by Sarah | Jun 20, 2016 | All About Molly, All of Us, Autism, Connective Tissue Disorder, Redefining Perfect, Special Needs
We waited a month for this visit.
In the grand scheme of “waiting for a specialist” times that has ever been for us – a month isn’t bad.
Still. We waited a month. Worried over her shoulder, and what the doctor would say. Our geneticists suggestion of “Connective tissue disorder” ringing in our ears.
We worried.
Hoped for the best, expected the worst.
Wondered over whether there’d be an MRI. Or possible surgery.
Of all our fears we never once expected it to become what it was.
We never expected to be left wondering how a visit to a specialist would turn into a horrible vaudeville joke.
“It clicks when she does this.”
“Well, then don’t do that.”
~blink blink~
You would think I was exaggerating.
But I’m not.
None of our concerns were truly addressed.
We were dismissed with a prescription for therapy for “Scapular strengthening”. Told that she shouldn’t click her shoulder. And that was that.
No words about the connective tissue question.
He barely touched her shoulder, only tested her strength.
The geneticist spent more time on her shoulder than this doctor. He didn’t check to see if her arm dislocated like the referring doctor did.
An X-Ray.
A bad vaudeville joke (and he wasn’t even kidding).
And no answers.
Still.
I don’t even know where to go from here.
by Sarah | May 10, 2016 | All About Molly, All of Us, Autism, Connective Tissue Disorder, Redefining Perfect, Special Needs
I should have known better.
My first mistake was getting “comfortable”.
As comfortable as anyone can when you have three special needs kids.
Everyone was doing well, no major incidents for two years (*knocks on wood*). I was well-adjusted to our current status, our version of normal. Our version of perfect.
Were there hiccups? Well, sure. We have two girls on the verge of tween-dom and all the drama that comes with. Drama we’d been through with the now-teen.
But overall, we were good. We had things handled. IEPs in place, regularly scheduled doctors visits…in fact, we’d gone down in occurrences of those (from quarterly to every third, or half a year).
During our month of hell, part of the trauma was dealing with issues with Kennedy and Denver and their new doctor’s ways that we didn’t like and his poor poor choices. Situations we are still coping with, but wish so much up in the air, we are in a holding pattern (I hate holding patterns).
Then there is Molly.
Several months ago we were hanging around the house. I had my hands on Molly’s shoulders, and she moved. Immediately I noticed something odd. A very pronounced clicking when she moved her shoulder. I asked her if it hurt, it didn’t. I knew it wasn’t right, but with the chaos of all the crazy around this house it got pushed to the background.
Then today we had her regularly scheduled autism checkup with her geneticist/neurodevelopmental doc. We love this man (if not the hospital he’s affiliated with), and he’s been great with Molly from the start.
So I said, “I know this isn’t your area, but could you check out this weird thing?”
He checked her shoulder, had me do the same to look for a specific issue, then had her lie down and rotated it, checking everything. As she sat up, she decided to show him how she can bend her fingers in hyper-flexible ways. “Isn’t that cool?”
And so, the doctor explained to me that Molly has no connective tissue in her right shoulder. When it’s rotated, it becomes dislocated and pops back in. It is bone on bone.
Add in the hyper-flexibility in her joints…and he thinks we’re looking at a connective tissue disorder–one that we aren’t specifically testing for yet.
First step–we must go to an orthopedic doctor for her shoulder and determine the best course of action. She’s to stop goofing around with it (she finds it a neat trick), and take it easy on it, even though it doesn’t hurt.
As for the connective tissue disorder (he did not specify which as of yet)…it’s a wait and see. Deal with her shoulder first, watch for other symptoms (migraines, heart palpitations).
We are once again in the “hurry up and wait” world.
I hate being here.
With a white hot passion.
I was definitely stupid to get comfortable.
I know better.
We waited a month for this visit.
