Thanks everyone that has commented, e-mailed, and called me. We are doing fine with Emma's new 'probable' diagnosis and it's not really any shock to us. Though the difference between thinking that might be it and having evidence is different, I will admit. Regardless we are fine and so is she and we're still just loving every minute of her.
Also, to all who commented on the picture in that last post... I put it in sepia tones because of her yellowish features compared to now because that was taken the night before her open heart surgery laying on the bed giggling away (when she should have been going to sleep!) at the Ronald McDonald House :) But yes, her smile is vibrant and alive... but even before her surgery she had a gleam in her eye!
Tomorrow morning Mike and I are going to a brunch and will meet Nick from Life Without Limbs speak to parents and caregivers of children with special needs. My new understanding is that it's not just parents, but also possibly adults with special needs that will be attending. This is very different from what I originally was told as I was under the impression it was going to be "straight talk" and that's why they asked no children to attend (but they left out adults in that part...). Either way it will be a great morning and I look forward to meeting other parents and hearing Nick speak.
Tomorrow evening he is speaking at Park Avenue Baptist Church at 6pm and Sunday morning at 10am. These are community-wide events co-sponsored by Indian River City United Methodist Church. If you're anywhere nearby please come hear him speak! Overflow rooms are available and we're expecting a very full house!