We left Cooper's 12 month appointment thinking we would go to physical therapy a few times, they'd teach him how to use his legs, we'd move on with our lives. But that's not what happened.
We started going to therapy at the end of October 2019. It's now the end of January 2020 and our little guy hasn't improved at all. He still isn't using his legs. I tell everybody, "He CAN move his legs. But he DOESN'T." I'm not saying he can stand and just chooses not to. I'm saying he has feeling in those little legs of his. And he is able to move them slightly. But our little guy can't lift them, doesn't kick them and still isn't doing any more than rolling.
Our physical therapist told us he has mild hypotonia, or low muscle tone, as well as hypermobility in his joints, meaning his thumbs can be bent completely backward and touch his wrists and he's more flexible than he should be. She was also concerned about his head size, because let's be honest, that thing is huge, as well as the tremor in his hands. She sent us back to our pediatrician after a few weeks of therapy to discuss these things with her. So we were back to where it all began.
*I want to stop here for a second to say our therapist and pediatrician are AMAZING. They listen to absolutely everything I say and actually hear me. Both of them talk to Cody and I like we're intelligent human beings and not idiots. If our pediatrician doesn't have an answer to a question she will admit that she isn't sure and tells us she'll research and get back to us. And she actually does. So after bringing our concerns as well as our PT's concerns to her, she told us she wanted to refer us to a neurologist.
So we were off on another adventure. We scheduled an appointment with the neurologist. We met with him and he asked questions about Cooper's medical history as well as our family medical history. He asked what signs and symptoms we were noticing and he checked Cooper for reflexes in his legs. I'm not sure if you've ever tried finding a 13 month old's reflexes but it's not easy. Cooper looked at that man like he had three heads. So of course the doctor wasn't able to find any reflexes. Obviously he's a trained medical professional who has probably (hopefully) done that a time or two so I trust that Cooper really truly does lack reflexes. He said the absence of those reflexes told him there was possibly something going on in his spine because the message was being sent to his nerves but not returned. We were told his tremor was probably just something he would grow out of but because of his hypotonia, lack of reflexes and not bearing weight, he wanted to send us for an MRI of Cooper's brain, lumbar and sacrum. He also ordered several blood tests.
I'm here to be 100% honest with you so I'm not going to sugarcoat this. I was not impressed by this doctor. Did he do anything wrong? Nope. Was he rude? Not at all. But he did seem sort of nonchalant about Coop's symptoms. Now, I know what you're thinking. Samm, not everyone is going to be as concerned about your child as you. You're his mom. Obviously you're way more concerned about him than some doctor who only spent 45 minutes with him. But here's the thing. This doctor told us "Hopefully the MRI and bloodwork all come back normal. If we don't find anything then maybe this is something he'll grow out of." THIS IS ABSOLUTELY NOT SOMETHING HE IS GOING TO GROW OUT OF. MY CHILD CAN NOT USE HIS LEGS. HE'S NOT GETTING ANY BETTER. I couldn't believe he even said that.
After we left that appointment I told my husband I felt like the worst mom ever because, honestly, I wanted to find something in those tests. I just wanted answers. Did I want something to be wrong with my son? Absolutely not. But it had become pretty clear there was. I wasn't going to lie to myself and pretend like there wasn't. He was basically a 13 month old toddler stuck in an 8 month old baby's body.
The next day I scheduled the MRI. The soonest we could get in was over a month away. After getting off the phone I asked myself "what now?"
Now, we wait.
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