So, in an unexpected turn of events we are ruling out muscular dystrophy in Noah.
I know! W.T.F.!
This morning we saw the neurologist. It was to have been a quick check in appointment with a sign off from her now that we are seeing the new developmental pediatrician.
Noah was handling himself very well, which isn't unusual at 8:30 am. Too bad we can't get all his appointments that early.
So the doctor is doing a quick exam on him and she starts to question his well developed calf muscles. And yes, he has well developed calf muscles. Not freakishly large, but more developed than you would expect in a 5 year old.
So she starts talking very carefully about this, clearly not wanting to alarm us, when I pipe up and ask her if she is concerned about a neuromuscular disorder. She looked a bit taken aback when I said that, clearly a bit surprised that I picked up on where she was headed so easily.
The thing is, I spent a week every summer, for 15 summers, working with kids with muscular dystrophy, from the time I was 17 until I was 31. I've often hoped that in some wildly karmic way by spending so many years working with these kids, I was making sure my own children would be safe from it.
But I know the signs, and I know that enlarged calf muscles aren't a good thing. I actually brought it up with one of his doctors a couple years ago. Noah has had well defined calf muscles since he was a toddler. And at the time I questioned it he seemed to be falling a lot. The doctor laughed at me and told me to stop giving myself more things to worry about. I talked to his preschool teachers and they told me they just thought it was because he was always moving so fast, and just didn't pay that much attention to his surroundings. It made sense to me, and since he has never shown any signs of muscle weakness I let it go.
Until today.
When the doctor questioned the size of his calf muscles.
And my heart hit my toes.
I told her what I used to do every summer. And that I had questioned this myself a couple years ago.
She did a few more tests on Noah, and agreed that she didn't see any muscle weakness.
She said we could just let it go. Wait and see. Or we could run some blood work and see if it looked like there was something going on in his muscles.
Now, if she thought that I could just LET.IT.GO. at that point, she was crazy!
So we are doing the blood work. And figured since they were going to put Noah through the trauma of a blood draw we might as well do a full metabolic panel and just confirm every thing else was OK.
And I have to give Noah props, because he handled himself well for a five year old. He wasn't happy to do it, but Rich held him and I stroked his hair, and he was very brave.
We'll get the results next week.
Honestly, I'm not all that worried about it. Because really, I already have enough to worry about...
I hope the results come back fast and with nothing scary in them.
ReplyDeletepoor little Noah and poor Noah's parents! I hope you'll get good results soon!
ReplyDeleteI hope everything checks out okay. Better to be safe, right!
ReplyDeleteOh gosh! Good luck with the tests. I'm proud that Noah was so brave when he got his blood draw. That is ouchy stuff.
ReplyDeletePraying hard for you and Noah. The uncertainty is the killer.
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