Toward the end of camp, I spent an entire 5-hour day working as Jessie's assistant and realized just how physically challenging it can be to manipulate these children. I also realized that as hard as it was to help Jessie move around, it will be infinitely harder when she is an adult if she has not learned to get herself into and out of her bed, the car, shower, or toilet. I am determined to do all I can for the next 14 years to help Jessie learn to crawl, walk, and transition so that her life and my life are manageable when she is an adult.
What improvements have we seen in Jessie since completing the camp?
The biggest improvement I have seen has been in her trunk stregnth. Jessie can sit in a criss-cross position now almost indefinitely with a better more upright posture than before. Her posture fluctuates when she is tired or when her legs are stiff, but overall it has definitely improved.
Jessie can hold the quadruped position (on hands and knees) longer and will allow us to manipulate her through crawling. Having a motivating object and using the elbow splints help tremendously. Jessie loves watching Elmo and Barney videos, so I have been using my laptop computer as a motivator to get her to crawl across the room and it works great. We are hoping to get an iPad so that she can play interactive educational games after crawling across the room.
Jessie's walking did not improve as much as we had hoped for a few possible reasons. She began using the ladder/slider instead of the reverse walker at camp. This device is helpful because it makes Jessie stand more upright and bear more weight in her legs. However, it also makes it harder for her to complete her steps because she can not use her arms and hands to help bear her body weight. I also noticed her abductors and hamstrings have been very stiff which causes her legs to scissor more when she takes steps.
After the first two weeks, Jessie seemed to be improving with potty training and had 2 days where she stayed dry and clean almost all day. Unfortunately, that trend did not hold and we were back to 50/50 success with potty training in the end.
At camp, Jessie tried out a Freedom tricycle and really seemed to enjoy it. She began controlling the pedals herself after 10 minutes on the bike. We are going to look into getting one of the tricycles for Jessie to use at home. On the last day of camp, they had a swimming party and a little graduation ceremony. It was inspiring to see the progreess that each of the 25+ kids made this summer at camp.
It has been an exciting and fun summer, but we are all ready to get back home and into our normal routine!
