I realized I haven’t posted any updates on my four and a half year old son, Noah, lately … so here we go!
He’s been on the medicine for the scleroderma for a few months now and it seems to be working well. Almost all of the redness has disappeared from his face, so the hope is that any future scarring will be minimal. If you’re not familiar with scleroderma, basically it mutates, hardens and thickens the skin and lasts for eight years or so. It’s incredibly rare – so much so that there is no cure and not enough people with it to really adequately have trials on medications to find a cure. Noah’s case is even more rare in that it’s on his face – usually it’s somewhere else on the body and not as big of a deal. The problem is that while it does go away eventually, it can permanently scar the skin, and even leave some parts of it looking hollowed out. Anyway, we’re happy with the medication so far and love the doctor. He really knows his stuff and Noah is actually excited to see him every time! He laughs, he actually talks to the doctor (he won’t talk to any other doctors, nurses, etc., – we are still shocked at how much he says to this guy!), and really cooperates. Because the medication is so powerful and could have some potentially serious side effects to his liver and other areas, the poor kid has to get blood work every four weeks. He doesn’t like it, and it usually involves some panicked screaming and crying right before and during, but four a four year old he does really, really good with it.
Last time he had the blood work he actually insisted that Micah, Caleb and Zachary all come and watch. I was mystified at first, but it actually was a really good idea. He always gets a milkshake afterwards – it’s how we distract him and it works, but they’ve been giving him a hard time. I think it was actually really good for them to see what he’s going through every month – it was the first time they didn’t hassle him about the milkshake! I feel bad for Noah; he has a lot on him for a kid his age, and he’s old enough to know there’s something different. Every once and a while he asks why he has to have so many shots and his brothers don’t.
In the heart department, he still has the irregular heartbeat. It’s actually so strong and noticeable you can feel it if you put your hand on his chest. He doesn’t have to have medication for it, but his annual appointment to talk about it is coming up soon so we’re curious to see what the doctor thinks about it.
Meanwhile, the big news is that Noah has another surgery this coming Monday. Ug. It’s his third. It’s not connected to either of the two issues I’ve already written about; it’s a condition called Ptosis. Basically, the muscle in his right eyelid doesn’t work so they have to go in in four different places on his eyebrow and eyelid to insert a filament that will pull his eyelid up like a window shade. He had to have the surgery when he was barely one, and will have to have it again in the future. It’s a big deal because as his lid droops and covers the pupil, it impacts his vision development. We had the pre-op appointments the other day and everything seems like it should go smoothly. The poor kid was noticeably bummed when we broke the news to him that he has to have another surgery, but he still manages to handle that kind of news better than his brothers would.
Anyway, if you think of it, pray for Noah on Monday!