Paul Simon has a great song called Hearts and Bones, with lyrics that state:
You take two bodies and you twirl them into one. Their hearts and their bones. And they won’t come undone.
Chris and my body were twirled into one somewhere around Christmas Eve of 2008. This past week, Joshua sees a genetic doctor to look at the resulting heart and bones. First, Josh had an EKG. As I understand it, children with hearing loss or ear development issues often also have problems with their heart. Such is actually the case with my niece, Abbey, who is turning 5 this next month. She is a lovely, smart and adventurous (precocious) little girl with unilateral hearing loss (actually one ear didn’t form) and she was also born with tiny holes in her heart. She hasn’t had to have heart surgery as the holes are mending on their own and thankfully, with speech therapy, her one good ear is serving her well and she is talking beautifully. I am thinking about Abbey these days because when I met with the geneticist this past week, Abbey was the person they paused on and wanted to hear more about. It is amazing how far and in such detail they reach back to explore health issues of all aunts, uncles, cousins, second cousins grandparents and even great grandparents–as they try to determine a genetic link to explain Josh’s hearing loss. I actually don’t know that much about Chris’s extended family and Chris wasn’t at the appointment, so I just had to answer “I don’t know” to many of the questions which went beyond his family of origin.
Josh also has some extra dimples near the base of this spine. While our regular pediatrician may have never noticed this, our genetics doctor gave Josh the most thorough exam I have ever witnessed. I loved her. She was hands down my favorite doctor that I have ever encountered in all of this stuff with Josh (and perhaps ever in my life). She somehow inspired me to want to go to medical school and become the kind of doctor that she is, caring for kids with all sorts of genetic differences. This doctor just glowed with caring and exuded joy. I was only with her for about 1/2 hour (the rest of the time was with the genetics nurse practitioner, who was also very good), but during that time, I had a sense that it would all be okay. She also held Josh while she examined him and played with him, rather than having him on the examining table. Her techniques should prove as a model for all pediatric doctors. Anyway, the extra dimples at the base of Josh’s spine can be an indicator of a fixed (rather than free-floating) spine. She ordered some spinal xray films. Josh hated being held still on the imaging table for these pictures, perhaps even more than getting his blood drawn yet again (for genetic testing for specific syndromes/conditions that can cause hearing loss and/or deafness). I learned the next day that Josh’s spine was fine. Whew! We avoided another potential hurdle.
Anyway, I wasn’t surprised when they ordered an EKG for Josh (knowing Abbey’s history). Josh’s EKG looked good. Yeah!
The biggest news of the week, however, was our report from the hematologist. Her office called to tell us that the more extensive blood tests did not indicate a bleeding disorder. For some reason though, we were told that he should be retested before any further surgeries or in a year, whichever comes first. Although this wasn’t the complete “free and clear” that we would have liked, still, we know we are not likely looking any degree of hemophilia, which is an enormous relief.
We won’t receive the results of the genetic testing on Josh’s blood for 4-6 weeks. In the meantime, we need to see a pediatric eye doctor, as children with hearing loss also often have vision issues. The genetics doctor noted that Josh’s right eye is slightly smaller than his left eye. She said this is causing Josh to lean his neck slightly (cock his head–there is a technical term for this, which I simply do not remember) to compensate. Eventually, if this causes problems for Josh, he may need some physical therapy. Now this is something that I truly would have never noticed. I doubt our pediatrician would have noticed this one either.
The danger in all of this uber examination is that we begin to see Josh as the sum of all of his conditions. But to us who know Joshua best, he is just Josh–Josh with some hearing challenges and a few other small challenges. And we all have our challenges, some are just more hidden than others. Anyway, our lovely boy is all heart (and bones and blood). We love little Josh so dearly and he is the perfect Joshua for us. The perfect son for us; an awesome twirl of our hearts and bones.