Meet the McNeil Family

Meet the McNeil Family

Wednesday, February 13, 2013

New Fashion Accessory

These are Waverly's new orthotics. Her walking has grown increasingly worse over the past few months.  We saw an orthopedist who wanted to do a minor surgery on her knees to try to straighten them as they continue to grow. We did not want to move forward with surgery, unless it was absolutely necessary. We met with our usual physiatrist and she made some recommendations, but given the severity of the changes we were seeing I wanted a second option. Our geneticist recommended someone new and he was fabulous. He wanted to go a different route with the orthotics and he was adamant against surgery. Both Matt and I felt confident in his ideas, so we had his team cast Waverly for a new style of orthotic.

They arrived about 2 weeks ago and thus far, we are seeing some minor improvement. Wavey tends to crouch when she walks - hips turned in and knees bent. Her feet also turn in and cause her to stumble. The change to her right leg is wonderful - knee is pulled back and her leg is much straighter. Her foot makes a full strike on the ground, instead of toe walking. Her left leg is still bent and she has more difficulty moving her leg fluidly. We will meet with the doctor again in a few weeks, once she gets comfortable in them to reassess her gait.

We are so desperate to keep her on her feet, knowing that walking with keep her body healthier. She is becoming so stiff. Each morning she wakes up crying, unable to stretch out her legs from her curled up sleep position. I have to massage her legs and stretch them out for her. She cries as she takes her first steps and each day I wonder if her little legs are simply not going to be able to withstand it any long and give out.

Sunday, February 3, 2013

White House

One of Matt's colleagues graciously offered to give us a private tour of the White House this afternoon. We were able to take both of the kids (hooray for the ADA and full accessibility in the White House). It was a very special moment to take the kids inside. And as I leaned down to tell Waverly that was the Oval Office where our president works, I actually got teary eyed. I know she didn't understand, but I was moved to have her there seeing such a special room that holds so much history. While we weren't able to take photos in the West Wing of Rose Garden, we were able to take some outside and in the WH Press Room. Another great memory made for our family.

Daddy's Home!!

Matt spent all of last week in the Democratic Republic of Congo for work. He typically travels a few weeks each year. This trip was different given the remoteness of the country and lack of infrastructure. Internet was spotty, so we weren't able to Skype at all and even email messages were occasional. It was tough not being able to talk with him each day.

The night he was supposed to leave, his flight was cancelled. I was in tears when Flight Tracker alerted me. I was so ready for his return home. Thankfully, he made it home only 1 day late. Yesterday afternoon the kids and I met him at the airport. We had a fantastic reunion and we are so happy to have him back where he belongs.