The latest on Noah

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!

4 thoughts on “The latest on Noah

  1. Praying for Noah and your family. Wow, Matthew, I'm so glad you have a support system around you with your family and the church. My little Rose turns four this September 30 and just a few weeks ago, got scratched by the cat and had to get three stitches, let's just say, there were two nurses and one doctor in there to keep her still and I almost passed out and had a complete emotional breakdown, seeing her go through it and I'm so grateful I have God, cause he so helped me, but I think what got to me the most is how resilient kids are. She was bouncing around and seemed totally over it and I was still traumatized for weeks, can't even think of it now, but just look at her and am in awe every day. Hugs and Kisses to Noah from Shawna and Rose ((((Noah))))

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  2. Matt,

    I have been away for quite a while, but have been thinking so much about you, your family and especially Noah.

    Thank you for sharing the update of what has been going on, with us.

    I will contime to pray for Noah, as well as all of you.

    May God continue to be with you, as you move further along this path he has laid for you.

    God Bless You Always

    Sheila

    Like

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