Monday, April 26, 2010

Wednesday, April 21, 2010

How we got to know Cystic Fibrosis

Here is a quick back ground on how I became a mommy to a princess with Cystic Fibrosis. Through my whole pregnancy with Courtney every thing was fine. I had a c-section with her by choice, I had a c-section with my oldest so I figured I would with Courtney also so my parents could be there. When she was born she weighed 7lbs every thing seemed right. She slept almost through the night she would eat but then would be hungry again soon after had nasty smelling diapers, she was never really sick. At all her check ups things seemed to be fine.

6 month check up her pediatrician didn’t like where she was for weight or height thats when she told us that she had been watching it. So the fun began of tons of pokes for blood draws for this test and that test. When all those test came back fine she sent us to John Hopkins they did a test that came back negative and then they did the sweat test. I remember that phone call they told us to come in they wanted to talk to us. We were told that is was positive and that she has Cystic fibrosis she was 9 months old when she found out. From August thru November she was admitted to the local hospital for breathing problems I believe it was also November she had pneumonia and boy did I feel like the worst parent ever she has been acting fine. The whole time we were going to John Hopkins she was admitted once because she had cultured Pseudomonas aeruginosa she came home on IV’s and boy was I scared. As I look back on that first time I have to laugh because I am no longer afraid to do her IV’s. I liked her doctors at John Hopkins don’t get me wrong but she has such a better doctor now.

In 2006 we moved to Huntington Indiana since that is where my parents were and so I could get the help when I needed it. It meant a whole new clinic we could have gone to Riley’s Children’s hospital or Lutherans Children’s Hospital well we went with Lutheran because it was smaller but also closer. I soon find out that Courtney would only have only one pulmonologist and I liked that idea because then we were on the same page and Courtney didn’t have to learn to trust to many doctors. It didn’t take me long to fall in love with her CF team. I don’t know what I would do with out them. Her doctor soon changed and played around with her medication. Yes she is on a lot of medications it seems like but if it keeps her healthy and gaining weight so be it.

I think with her only have one doctor she has learned to trust her and also they have a bond. Courtney may only be 6.5 years old but in the last year I have made her answer most of the questions that the nurses and doctor ask her. Some may think that is wrong of me but I am not always going to be at her side when she goes. I also think it gives her some feeling of control. We have been hospital free for a little over a year and that is great but at times I find my self waiting for the other shoe to drop. I let Courtney be a normal child, she goes to a public school she plays outside she gets dirty, she does dance she swims at home or at her grandma and popops house in the summer this fall she may be doing soccer the ONLY THING I DON’T LET HER DO IS DRINK OUT OF WATER FOUNTAINS!!!! She is my princess and my lil trooper . Sorry that I have jumped around a lot in this post but trying to go back 6.5 years is hard to do sometimes.