Leaving for Houston

Can’t sleep tonight.  I think I’m nervous about what I’m going to learn in Houston.  We’re headed to the blue bird center-which is like the mecca for Rett research-on Wednesday but leave for Houston on Monday.  We’ve found it’s best to get her comfortable before meeting new doctors.  She’s not that much fun when she’s[…]

Games we play with our special girl

Every time I try to play a game that I would play with a typical 3 year old, our little one ignores it.  No block building, hide and seeking, peek a booing, puzzle solving, pat a caking, red rovering, freeze tagging or any of those for us.  All she does is pick up a toy[…]

Unreal

As I reflect on 2013 I can’t help but realize how unreal the diagnosis is. As I look forward to 2014, I can only hope the decisions I make for her and for our family lead us on a path that will give her a full life and leave us without regrets. Maybe that’s too[…]

New year’s

I think it’s safe to say I’m welcoming the end of the year with open arms.  2013, while great for me professionally was one of the hardest years imaginable in my personal life.  Looking over our application for a clinical trial I realize that our daughter stopped progressing at about 28 months.  And truthfully I[…]