Creatine Community Blog

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

15Apr 2018

Everyday life with special needs children can be challenging. But one adjusts to the “new normal” and establishes a routine that works at home. When you add traveling to the mix it is a whole ‘nother mix of complications. My daughter thrives on routines, yet plane trips and overnight medical stays are just part of her reality (and mine!) How do we cope with these trips thrown in every few months? Here are several of the things that have helped us to have a more positive outcome. 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

04Apr 2018

One of Levi’s greatest attributes is his positive attitude. Things really can’t get him down. This has been an interesting issue when it comes to discipline or consequences of negative actions. He really just rolls with it, gets through the unpleasant with a smile on his face, and otherwise loves everything this life has to offer him. 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

 

Disclaimer: All thoughts and ideas expressed in the Creatine Community Blog represent the individual blog contributor's opinions and not those of the Association for Creatine Deficiencies. The ideas expressed in the Creatine Community Blog, and any other locations on the creatineinfo.org website, should never be construed as medical advice, even if the information relates to actual health care experiences of the contributor. Individuals should always follow the instructions of their physician and make no changes to their care unless instructed to do so by their physician.