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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, May 19, 2009

Day ???????????? DO NOT KNOW

Alicia is resting so I have the opportunity to update. Any and every second she is awake we are arguing about food. I am so scared she might start eating my arm or something. She is begging everyone that walks in the room to Please give her one bite. It hurts so bad to tell her she can't. I even thought of sneaking her a spoon full of broth but the first time i do i would get caught!!!!!!!! The Nurses here are WONDERFUL and Megan who has been with us the last couple of days is really stressing to the Doc's how Alicia is having a very hard time with this. The bad thing is Alicia didn't eat three days prior to this happening (by her choice) so we are actually going on a week without food. I am trying everything to side track her and keep her mind occupied and busy but it is not working. Even Sponge Bob is not helping me!!!!!!!!!!!!!!!!!!!!!!!!

The did start her IV (TPN and Lipids) nutrition yesterday which makes me feel better knowing she is getting the protein and calories and nutrition she needs.


They also started another Anti Biotic yesterday for the Bacteria in her stool, and this one is oral. I flush it with sterile water so I am trying to use a little extra to calm her stomach for the few minutes it will. The Doc's have not rounded yet so hopefully we will have some good news when they do.


I do not know if I mentioned in my last post that I went and seen Stacy Yesterday. I could not help but just crying when I seen him. He looks sooooo tired. The Docs told her that he was loosing blood flow to his left leg and if it got any worse they would have to amputate and Michelle said that there was no way she would let them start taking off his limbs ( i am bawling lie a baby) I spent every moment I could with his mom yesterday while her husband was gone and I got the feeling she is just about ready to put Stacy in Jesus's arms. She told me that she held his hand yesterday and told him that if he was tired to just show her a sign and she said a tear rolled down his cheek. She said she told him it was Ok and that Mommy and Daddy will be Ok and that he didn't have to keep pushing and hurting and that Jesus would take him to Grandma. I am just so sad for my friend. We cried together and she was begging for the strength to let go. His twin sister is here today but the Hospital will not let her up to see him with all of the tubes hooked up. (which is probably best) I have not talked to her today but as soon as I do I will update again today so you can check later this afternoon for another update. I told Michelle that A very special friend of mine who also has children with Fa posted about Stacy on the group and that many many many people she does not know is praying non stop for her whole Family. Michelle does not have a computer and is not even on the group, She said she didn't even know it was there but she wanted me to Thank everyone so much she said.

1 comments:

Dianne said...

Thanks for the update. Praying...Dianne