We received the news in regards to Lacy's genetic testing for her CCHS. It came back positive. Now, with a few days to think it over, it's really not all that big of a deal. However, those first few moments were a bit of a shock. Mostly because I allowed myself to believe that she really didn't have this diagnosis and it was just an airway problem that needed to be fixed. So much for that plan, huh?
I have since joined a network of families with CCHS and couldn't be any happier! It was such a relief to know that we weren't the only family dealing with this situation.
I will blog more about it all later, but I just wanted to let you all know that the testing was finally back.
-Jo
Thursday, October 11, 2007
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1 comment:
if i have learned anything from parenthood it is that you can plan, but the plan rarely seems to be the end result. understanding that makes some of the things that arent included in the "plan" easier to cope with.
i didnt realize that this was the condition that lacy was thought to have. seeing her through your blog, i would have never suspected that she was "ill" (i use that term for a lack of a better word) other than the visual of the trach(???). i can understand where you thought it was something that could be fix and forgotten.
none the less...
the last line of the summary of your CCHS link should be the new plan though. "...these children can have good outcomes and lead productive lives." with your love, support, and care lacy will have, with out a doubt, every opporunity to be one of those children.
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