On Friday we had our appointment at Shriner’s. We got there and were immediately seen by the Chief of Orthopedic Surgery of a very renowned hospital/medical college. We thought we would have all of our questions answered, but it is never the way we want it to be… Everyone there was very nice to us. The doctor sent us to X-ray, and he was sure the diagnosis was going to be one of 2: either talipes calcaneus valgus, which is positional and not a big deal; or some sort of congenital calcaneus defect, which I can’t remember the name. This is a picture of how the feet and legs looked like when she was born.Sorry it is upside down, but I still haven't figured out how to turn them!
After the x-ray, the doctor told us that it was not the congenital defect, which was a relief, but he also said it was not a simple talipes calcaneus valgus, because he would expect it to be better by now if that was the case. He also mentioned that she has no Babinski reflex, and she fails to curl her toes when they stimulate a reflex. That led him to believe that the problem may be neurological. Somewhere the nerves that attach to the muscles of her leg/feet and the muscles themselves are failing to communicate. The next step would be a MRI to check for any abnormalities in her spinal chord, but the doctor does not recommend it right now, because she would have to be sedated. Next week we will go there again for a EMG, electromyography, to see how her leg muscles respond to stimuli. But for now, we came back home with more questions than we had when we first arrived at Shriner’s. It did give us some validation that we are not crazy and that there seems to be something wrong even though the pediatrician never really thought so. We asked the doctor if all the potential diagnostics he mention were treatable, and his answer was unsettling: “some of them are…”. We are trying not to worry and to hope for the best but it is not very reassuring when the specialist of the specialists says he doesn’t know what is wrong with your baby.
But one thing Shriner’s did for us very well – it showed us that we need to put things in perspective. We all live our lives thinking that our problems are so big! Just sitting at the clinic’s waiting room will show you that your problems are so small! Those kids and their parents should receive a medal! To see the smile on some of those kids face, to see how brave they are, and their parents are, that will teach you a lesson and bring tears to your eyes! Our trip to Shriner’s was very emotional to me.
Then today I learn about the baby of a friend, who was born some weeks before Gabbie. I had not heard from her at all since the baby was born, and I thought it was strange, but with a toddler and a newborn, I thought she was just busy. Well, she has been very busy, her baby has a very rare disease and has all sorts of problems, from vision and hearing impairments, to a heart defect, to mental problems. My thoughts go to her and her baby, and all prayers are appreciated, I am sure. Right now I feel so small, and my problems seem so small too. Gabbie is a happy healthy baby, and I will do my best to get my answers. She will get better and hopefully she will walk when she grows up. But if that is all we have to deal with, I am the lucky parent. I am so grateful that she is a normal, healthy, happy and in so many ways, perfect baby!
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