marathon of Cards" please do not forget that we switched rooms to Rm 2 and I thank everyone who is willing to do it to make her have a special week!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

3 comments:

Lynn said...

Love the new hair! :o)
Know that I'm continuing to pray in Seattle!
Psalms 116:15-17 Precious in the sight of the LORD is the death of his saints. O LORD, truly I am thy servant; I am thy servant, and the son of thine handmaid: thou hast loosed my bonds. I will offer to thee the sacrifice of thanksgiving, and will call upon the name of the LORD.
Prayer Bears

Anonymous said...

Love the new photos. Hope you have a great day. Dianne

Anonymous said...

Alicia--you wear the hair well. You know what they say blonde's have more fun !!!!haha Michele one of my friends is there with you now take good care of her and family as youve done for me. hope to see you Friday...
cheryl
www.carepages.com/kendranichole