I am stuck. There is a neuro in Chicago the specializes in kids like Noah. He has offered to look at Noah's MRI's and read over his medical records. He may be my only chance to ever really know why Noah had the condition that he did. I know that the odds of getting a true diagnosis are slim, buy this doctor has actually seen patients like Noah, unlike our doctors. The problem is that I can't bring myself to get the medical records together. We have been told by 2 geneticist that the chance of reoccurrence is slim, but I still wonder. A part of me wants to know for his surviving twin's future children. I think I am procrastinating because this is the last thing to be done in regards to Noah. I am not ready to be done. I want more things Noah. I am also afraid that it will be genetic. It seems easier to just bury my head in the sand. What do I do?

Oh Jennifer,

What a tough situation to be in. I can relate to how you are feeling, especially not wanting to be done and have everything finished. I know the feeling of wanting more. If there is anything I could say to you it would be that getting his records together and finding out wont be the end.

There will be anniversary's of certain days and birthdays as well that you will be able to do special things to remember your sweet Noah.

Don't rush anything :)

Thinking of you :)

Love Carly x

Jennifer, I hear ya. When I hung up the phone this spring, I knew that was it. That they had done everything. And my god, did they do everything. And now they were putting her in the "we don't know; hope something turns up" file. And that kinda sucks moving forward.

Not for nothing, but really I think this is incumbent upon YOUR doctors, right now, to send the information over -- not you. If this guy has agreed, I think a phone call to your docs is in order (if you'd like to do this) and tell THEM to send everything to this guy in Chicago. YOU shouldn't be the one running around and mailing things, unless you really want to, and I know I wouldn't.

My attitude was this: worst case scenario, the answer will be "I don't know." But at least then you'll know you've done everything you can, and no stone has been left unturned. Best case, they might actually find something, and remember if they do find something genetic, it means in a future pregnancy you can find out sooner than later (at 11w, to be exact). I know that's not everyone's dream scenario, but it sure is mine.

I'm really very sorry. No parent should be left asking these questions and making these decisions. Ultimately, you need to do what's best for your mental outlook, and if that's moving forward, yay. And if you're the kind of person who'd rather just leave it (and I get that, I really do), then you say thanks, but no. take care.