It is just a blah time here at home right now and I figure most people don't want to hear about how smelly we are from not showering or how we are sleeping most of our days away. We made it through Christmas with lots of tears and they continue to fall as the anniversary of the worst time of lives come to pass. Tomorrow will be a year since we found out about SMA. I don't have a lot of memories left from the bad times, but I remember the doctor telling us that was their probable diagnosis and then hesitating when I asked what the prognosis was... It felt like a hit and run because she told us he would die before he was 2 and then left us to cry. She did come back later, but she was not comforting to me in any way. The whole initial experience in the hospital was horrible and I'm still angry that we had such uncaring doctors who never had Eli's best interests at heart. I'm so thankful for Dr. Erikson, Dr. Northrup, and Dr. Mancias who all worked with us during our second hospital stay.
My friends at Merry-Go-Round came through again and they were able to order 100 more crab toys for us to take down to the children's hospital on Eli's angel day. It won't stop the pain, but it will at least be something we can do in remembrance of that wonderful son we got to love and hold for such a short time.