Today I thought I'd tell you more about my dear daughter Sihle. As many of you know, my dear little Sihle is diagnosed with CP (Cerebral Palsy). There are MANY different kinds of CP, all with varying degrees of severity. Sihle's kind of CP is called Spastic Diplegia. Spastic diplegia is a form of cerebral palsy where both the arms and
legs have abnormal stiffness. The legs are often more affected than the
upper extremities. Spastic means stiff or contracted. The word Diplegia
breaks down into "di," meaning two, and "plegia," the Latin word for
weakness. Therefore, spastic diplegia means stiff or contracted muscles
affecting two extremities causing weakness. Spastic Diplegia is
sometimes also called paraplegia.
In Sihle's case it really only affects her legs. She has very good control of her hands, even fine motor control for colouring and doing puzzles. She does have some tightness in her legs, but it's quite minimal, what actually causes her the most difficulty is her lack of muscle tone. Her core (stomach muscles), bum muscles, and legs muscles are very weak and underdeveloped. When she started Physio at the age of 2 1/2 she really had no stomach muscles at all. It's amazing how she has progressed over the past 2 years!
Because she lacked any muscle tone at all, she found it very hard to do even minimal exercise. She only sat properly at the age of 13 months. Before that she would be sitting and then fold over flat on her face - no stomach muscle whatsoever!
Because of her lack of muscle tone this is how you could usually find her (above). Even though at this point she could sit (she was 18 months), she still found it much easier to "flop". It took LOTS of coaxing to get her to lift up her head to say hello (below).
I was given custody of Sihle when she was 21 months. At this point she was just starting to bring her knees under her and attempt a few feet of crawling. She couldn't stand - she had what I used to call "wet-noodle" legs. They just wouldn't support her weight. Part of the problem was that her ankles flipped over. She would literally be standing on the sides of her feet. Her inside tendons and muscles were so loose and her outside so tight that they allowed her feet to flip over. It was seriously quite a scary sight. Before the adoption went through I was warned by therapists that there was a good chance she would never walk. At this point I remember calling my dear Mom in Canada, and asking, "will we cope with a child on the farm who can't walk, can we do this?" My Mom is such a doer, she was like, of course it'll work. If we have to we can pull her around in a sled during the winter and in a wagon in the summer,we'll find a way, don't worry. With that reassurance I decided to go ahead with the adoption, regardless of whether or not she would ever be able to walk.
A few months after the adoption went through I brought her to an orthopaedic surgeon, to find out what I could do to help her. He referred me to a man who made splints; saying there was nothing wrong with the bone structure of the leg, we just needed to encourage the foot the stay in the correct position, instead of it being allowed to flip over. This would also give Sihle a flat base of support, and hopefully she would begin to bare weight on her legs.
When she has 26 months old she got her first pair of leg splints (below).
They had a plastic section that went into the outer splint and kept her feet from falling outward. They applied a lot of pressure to certain parts of her feet, and she was not impressed by them in the least. I was told to put them on her for an hour the first day, and then increase it by an extra half hour each day. Let me tell you, she let me know she thought the world was ending. She screamed, and I mean screamed for an hour that first day. And then an hour and a half the next. . .you get the picture. She wanted nothing to do with these horrible, painful monsters. I felt so mean, so horrible, and there was nothing I could do to comfort her. Eventually after about two weeks she would only scream when they first went on, and then about a month after that stopped screaming altogether - was I a happy Mom!
By this point Sihle was crawling quite well, and was not interested in trying to walk at all. She could get around, and was more than happy. I on the other hand had been told to limit her crawling as much as possible and encourage her to walk, holding onto my hands, furniture etc. Fun, fun, fun. . .
When she was 2 years and 6 months she took her first step! YEAH, I was so so so excited for her. We travelled back to Canada for Christmas, and had such fun encouraging her to take 2, 3,4 steps between people. It was as though she was 10 months old, and taking those first shaky steps. The big difference was she had worked SO SO hard to accomplish this. We were all so proud of her:)
Shortly after her 3rd Birthday she needed new splints as she had grown out of her first pair. This new pair of splint (below) was built differently for her. It didn't any longer have the inside plastic, her ankles were getting strong enough she could now cope with just the outer part. By now she could walk across a room independently. She was unable to walk on grass, or anywhere that the ground was not even, but she was progressing so well. She was so happy to be able to follow her big sister around. She loved having some independence.
