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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.



Thursday, January 29, 2009

Day +225


Everything is still going good here except for the weather. It has been snowing then raining then ice and now snow again. Luckily we have not had to get out to go to the hospital but once. Tomorrow although we have to be there very early for Alicia's clinic appointment and it is all up hill to get there so I hope we make it without to many complications. These two pictures were taken yesterday and it has snowed since so you can only imagine how much worse it is. Cincinnati has been in a Level 3 Emergency for two days.




Don't worry Erika she was only out there for three minutes.


I just hope it all clears up before Erika and Anshon come next week. That would so break Alicia's heart. All she is talking about is seeing Mommy and Daddy.



Alicia's Magnesium levels have been very low for a while now and it is starting to get concerning. She has had to have Bolus's and now they have tripled her oral and IV magnesium as well. Hopefully when they check her level tomorrow it is back up since they have raised her doses. I am not totally sure as to what the risks are when it gets to low but that is going to be discussed tomorrow.



My family is still searching for an apartment for me back home. They have not had any luck as far as I know. I am going to have a long talk with Erika when she gets here as to what exactly we will need so hopefully it won't take long to find one.



I will update after her appointment tomorrow. wish us luck getting over there tomorrow.



4 comments:

Anonymous said...

Thinking of you, and sending lots of love. Stay warm!!! Dianne

Charisse said...

Wow, what incredible pictures!
I pray that Erika can still get there!
Hopefully you will find the correct apartment soon!
Praying that her Mag levels go up!
Love Charisse

Anonymous said...

Hope you didn't have much trouble getting to the hospital. It seems that snow is blanketing so many of us this winter...we'll all appreciate the spring won't we?
It's great to see Alicia smiling.
Remembering you in prayer and thinking of you every day.
Love,
Mary Ann

Anonymous said...

Glad Alicia was able to have at least a little fun in the snow! The weather HAS to get better soon, right?
"I'm but a stranger here, Heav'n is my Home"...one of my favorite hymns. It's such a comforting thought! Know that I'm praying!
2 Corinthians 4:16-18 For which cause we faint not; but though our outward man perish, yet the inward man is renewed day by day. For our light affliction, which is but for a moment, worketh for us a far more exceeding and eternal weight of glory; While we look not at the things which are seen, but at the things which are not seen: for the things which are seen are temporal; but the things which are not seen are eternal.
Prayer Bears
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