One face in 30,000 with CF

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

Tuesday, July 19, 2011

Reflections

I feel like what my life looked like six months ago is showing a completely different picture. I am loving staying home with Zoey but not seeing my students anymore and teaching is hurting a little bit. I know I am doing what is best for me and Zoey but I still have the "what if" thoughts. My comfort is that I have a year to go back. Going back may be a possibility if we cannot make it without my income. It is all scary.

Zoey is doing great other than we are working on feeding issues with her. She eats okay sometimes but she has a very limited amount of food she will eat, we are trying to change that. I know, I know, I know, I hear all the time it is her age, it is normal. The problem is she has CF, she has got to eat or we are never going to be able to back off of the feeding tube. Plus, she was evaluated by our local child development group and she is not where she needs to be for her age, so she qualified for a speech therapist to come to our house that works on feeding issues. Zoey loves her, she always has fun new games for her. The next time she comes we are going to have a fun tea party. All I can say is I am the Mommy, I know what help she needs. I just wish people would realize that Zoey is not a normal child, as much as I try to keep her childhood normal. I know what I am talking about when I say she has feeding issues. She HAS to have calories to keep her lung function going. The only thing I can say to the doubters in my life is, unless you are walking in my shoes stop judging me and stop telling me "let her just be a kid" and "oh that's normal" or my personal favorite "you keep her in a box". Well normal and just a kid for her is different for a kid without CF. I am doing the best I can to keep her healthy so she can have a normal childhood. And I can proudly say she is healthy and is having a normal childhood, but not without a lot of work on mine and my husbands part.

My health has been pretty good. I knew as soon as I removed some stress I would feel better. I still have some pretty bad fatigue but now I am home so I can take a nap with Zoey if I need to. I do have weak legs from the last attack but all I can do is work on getting strength back in them. The heat does bother me, so I try to stay inside during the hottest parts of the day. I have limited feeling in my fingertips in the left hand. That has been for about 2 years now. I am thinking that part of my brain is not going to heal itself and I am going to just have to live with it. It used to drive me crazy but I have adapted and now it is my "new normal" Plus in the grand scheme of things it is really not that big of a deal, it could be so much worse.

I have started making bows and tutu's. More for my sanity so I have a project and don't go crazy at home. I am just starting but if you want to see what I am up too, it is on a new facebook page I have called Zoey's Closet. Come visit us anytime.:)

http://www.facebook.com/?ref=home

I hope everyone is having a great summer!

Wednesday, July 6, 2011

Wordless Wed.

Zoey making cookies and licking the beaters and licking the dough off the counter. It was eventful. I turned my back for a second and when I turned around she was picking up handfuls of flower out of the bowl and throwing it all over the kitchen.