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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, September 4, 2008

Day +77

Alicia finally broke her fever yesterday after on and off for what seemed like forever. There is still no explanation as to why the fever was here except it was close for her time to get out. She now is having issues with her blood pressure and they have been giving her meds to try to get it under control. So hopefully we will be geting out late next week, that is the plan as of now but I am not getting my hopes up this time. I by far am not ready to have her out with all the problems she keeps having. I am though very tired and wish this would all end so we can go home to our family which I miss sooooooo much.

She is still having alot of issues with her tummy but since they stopped the tube feeds all together she seems to be complaining alot less. Last night we did have a huge episode with Alicia even balling over saying her tummy hurt so they gave her more meds and it seemed to work also. Alicia is a walking Pharmacy.

Therapy is working well with Alicia. She still is walking very slow but she is walking more upright and not bent over. She has also been walking by herself without holding any one's hands. She has came a long way.

I want to thank Diane John and Michelle for the very cute shirts you sent Alicia from your trip. Her favorite by far though was the sponge bob backpack!!! It was soooo cute.

Mommy and Daddy are planning on coming back real soon. Erika said they are trying for the end of this month. I sooooo hope they can find enough money to get here, Alicia misses them soooo much!!!!!!!!!

Thank you again everyone for keeping my baby in your prayers. Without you all and the Lord I would be lost.

4 comments:

Charisse said...

Michelle, what can I say, I am glad her fever broke and we prayed for Alicia at prayer meeting last night. Love you,
Charisse

Teresa said...

it must seem endless...

I'm so glad that her fever broke! I hope things start taking a turn for the better and her stomach can stop hurting her and she can get on out of there and back home! You guys are in our thoughts and prayers.

Love,
teresa

Lynn said...

Oh I'm sorry she's having so many problems still!
Praying right now!
Psalms 86:14-15 O God, the proud are risen against me, and the assemblies of violent men have sought after my soul; and have not set thee before them. But thou, O Lord, art a God full of compassion, and gracious, longsuffering, and plenteous in mercy and truth.
Prayer Bears

Lynn said...

Know that I care so very much and am still praying!
Psalms 73:24-26 Thou shalt guide me with thy counsel, and afterward receive me to glory. Whom have I in heaven but thee? and there is none upon earth that I desire beside thee. My flesh and my heart faileth: but God is the strength of my heart, and my portion for ever.
Prayer Bears