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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.



Saturday, March 21, 2009

Day +275

So far so good. Alicia is still doing great. I was a little freaked out though when i took her to see Dr Rosen, here in Wichita yesterday. He barely scrubbed her line. She has another appointment next week on Thursday, I plan on talking more to him and the home nurse about the way her line has been cared for. (Heck), we definitely don't need a third line infection.

Here is a picture of Alicia and her cousin Kortnie, who which has been spending alot of time at our apartment. She will be watching Alicia when the time come for me to go back to work in a couple of months.

This picture is of Alicia and the home nurse Becky. I have a feeling Alicia is going to eat her alive.

Alicia is taking a nap now so i better do the same. I will update more later!!

7 comments:

Anonymous said...

Thanks for sharing the new photos! Dianne

Anonymous said...

Can't understand drs who don't understand basic cleanliness! I mean come on!!!!!!!!!!!!
The Lord knows everything that's going on and is always there, working. I'm here praying!
Hebrews 4:13-16 Neither is there any creature that is not manifest in his sight: but all things are naked and opened unto the eyes of him with whom we have to do. Seeing then that we have a great high priest, that is passed into the heavens, Jesus the Son of God, let us hold fast our profession. For we have not an high priest which cannot be touched with the feeling of our infirmities; but was in all points tempted like as we are, yet without sin. Let us therefore come boldly unto the throne of grace, that we may obtain mercy, and find grace to help in time of need.
Prayer Bears
My email address

Charisse said...

Great to see photos! It will be good for you to chat to the doctor about the subject of cleaning the line. You would be used to the high standards of a BMT in regards to scrubbing and in other wards it is not always the routine....so it would be good to have a chat about how you feel and hear what the doctor has to say to :-)
Lots of love,
Charisse

Momma Bear said...

Hey! Awesome that you are HOME!!! I'm happy for you! I know Ms Alicia will straighten that nurse and dr out in no time! Hang in there.....

Blessins and Bear Hugs

Anonymous said...

Know that your family is always in my thoughts and prayers!
Jeremiah 17:7-8 Blessed is the man that trusteth in the LORD, and whose hope the LORD is. For he shall be as a tree planted by the waters, and that spreadeth out her roots by the river, and shall not see when heat cometh, but her leaf shall be green; and shall not be careful in the year of drought, neither shall cease from yielding fruit.
Prayer Bears
My email address

Anonymous said...

These words never cease to amaze me. Chronologically they were some of the first words of Scripture ever written...praying so from Seattle right now!
Job 19:25-27 For I know that my redeemer liveth, and that he shall stand at the latter day upon the earth: And though after my skin worms destroy this body, yet in my flesh shall I see God: Whom I shall see for myself, and mine eyes shall behold, and not another; though my reins be consumed within me.
Prayer Bears
My email address

Anonymous said...

Stopping by to let you know I'm praying!
1 Timothy 3:16 And without controversy great is the mystery of godliness: God was manifest in the flesh, justified in the Spirit, seen of angels, preached unto the Gentiles, believed on in the world, received up into glory.
Prayer Bears
My email address