CTD Specific

14May 2018

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 process of diagnosing Caiden. As Grammy and Grampa-pa, we co-parent Caiden. Continue reading

12Apr 2018

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? How far behind are they gonna be?” Well, I can give you the answer to that when you show me two identical purple snowflakes. Continue reading

29Mar 2018

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 and helpless feelings. Continue reading

21Mar 2018

“Have you ever had non-verbal students in your choir before?” I asked the junior high choir director a few months into Benny’s 7th-grade year. Without any hesitation, his director said that he had, in fact, had non-verbal students in the choir and it wasn’t an issue at all. Mr. W made it very clear that Benny is just as much a part of his choir as any other student. I will never forget how insistent he was about including my son. It turns out that music was the perfect choice for him. Continue reading

27Feb 2018

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 and goes about 20 minutes away from our home to attend a special needs class. Continue reading

25Jan 2018

Baby in Hospital Bed

Some background to our story; I work in a well-baby nursery and Neonatal intensive care unit,  and most of my friends do as well… My entire pregnancy was documented and witnessed by these people, and they were so excited to be among the first to meet my daughter. I had the perfect pregnancy.  Minimal nausea, no swelling, optimal weight gain, and no blood sugar or high blood pressure issues.  So when at 37 weeks my doctor announced I was oddly measuring 2 weeks behind it did take us all off guard.  We were given a diagnosis of “small for gestational age” then sent home on bed rest for a week until I was too be induced. Once the day finally arrived everyone on the floor was excited!  Every single one of the nurses had patiently waited  9 months to meet my little girl.

Continue reading

21Jan 2018

Good day friends!  As I am traveling a bit with work right now, I have begun to think a few deep thoughts on what it is that I, as a dad, am striving for and what my goals are for my CTD boys.  Big questions I know, but the answers that I have come up with have really been a surprise, even to myself, and I hope that sharing my insights might help some others along the way. Continue reading

29Dec 2017

Amy and son

At the end of the year, I like to reflect back so I can look forward and plan for the new year. 2017 has been a challenging, yet rewarding year for our family. Like any other family, life moves at warp speed sometimes, but things tend to slow down near the holidays. While every day is an opportunity to reflect and be grateful, I still like to take the time to reflect on what life has offered us as the year comes to a close. Continue reading

01Dec 2017

Ben sitting on steps

After learning about our son’s Creatine Transporter Deficiency (CTD) this past January, we started down the path to begin supplementing with a set of amino acids. When you’re diagnosed with CTD and there is no treatment that reverses its symptoms, this is the most common treatment you can try, apart from therapies and other methods. Whether or not it makes any difference for a CTD child is inconsistent, and varies greatly depending on who you talk to and which scientific study you read. Regardless, for us, it was one of those things that we knew we’d rather try than miss out on a potential opportunity – and they have since become part of our everyday life. Continue reading