Saturday, January 21, 2006

The Good, The Bad, and The Missing

Last weekend was our family's version of a long weekend. Jete and I had both Friday and Monday off. And Ethan had appointments on both days.

Nothing says relaxation like going to see the doctor.


Friday was a trip back to Boston to see Dr. JJ and Dr. S., his physiatrist and orthopedic surgeon. These are trips we've been making every 3 to 6 months for the past two years. As we were driving home, I pondered the changes in our attitudes since we started making the trek east.

Our first visits, before Dr. S. was involved, were very anxious. The car, the waiting room, even the exam room were tense places. We were so frightened to hear what they might find. What new treatments would we try? What other doctors would we have to see? We spoke in hushed tones in the waiting room, very somber. What would become of our son?

After Dr. S. got involved, and we knew the surgery was necessary, we stopped worrying about "what-if", and became resigned to deal with "what-is". We were less nervous, but more serious. On the road to the inevitable, we did what we had to do.

Now, the surgery is over. In some ways, we feel like we've been through the worst of it. They can't shock us anymore. We know Ethan's prognosis. We know he'll probably need this surgery again in a few years. We're okay with that. We've seen the secrets behind the curtain. Oz isn't so scary anymore.

Friday's visit found us laid-back. Calm. We were laughing and joking in the waiting room, and didn't even mind that they made us wait the usual hour or two. We didn't care that they switched us to the smaller exam room in the middle of our visit. It was gorgeous spring-like weather, and Friday before a long weekend. No worries.

Laid-back or not, we expected to hear bad news. Ethan had his usual x-rays, and we figured they were going to show his hips regressing to their pre-surgery condition.

Imagine our surprise when Dr. S. went over the x-rays to tell us that Ethan's hips are doing remarkably well. In one position, you can see that the bones are starting to correct themselves. Now that the hips are set deeper in the sockets, the pelvis is starting to grow properly. As a matter of fact, he pointed out that in the lateral ("frog") position, his hips look normal.

While Jete and I stood gaping at the x-rays, Dr. S. wished us well and started to leave. Before he scurried out, I stopped him and asked about the next piece of the surgery. Based on what he told us before, we expected Ethan to have the metal plates removed about a year after the surgery. Since it will be a year in March, I figured they'd need to be scheduling things soon.

Dr. S. said that actually, we can wait a year or two after the surgery to remove the plates. They are still close enough to the surface to reach, and since everything else is really ideal, he'd rather not mess with him right now. We can probably wait one more year.

After he was gone, I turned to Jete. "Did he just use the words normal and ideal in reference to Ethan?"

Jete looked as surpised as I was. "Well. It is Friday the thirteenth."


Monday's appointment was Ethan's four-year checkup. Compared to his "real" doctors, we don't take his pediatrician visits very seriously. Judge if you must.

We had the nurse-practictioner this time. She asked a million questions, since she isn't familiar with the complexity of his history. (I think he has the thickest file in their office, and he still has fourteen years to go.) For some reason, she seemed to be looking for something wrong. Everything I told her, she seemed to digest carefully, with a shred of doubt.

After all the usual checks, she asked if he was attending school. We explained the situation, told her we weren't comfortable with what they would provide for him at this time, and that we felt better with him at home. We have a stander, special seating, AFO's, and do PT as instructed by his last therapist.

She didn't seem pleased with this answer. "I'd like to see him in school," she said. We explained that yes, he would go someday, but right now, we are secure in our decision. Besides, I jokingly said, "He would be sick all the time from the other kids. He has been very healthy all winter."

She didn't look impressed. "Hmm. Yes. I guess he's relatively healthy."

This kind if irritated me. Ethan may have a lot of disabilities, but he is most definitely healthy. He hasn't seen his pediatrician since his three-year checkup, other than to get a flu shot this winter. Even CG has caught colds and stomach bugs that Ethan withstood. With all the potential problems he has to deal with, I would think that is reason to celebrate.

Her final check involved a genital assessment. She checked to make sure that his testicles were descended into the scrotum. She felt around for them. And searched. And searched. And searched.

Finally, she explained that she couldn't locate them. The reflex that causes them to shrink up into the abdomen is strongest at this age, but they should still come down once in a while. She called another doctor in to see if she could find them. No such luck.

After five minutes of groping Ethan's genitalia, they decided that they were not to be found that day. She asked us to come back in a month to have another look. If they were still missing, we'd have to see a surgeon. He may need minor surgery to "tack them down".

Neither Jete and I were too concerned about her diagnosis. I know they're in there. But she seemed to be proud of herself for this minor victory. As if she thought, "There must be something else wrong with that handicapped child. He couldn't possibly be healthy and stable."

Whatever. We'll see what happens next month. I'll bet one of the male doctors could find them. If they're anything like the men I know, they've got plenty of experience in finding their own.