09 August 2016

I am her first and best advocate

Photo by Brandi Gilbertson
If you've been following this blog for a while, you probably already know about Tink's health concerns. They've been going on since her birth (well, before her birth, really), and sometimes I feel like we're going in circles trying to figure out what's causing these problems.

Right now, the most important issue we're dealing with is failure to thrive. We've ruled out any physical GI problem. Her blood work (almost) always comes back perfectly normal. So we're taking her care in a different direction: psychological.

Tink's pediatrician has referred her for behavioral therapy for a probable feeding disorder. We're optimistic that the treatment plan will help her, and we'll be able to get her healthy.

The problem is that my mama-sense is still tingling.

When Tink was still in infancy (a little over a year old) we took her to see a pediatric geneticist. While he didn't find anything at that time he could diagnose her with, he had a few conditions in mind that she could have, but was too young to meet the diagnostic criteria for. There were also a couple of conditions he was thinking about, but they would have required specialized genetic testing to diagnose, and he wasn't prepared to do that at that time.

As Tink has gotten older and (somewhat) bigger, the geneticist's report keeps echoing in my mind. I've done a little research (I know), and I can see signs of one of the conditions the geneticist mentioned all that time ago.

I'm reluctant to say, "I think Tink has this" to a pediatrician or other health care professional because I don't want to sound alarmist or that I'm looking for something more serious to be wrong with her. I don't want that at all. I want my daughter to be healthy. And the key to getting her healthy is finding out the cause of these problems.

As her mom, I know I am Tink's first and best advocate. I know what's normal and abnormal. I know if she's okay or not okay. And I have to follow my instincts when advocating for her.

I do think she might have one of the conditions the geneticist mentioned. But she might not. And I definitely think the more pressing concern is addressing her probable feeding disorder. Once that's out of the way, she'll either get better or we'll move on to the next round of diagnostic testing.

And I will always advocate for her as fiercely as I can.

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