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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.



Sunday, November 14, 2010

Hurry up and wait..............

Still no answers on what is causing all of this......... Echolia has showed up in her urine but not in cultures yet.... Kansas has not identified what organisms are growing and the cultures here are still neg. What ever it is or was the antibiotics must be doing their job. She is still not eating or drinking and she is sleeping alot. Stools are still pure water, yesterday she didn't make it to the bathroom and pooped on the floor like a puppy. My nails have encountered so much poop in the last 5 days,,,  I don't do well with poop and Alicia thinks it is so funny.

its so hard to believe she will be 8 years old in 4 days. time is going so fast i wish it would slow down so we can be together longer.

mommy and daddy Alicia misses you so much. please kiss my boys for me and tell them every day that mee-ma loves them.

Michelle

8 comments:

Mary Ann Gormley said...

Oh Michelle,
How I hope that Alicia will be better by her birthday even if she has to spend it in the hospital.
You guys have gone through so very much.
Praying every night for you and Alicia....please God, help my friends and I love them and they need a break.
Mary Ann

Anonymous said...

Hope they find out what's going on soon!!!!!!!!!! She needs to feel great to celebrate her birthday!
These verses are so comforting. Continuing to pray!!!!!!!!!
Revelation 21:1-4 And I saw a new heaven and a new earth: for the first heaven and the first earth were passed away; and there was no more sea. 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.
Prayer Bears
My email address

Anonymous said...

Know that you're in my thoughts and prayers!
Isaiah 25:8-9 He will swallow up death in victory; and the Lord GOD will wipe away tears from off all faces; and the rebuke of his people shall he take away from off all the earth: for the LORD hath spoken it. And it shall be said in that day, Lo, this is our God; we have waited for him, and he will save us: this is the LORD; we have waited for him, we will be glad and rejoice in his salvation.
Prayer Bears
My email address

Anonymous said...

HAPPY BIRTHDAY, ALICIA!!!!!!!!!!!!!! So sorry you're stuck in the hospital but so glad you had a good day anyway!
Praying in Seattle!
Isaiah 26:3-4 Thou wilt keep him in perfect peace, whose mind is stayed on thee: because he trusteth in thee. Trust ye in the LORD for ever: for in the LORD JEHOVAH is everlasting strength:
Prayer Bears
My email address

Anonymous said...

Know that you're always in my thoughts and prayers!
“And it shall come to pass, that before they call, I will answer; and while they are yet speaking, I will hear” (Isaiah 65:24).
Prayer Bears
My email address

Anonymous said...

Always keep your eyes on the Lord! Praying!
Psalms 121:1-2 I will lift up mine eyes unto the hills, from whence cometh my help. My help cometh from the LORD, which made heaven and earth.
Prayer Bears
My email address

Anonymous said...

Always here praying!
Psalms 121:6-8 The sun shall not smite thee by day, nor the moon by night. The LORD shall preserve thee from all evil: he shall preserve thy soul. The LORD shall preserve thy going out and thy coming in from this time forth, and even for evermore.
Prayer Bears
My email address

Anonymous said...

Know that you're in my thoughts and prayers!
Psalms 91:1-2 He that dwelleth in the secret place of the most High shall abide under the shadow of the Almighty. I will say of the LORD, He is my refuge and my fortress: my God; in him will I trust.
Prayer Bears
My email address