On Saturday morning, when Nolan got out of bed, he collapsed to the floor and started crying.
Nolan has never collapsed to the floor and cried from pain. He’s experienced pain after walking to the park, and after playing too much, but he’s never collapsed.
His pain continued all day long. He was given doses of ibuprofen and had no-odor Rub A535 applied. He’d have spurts of activity, but then the pain would be too great and he’d go back to the couch.
On Sunday morning, he didn’t collapse when he woke up but after a few hours of playing in the living room, he started crying again. He’d rest for a bit, then try to play again. He wanted to jump, he told me.
“But that will hurt your leg,” I told him.
“But I just want to jump!” He’d insist, and he’d jump…then he’d cry again, because it hurt.
It broke my heart.
He spent the majority of the day resting on the couch, because playing hurt. Whenever he’d get too physical, he’d cry. Nolan has rarely cried when his pain is too great, and it hurt me seeing him that way. He even had two accidents because he didn’t want to walk up the stairs and he didn’t want to ask us to carry him.
I need to get him in to see our family doctor, to get X-rays ordered and completed so I can get him in quickly to Sick Kids for an appointment with those X-rays on hand.
I told his old doctor at his last appointment that his mobility had changed. That doctor shrugged his shoulders as if to say, what of it? That’s a part of having MHE. YOU should know.
Yes, I should know. I know when something’s going to cause him a lot pain. It’s the doctors to do more than just shrug his shoulders and brush away my mounting concerns.
I want the best life for my boys. I want them to jump and run and play. I know pain may always be a part of their lives, like it is mine, but when it’s at the point that he’s having bathroom accidents because it hurts him to go up the stairs…and I don’t mean just poop either. Pee. This child hasn’t peed his pants in months. He loves “taking aim” in the toilet. The past month he has been better with the number 2 business as well, at least he was better, until the accident Matt had. But peeing was one thing I never worried about.
Now? I am worried. First thing Tuesday morning, I’ll be calling Sick Kids and begging for any cancellation, and I won’t leave until they LOOK at him, truly look. I am my children’s advocates. I will shout until my voice is raw.
This time, I don’t think I’ll have to. The boys will now be seeing the same doctor I had growing up, and I am entirely confident that he will listen to my concerns.
For now, I’m trying to get Nolan to take it easy. It appears as if that growth on the back of his leg is pushing against his tendon or muscle, since it causes him extreme pain when he tries to straighten his leg or bend it too much.
It’s so hard trying to keep a busy kid still. He doesn’t understand why he can’t jump or run or play. I don’t want to tell him not to do things, but I don’t want him to be in more pain.
And admittedly, I am worried about school now, and how he’ll do. I won’t lie, I thought we’d have a few more years before it got this bad…I was in grade 1 when I started having such issues. We go to meet with his teacher tomorrow afternoon, so I will give him/her the low down.