Category Archives: Uncategorized

Rett Revealed!

Posted on April 4, 2024 by melelllan

Due to a misunderstanding on my part, I believed this would be launched in May. I apologize and I am SO excited to introduce- Rett Revealed!! Announcement from Acadia: We are excited to share the launch of Rett Revealed (https://www.rettrevealed.com/)  in honor of … Continue reading →

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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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Rett syndrome’s Sophie’s Choice

Posted on March 18, 2024 by melelllan

A personal blog needs to be honest. Over the years I have been the best mother for Katelin. The painful truth is by doing that I failed to be the best mother for my other children. This was aggravated by … 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 →

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How to Put into Words…

Posted on December 12, 2023 by melelllan

It’s my “job” as a writer and author to put things into words, to take the difficult and make it easier to understand. I am not a writer who likes to take a solid concept and make it oblique, so … Continue reading →

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A Decade of Hope

Posted on November 19, 2023 by melelllan

Ten years ago, today, Katelin proved to me that there was hope-the war against Rett syndrome could be won. Hope is a powerful thing. When I was young, I read a story about a POW in Vietnam who had sewed … Continue reading →

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Daybue Trail: 5 Months In, It’s a bit of a Bear

Posted on November 15, 2023 by melelllan

I’m sorry I haven’t written more; it’s been an ever-changing world in our home as I fine tune the regimen that keeps her able to stay on Daybue. I didn’t want to not check-in, though. Sometimes, I feel we’re in … Continue reading →

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Daybue Trail: 2 Weeks Uninterrupted!

Posted on October 7, 2023 by melelllan

Well, I feel like I have run a marathon, and while I definitely didn’t come in first, I made it to the end- 2 full weeks at half dose. This has taken preparation, rations, stamina and a routine in training. … Continue reading →

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Discovering Daybue

Posted on September 13, 2023 by melelllan

Short notice! Tomorrow Acadia will be hosting a Caregiver Webinar about Daybue. Register-HERE The first was was a great introduction and I recommend it for anyone considering or even those already on it, as there will be a Q & … 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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