One face in 30,000 with CF

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

Sunday, October 2, 2011

News news news

I am not very good at blogging these days. And this one will not be very long. My daughter broke 3 keys off of my computer and it is hard to type.

Everything is going well. I like staying home and I am hoping i get my disability so I can keep it that way. My husband and I are thinking about me going back as a substitute if I don't get disability. Going the substitute route I can have a little more control over when I work and don't work. It would be hard though after ten years of teaching in the same classroom.
Zoey is a little monster but she is a cute little monster. Here are some terrible two's tales...
-She dumped a whole thing of salt on my kitchen floor.
-She fed her crayon to the dog.
_She pulled her feeding tube out of her belly a couple of weeks ago. And by the time I discovered it the sheets were covered in peptaman Junior.
-she colored on my kitchen table.
-I refused to fill up a spray bottle for her because she chases the dogs spraying them with it.... she got mad at me because I would not fill it up so she filled it up in the toilet. :)
-Her favorite line is "I'm gonna getchoo momma bed" In Zoey language it means chase me and throw me on the bed momma.
-More favorite words...."oh crap"....."no"....."mine"...."my spot".... "go" and she points her finger telling me or my husband or the dogs to leave the room.

She keeps me on my toes but I am loving life at home with her. I can actually understand what she is saying to me now. I feel like I actually know my daughter.

The feeding tube situation was an ordeal. I had to take her to the ER at 1AM to get a smaller tube put in because the stoma closed a little bit. But her GI was able to get it back in 3 days later without surgery and I was very thankful for that. The er visit the night it happened was not fun though. People, even doctors are clueless. Well here is a clue for those of you out there that do not get it...a CF mom DOES NOT want to talk about the prognosis for their child so don't ask. And, a CF mom is not clueless to her childs health and we know what we are talking about. So when I say you wont get the tube in, it closed a little bit...believe me I have been doing this for two years, I know what I am talking about. The doctor would not listen to me and tried to force the original one in hurting my child and making her scream. He finally said "well we will have to put a smaller one in" You think? That was the first thing I said to him, put a smaller tube in, but he had to prove me wrong.

Zoey has a nasty cough right now and that is not fun. She has moments where she will cough and cough and cough without a pause. Then when she is finally done she yells  owwweee! No matter what my girl has lots of spunk. I wish there was more I can do for her but we just have to wait it out.

Here is a picture of her drinking half and half in a restaraunt and calling it coffee, and a picture of my poor computer. I hope everyone is doing well and I will try to blog a little bit more.

 This was the day we had the feeding tube put back it. She finished off her lunch of half and half with a bowl of ranch dressing. She did not want her grilled cheese sandwich just the ranch.

 Zoey supporting the University of Utah
My new hair cut and color. My husband put on rubber gloves 2 sizes to small for him and helped me color my hair, with me out of work we can no longer pay someone to do that is true love!