The Hands

The words "sleeping brace" for scoliosis are a little misleading. Here's what a Providence brace looks like. It's hard plastic and fits very snugly. Not designed for a comfortable good night's sleep. Designed to keep your back from doing anymore curving. It's pretty good at that. Did you know that bracing for scoliosis doesn't straighten your spine? The brace only keeps the curve from increasing. I didn't know that. Maybe that wasn't in Deenie, which was where most of my knowledge on the subject came from until very recently. Haley's brace was doing it's job and things were good. For a minute or two.

This past December Haley started having odd symptoms with her fingers and hands. She was having lunch one day, and noticed that her fingers were bending on their own. They really were. Two of them on her left hand when she would put her hand up as you would to say "stop". That was odd, but she was in no pain at that point. I didn't rush her to the doctor figuring that she had slept on her hand, or pulled a little muscle. No bit deal, right? Wrong. Before long, she would complain that her hand was "shivering". Then it would hurt. We had an appointment at Shriners and they would check it for her. Maybe her spine was curving at a point that would cause this? They examined her hand and brought several specialists in to see her. They decided that she had strained her arm or wrists and that was causing the new symptoms. With time, it would get better. Nice try, but that wasn't the case.

We were having lunch out at Moe's (love that place) for girls' day out. Haley ordered a burrito, and was having trouble cutting it. She couldn't use her knife and fork well enough to get the job done. Her right hand was having the same weakness, pain and trembling as her left now. Not good. Haley saw her pediatrician the next day, who was sure that the problem must be neurological so she referred her to another doctor. Why does it always take so long to see a specialist? It was about six weeks before she saw her new neurologist. During that time things were getting more difficult for Haley. She wasn't able to paint her nails. She stopped taking her cooking class. I couldn't get her help soon enough.

The neurologist was pretty cool. He came in the room with an old school black doctor's bag and examined her very thoroughly. There were a few things that he wanted to check for specifically. Muscle atrophy and wasting were words he used. Scary. So there would be blood tests and something called an EMG/NCV. The EMG/NCV test involved longish skinny needles being inserted into different muscles to measure a neurological type response. Not a fun testing day, but Haley was a champion. All tests were complete and the results were almost completely normal. The only exception was that she has mild carpal tunnel syndrome in both wrists. It was good news because those tests ruled out some pretty horrible conditions. Also, she had no atrophy or wasting as the doctor first thought. The neurologist said that Haley needed to see a pediatric rheumatologist. It has taken months to see that doctor. Her first appointment with him is on Monday. Hopefully, he'll be wearing his thinking cap because he will be needing it.

During these months of waiting for this appointment, her hands have been mostly okay. They don't bother her every day, but when they do they really do. She has had pain in her shoulder as well. It will be good to get a fresh perspective. Haley probably should have seen this type of doctor a long time ago. Especially considering her joint issues, but it's never been suggested. Maybe this doctor will figure something out, maybe he won't. I've lowered my expectations over the years. God designed my precious daughter in such a special way, that as of right now, He's the only one that knows all the details. Maybe one day He'll let us in on the secret. Until then, I'm really thankful that He's given me the peace and her the grace to deal with it all.

That upcoming appointment is probably the reason I've blogged all week. It always forces me to revisit the past in preparation for an appointment like this. Usually, it's all heavy on my mind. This time it isn't. Cool.