27 June 2014

Test Results

We're back. Thank you for the prayers - they worked! Nothing too serious at all - Abigail almost has a few more diagnosis to add to the list.

Before I explain things, I have to give you the full story of The Phone Call yesterday. So we left the playdate and I saw I had a voicemail. It was a nurse from the Pediatrician's office asking me to give them a call. That was it. That's unusual for my office - they usually leave details in messages. I was on alert when I called them back and it grew way worse when the receptionist said, "Oh yes, the Dr wants to see you today or tomorrow." WHAT?! I pressed for details, but she said she didn't know anything. I scheduled an appointment for two hours from that phone call and hung up. The very first thing that popped into my head was Leukemia. Kids with Ds have a higher chance of getting it than the general population, so we test her every 6-12 months. That had to be it. I mean, what else would you only discuss in person, but the big C word? I freaked out the entire way home. I called Matt and freaked out. I contemplated calling about a hundred other people and freaking out with them, but a tiny part of me did recognize that we could be dealing with something much more mundane. An hour before the appointment, they called me to reschedule until tomorrow (today). "And this is so serious we can't talk about it on the phone?" I asked. "Yes," came the answer. Desperately trying to hold back another freakout, I explained that I was fraught with worry and needed some sort of detail on what we were waiting to discuss with the doctor. Finally the receptionist transferred me to the nurse who explained it had to do with the spine and thyroid and that the doctor wanted to talk in person so we could have a more personal, detailed discussion. Shit, people. Never tell a special needs mother that a doctor needs to see her ASAP and then hang up the phone. It isn't nice.

So anyway. As soon as she said "thyroid" and "spine," I knew exactly what we'd be discussing. I'd read about these problems in the books they give you when they give you a diagnosis. Underactive thyroid, spinal instability. They're on the list of things you test when you live in my world.

The Thyroid
They look at three things when they test this gland with a regular blood test. One of Abigail's three things is a tad bit high. Just barely above the top of the acceptable range. Her pediatrician wants to test it again in a few months to see if and how the numbers change. We might get regular blood work done every few months for a little bit before we take action. Just making sure there is a problem before we start treating it. I personally am very open to pursuing natural remedies before I start Abigail on any kind of regular prescribed medication, but even thinking about that just yet is getting way ahead of things.

The Spine
Abigail just barely doesn't have Atlantoaxial Instability (AAI). In really watered-down terms, her spine (right at the base of the neck where the spine meets the skull) might be too flexible. It's just barely not too flexible. If her vertebrate move one half of one millimeter more, she'll officially have AAI. As you probably guessed, having too flexible of a spine would leave you really susceptible to injury if you got hit when your spine was all flexed out.

We're uncertain if this is something that will stay stable or get worse as she gets older. If it does get worse, it'll mean she can't play contact sports, go diving, or take a gymnastics class. If it got worse and got serious, it could mean neurological problems and maybe surgery. The pediatrician is going to call up a bone doctor and discuss Abigail's results and get a special's opinion. Depending on what they say, we'll either bring Abigail in for another evaluation or hold off and test her again every two years.

In the meantime, the pediatrician advised that we treat Abigail as if she does have AAI, so she won't be taking anymore gymnastics classes in the fall. And I'm also going to hold off on any more horseback riding until we hear from the bone doctor.

So anyway, thank you all for your prayers. I suspect those prayers are why everything is just barely, almost, not really yet a problem. They say, "little kids, little problems; big kids, bit problems" and I wonder if that's true for kids with Down syndrome. Cause if heart surgery and spinal instability are little problems, I'm a bit terrified of what our big problems will be. But then again, physical problems are almost always easier to deal with than emotional ones...

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