Good day again readers! I hope everyone has been enjoying the warmer days and (hopefully) sunny weather. If you caught my last post, I discussed the expectations that my wife and I have for our boys with CTD and how those expectations or goals have changed over time. As I finished writing that post, it […]
If you read my previous post then you know we received our CTD diagnosis at 9 months old. If you didn’t… well, now you know. If you’re reading this post, odds are your child also has just gotten a diagnosis, and I know one of your biggest questions is “When will they hit this milestone? […]
Before we found out about Ben’s Creatine Transporter Deficiency (CTD) diagnosis, he was diagnosed with infantile scoliosis due to his hypotonia (which was a result of CTD, we later learned). Any diagnosis is two-pronged – you feel happy to have an answer to a mystery, and yet you have a diagnosis which presents many scary […]
Our typical day and what our boys experience with CTD.
“There have been angels in my life….” This was written to me on a thank you note by the wife of a friend who passed away suddenly. For some reason, that quote always stuck with me. It meant even more to me when Will was little and his babysitter took me aside one day to […]
When Trenton was born in New York, he weighed 7 lbs 2 ounces. Before we left the hospital, he dropped to 6lbs 12 ounces, by our first appointment 6lbs 9 ounces and stayed there. He was bottle fed and projectile vomited often. I took him to the pediatrician and they just kept informing me that […]
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