1 Corinthians 13:13

And now these three remain: faith, hope and love. But the greatest of these is love.

Wednesday, June 4, 2014

Catching Up

A lot of wonderful things have happened for Rachel since our last post in fall. The pictures and videos should speak volumes.

Rachel worked on her balancing skills in a pair of Barbie roller skates. She loved them and was able to do alittle skating while holding hands.

She helped her sisters cover our kitchen with homemade moon sand. Mix 3 parts flour with 1 part baby oil for a soft nice smelling moon sand. Fair warning it took a good week to get all of the moon sand washed out of her hair.

She grew cuter! Ha ha! She was always cute but look at how long that hair is getting. We are still holding off on that first baby haircut.

She had her first trip to the Shedd Aquarium. She fell in love with the jellyfish.

We took some amazing pictures at the Shedd Aquarium.


Rachel outgrew her AFOs with twister cables. "Look Ma I can't straighten up with these small braces!"

What is this? Yes that is right - independent walking! She started walking independently at the beginning of March. Another important detail in the 2 above pictures is that they were taken at her first orthopedic appointment at Shriners Hospital in Chicago. We are very pleased and happy being able to take Rachel to Shriners. They are first class all the way! How did we end up at Shriners you ask? Steve showed me an amazing video they had on their website. The young man in the video walked identical to how Rachel walks without bracing. We knew we could not pass up the opportunity for a second opinion from their orthopedic department. We knew just like with fetal surgery that going there was not going to cure or remove any of Rachel's birth defects but it would help give her a better opportunity to deal with the defects. To this day her stubborn clubbed feet remain our greatest spina bifida challenge.

She received her first pair of serial casts at Shriners. Her first pair went from her toes to her upper thighs. She was not a happy camper and let everyone know it. Being the on the go girl she is Rachel attempted to walk several times in these long leg casts. Here are some alternatives to walking we came up with:

This car propels by moving the steering wheel only. No foot power of any sort needed and no need to worry about her legs falling off the sides with the casts on.

A simple elementary gym scooter board- lots of fun and surprisingly can hold up to 175 lbs.

She wore down the tips of the long leg casts from trying to stand and walk in them. Rachel was going to prove to be a challenge. Her doctor, Dr. Altiok, made a compromise on the length of the casts. Rachel was able to walk in the short leg casts. 

Rachel graduated to being a big girl and going down slides on her own. Yes, I did have a tear in my eye over that. In the picture is the indoor play set located downstairs near the cafeteria in Shriners.Rachel adores this area. The pint sized princess demands playtime here at each appointment. Rachel continued with serial casting for about 6 weeks to prepare for surgery. 


Rachel at her pre op appointment at Shriners.

X ray of Rachel's left foot before serial casting started in March.


X ray of left foot after serial casting - helps show how necessary surgical intervention was. 


I love these little crocked feet. As I finish typing I am looking forward to being able to kiss them again. Rachel is currently in surgery at Shriners and I am in the surgical waiting room.












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