Alicia seems to be doing alot better still. She is STILL having alot of tummy pains but Dr Davies says it is because her tummy is so little and they are upping her tube feeds to try to wein her off the tpn's. She said today she is going to slow down on them and give her tummy a little break so we might be here a little longer which I am ok with. She did say that she thinks the GVHD is getting better which I am very happy about.
Home Health came by and started teaching me how to administer her meds when we are set free............................. I am a nervous wreck, I hope I do not give her the wrong one or to much. LOL HELP!!!!!!!!!!!!!!!!!!!!!!!
We are still going out on 4 hour pass tomorrow. I am so nervous. But I need to get my feet wet. I decided to just put a permanent thermometer on her forhead, and never unhook her meds so I will not mess up when I hook them back up!!!!!!!!!!!
My sisters are on the road now. They got out of town late because they had to go back three times to have her husband show her how to make something work in the rental van she has. She is so retarded, I can not wait for them to get here.
Well I will let everyone know how things go with our first pass out of here.......wish us luck
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, August 29, 2008
Day +71
Posted by Michelle at 4:27 PM
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2 comments:
You're gonna do fine with the meds!
Whatever the trial, look to the Lord. Praying!
Habakkuk 3:17-19 Although the fig tree shall not blossom, neither shall fruit be in the vines; the labour of the olive shall fail, and the fields shall yield no meat; the flock shall be cut off from the fold, and there shall be no herd in the stalls: Yet I will rejoice in the LORD, I will joy in the God of my salvation. The LORD God is my strength, and he will make my feet like hinds' feet, and he will make me to walk upon mine high places...
Prayer Bears
Hi Michelle,
wow, 2 updates since I checked yesterday! That is weird.....hehe. I am sure you will do well with the meds but I can totally understand you feeling nervous.
I am glad that the GVHD seems to be getting better. We prayed for Alicia at prayer meeting again last Thursday night.
Love you,
Charisse
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