The CBC"S this morning show that Alicia's liver enzyme numbers are still rising. The doctors want to give her another day or two without the Voriconizole to see if they start to decrease before they make any assumptions. I still believe it has something to do with the GVHD because her stools are getting worse and more frequent today and she is not feeling well at all. They did decide to go back up on the dosage of steroids she is getting since they were starting to wein her and it seems her GVHD is still quite active. They started her on the medicine to protect her liver which is good news.
She is also loosing more weight which she defiantly can not afford to do. She is sooooo tiny already and her little legs are so fragile. She is having a hard time walking again but therapy and myself keeps her walking every day so we can keep working her legs out. ( I promise Mommy and Daddy we are walking every day )
Her appetite has also decreased alot so they are going to start her on over night feeds again either tonight or tomorrow evening. I am kinda relieved they are going to go ahead and do that since she is not eating that much.
GOOD NEWS!!!!!!!!!!!!!! Erika and Anshon are driving up this weekend. Alicia is sooooo excited, She misses her Mommy and Daddy so much. They couldn't afford to fly but Erika's boss is helping them rent a car so they will be here early next Friday morning. They will only be able to stay for the weekend again but the important thing is they will be here. Hopefully Alicia will be out of the hospital by then and can spend the whole weekend with them and I can get some rest again,
The Doctor said this morning that if her Liver numbers come down we should be out at the beginning of they week but I just said to myself that I will not get my hopes up no matter what until I am definite that the time has came for real. Please keep praying for Alicia, I know the Lord hears all of the prayers being said and I have faith in the Lord that he is touching my baby and he is keeping her here for a reason. Thank you to everyone who is following Alicia' Journey.
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, September 10, 2008
Day +84
Posted by Michelle at 4:05 PM
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6 comments:
As always, praying for Alicia and the whole family. Thanks for the udpate. Dianne
Dear Michelle,
that is excellent news that mummy and daddy will be able to be with Alicia again. That will make her weekend! I know she loves you too, but there is nothing like having your mummy!
Michelle, you have been doing a tremedous job! What a woman you are! What a dedicated grandma! I really admire you. There are not many grandma's these days who are this dedicated. It is sad really. So well done!!!!
We will be praying for Alicia in our group prayer meeting again tonight. We will not stop!
Love you,
Charisse
thanks for the update. i hope her numbers go down and the gvhd improves. yay that mommy gets to visit!! you're in our prayers.
love, teresa
(typing one-handed takes a lot longer!!)
Glad Alisa's got something to look forward to!
Remembering the families of all who lost their lives 7 years ago.
Praying right now!
Psalms 91:14-15 Because he hath set his love upon me, therefore will I deliver him: I will set him on high, because he hath known my name. He shall call upon me, and I will answer him: I will be with him in trouble; I will deliver him, and honour him.
Prayer Bears
Thinking of you and praying for Alicia. It's good that her mom and dad are coming up. It's good also that the problem showed up before you both were sent home.
Wishing for the best for all of you.
Love, Mary Ann
Know that I'm praying!
Romans 8:26-27 Likewise the Spirit also helpeth our infirmities: for we know not what we should pray for as we ought: but the Spirit itself maketh intercession for us with groanings which cannot be uttered. And he that searcheth the hearts knoweth what is the mind of the Spirit, because he maketh intercession for the saints according to the will of God.
Prayer Bears
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