Saturday, August 23, 2014

RTA update

Me returning a call: Hello! How ARE you?
Man: Good. You?
Me: Doing fine. ... wait, is this Steve?
Man: Who?
Me: Steve?
Man: No. This is Alex.
Me: (wracking my brain for any Alex I know) Oh... um... I think I got the wrong number.
Man: Dr. Alex
Me: OH!!! Jonathan's nephrologist!  Sorry. I recognized the number and thought it was my husband. ... He just got a new job and I thought this was his work phone.
Dr. Alex: I wondered why you were so excited to be hearing from me. I just sent you an email, too. Wanted to let you know Jonathan's renal panel looked great. His HC03 is up to 26. So keep the dosage the same.
Me: That's exciting, too. ... Sorry about that, again.

I need to program Steve's new work number into my phone.

Embarrassing conversation aside, I was excited to hear from Dr. Alex. Maybe not as excited as if it were Steve, but who can blame me?

There's a reason I recognized Dr. Alex's number (that's not his real name, but you probably already figured that one out). We've chatted a lot over the past month. And truth be told, I am happier and happier to hear from him. He's had to change Jonathan's dose of renal medication once, but since then, my son has turned into one thriving little man.

He's only gained a pound since we started treatment for his renal tubular acidosis a month and a half ago but he's gained so much else that we're bouncing from excitement.  And considering he couldn't gain even a pound all winter long, we're quite happy with a pound in a month and a half.

Things gained:
Regular BMs

He's bouncing off the walls. He's so much more interested in learning things. He's not walking around in a tired stupor any more. It's not surprising that he hasn't gained as much weight as we'd hoped -- he's burning off all those correctly metabolized calories in learning to do all the things he only wished he could do before.

Continued struggles:
Gag reflex. It's too strong. That boy gags too well. I continue to use the techniques we learned in feeding therapy to help him be willing to experience new textures and foods, but it's a struggle. Crying will also induce the gag reflex, so an accidental bonk of the head often means a misplaced lunch on the floor. We are so glad we bought a home with wood floors.

Chronic lung disease / BPD. We don't talk about this often, but it's still there. It's the middle of the summer, so we didn't expect to see a ton of it, but it's also the middle of the summer, so his pulminologist thought we might want to try a half dose of his steroid.

Monday, August 11, 2014

The Vision of Trees - ROP

This post first appeared in Catapult Magazine and is a raw look at how I processed JAM's potential blindness when he was diagnosed with one of the worst versions of retinopathy of prematurity, "AP-ROP" or "Rush Disease," and I found myself coming to terms with the knowledge that, even with laser eye surgery, he would never have normal vision and may never see more than shadows. 


Emerald, orange and yellow flashed at crisp sunlight, shading my windshield of dead bugs. I arched my neck to look past the filth. Leaves had never been those colors before. I thought I knew what color was, but this display was different. Never in the history of the world have trees given such delicious colors. On this day the trees had decided to become deeper, more majestic, merged together to make the most beautiful bouquet, each at perfect peak.


Our crabapple tree, just days before his birth.

I knew why they’d done this. It was for me, in celebration and in mourning. They’d heard his news. He’d make it to his first birthday. That was almost certain. The worst was behind us. But his eyes may never take in an autumnal feast. They had called it one of the worst forms of retinopathy of prematurity. Fast progressing.  They showed me the pictures, thick veins twisting to and fro, pulling at the thin retinas, stuck beneath a protein cloud that prevented veins from growing into the sunlight. He may soon be blind.


So the trees chose that day, as I drove home from the hospital with this news, to give me their fruits — a gift and a sacrifice.

The wind blew hard in the weeks that came. I didn’t mind at first. It took away the stifling summer, with its long days and no answers. It threw aside the canopy of leaves, the curtain that hid the true frame of things, giving cool clarity.


The trees showed off their shape. Some grew straight and strong. Their roots were secure. Nearly each branch would gain another set of leaves to join in next year’s autumnal feast.


It was the crab apples that darkened my vision. They would pull at my eyes as I drove so that I could not look away. Gnarly, thick, with roots that yanked at the retina of the ground like the vessels in my son’s eyes, unable to reach further into the sky.  The branches on the bottom had died off, shaded by the new growth that would not grow high enough, would not let enough sunlight through.


I wanted his eyes to be maples, tall and thin, stable and continually reaching for the edge of their world. Maples could see. Apples were full of retinopathy of prematurity, and that made it impossible to stretch high enough.


Everywhere vessels called branches flashed to my retina images of his eyes. I wanted the canopy of colors back again. Why hadn’t I minded on the day when the leaf curtain left the sky? I wanted it back, to shield and clothe the tree frames, to help me forget blindness, darkness, to help me see light again. A tree is a tree, always. I tried to convince myself it didn’t matter its frame. Please, give me back light and color and beauty. Show me your leaves, not gnarly death. Leaves give hope.


I parked my car.  Time for footsteps, for movement forward even if this is not the road I’d have chosen. Push on, feet heavy, anticipating a long, dark winter. At that moment of cold reality, and without warning, the leaves beneath me gave way. With their final cry, they gave a gift.




Crunch — kick — crunch.


Sunlight hit my forehead, warming my face. Dark winter was not yet here.


I looked down again, with purpose, looking for the crunchiest leaves.


Crunch, crunch, crunch.


The oak trees might be brown and ugly, but they won every crunching competition. The feeling under my feet was satisfying, the heels on my shoes were best for crunching. I liked the small almond apple leaves for the kick, the way they gathered close and exploded into the air.


The texture of the world took shape. And the texture of the world was good.


The gift came from both the short and tall in the woods and on garden paths. The gift required no light, no color, yet it was still beautiful.


Without light, there is still beauty. In beauty, there is vision. My vision was made new.


I saw a child, healthy and four, crunching oak leaves in his fists, laughing and throwing them into the unreachable and unseeable sky, basking in warm sunlight, unaware that his eyes were like the crab apple tree that threw speckles of cool on his forehead.


He was going to live. And life would be good. I would make it so. I would pass to him the gifts of the trees.