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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, January 4, 2009

Day +199

We will start witht he good news first...... Alicia ate last night!!!!!!!!!!!!!!!!!! She ate half of a plate of Speghetti and a WHOLE bowl of cereal!!!!!!!!!!!!! I was so very happy to see he eating. She kept looking at me to see if I was looking, then she would ask me if I was proud of her. I told her I was soooooooo HAPPY!!!!!!!!!!!!!!!!! I even took a picture so everyone could be so proud of her.

Now on to the not so bright news. Alicia started having problems with her Blood Pressure last night. She got as hgh as 161/99. After giving her lasixs and hr pottying a million times, they finall gave her aother med ( at midnight ) and then after they ad tocheck her Bp every five minutes for the first 30 minutes then every ten for the next thirty minutes and every half hour after that. Around 2am she finally went down to normal only to wake this morning very hig again. They just gave her some more eds so hopeflly it will be under control fast.
Dr Davies just came by to see Alicia and she said that if we could get her Bp under control by Tusdaythen we could goback to the RMH. HORAY!!!!!!!!!!!!!!!! She also stopped all of her Tpn and gave her a 6 hour window on her feeds!!!!!!!!!!!!!!!!!!!! It looks like we will be out of here soon!!!!!!!!!!!!!!!!!!!!!!!! Maybe it had todo with a " want out picture I sent her"


4 comments:

Anonymous said...

Alicia,

I am SO IMPRESSED that you are eating again. And amazed that you ate so much! You go girl! Now I wonder if some yoga and meditation could help bring your bp down....hey, it couldn't hurt anyway! ;-) Sending you lots of hugs from one of your Camp friends,
rachel

Anonymous said...

I am thrilled to hear that Alicia is eating! Love, Dianne

Anonymous said...

Good job for eattin my lil angel.. uncle crystal loves you misses you and thinks of you everyday

Anonymous said...

Love the "lip" photo.....
Know that you're in my thoughts and prayers!
Psalms 31:24 Be of good courage, and he shall strengthen your heart, all ye that hope in the LORD.
Prayer Bears
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