A couple of weeks ago, we participated in something special – our Ben was a Patient Champion at the Nationwide Children’s Hospital Columbus Marathon and Half Marathon. It was the most amazing experience for all of us, including Ben, and one we’ll not soon forget. It made us feel seen, heard and celebrated. Again, amazing.
Good day friends! For this blog, I thought I would write about something I have been asked about several times, the feeding tube. It goes by many names, ranging from G-tube to Peg or Mic-key, but they all do pretty much the same thing, and in my opinion, that thing is to provide an amazing […]
As a mom of a child with a rare condition, particularly of my Ben who has Creatine Transporter Deficiency (CTD), it’s so easy to let your mind wander into topics that make you really sad or scared. That’s been happening to me recently.
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 […]
Hi everyone out there! I hope everyone is doing great. Just to fill you in on our family, we have 4 kiddos, 1 of them has CTD and Autism. We have had a rough go lately it seems with our son and his language. Our son Spiro has a huge vocabulary I would admit for […]
My oldest child, Chelsi, my first born, my 18th birthday present, and my graduation gift all bundled into my arms forever changed my life. Ok, Ok! A baby having a baby…there….I said what society said. For those unaware, Chelsi is the mother of Caiden. We have a dual CTD diagnosis that was discovered in the […]
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.
Happy 2018 everyone!! We live in Canada and have been dealing with a lot of cold weather and snow here. It’s been one cold winter!! So my CTD kiddo takes a bus to school. My other children walk the 10 minutes to their home school down the road, but my CTD kiddo gets a bus […]
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