Wednesday, May 26, 2010

the way it is

Some times you feel down. Some times you look at your life and wonder.. where did you hit that fork in the road that changed everything? Some time you think that you have been let down.
Christopher is away in AZ on a business trip tonight.. im here, alone, awake, and exhausted, wondering why? why?? why do i have to deal with this? why does MY child have CF? why not my neighbor? why not my friend? well.... a little bit of knowledge was bestowed upon me tonight...
"she is here for u, not u for her"
Ive been doing everything, earthly possible, to help my daughter. to keep her going strong and living healthy. Eveerything in my power to keep her here a day longer with me. Then i read that.. BAM. it hits me. it hits me that its true. shes here for me. She is here to change me, to mold my life into something amazing, to make me who i am meant to be.
She is my love, my life, my everything. I wouldnt be with out her. shes my world. my baby girl.

Thursday, May 13, 2010

CHLA update +

Today we had our CHLA visit. I must say, it was THE best visit we have ever had. Aside from the constant scream coming from cookie, today was a pleasant day. We went in expecting the typical: need to gain more weight, keep the meds up, add more calories to her meals, increase meal frequency, etc.. well she some how managed to reach her goal of 50% for weight! They gave us the go ahead to add some veggies and fruit to her diet and we can start to sigh a little bit of relief as far as her weight is concerned.

I couldnt be more pleased. My mom came with me today to give Christopher some work time. He ends up missing a full day of work for these visits. I think she loved having her grandma there today, i know i did. So all in all, everything is good. lungs clear, they did a throat swab, gave us some refills for creon 6k, they asked me to write down a few recipes that have helped cookie gain her weight so she can pass them on to other new CF parents, and her o2 sat is 100% like always!