When I first found out what was wrong with Crystal, I quit work immediately. I couldn't imagine being able to trust others for her complete care. I was sure it would be available to her to make sure that she was safe and kept healthy, but I just didn't see that anyone would put forth the effort as Mom.
I work with Crystal everyday, at scattered times all through out the day. I keep a schedule on what muscle areas we are reaching with each activity and I ALWAYS let her be my guide to what she can tolerate.
I started out being brief with her sessions, and gave lots of rest times. Gradually I made the sessions last longer and longer increasing the times once a week or so, until she was at her maximum ability and tolerance level. I also grew in my expectations of her a little at a time.
We do have testimonies when I was going to school full-time taking my first medical class and just didn't have time to work with her and still receive a good grade in the class. I watched during that 16 week period, Crystal get weaker and weaker by the week. She got floppier and fatigued easier as well. Then I had a month break in between semesters and slowly began approaching her with therapy. The good news is that she came back to life. It took almost the whole month, but she was able to go back to her originally abilities. Needless to say, I only attend school part time now.
The reason why I let her be my guide is that I figure that she is not going to push herself into fatigue. When she is tired she just stops. When she says she is done, then I accept that. I have seen her play real hard on some days, just overwhelmed with excitement that it even interfered with her naps. But the next couple of days she would suffer from fatigue. She would be weaker and floppy and even unbearably cranky. So I even put a limit to certain types of activities and I am religious about her sleeping schedule. 12-3pm is naptime and 8pm to 7am is bedtime.
It is my hope and desires that maybe we can spark some fresh ideas into other families in regard to strengthening play issues with their child. I know from experience how hard it is to keep these children entertained and age appropriate with their play.
Although this play therapy technique wasn't my idea, as soon as I saw how happy it made Crystal and with there being so few activities available for the legs, combined with the trunk, I immediately added this to our list of play therapies as well. Included in the picture is Crystal's Developmental Therapist, Jill Cannon.
Crystal's therapist all taught me how easy it was to get just a little more exercise for Crystal by helping her clean up her toys after an activity. I always hold the container away in different locations to cause her to have to reach using more trunk, head and arm control. The wonderful thing about this activity is that she actually enjoys cleaning up her toys.
This is a self help skill that I learned from Jill Cannon, which helped me recognize the importance of teaching her and keeping her active in applying methods for her self help development. She puts as much effort into helping me get her dressed as she can and she practices with clothing her babies. Crystal's sister Bambi is helping her in this picture.
This is the hardest for Crystal, but she absolutely loves it. I am holding her bottom assisting her so she doesn't fall forward or back. I also have my fore fingers just below her tummy to give just a little trunk support. When she tires I may, with my thumbs under her buttocks, help lift her legs to move them forward. Often she will drag her foot forward on her own.
I know this looks rather strange, but Crystal likes it because she can twitch her butt around and bend her knees. I am grateful she enjoys this type of activity.
I would never be able to accomplish therapies like this if she didn't have such a strong desire to walk. I pray everyday for a cure, because some day I may have to tell her that she will never be able to really walk. Right now she is satisfied with what she can do.
I am Crystal's slide. This technique applies fun to working hard to hold her head up. She absolutely loves it. She starts here and then slides down to a standing position.
We walk to the potty, we sit, we go, we flush and then we wash our hands. That way it is therapy not lasting a long time but done several times throughout the day.
This trip to the bathroom we kinda got side tracked with her favorite chair. She demanded to sit. Unfortunately, she forgot she had to go potty and made a mess sitting right in front of the potty??
Crystal has a new found interest. She now tells me when she wants to play or ride a toy then she wants to walk to it. She will down right throw a huge fit if you don't help her. And will refuse then to play with that toy. Well, as much as I want her to participate in the various activities she is able to do, her fit stops me in my tracks so I assist her walking to her toy.