CTD Specific

30May 2018

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 kept coming back to me that the boys aren’t the only ones who we had expectations for that required some level of realignment. Continue reading

23May 2018

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 someone presenting with CTD. We can talk to him. He can answer us. He comments on situations around him. It’s not always correct or sounds right but it’s there and we are happy with where he is at as far as speech goes. Continue reading

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