The countdown begins.

So, we are within weeks of going back to Augusta, GA for the stem cell infusion.  If Drew didn't get his stem cells on Feb 15, then he is FOR SURE going to get them on May 24.  I am not nearly as excited as I should be. I had enough excitement and hope the first time.   Everyone is telling me they are 'sure' he got the placebo in February.  Not much has happened since then.  What if, what IF, he actually received his stem cells in Feb?  What IF he receives them on May 24 and we still don't see any changes?

Everyone is telling me not to think like that.  But I have to.  I have to prepare myself for the fact that maybe, despite all of our hopes, this treatment will not change Drew's life.  I stand by my belief that Drew is already perfect...we just want him to be comfortable.  So, it is what it is.  BUT, I see him struggle every single day against whatever restraints he is in--wheelchair, AFO's, Immobilizers, etc. There is no seating system I have seen that is comfortable to him.  Bean Bags, Couches, Me, pillows, air mattresses, what have you.  He just wants to MOVE.  Even the standers/walkers can't make him happy.  He struggles against everything. His body does the exact opposite of what it should to be comfortable.  It breaks my heart.

So, as I watch my son sleep on the couch next to me tonight, after being up most of last night, whining in pain, despite his meds, I pray from the bottom of my heart that there is something better on his horizon.  I am dedicated to his well-being and happiness--but he deserves so much more that what he has been dealt.  I just pray for his comfort and his body to do what he wants--even just a little bit.

Sorry for the honesty, thanks for reading, and pray for Drew for a brighter future.  He is the toughest kid I know and still manages to love life and smile every day.