Not what we hoped

It’s been a while since I’ve blogged about our son, Noah, our five year old son. He’s had a few extra challenges that our other kids don’t have; Ptosis, Scleroderma, and for a while a heart arrhythmia.

We had actually thought we were having a pretty good year. Over the summer of 2010 he had surgery on the Ptosis (it affects the muscle in his right eyelid), and started an experimental treatment on the scleroderma that seemed to be working. In fact, about half a year ago we we found out that the trials ended and the experimental treatment had become the official treatment.

But in recent months we started to notice that it looked like the redness on his face was starting to grow instead of recede, indicating a return of the scleroderma. Our doctor agreed, increased his dosage of the medicine (which does has risks for his liver, hence the monthly bloodwork he has been undergoing for the last year or more), and referred us to one of the national specialists located in NJ who has more experience and has ultrasound equipment that can detect just exactly what was going on under the surface.

Seeing the specialist was a mixed blessing. She really knows her stuff, and shed a lot more light on Noah’s condition. Unfortunately, she noticed another patch on Noah’s face we hadn’t even seen, and shocked us with the news that they’re realizing scleroderma is a lifelong condition that Noah will have to deal with for the foreseeable future.

Up until recently, so little has been known about the condition that they thought it generally went away in around eight years. I hadn’t realize how much I was just counting down the days and telling myself, ‘at least he’ll be done with this by the time he’s in middle school.’ Hearing that it actually continues to crop up for years and decades after was like a punch to the gut.

On top of that, the increased dosage did end up putting his liver levels in the red zone, so he’s off the drug for a couple weeks while they let his system clean out and then we’ll start again, probably with a lower dose. Ug.

In the grand scheme of things, there are many parents out there with children fighting much more severe conditions. So there’s a part of me grateful that the worst we worry about at the moment is the degree of scarring that will happen to his face. And hey, for a boy, that can even be cool – Harrison Ford’s scar on his face is awesome. But it would be nice to not have that worry, either.

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