Fast forward another 8 months, and she had a major growth spurt. This meant yet another pair of splints. This time around they decided that she had good enough muscle control to change her splints quite drastically. She was made short splints that would support her ankles and feet, and then front splints, called "toe off splints", instead of the splints that supported the back of her leg. It was time for her to learn how to use different leg muscles.
These were the short splints. Again there were two parts (below). The part on the right was shaped to fit and support her feet/ankles, and fit into the outer part, left.
These short splints then fit on top of her toe off splints (below). The toe off splints supported the front of Sihle's leg, allowing the back muscles to do a lot more work than in her old splints.
Here's a picture of her toe off splints out of her shoes. Her short splints would sit on top of the bottom foot shape. With these new splints she suddenly went backward a mile. She was back to barely being able to walk. Her balance was horrible, and you could see her struggle so to find the new muscles these splints required. Thankfully, this time around she was old enough to understand that these splints were going to help her walk better one day soon; If she kept working, and walking, it would get better. I never did hear a complaint out of her mouth, and it must have been so frustrating for her to go from being able to walk quite well in her old splints, to having to relearn how to walk in the new ones. But relearn she did. Within two weeks she was walking almost as well in her new splints as she had been in her old ones. And soon, she started being able to do a little "run". Nearly slower than her walk, but feet moving a mile an hour - she was so proud, the smile on her face. Over the past year these have been the splints she has worn. She has developed to such an extent that she can now negotiate rough grass and the likes outside, and only rarely falls. She is running quite well (still with an awkward gait, but hey she's running!)
On Friday we went back to see her splint maker, as she has decided to grow yet again. He was so impressed with how well she's doing that he told her she can get rid of her short splints, and just use her toe off splints! If you look at the picture below you will be able to guess at Sihle's reaction:)
I don't think she could have smiled bigger if her life depended on it! (and the smile didn't leave her face all afternoon! She now only needs to wear the splints below. No more hot stuffy moulded plastic splints - one happy girl. . .
This is her marching out of the splint makers office - (see the smile), wearing only her toe off splints. Look at how high she's lifting her legs, that's some muscle use! To imagine I was told there was a good chance she would never walk - WALK, to say nothing of running and marching - GOD is GOOD!!!
So this brings me to another little person. I posted about him a few weeks ago. His name is Malcolm and he is in an orphanage in Eastern Europe. Here's the picture I posted of him (below).
He's the same age as my Sihle, and also has Spastic Deplegia, also affecting only his legs. This little darling only has till his birthday in April, and then he'll be 5, and too old for his baby home. In April he will be transferred to an Adult Mental Institution! He will likely have his head shaved, and be confined to a crib for the rest of his life. . .
Here's a new picture of Malcolm. Isn't he just too cute! He has the same determined look that my dear Sihle has. . .
I found a video of this dear little Malcolm (below). It shows him walking with his walker. I'm SO glad to see he's able to get around a little, and also saddened, because he should be able to run and march just like my Sihle. In a family this little boy would be running around and learning how to climb trees, not just hobbling around with a walker. I am also so glad to see he's wearing splints, but at the same time, so sad they're not splints like my Sihle wears. His look like something from 50 years ago, worse than the splints given out by the state hospitals here in SA, and that's saying something!!!
Please, please, please, if I was in Canada right now, I would be working to bring this dear boy home. I can't, I'm not there, and my heart is just breaking for him. If a family were to commit to him, there's a chance they would keep him at his baby orphanage until the family was able to come for him. He might be saved from having to spend any time in a mental institution. He belongs in a family, being loved on, and given the tools to allow him to one day run and play with his friends. Please, please, help me find this dear boy his family. I would be his Mommy in a heartbeat, but at this point I just can't. He can be adopted by couples, and singles living in the US and Canada. . .where is his Mommy?
