About Henry

Henry was always slow hitting his milestones, but we were told not to worry. Not really talking? He’ll grow into it. Not walking? Don’t worry about it – he could be a statistical outlier. Wait until he turns two, then you worry.

He turned two. Not walking, not really talking. We went into the rounds of specialists at Kaiser – occupational therapists, physical therapists. It was recommended that we see a neurologist, but we didn’t think that was necessary right away.

Kaiser recommended physical therapy, and said they would make a referral to the Regional Center because he probably qualified. The speech therapist said the same thing and said she’d make a referral. We didn’t hear from them, but by that time Dot was almost upon us and we were preoccupied with the upcoming birth.

She, of course, created her own issues. Shortly after Dot was born, I called Regional Center to refer her – as a Downs kid, she certainly qualified. The next day, I called them again to see what was happening with Henry and his referrals. They’d never heard of him – they had no records of any referral made for him from Kaiser, or anyone else.

By this time, we had him in physical therapy out of our own pocket. His first therapist wasn’t really working well with him, so we stopped her, and kind of forgot about it for a while as we coped with Dot’s health problems and surgery. When things calmed down again, we resumed his physical therapy – with another therapist – and this time Regional Center footed the bill, but only for one session a week. After several bureaucratic hassles, it was upped to twice a week, which was the standard (why they only approved a non-standard once a week, we’ll never know).

In the meantime, we worried that he might be autistic. We were highly recommended a therapist who specialized in a stimulating form of play therapy that seemed to work with autistic kids, but that was a short-lived disaster – it was too stimulating for Henry, leaving him agitated and mentally checking-out for much of the therapy.

And we finally opted to see a neurologist. An initial blood test showed that he was producing some blood element at astounding amounts – normal range was about 200, he was producing at 12,000. The signs were pointing to muscular dystrophy.

After a long, slow process, Henry finally acquired foot braces to help his gait and ankle support, and he was given another blood test to determine if he had MD. The doctor promised the results in about ten days. After two weeks, we were told that the results would be available in a month.

In the meantime, I was starting some research on MD. I do it sporadically, because frankly I can’t yet face what we’re going to be facing. We have a book on the progression of MD and I can’t get past the table of contents, because the end is all about wheelchairs and breathing assistance and early death. I’m not ready for that yet.

Henry is the most handsome boy I know. He has a perfectly dome-shaped head covered in light brown hair and large, blue eyes that people notice. He has an easy smile and a wonderful mischief face. He’s very loving and loves to give and receive hugs. He will draw with intense concentration and focus. We love him so much it hurts.