I keep repeating the just a label mantra to the point where I’m actually believing it now. Today she was swinging on a band swing-the same swing typical kids have been swinging on forever. She held on tight and stayed Continue Reading
Heading home
With a bit of a heavy heart we leave our family in Texas today and head back home to California. We’ll be her only caretakers now and there will be little to no break. We’ll miss granny and pops and Continue Reading
On the road back from Houston
We’re headed back after an exhausting journey at the blue bird center. We got a lot of information. Some of it was positive. Some of it was less reassuring. I’ll update this blog with specifics when I have a minute. Continue Reading
Meeting with Dr. Motil
Tomorrow’s the day. Wish us luck. I know we’ve both been anxiously awaiting the opportunity to meet with the Blue Bird doctors since we found out and I’m not quite sure they’ll be able to meet expectations. We have our Continue Reading
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 Continue Reading
Stress level
It’s hard to keep stress low especially when the unknown is so vast. There’s only so much internet research I can do and not a lot is written in a language laymen can understand. As much as I want to Continue Reading
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 Continue Reading
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 Continue Reading
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 Continue Reading
Christmas
Christmas is fun because you’re with family and you can just relax. This Christmas was different though, since it was the first one after the diagnosis. We were all a little zoned out and I was very aware of the Continue Reading
