Everything went well during our trip to Cincinnati. We made it home safe and sound. It took a lot of explaining to Alicia that we were only going for a short while. She did not want to get on the plane. She made sure that she told everyone, including Dr Davies that she was not staying and that she had to go home cause Ne Ne said.
Dr Davies said she looked good. I was hoping that she was going to take her off of some of the hundreds of meds she is on but the only change was with the Tacrolumis (sp??). Her goal is to get her off of the fluids that she is getting over night but she needs the Magnesium and Potassium that are added in the fluids. She just cut the med in a third, she wants to take her off of it slowley so she will not get GVHD again. This med that she cut also effects the Magnesium level so the goal is to get her off of it so it will not effect her Magnesium level which will mean she will not need the dose in her fluids. We are going to give it a trial this weekend. I am not going to give her fluids Saturday, Sunday or Monday and the nurse is coming out Tuesday to draw blood to see if it worked. I so hope it does because that also means we will be able to get rid of the Picc line.
We have to go back to Cincinnati in four weeks and at that time Alicia will have her Year Biopsy and checkup. I can not believe it has been almost a year since she had her transplant. I am so glad it is behind us!!!!!!
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, April 24, 2009
Day +309
Posted by Michelle at 9:54 AM
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10 comments:
Thanks for the update!!!!!!!! Glad it all went well and that you're home again!
The Lord knows everything that's going to happen in the future and is already working everything out. Praying!
Jeremiah 29:11-13 For I know the thoughts that I think toward you, saith the LORD, thoughts of peace, and not of evil, to give you an expected end. Then shall ye call upon me, and ye shall go and pray unto me, and I will hearken unto you. And ye shall seek me, and find me, when ye shall search for me with all your heart.
Prayer BearsMy email address
Thanks for the update! I am glad the Cincinatti visit went well, and you are now home safe and sound!! Love, Dianne
Know that you're in my thoughts and prayers!
2 Samuel 22:2-3 And he said, The LORD is my rock, and my fortress, and my deliverer; The God of my rock; in him will I trust: he is my shield, and the horn of my salvation, my high tower, and my refuge, my saviour...
Prayer BearsMy email address
I am glad that things went well. Yes! I hope you can get rid of the PICC line soon too. Wow, a year already!
Love Charisse
Stopping by to let you know I'm here praying!
Romans 15:13 Now the God of hope fill you with all joy and peace in believing, that ye may abound in hope, through the power of the Holy Ghost.
Prayer BearsMy email address
Know that the Lord is always with you whatever happens! Praying!
Isaiah 41:10 Fear thou not; for I am with thee: be not dismayed; for I am thy God: I will strengthen thee; yea, I will help thee; yea, I will uphold thee with the right hand of my righteousness.
Prayer BearsMy email address
Continuing to pray!
1 Peter 5:10 But the God of all grace, who hath called us unto his eternal glory by Christ Jesus, after that ye have suffered a while, make you perfect, stablish, strengthen, settle you.
Prayer BearsMy email address
Hi all,
Thinking of you...and just stopped by to say hi. Hope all is well.
Love, Dianne
Know that I'm here praying hard right now!
Psalms 23:4-6 Yea, though I walk through the valley of the shadow of death, I will fear no evil: for thou art with me; thy rod and thy staff they comfort me. Thou preparest a table before me in the presence of mine enemies: thou anointest my head with oil; my cup runneth over. Surely goodness and mercy shall follow me all the days of my life: and I will dwell in the house of the LORD for ever.
Prayer BearsMy email address
I can't imagine anything more comforting than knowing that the Holy Ghost Himself is prying for you!
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 BearsMy email address
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