Monday, October 29, 2012

Why I Don't Care if You Stare

As many of you know, Sadie began her journey to diagnosis with a hunt to find out what was going on with her right eye. I remember leaving one of Sadie's first opthomology appointments alongside a mom pushing a child with Downs Syndrome in a wheelchair.

Right or wrong, I remember thinking to myself " could always be worse."  I also vividly remember how very put-together this mom looked - tall, attractive, with her hair in a ponytail and wearing yoga clothes. I admired that she looked like she had it all together, despite the challenges she faced. Now, how I wish that vision impairment was Sadie's only disability.

There are many conversations by parents in the special needs community about others staring at their child. Most of these discussions on blogs and message boards hover around the "rudeness" of the adult or child who is staring at their special needs kid.

However, my feelings about this differ slightly. Honestly - I really don't care if people stare. In fact, I understand why they do. Sadie looks different. It's not often you see a little 2 1/2 year old girl in a wheelchair with a tube hanging out of her nose.

Adults usually politely look at her, then look away. Children are a little different, they examine her very closely, and often ask their parents a question about her. "Why is she in that chair?" "What is that cord in her nose?" "What happened to her?"

A few parents will look at me apologetically, to which I simply smile back at them. I've found that most parents handle these questions quite well. "You see, honey, some kids are in a wheelchair because it takes them a little longer to learn to walk." or "Remember when your friend Isabelle had an NG tube when she got sick? That little girl has one too."

Parents shouldn't feel like they have to apologize for these questions. Kids are naturally curious. I expect stares and questions from children. I actually find myself quite interested in the parents' responses to these questions.

And, yes, some adults stare too, and I'm OK with that. There were the two nuns in a hospital lobby recently who couldn't take their eyes off Sadie. I imagined them to be saying a few prayers for her, making a mental note to add "the little girl in the wheelchair" to their prayer list. I admit, sometimes even I stare at another special needs child...try to guess their diagnosis, or to check out their wheelchair or equipment.

My point is... you never know why people are staring. I found at least one other person who agrees with me. But for every article like this, there are at least ten others written by special needs parents about how rude it is when people stare. And, I can't say that I blame them. After all, when you are "in the club," you become accustomed to fighting - with doctors, school systems, insurance name it. So the defenses are naturally up. It's simply not the way I like to respond.

SO, next time I'm in Target - unshowered and lacking makeup - and I see someone staring, I'll just assume the stare is one of admiration. Or, at least, that's what I'll tell myself.

Sunday, October 21, 2012

The Next Fire

Sadie smiling in her chair
Life with Sadie is a series of putting out fires. We're always waiting for the next one to pop up.
Luckily, the biggest fire of this Fall was extinguished. We heard back from the docs that the CT scan showed her brain looked stable. No fluid was building up, and the cyst fenestration surgery appeared to be doing it's job - allowing the fluid to naturally circulate again. We all exhaled.

However, soon after hearing this good news, another set of fires popped up. This Fall began with the first "fire," Sadie's mild pneumonia. She spent a few days on oxygen and recovered quickly. Shortly after finishing her antibiotics for pneumonia, she was diagnosed with a Urinary Tract Infection (UTI). Sadie used to get UTIs frequently when she was younger, but since starting a maintenance course of Bactrim, she has been UTI-free. Well, this one must have been a bit too much for the antibiotic to handle. So...she started another 10-day course.

In the middle of treatment for her UTI, the third "fire" erupted. Sadie awoke last Saturday morning very lethargic and with a "barky" cough. The pediatrician diagnosed croup. Her oxygen continued to drop throughout the day, until our home oxygen tanks just couldn't keep up anymore. Down to Lurie Children's Hospital we went...

She was diagnosed with a respiratory virus (rhinovirus) which led to the croup. When adults develop rhinovirus, it manifests itself as the common cold. When Sadie develops rhinovirus, it turns into an ER visit and a two-day hospital stay. By Monday morning she was completely off oxygen and back to herself.

You see, the problem with these fires is that the embers from one fire can ignite another. Along with an xray of her lungs, the docs xrayed Sadie's belly to get a better look at the GI issues she's been experiencing (as mentioned in the last blog). While the lung xray looked fine, the docs were concerned enough about her belly scan that they called in the surgery team to look for an obstruction.

Luckily, no obstruction was found, but the belly was full of poo and gas - even though she had a series of bowel movements in previous days. She is scheduled to see a motility specialist to see why her bowels aren't moving like they should be. The docs mentioned that the full belly could have contributed to the breathing troubles as well.

Staring at the Jellyfish at the Jellies exhibit!
And there are some fires just refuse to go out no matter how much water you throw at them (case in point, the seizures). Sadie's seizures have been pretty awful lately. She's still having her typical infantile spasm clusters a few times daily, but has also started to have lip-smacking seizures. Her face gets red and she'll smack her lips and move her mouth around strangely. These seizures have been occurring about 20 times a day. On Thursday, she was back at Lurie for an overnight EEG. In the short time she was hooked up, I pressed the seizure button twenty-two times. Yes, twenty-two times.

We had been trying to wean her off her heavy medicine load for some time, but it looks like the medicine we were trying to wean (Vigabatrin), may have been doing some good.  So, now we are titrating the dose back up.'s a horrible game of trial and error.

On a lighter note, in between these illnesses, we were able to get Sadie out to the Shedd Aquarium to look at the fishies! She just loved the jellyfish! I think it was a combination of the dark room and the lit-up aquarium. You can tell just by looking at her face how much she enjoys it. (And, no...sorry folks...we will not be getting jellyfish at home.) the meantime, we'll keep working on these fires until we find a way to extinguish them once and for all.