NEU (ASX) Katelin’s Turn is HERE!!!

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Daybue Trail: One Month In
Posted on July 27, 2023 by melelllan

Above all, this month has proved to me again just how brave Katelin is. It’s been a challenge for me as I’ve worn a lot of different hats-nurse, doctor, mad scientist, maid, laundry master extraordinaire, Sherlock Holmes, and Mom. This is nothing compared to what Katelin has endured. Her entire schedule, daily life has been turned upside down due to a domino effect of side effect, side effect to the medicine to help the side effect, and another side effect to another medication to help the side effect of the first medication. And, YET, not one screaming fit, minimal self-injurious behavior, and even a smile now and then.

All over the United States, right now, brave parents and children are giving this a go. We are not unaware that it is up to us to get it figured out for the rest of the world. The lengths that we are all willing to go to needs to be appreciated, one day, by the rest of the world; when it’s your turn the knowledge will be out there for you. Every family has a different set of symptoms, different solutions, and eventually all of that will come together.

These months that our kids have been on Daybue have seen some serious miracles, even that’s not the right word; you need a metaphor like… Daybue is like the Webb Telescope, showing the world awe inspiring, beyond words beautiful, sights never fathomed by Mankind. A child who’s never spoken repeating words, a child who’s never stood learning to walk, and my daughter, who has not gone more than a few days without screaming for hours, just not doing it. It’s only been a bit over a month and I can barely remember the me who woke up on alert every day. A month and I haven’t chased her to block her from hitting her head on every corner of counter or chair.

Each year we look forward to Katelin’s BIG birthday present, when I bring her best friend, Betty, out for a vacation. We fill it with what we can around behaviors and her program; but THIS year, though we were limited by her medical issues and the heat- there was no program and NO behaviors to speak of. That meant we did a LOT! The annual pedicure was a must and a great success, with a blip that I will talk about later, many meals out and about, book upon book handed to us by Katelin herself, trips to the Natural History Museum, the Reptile Zoo, the Nature Center and more. Some of that might have been possible, but with Daybue-all of that was possible. She laughed in the car instead of screamed. She transitioned from activity to activity with no problem. Not once did she bang her head into the car.

The Rotunda ceiling

One of the largest, flawless quartz crystal ball in the world.

I have a game on Facebook-What do Ithink this looks like???

Every day I read and hear about life changing events. I know that for us, even though I had hoped to have her up to more than 10 ml 2x/day, I will gladly take the behavior that comes with Daybue, which is little enough to not wake up every day on eggshells, no longer worried if I take her somewhere I will have to be ready to run on a moment’s notice. I feel sad for those children who just can’t do it, not even 1ml. I am heartbroken for their parents who tell us all that it’s ok, they are still so thrilled for those who can take it and are flourishing. That’s the kind of community you want to be in- the epitome of sportsmanship- we’re a team, and as a team, we’re winning.

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Eating day 33, 2 days back on Daybue after a week.