I was cleaning out my--ahem--slightly messy office and found the original information we were given about CCMS by our geneticist on Abby's Birth day. Rereading that ominous report made me shake my head and wonder if the doctors were trying to prepare us for the worst or just scare us. Honestly, I'm not sure it really prepared us for much. My own research did that much better than the two page summary did. But it did succeed in scaring us!
After rereading this I decided to google CCMS, which I do periodically just in case a new miracle drug is created that will put Abby's ribs all back together and make her jaw grow to typical size. Turns out, that hasn't been created yet. A girl can dream, right?
Anyway, I was reading through a bit of research and the common theme in all of the major articles is that early aggressive intervention is a key component in long-term survival. Because of the rarity of the syndrome, no one really knows the life expectancy. We do know that statistics say the mortality rate is somewhere between 60-70% within the first year...but we all know how God feels about those statistics, now don't we?! But with agressive intervention, the outlook is much better!
I have said this many, many times: I am thankful for every minute I have with my girl. I won't get tired of cuddling her or watching her sleep, and I will enjoy playing with her and helping her to live her life to the fullest. Mark Schultz's song speaks volumes: "I wanna give her the world, I wanna hold her hand. I wanna be her mom for as long as I can. And I'm gonna live every moment until that day comes. I wanna show her what it means to be loved."
That being said, I'm thankful for the aggressive treatment she received. I think it truly might have saved Abby's life.
After rereading this I decided to google CCMS, which I do periodically just in case a new miracle drug is created that will put Abby's ribs all back together and make her jaw grow to typical size. Turns out, that hasn't been created yet. A girl can dream, right?
Anyway, I was reading through a bit of research and the common theme in all of the major articles is that early aggressive intervention is a key component in long-term survival. Because of the rarity of the syndrome, no one really knows the life expectancy. We do know that statistics say the mortality rate is somewhere between 60-70% within the first year...but we all know how God feels about those statistics, now don't we?! But with agressive intervention, the outlook is much better!
I have said this many, many times: I am thankful for every minute I have with my girl. I won't get tired of cuddling her or watching her sleep, and I will enjoy playing with her and helping her to live her life to the fullest. Mark Schultz's song speaks volumes: "I wanna give her the world, I wanna hold her hand. I wanna be her mom for as long as I can. And I'm gonna live every moment until that day comes. I wanna show her what it means to be loved."
That being said, I'm thankful for the aggressive treatment she received. I think it truly might have saved Abby's life.
Comments
God bless you
Take care
God bless you
Take care