Tuesday, January 13, 2009

Morning Update 1/13

We FINALLY made it down to surgery today and everything went as hoped. Now we just have to see how he does getting back off the ventilator. He had some breathing issues again last night and they went back to using the oxygen mask. I'm a little worried we will have some issues with him waking up and getting back to "normal" breathing, but we have everything in place now that we shouldn't be forced to keep or do anything we are not comfortable with.
These are some older pictures, but I needed to share....we hope we get our little boy back soon. He is just struggling now and I hope we can take him home soon and get him back to smiling.


Murphy's Law said...

Hi Rita & Family,

I'm so sorry to learn of everything you are going through right now. A friend asked me to stop by here to see if there was anything I could do to help.

6 years ago I had a little boy with Type I SMA also; he was a little more than 4 months old when we lost him, after much heartache in trying to decide which path was best for him. It's a really rough road no matter what you choose, and I hope that you don't have to travel it alone. If you have any questions or need anything, please feel free to ask.

Laurie Potter

Ginger said...

Rita, i have made a thread about your situation...so please know that we ARE ALL thinking of you and little Eli every second!!!!! Let us know if there is ANYTHING ANYTHIGN we can do for you....