Category Archives: Daybue

Daybue Trail: Magical Month of March

Posted on April 2, 2024 by melelllan

I need to start a journal; I know, “you can’t BELIEVE I don’t keep one!” Sad, but true. What I can tell you, though, are some of the incredible things that have happened this month. One day, I promised Katelin … Continue reading →

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Daybue, A Year in Review

Posted on March 14, 2024 by melelllan

I’m sorry I’m 3 days late. I should have had this post to GO! But blog writer fail there. March 10, 2023, the day that ended the “no treatment” era of Rett syndrome. It’s largely true that the first couple … Continue reading →

Posted in Acadia, Acadia Connect, Dame Margaret Brimble, Daybue, FDA, Neuren Pharmaceuticals, Trail to a Texas Trial, Uncategorized | Leave a comment

Daybue Trail: (Not Really as) Easy as 1,2,3

Posted on January 25, 2024 by melelllan

Oh, this is not an easy trail to be sure, but after about two weeks at full dose it’s easy to see improvements- motor-wise she’s zooming up, language-wise she’s noticeably improving, though not at the extraordinary rate I saw in … Continue reading →

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Daybue Trail: 3 Months In

Posted on September 29, 2023 by melelllan

Well, this sure has been a rollercoaster of a ride; I don’t think it’s stopped, but I do think we are slowing down. Things seem to be settling in the Rett doctor community with each bit of information, parent input, … Continue reading →

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Daybue Trail: Leap of Faith

Posted on September 1, 2023 by melelllan

There are many times I’ve taken a leap of faith. Once, I decided to just buy an airplane ticket and go to Ireland; so, I did. Could the trip have gone better with some planning, probably. But, what an adventure. … Continue reading →

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Daybue Trail: Two Months In

Posted on August 19, 2023 by melelllan

Technically it was 8 weeks yesterday and two months in 4 days, so no one give me a hard time with my dating 😉 I’ve written a lot over the last few weeks, I wanted people to know it was … Continue reading →

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Daybue Trail: Six Weeks in-Circles and Circling the Wagons

Posted on August 6, 2023 by melelllan

For the first time in about 4 weeks, I can see the trail laying ahead. It’s been a challenge, not unlike the pioneers that came out west in its own way. I love our community; we are each contributing to … Continue reading →

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Daybue Trail: Obstacles, Options and Overcoming

Posted on August 3, 2023 by melelllan

While many families are enjoying a relatively easy ride in the stream of Daybue, other families are struggling to keep up with them as they stumble over obstacles, face flash floods of poop, and encounter distressing factors like weight loss … Continue reading →

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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 … Continue reading →

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Daybue Trail: Day 21-26

Posted on July 19, 2023 by melelllan

What can I say, my child is a rock star. Despite ALL the challenges, a diaper rash that is kicking her butt, an appetite that can’t seem to find the bread crumbs back to home, and topped off with antibiotics, … Continue reading →

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