Waverly's Walking

Waverly's Walking

On Friday we took Waverly to Children's to see a physiatrist. Unfortunately we weren't able to get in to see our usual doctor, so we had to start over with someone new. Wavey's walking has gotten worse the past few months. She seems to be in pain at times and limps. We wanted to see what we could do to try to keep her mobile for as long as possible. The doctor was nice, but not at all familiar with MPS. He described Waverly's walk as a "crouch walk" - bent knees, with pressure at the hips. He recommended Toe Offs. (If anyone has any experience with these orthotics, please let me know.)

We also saw the orthopedist yesterday. We wanted to be sure there wasn't a skeletal issue in the hips that was impacting her gait. After a quick exam and some hip x-rays, everything looked good.

Oliver has an appointment next month with our usual physiatrist. I am going to bring Waverly along to the appointment, just to be sure she agrees that we try the new orthotics. I trust her opinion more than anyone else's.

We will continue our stretching and exercising. Hopefully, we can keep Waverly on her feet for a long time. Spring and summer means lots of outdoor play, which is so good for her.

Comments

Welcome to Holland

By Emily Perl Kingsley

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland.""Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."But there's been a change in the flight plan. They've landed in Holland and there you must stay.The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.