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.

4 comments:

MariYukina said...

You're absolutelly RIGHT! Surgery just in last last laaaast case. I have severe knee problems and never did any surgery. Many doctors tried to say how fabulous the surgeries are, but the majority of them is soooo against it, cause after that, it's over, and the knees will never be the same again. So I'm just happy with my crutches, and surgeries would not help me anyway (since I have a degenerative disease, and that's why my knees are deformed firstly). I hope Wavy gets better, really, I read the entire blog and now I know how difficult MPS can be, but your kids are more than sanfilippo, they're such amazing children and I continue giving my steps with their support, really! They are my inspirations. My disease just affect my legs, so I'm fine, but sometimes when I get tired and sad, wanting to give up, I think about Waverly and Oliver and I feel stronger. I love them with all my heart! God bless all your family. :)

Julia said...

Her new orthotics look like little knee high boot. Very stylish I must say! I hate that she is having so much pain when she wakes up :(!

Anonymous said...

i found your blog by chance 2 or so years ago, been a regular reader since. i have never commanded, but please know you are in my thoughts and prayers. with love from germany, isabel

Messy and Wonderful said...

I know you feel so alone much of the time, but I want you to know that I read your blog every week. Although we don't know each other personally, when you lament, I lament with you, and when you rejoice, I rejoice as well.