Sunday, June 23, 2013

Kind of a Big Deal

We did not forget the big day yesterday. We were just too busy having summer fun to sit down and post our reminder that:

Collin has been seizure free for THREE YEARS.

I don't have the words to give thanks for a gift of that magnitude, so we showed our thankfulness by living this week fully - swimming, cuddling, visiting with loved ones, taking walks, and picking blueberries, with lots of smiling and laughing mixed in.

Ready for some more fun.

Sunday, June 16, 2013

Father's Day

Another day to give double thanks:

...for the joy of being wife to a father who loves with abandon and self-sacrifice




...and daughter of a father who taught me what to look for.


Monday, June 10, 2013

Collin is Not a Special Needs Kid

I was enjoying a friendly woman's interaction with Collin at a store last week, when I felt my smile tighten.

"I have a friend who has a special needs kid," she said. "I know they can't focus [visually], but the way they recognize voices is so cool."

This was a kind person. She was stepping out of her comfort zone to interact with a little boy who could not respond to her in a way she would understand. I was very thankful for her effort. But I still stiffened at her words and I had to think through why.

Long, long ago - back in the earliest days of the Collin era - a friend shared an article with me about people-first language. This was back before we had even thought about the term "special needs," when we were just surviving the first horrors of seizures and their treatments, trying not to think about what it would mean long term; but, somehow, this friend had the foresight to interject into our lives this idea that Collin is "first and foremost, a person who has individual abilities, interests, and needs."

So, just like it's untrue to say things like

"Those autistic kids are loud, but they're geniuses when it comes to state capitols."

or "Those food-allergy kids are scary. They can't even be in the room with a peanut."

or, "Those neurotypical kids have it easy. They don't have to struggle in school."

It is similarly unhelpful (and silly) to refer to "disabled kids" or "special needs kids" and what they do or don't do, what they are or are not like.

I know it's not easy. It's one more thing to think through in an already-complicated and sometimes uncomfortable social situation. But I would argue that it's worth it. Not only does it attribute the respect any person would want, but it also orients your own mind and attitude with an openness that leads into a deeper relationship with the person you are describing or addressing.

Because, if you are lucky enough to know Collin, you know that he is NOT a special needs kid. Besides the fact that there really IS no such thing, there is also nothing about him that can be accurately generalized to a bigger group. He is an amazing four year-old kid. He works hard and laughs big and enjoys life with much gusto and very little complaining. He loves swimming and swinging and iPad videos and playing outside. He needs to use a wheelchair. And a feeding tube. And a breathing machine while he sleeps. And a special diet and various medicines. He needs people to stand still and close so he can see them. He needs help using his hands. He can't communicate his thoughts in words yet.

Yes, these are all needs that most other kids don't have. But they don't define him. He, like you, is much more than what he can or cannot do.


Wednesday, June 5, 2013

The Flip of a Switch

For some reason, this year's doctor season has ended up being 6 months long instead of the usual 6 weeks. We have one more straggler next month, which will wrap up this season just in time for the next to start.  Last week, we had our check-up with endocrinology to monitor Collin's growth hormone dosage.

Here is a super short overview to orient you in the growth hormone story:
- We pursued growth hormone therapy primarily for the increase in muscle mass and the anecdotal reports of developmental progress rather than linear growth.
- Collin receives growth hormone NOT because his body doesn't make it, but because his brain couldn't properly regulate its secretion.
- We had a rough start as Collin reacted adversely to the preservative in the commonly used HGH pens, but finally found a way to give him the hormone using sterile water as a base.
- Collin responded well to treatment and was on the growth chart within 8 months.
- At our last checkup, I expressed concern at how fast Collin was growing and the tight ligaments and sore Mama-back that come along with that. The doctor agreed to keep Collin's dose the same rather than increasing it for his weight and see how he responded.

Well, it turns out that decreasing Collin's dose did nothing to slow down his growth. In fact, his rate of growth increased over the past six months. This was baffling to me, but in the words of the endocrinologist, "I think my buddy Collin may be drawing a long stick for once. He's drawn his share of short sticks and I have a feeling he may have gotten the long one this time." Translation: it almost NEVER happens, but the doctor believes that Collin's brain may have flipped a switch that is allowing it to properly regulate secretion of its own growth hormone.

I was thrilled, of course, to hear this, but not entirely surprised. Over the last three months, a couple of other changes have surfaced that can only be attributed to a sudden maturation and/or organization of the brain. First, Collin started sleeping through the night. It used to be normal for him to get us up three to eight times every night, not including the instances we slept through out of sheer exhaustion. Over the course of a few weeks, he just stopped getting up at night. During this time, even though he was sleeping more soundly and despite his bipap machine, he was continuing to have periods of apnea and oxygen desaturation throughout the night. Then, suddenly, this stopped too. His oxygen saturation shot up to the 'normal' healthy range and it's been weeks and weeks since he has had a legitimate desat. It's unbelievable. This is the kid who, in his first sleep study was having 30 desaturations or more PER HOUR. The kid who, even with oxygen streaming into his nose, would commonly drop his oxygen levels into the 60s (!!!!). And now he just doesn't. Like, ever.

So, what now? Well, aside from enjoying our improved quality of sleep, we are going to leave Collin on what's working for a while and then repeat a sleep study sometime in the next year to explore weaning options for oxygen (which he uses during naptime) and bipap (overnight). In terms of growth hormone, we left the dose the same again, so we will basically allow him to self-wean by outgrowing his dose and watch his growth.

As with everything else in the past 4 1/2 years, the only way we'll know what comes next is by watching Collin and following his lead.