Noah’s new challenge

I’ve blogged in the past about our son Noah’s challenges. He has to have surgery every few years on his right eyelid because of a condition called Ptosis, for a while he had heart arrhythmia that required a lot of monitoring, and for the last few years he has been battling Scleroderma, a condition that affects his skin and can cause a lot of discomfort, tissue damage and scarring.

About a month ago we went to see a specialist in Philadelphia who had equipment that could more accurately assess how active his affected areas are with Scleroderma. I blogged about it here. We had been suspicious that it was starting to flare up more severely, which was confirmed. Our Doctor here in Wilmington (who Noah thinks is awesome), upped his dosage on the medicine he has been taking for the last year or so, which unfortunately ended up being too much for his liver – his bloodwork came back at unhealthy levels. Another setback.

After a couple weeks of being off the medicine completely to clear out his system, we have resumed, but with weekly injections instead of him taking it orally. The benefit is that he will actually get more of the medicine, it will absorb directly, and bypass the liver all together. The negative … weekly injections at home. Yesterday was the first day, which involved a lot of screaming and crying, me holding him still and Heather popping him with the needle. He’s actually pretty good with his monthly bloodwork now, so once he gets used to this is will hopefully go better than it did yesterday.

Either way, it stinks. He’ll actually have to have the bloodwork even more frequently for a while to monitor what happens internally with the injections vs. drinking it, and over the next couple months we’ll hopefully be able to easy the dosage up to almost double what he has been taking – we’re all very concerned about it flaring up and spreading in spite of being on the medication for the last year.

On the positive side, it’s awesome that God landed us in a church and town with one of the best children’s hospitals in the country, and half an hour from some of the top specialists in the nation (Philly)!

4 thoughts on “Noah’s new challenge

  1. Matthew,

    So sorry to hear this. Sadly I know way too much about scleroderma. My wife has had it for over a decade now. The good news is that once the balance is found with the drugs we've found that it can be stopped. Not cured yet but stopped.

    My thoughts and prayers are with you and Noah and Heather.


  2. Thanks, Jay! I had no idea. We are thankful it's the form that affects his skin; the internal form of scleroderma that attacks organs killed my grandmother five years ago (giving me a heart attack when the doctors initially said Noah had scleroderma).

    For such a rare disorder, it's turning out to be a small world.


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