Creatine Community Blog

21Nov 2016

Trenton Smiling

I would have never guessed in a million years that I would have a child who has CTD. I mean, who has even ever heard of it? I sure hadn’t. Not until the day we finally got in to see a geneticist. I still was skeptical. All these tests they were running, all the time you hear that it is a less than one percent chance that your child will have this or that, it would never happen to me right? Continue reading

11Nov 2016

Beth's Kids

I woke up this morning with anxiety. We needed to change my daughter’s g-tube today. Through the course of treatment for GAMT, it became clear that she needed it for several reasons—medication administration, additional nutrition. She may not always need to use it as she gets older, but it was the best decision for us at the time. Because the g-tube can physically deteriorate, it is necessary to change it every few months. I do this for her at home. It’s not a great experience for either of us. Despite changing it every few months for the past five years, the idea of it still derails her. Continue reading

22Oct 2016

spiro-jammies

Sometimes, as a parent you get sucked into the daily grind of routines and chaos. It’s life with kids. And this life and its fast-paced schedule zooms us ahead, one season quickly following the one before. It will always seem this way. I often hear the phrase, “I can’t believe it’s_______!” Insert whatever seasonal descriptive in the blank, and that is the common underlying tone of the world in which we live. Always rushing and looking ahead. I catch myself doing the same thing. But as a parent of 3 kiddos, and one with special needs, I’ve slowly realized the disservice I am doing when all I do is look ahead. Continue reading

16Oct 2016

brothers1

Greetings again friends! I hope this post finds everyone well as we move headlong into the fall season. Last month I had the opportunity to celebrate Elijah’s ninth birthday. Such an awesome day had me reflecting how much this one little boy had been through in his short nine years on this crazy planet. Upon all this reflection I naturally started to think about our little guys Simon and Ezra, who will undoubtedly share the path that their big brother continues to blaze. Continue reading