One face in 30,000 with CF

One face in 30,000 with CF
One of the many faces of Cystic Fibrosis

Saturday, October 30, 2010

Zoey the Dancing Queen


My fun loving daughter is full of energy. I almost have to remind myself that she has Cystic Fibrosis. I would love to live in denial and convince myself there was no diagnosis. More than anything I want Zoey to have a normal happy childhood, with no surgeries, no hospital stays, and no breathing treatments. Zoey Loves to dance. She can dance all day long, and run from one side of the house to the other. She will torture the dogs and just giggle and giggle. In those moments I can almost forget. Then it is time. It is time to force her to sit for an hour and a half and endure an endless line of breathing treatments. Why does Zoey, at 19 months old have to sit that long. Why can't she just run and play without a care in the world. My child inspires me. After everything she has been through in her short life she still loves to smile and laugh and play, and dance, there is always the dancing. Maybe when my MS is getting me down I should take a cue from my child, maybe I should just dance.  My hope for Zoey is that she will always be this innocent and care free. I dream that they find a cure for CF, then a cure for MS and we both can have a normal carefree life.

Friday, October 29, 2010

TOBI

Zoey is now on Tobi for 28 days. This is our first experience with Tobi. 25 days and counting. Zoey is our only child, I wonder how other parents get everything done. Right now we are doing treatments for about 90 minutes in the morning and 2 hours in the evening. My poor little pumpkin is on Xopanex, Hypertonic Saline, Pulmizyme, TOBI, and Qvar. Not to mention her chest PT, she is not big enough for the vest yet. My husband and I both trade off but it makes for a very long day. After all of that we run a feeding tube all night. Even with all of this she is still a happy little girl. I can't wait to pick her up after work, or go get her from her crib in the morning. It is hard to have a melt down when I see that smiling face staring back at me.


Trying the Blog thing!!!

     Well, I have been needing an outlet to talk about my joy's and sorrows in life. I am hoping in doing this I can connect with other CF families or other MS'rs to gain some insight into how everyone else handles this roller coaster ride.
     A short introduction to me and my family. In 2003 my eyesight got really bad and after fearing the worst, I was diagnosed with Multiple Sclerosis. I kept trucking along and trying not to let the MS get me down. I usually have one or two flare ups a year. I am fine right now so of course MS is not a bother, you will hear more about this battle as time goes on.
     In 2007 I met my amazing husband, who did not let my MS scare him away. We married in 2009 shortly after our most amazing daughter was born.  My angel, Zoey.

The bottom dropped out from the very beginning. I suffered from very bad post-partum depression. Then when Zoey was five weeks old new parents heard the most devistating news they could hear. Their new angel has Cystic Fibrosis. I knew very little about the disease. The thing that sticks in my head from that day is sobbing in the doctors office, and my doctor saying, if Zoey could choose her parents she did the right thing. I do my research on MS and he knew I would do probably even more for Zoey. He said we were the ones that could help her through this ordeal. I won't go into the specifics of CF but please get more information from www.cff.org if you are curious about this life altering disease.

Let the journey begin...



Zoey today