Saturday, November 2, 2013

Natural History study, Chicago style

We move a lot. It's true. And yet, every time we move, things just seem to fall into place. When we moved to California, we didn't realize we were moving to the perfect place for Leah to be diagnosed and begin her treatment for Rett syndrome. But with Katie's clinic and some fabulous families, that is exactly what happened. 

When we drove 3,000 miles across the country to New Hampshire, we had no idea our new neurologist would have a background dealing with Rett syndrome and would be the perfect fit for figuring out Leah and her seizures. But he did, and he was. 

And then, when we moved halfway back across the country to Iowa, we didn't realize we would again be within easy driving distance of Chicago and one of five locations for the Natural History Study for Rett syndrome we have been participating in since 2010 (two of the others being Boston and Oakland) . Okay, maybe we did know that this time. But it is still uncanny how things work out.

So, this morning, we headed a few hours east to Chicago. After a quick pit stop at IKEA, we found ourselves at Rush University mingling with our new Chicago Rett family. Some we knew already, some we know from connections online and some were brand new to us. But they are all family  nonetheless. 

It was a long day. We were in and out of appointments from noon until 5pm. But it was so great to catch up with friends and doctors. Get our questions answered and get some umph to carry on for the next six months. Kate even participated in a sibling study and got some blood drawn for her big sister. 

After the study, we were able to enjoy some dinner with two other families and I somehow didn't get a picture. That shocks even me!

I have to admit, it is also very humbling to be in a room full of girls and women with Rett syndrome who are at varying abilities. We are very grateful for Leah's health and mobility, her pleasant demeanor and her overall patience with us. She is part of an incredible group of girls that we are more than proud to know. 
 Angie, mom to Ellie, who I first met in Boston at my first conference 2.5 years ago.
 The incredible Jennifer, mom to Jilly, who I met in Boston at the conference and got to know in New England.
 The lovely Kate and Dr. Kaufmann from Children's Hospital Boston.

Sweet, sad, Katers. The things you'll do for a sister.

1 comment:

Kelli Marshall said...

best sister ever, Kate.