BlessedbymyGirl36
New member
Carrie,
Isn't it amazing how much you learn from looking things up. I don't know why but the only thing I ever knew about Erin (technically) when she was diagnosed was her sweat score which was in the 60's i believe, maybe it was the way the doctor brought us into the disease, it was more how we could adjust and she would be healthy than technical. Although I'm assuming it's because there wasn't a delay in finding out information as well. I know that as of yet she hasnt tested for the pseudemonis (sp on that) bacteria. They say she probably has it but each time they test it's negative, and she doesnt get "very" sick that often at all, so who knows. When we go into the hospital Erin has student nurses (since she was a baby) and she shows them how to run the pump and flush the I.V. at 11! <img src="i/expressions/face-icon-small-blush.gif" border="0">) My hard part as a parent that I am coming to is with her getting older she is going to find out more about her disease. She knows there isnt a cure and that people pass from it, however she does'nt know it's "terminal" or the average life span. I've kept that from her for as long as possible, she'll have enough time to stress on it for the rest of her life. I think I will ask some opinions on here as to how to deal with that, without scaring the beggeeezzes out of her. I showed her parts of this website and the area for kids and she really loved it, but I don't want her wandering around. Okay well time for a shower while jake is in school for a wopping 3 hours!! Take care xNichole
Isn't it amazing how much you learn from looking things up. I don't know why but the only thing I ever knew about Erin (technically) when she was diagnosed was her sweat score which was in the 60's i believe, maybe it was the way the doctor brought us into the disease, it was more how we could adjust and she would be healthy than technical. Although I'm assuming it's because there wasn't a delay in finding out information as well. I know that as of yet she hasnt tested for the pseudemonis (sp on that) bacteria. They say she probably has it but each time they test it's negative, and she doesnt get "very" sick that often at all, so who knows. When we go into the hospital Erin has student nurses (since she was a baby) and she shows them how to run the pump and flush the I.V. at 11! <img src="i/expressions/face-icon-small-blush.gif" border="0">) My hard part as a parent that I am coming to is with her getting older she is going to find out more about her disease. She knows there isnt a cure and that people pass from it, however she does'nt know it's "terminal" or the average life span. I've kept that from her for as long as possible, she'll have enough time to stress on it for the rest of her life. I think I will ask some opinions on here as to how to deal with that, without scaring the beggeeezzes out of her. I showed her parts of this website and the area for kids and she really loved it, but I don't want her wandering around. Okay well time for a shower while jake is in school for a wopping 3 hours!! Take care xNichole