Things are starting to calm down a little finally. Alicia is doing GREAT!!!!!!!!!!!!! She is a complete different little girl now that we are out of the hospital. She is soooooo happy and she is even eating finally. I am still very tired but hopefully I will be able to catch up on some sleep this weekend. I am doing OK though. Dr Davies calls the Nurse in charge at the day hospital to see how I am and if I look tired. Everyone is saying that I am doing a great job so I think she is feeling better about letting Alicia go home ( to the RMH )
I think I have finally got it down to a fine art with giving Alicia her nightly infusions and Meds. Tonight I broke a record and got it done in just a little over 2 1/2 hours. I have everything ready for in the morning already so all I have to do is get up and start the pump and go back to sleep!!!!!!!!!!
We still have to be in Day Hospital everyday but Tuesday for a while but I am OK with that. Alicia had to get Platelets today otherwise we might of had to go over there this weekend. Hopefully now I will have time to get the room over here situated and laundry done before Monday when the madness starts all over again.
Well I am off to bed so I can try to catch up on my rest. Thanks everyone for all of your support.
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.
Friday, October 17, 2008
Day +122
Posted by Michelle at 10:37 PM
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4 comments:
Great job with the meds Michelle! I am so thrilled to hear that Alicia is doing so well. You guys are in my thoughts and prayers as always. Love, Dianne
Alicia and Michelle. I am happy to hear your out of the hospital and doing well. I miss you both and Sarah said to say hello to Alicia. WE will be there Nov. 6th for four 3 month follow up. Michelle your doing a SUPER Job with everything. YOu are in my prayers always. Sorry about not signing sooner, we have both been under the weather all week since returning form Disney.
love and lots of (((HUGS)))
Lori and Sarah
Hello Michelle,
it sounds like you have really got a handle on things! Well done!
It is so wonderful to hear that Alicia is heaps happy.
Love Charisse
So thrilled that things are going so well there!
When I share this passage I normally only include verse 4 but this whole section is really good. Continuing to pray!!!!!!!!!!!
Revelation 21:2-5 And I John saw the holy city, new Jerusalem, coming down from God out of heaven, prepared as a bride adorned for her husband. And I heard a great voice out of heaven saying, Behold, the tabernacle of God is with men, and he will dwell with them, and they shall be his people, and God himself shall be with them, and be their God. And God shall wipe away all tears from their eyes; and there shall be no more death, neither sorrow, nor crying, neither shall there be any more pain: for the former things are passed away. And he that sat upon the throne said, Behold, I make all things new. And he said unto me, Write: for these words are true and faithful.
Prayer Bears
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