Wednesday, January 13, 2010

A few more thoughts

on yesterday's post.

I don’t believe that a norepinephrine deficiency makes my daughter the sweet, wonderful, amazing person that she is.

In fact, the older she gets and the greater the expectations of her, the greater the differences between Ellie and her peers become, I see the beautiful light within her dimming slightly. I think her challenges are becoming more apparent to her and getting in her way.

This transition is visible in the pictures of her framed on the wall in our family room. At one, at two, and three, she beams at the camera like she carries the light of a supernova within her soul. In preschool, she smiles. And in this year's school picture she looks directly into the camera: eyes open, mouth slightly quirked up one side, a little puzzled. She spends more time alone than she used to, working through her day's experiences and fixing them down. She's still my Ellie. But life is getting harder.

Before Ellie had surgery to fix her heart, we gave her digoxin and captopril. Because she has low muscle tone she works with a physical therapist, an occupational therapist, and a speech therapist. If Down syndrome is accompanied by a legitimate medical problem, why wouldn’t I treat it medically?

If norepinephrine supplementation would help Ellie's brain function better, we'd look closely at the research, talk to her doctors, and consider giving it a try.

She'll still be my Ellie.


Anne Fernald said...

A great post. You are a wonderful, thoughtful mother. I am sure you'll do what's right for Ellie. Part of what makes me admire you so is your openness to life and change. Bravo, Sarahlynn!

RobMonroe said...

Good follow up post. I didn't realize she was still doing PT, but should have.

And you're right, it's a medical condition - I would not go without treating my kidneys, and would change to a better medicine if I thought one was available.

Sarahlynn said...

Thanks, Anne! I don't think of myself as being very good with change, but perhaps I fake it.

Rob, oh, yeah: PT, OT, Speech, the works. But she works with her therapists at school, now, freeing up our home time together. :-)

I'm glad you treat your kidneys.

Orange said...

Rob: Kidney disease, represent! FSGS is in da house! All the cool kids treat their kidney disease, yes, we do.

Sarahlynn said...

From the two of you, I've learned so much about which evil foods contain massive amounts of potassium. But I will not give up salsa until my own kidneys start to go!