5 Reasons to Hit the Pause Button On Your Care

27 Apr

Today Abby had a doctor’s appointment in Chesapeake. Her appointment was with her “function” doctor who follows Abby’s mobility progress and manages her CP care.

With chronic illnesses or long-term special needs, we (the family) get tossed around a lot between providers. It’s a lot like a being a load of wet clothes ready for the dryer. Sometimes you’ve been sitting too long in the washer, but nobody checked on you close enough to know you stink.

Sometimes you smell great, but because you’re mixed in with an accidental diaper (not that I’d know anything about THAT), you get dried along with things you shouldn’t be dried with. And then you are a wrinkly, diaper-innards mess.

Can you tell I’ve been doing a lot of laundry lately?

Since October, Abby’s had two rounds of Botox, five weeks in a cast and four weeks in a new AFO. Throughout that time, she’s had PT once a week and taken a gymnastics/dance class once a week as well.

We’ve been on top of it! So proactive! Eye of the tiger! Giving that CP Hell!

The results? She walks worse than before we started.

Abby playing at the park.

Abby is all smiles playing at the park.

I cannot begin to tell you how disheartening this has been as her mother. The past few weeks her mobility has weighed so heavily on me. Not only do I know, so does every person she walks by. It’s no longer a private battle.

And yet, her providers have been normal about it all. Optimistic about the range of motion she gained. Totally okay with this just being part of the process.

This all seems nuts to me. This is not okay with me. I do not concur. I should not have to carry her. My heart should not skip this many beats when she’s playing at the park. I am going to have a heart attack. We did all this to help her get around better, not make it worse. So why is it?

Over the weekend, I decided to hit the pause button and check the status. I don’t want us tossed anymore.

What does the pause button do?

  1. It gets attention. I called and went right past the receptionist to leave a message with the nurse in Abby’s doctor’s office. When she called me back, she was able to fit us in this week.
  2. It gives you a chance to be honest. I’m worried with Abby that all we did was fix one problem and create another. This doesn’t feel right…so how do we fix it?
  3. It shows you’re not a passive patient. Doctors have a tendency to breeze in, have some quick personal small talk, then quick medical small talk and before you know it, you’re in the car with a new appointment at another provider, and a follow up in three months with this doctor. Instead of just brushing the surface of an issue, being an active patient will stop the small talk process so real talk can happen.
  4. It gives you time to learn what’s next. I know medical professionals don’t want to give too much information at one time. But personally, I like to know the “what ifs” just so I can be on the lookout. Or to know if it’s normal! Or…not.
  5. It creates a break in the pattern. It’s good to say hey, we’ve been here and there and here and there and it’s not working. I’m frustrated. It’s better to pause the pattern by calling attention to things when they’re stagnant or not producing results.

My grandma used to say if you knew what your year would hold when the ball dropped, you’d probably go kicking and screaming into the New Year. That’s how I feel about each step with Cerebral Palsy.

With a new plan to increase PT sessions and try out the Bioness system again, plus a status check back with the doctor in a month, I feel better with the plan. We may be back to tossing again next week…but on our own terms.

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