I know it’s been a couple of days since I’ve last posted. The medical team has kept us unbelievably busy this week. Yesterday was a good day of education. Today we arrived at the hospital at 8 a.m. and didn’t leave until almost 6 p.m. The day consisted of more fasting & testing (2 hours worth of Sy having to lay completely still) and getting those fun, huge patches removed from his back. Think of it like removing duck tape from your back. He survived it like a trooper!! I have seen such an incredible side of my sweet boy this week.
I can’t get into all of details right now because I need to get packing… However, if you have a moment, I would selfishly like to ask for your prayers with making a HUGE decision. I was given two treatment plans to work with and neither is going to be easy. One is riskier because it involves using Sy in clinical trials… The other is making even more radical dietary changes which will be incredibly difficult for him. I need to give my decision by tomorrow morning–not that they are rushing us but b/c we fly out tomorrow afternoon. So I am asking for a Gideon moment. I am willing to do either or anything else for that matter… Regardless, my faith is not in medicine but in our great Creator. So, my fleece is out…
P.S. It is FREEZING here!! Sy has enjoyed the snow but I am so thankful for sunny Florida! Kudos to all of you who live in the cold. Brrrr….