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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, September 7, 2008

Day +80

Alicia had a great day today. Her fever did not last long last night and Dr Davie's did not start feeds or Tpn's. She said that It will take time and she wants Alicia to eat on her own. And once again she was right. Dr Davies is the reason I am so far from home and she has proven her self to me many many times. ALICIA ATE ALOT TODAY!!!!!!!!!!!!!!!!!!!!!!!!!!!! She got another four hour pass today and we went to the RMH. I put Alicia's new Dora bike together which I feel will help her build her legs stronger. She also took another REAL bath. We had a really good day!!!!



This is a picture of Alicia leaving for her pass, notice she is pushing the stroller and she is not in it.......



and this is her coming back from pass, she stopped and got her friend Theo for a ride also, there was a nurse to the left of her and this is what she always does now when she See's one she does not know....



and this is of her good friend Albert and best friend THEO..........................



Next I would like to stress very hard on a subject that has been mentioned and has been bothering someone very very important to me. Today me and Erika had a long talk and she feels like she is letting Alicia down....... FIRST AND FOREMOST Erika you are an AWESOME Mommy. The sacrifices you are giving to be away from your, and I stress YOUR daughter are not hidden. I am very very very proud of you. You are a great Mommy. I promised you and Alicia from the beginning that I was going to see the both of you through this and I will forever hold my promise. If you feel like anyone looks down on you or questions why you can not be here all the time than that person is wrong for judging anyone. As long as we both know that you care and love Alicia as much as you do that should be all that matters. I want to let the world know that Erika is an AWESOME mom and I love and respect you forever Erika and I will bring your baby home to you soon!!!!!!!!!!!!!!!!!!!!!

These pictures show how much the both of you love each other and that you are here for your baby. Alicia adores her Mommy and Erika that makes me so proud...........................

look at the smile on Alicia's face!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!



And look at the smile on your face!!!!!!!!!!!!!!!!

And this picture says it all!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

4 comments:

Charisse said...

Dear Erika,
I don't know you at all, but I know that if you are stressing about not being with your beautiful little girl, that you must be an incredible mother! That says it all. It would be SO difficult to be away from your daughter throughout a transplant. I cannot imagine how stressed you would feel. I was looking at the photos that Michelle posted of you and Alicia. Alicia NEVER smiles that bigger smile, unless you are there! She must love her mother so much. You have the look of love in your face and eyes when you look at her! I completely understand, as a mother myself, that you would be feeling helpless with not being able to be at the hospital. Bless you Erika. That feeling probably won't go away because as mothers, that is what we do....love and worry about our children. Bless you heaps.
Love Charisse

Anonymous said...

It is great to hear you had another pass! Love, Dianne

Anonymous said...

Oh this is wonderful news!
Know that I'm here praying right now.
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

Anonymous said...

Continuing to pray so hard!
Psalms 91:3-4 Surely he shall deliver thee from the snare of the fowler, and from the noisome pestilence. He shall cover thee with his feathers, and under his wings shalt thou trust: his truth shall be thy shield and buckler.
Prayer Bears