That's what life is starting to feel like now. We've been standing still for so long, without any progress that we are actually going backward. We are starting to feel dizzy and shaken. I am flabbergasted that we are well into our forth month at CHOP. It's gone so fast yet so painfully slow at the same time. Xavier has definitely made progress...progress that amazes the neurology team. His surgeon tells me over and over "all that matters is getting to the top of the mountain..don't dwell on how long it takes to get there". Xavier is doing things that, quite frankly, many professionals here never imagined possible and that's without any intense rehab. "Imagine what he will do in rehab" they say. "Now if we can just figure out a way to get him and keep him there"...,
Nate and I were both frustrated and we were not afraid to hide it when they brought X back to the floor. We felt like we were not being heard and basically ignored. And although we agree that rehab needs to suck it up, educate themselves and get better prepared for Xavier's return...the 6th floor is where he needs to be right now. We still have some kinks to work out with his plumbing. The most frustrating part is that what will really help get his new circulation working right is getting up and moving, but rehab will not take him till he is in a better place medically and so round and round we go.
If he can't go to rehab right now, I am on a mission to bring rehab to him. There is nothing like a heart mom on a mission. I requested advance rehabilitation equipment (available and not being used downstairs) be brought to him and a sit down, face to face meeting between both teams. I will except nothing less then the best for Xavier, nothing else will do. We have always received excellent care from the cardiac center and we we will settle for nothing but excellence from rehab (this is after all the best hospital in the country)!!!!
The ground beneath our feet is shaky right now, no question. But we are stronger than ever, and being held up by all of you. Your prayers, well wishes, kind words and gifts have kept us upright. We ask you to continue to walk with us, help us raise awareness and keep us standing...until we find solid ground once again.