The Followup and Physical Therapy

It already feels like forever ago, though it's only been two weeks.

We returned to Dr. Albright, Sam's pediatric orthopedist, about three months after the initial Coxa Vara diagnosis.

I had prepared myself for either of the two possible outcomes: Bone self-correction or surgery. Looking at my son, I did not think his bones were changing, despite his tremendous physical accomplishments, and had braced myself for the recommendation for immediate surgery.

I didn't realize there was a choice C.

I'm getting ahead of myself though. I should recap what happened between those two appointments.

I was lucky enough to have heard about Early Intervention, and asked for a phone number at Sam's 2-year checkup so I could set up an assessment. It took about a month for a team of E.I. specialists, comprised of an occupational therapist, speech therapist and a physical therapist, to come to the house and test Sam. He was off the charts in almost every area, like verbal, problem solving and fine motor skills.

At 2 years-old, he tested at 16 months for gross motor skills, landing him in the Early Intervention program. A physical therapist would be in touch with us soon to set up our schedule. I was thrilled and relieved we were going to get some help, and since E.I. is largely funded federally, it wouldn't cost us much or our insurance anything.

The physical therapist, Nancy, has done amazing things for Sam. She pointed out right away that he was limiting his upper body motions, probably because he found what worked and stuck with it since movement was so challenging for him.

He started climbing half steps with his feet. He began going up small slide stairs and going down on his belly. Before, he was unable to do slides at all, and had passed the phase of wanting Mommy's help. At that point, he would knee up the slide a step or two, and then come back down. Suddenly he was going down like a penguin.

Maya would cheer him on, saying, "You can do it Sam! Great job!" His sister's praise seemed to drive him even more.

Soon after, he began using his upper body strength like a gymnast to push himself up off the slide, with only his palms making contact as he worked his feet out in front of him and hurled himself down. He had a hard time landing at first, toppling over onto his head, but he learned to jerk sideways at the bottom so he would land on his butt instead. He would shout triumphantly, "My did it, Iya!" (Iya is Maya's nickname.)

He is constantly amazing us with how hard he works to reach physical goals he must be unwittingly setting for himself. He is so strong, and so determined.

About a month after the initial diagnosis of Coxa Vara, I took Sam to the endocrinologist. The blood draw was awful, and took a little rooting to tap his vein.

I will never forget the expression on his face when he turned around, his big confused eyes brimming with tears as he asked, "Mommy?" Why would the mommy who always protected and comforted him hold him down so strangers could hurt him with needles?

I cried, but kept singing to him. He does not like the Wheels on the Bus song anymore. The tests turned up nothing, which seemed to be good news. What had looked like Rickets was not. The endocrinologist from Mass General referred us to a geneticist there. We got an appointment for the week after Sam's follow-up with Dr. Albright.

Even though I had prepared for that second batch of X-rays with the orthopedist, I was nervous and shaky, and missed my exit. My mother-in-law, Chris, came from New York's Catskills to help, and Jim got off work and we all caravaned.

Dr. Albright took more X-rays, and Sam's bones had not improved. That much I was prepared for.

But still, the unexpected happened. One thing I'm learning as we wend our way through all this is that we can not count on anything; nothing is static.

Dr. Albright, who had initially said he would do the surgery right away if there was no improvement, worried if he operated on someone so young, Sam could lose too much blood after having the bone on one side cut. That would mean two surgeries followed by two body casts. Not only that, the doctor would have to use a less favorable method to pin his bones because he is so small.

And, he said the chance of recurrence was high, more than 50 percent.

Dr. Albright had said Sam is not in pain, but watching him carefully I am not sure I agree; he seems very sore after a lot of physical exertion, which is for him much less than other children. I'm not convinced his joints are pain-free, but really can't be sure.

Dr. Albright would consult his colleagues and call us back the following week. We spent the week swallowing the odds of Sam getting multiple surgeries.

But when Dr. Albright called us back, everything had changed again. Now he was saying that there was a new infant metal bracket for placing his bones that he could use effectively.

Recurrence would be greatly reduced if he straightened the bones enough. Even though they are so curved, he said he could do it.

His colleague, a pediatric orthopedist who specializes in hips, would also attend surgery. They all agreed it should happen within a year, but in cooler months so Sam isn't miserable in that body cast, preferably in the Fall, but we could wait until after the holidays if we wanted. Immediately I thought January -- after the holidays, and Sam would be out of the body cast by his third birthday.

Dr. Albright didn't think the geneticist would find anything, but told us to let him know. Jim and I were completely exhausted, but agreed the news was better this time than a week prior.

But, the geneticist would find something, and everything was about to change ... again.