A new direction.

We just got back from taking Gianna to Shriner's Hospital in Philadelphia for evaluation.

Background: We found out that our Dr. here has beeen, ahem... (how do I put this delicately?) less than forthcoming on the surgery he was planning for Gianna. The reality is, he can't do the surgery she needs, because HE HAS NEVER BEEN TRAINED TO DO IT!

Only he told us he could. More than once.

And the only reason I can figure that he would outright lie to us, and set a surgery date for March 17th, is because with the amount of surgeries she will need in the next 15 years, he stands to buy a bigger B*M*W for he and the Missus. On us.

Because, after the first surgery, basically NO ONE will want to touch her. EVER.

SOOOOO, this initial discovery, led us to further research, which led us to the great folks at Shriners. ( Who are, to date, THE ONLY PEOPLE doing the surgery that Gianna needs)

My dear, sweet, precious friend Mary was willing to brave airplane travel (which she is not overly fond of), getting lost in Philly AT NIGHT and IN THE RAIN, and spent hours at the hospital with me and Gianna. On my birthday.

She entertained Gianna at the perfect moments when I had to hear the Dr. or nurse. She schlepped our stuff, kept the medical records safe, and was another set of listening ears to hear info I am bound to forget. She was a calm and wonderful navigator. She even brought my birthday present all the way to Philadelphia, just so I'd remember it was my birthday too.
She is as true blue a friend as I will ever have! I Love you Mary!!!

And so, Shriners is our new home away from home. They accepted Gianna, and do not think she needs to be rushed into the surgery right now. We plan to re-evaluate in 4 months with her first surgery to be scheduled in the next 6 to 12 months.

And as Mary said, that is 6-12 months more of throwing her high in the air, of letting her run and play without fear of her falling, of jumping on a trampoline, or maybe a pony ride. Of leaving her for a night out without putting someone else in the enormous position of keeping her safe. That's 6-12 more months of letting her climb on a chair unassisted. Of swinging at the park or going down a slide.....

....You know, the things she will never be able to do again. (Or at least for a really long time.)

And so, I plan to SAVOR the next 6 -12 months with our little Caboose. And let her try new things. And take her to Disney. And throw her high AT LEAST 5 times every single day. And let her fulfill her *need* to climb on stuff. And ride a bike.

Because, in 6 -12 short months from now, our " new normal" won't include any of those things. And I am okay with that, because we have her and she is perfect.