Our Social Chairman

Just sitting here watching my favorite girl in her element...any group of children. She has a way, especially with youngers, of drawing them into organized play. Here at the campground, she knows the names of most of the children, recognizes them later at the pool, and has no fear in asking kids to play with her. Sometimes, she gets preschoolers together at the playground, asks them how far they can count, and sets up hide and seek or tag games with them. She particularly likes little boys and they follow her around wherever she goes. Today, though, my mind is drifting as I watch her taking on a group of girls who are head and shoulders taller than she is. How will she deal with limited activity and restrictions after back surgery?

After getting a second and third opinion 9 months ago, we agreed with our thoracic and one orthopedic surgeon and opted not to begin scoliosis bracing, but rather to discontinue the pectus intervention. The ortho opted not to take x-rays again and told us to come back in six months. It looks like it was a terrible, wrong decision in hind sight. Now the same orthopedic surgeon is telling us that she is no longer a candidate for bracing, that we should have had her back to the doctor a few months ago (in 3 months and we understood to follow up in 6 months), and that she now needs corrective back surgery. Apparently, we were supposed to have had an appointment scheduled with him before we left last time, but no one told us. When I noticed changes, I started questioning why I hadn't gotten an appointment reminder only to find that we didn't have a follow up. Two months later, we finally got in to see the orthopedic surgeon last week.

I am really struggling with should haves and could haves. This oversight may have cost my daughter years of playing basketball in the park, soccer games with her friends, and perhaps even several inches of growth. We have told every specialist we have seen this year that we want someone to help us manage her care and each one says something like, "That is the way that health care is moving today." Well, this system left me as the uninformed advocate for my daughter and my lack hurt her immensely. I have been tracking more specialists than I obviously can handle. In the past 6 months we have been referred to an endocrinologist, who sent us to a geneticist, to a neuropsychologist for a full evaluation, to a 504 team and an IEP committee at school, to a neuropsychiatrist along with her usual evaluations with the thoracic surgeon, orthopedic surgeon, dentist, optometrist, and primary care physician. Sometimes I struggle with even remembering each of their names! But through all of that it appears that I took care of what was staring me in the face that appeared urgent and missed something that was truly important.

It is time to call her in for supper, but I really hate to cut short her basketball game. There may not be too many of them in her future...