Well, things are still about the same here. Jason did put him on his play mat for a while today and he enjoyed that; he also had a REAL bath in his tub. The congestion is bad at times, but he's smiling and even starting to "talk" a little. His sleep is troubled because of all the problems he has with his secretions. Someone is with him on the couch almost all day and all night. We can barely get his grandma to go sleep; she ends up spending the night with him most nights.
I keep hoping to wake up and find that this has all been a dream. I was always one of those people who never wanted kids, didn't like other people's kids. I was quite happy with my life, married to Jason, mom to 3 cats. Eli was a big surprise and I had mixed feelings on being a mom. Once he was here, I was in love. He has become my life, my world. I can't even begin to imagine not waking up to see his smile. I'm not even sure how I would make it through a day without him. I now can't picture a life without children. If we get a SMA diagnosis, that will be the future that we are facing. There would always be a 25% chance that any children Jason and I had together would inherit the bad SMA genes; we are not willing to take that risk. I don't know what we would use to fill the void that a childless existence would leave; I just don't think anything could.
Please keep praying for us. I can't lose my little man; not this early. I have so many plans for his future. We have a shelf of books to read to him; toys to help him learn; clothes all the way up to 5T. I need a buddy to take to the Astros games with me. We just can't make it through life without him.