I’m grateful for so many little miracles in my life. Every time I watch Max play soccer or hear him bounce the basketball, I am grateful. There was a time, not long ago, that I thought that Max would be very, very different from kids his age. Even today, I have a fear that something […]
Thanksgiving is upon us friends, and let me personally wish each and every reader a Happy Thanksgiving! (Those of you not in the United States, feel free to scarf down some turkey and pie, just for the fun of it!) The post this week will be what I am thankful for, or at least a […]
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 […]
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. […]
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 […]
By Judith Miller, PhD, and Rebecca Thomas, MA – The Children’s Hospital of Philadelphia Creatine Transporter Deficiency (CTD) – work presented at the Society for Developmental and Behavioral Pediatrics conference in Savannah, GA.
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 […]
I recently came across an organization that, when I took a look at their mission and what they based their mission on, really resonated with me. They are called Suffer Better (sufferbetter.org), and their tagline is “give your all, and give back.” It reaches out to endurance athletes who take on grueling training and events, and who […]
My son William (5), has CTD, and started big school for the first time this year. William has always been very passive, largely due to his temperament but also his lack of physical mobility (walking etc.) and significant expressive communication delays. Our main concern was that he would get overwhelmed and lost in a large class at a […]
Meet Max. Six years ago (almost seven), my life changed when he was born. He was my first child and the most amazing gift to me and my husband. When I was pregnant, everything seemed pretty normal. Clinically, the only thing that was wrong with my pregnancy was I had a single umbilical artery. It was […]
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