CCDS Family Stories

  1. Home
  2. CCDS Family Stories
14Sep 2018

“Life With CTD” – Chelsi

“Life With CTD” – Chelsi

Hello, my name is Chelsi and I have CTD. 23 years have come and gone before I even knew about this condition. If it wasn’t for my son I would have gone my whole life without any knowledge. When I first got diagnosed I was scared. What does this all mean? How are people going to react? Am I going to be treated differently? Life wasn’t always easy for me growing up. Making friends was a struggle. Communicating appropriately with someone was definitely a no go for me. Continue reading

20Aug 2018

“The Feeding Tube Post” – Nathan

“The Feeding Tube Post” – Nathan

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 way to deliver nourishment to my boys. Now before I go further, I have to give the request warning that I am in no way, shape, or form a medical professional. I do not intend for this blog to convey medical advice or a course of treatment. Rather, I would like to tell everyone how we wound up being a “tubie” family, what benefits and challenges we have faced, and finally, I will add a little advice that I think would be helpful for everyone to know. Continue reading

29Jun 2018

“Enriching Her Life With Therapies” – Randi

Sonnet walking smiling

“Enriching Her Life With Therapies” – Randi

Since Sonnet wasn’t diagnosed with GAMT until she was seven-years-old, she is severely affected developmentally in every way. We found that with treatment and therapies she gained new skills quickly. Her therapists are a VERY important part of our team. Continue reading

21Jun 2018

“Let It Be” – Amy

“Let It Be” – Amy

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. Continue reading

15Jun 2018

“That Friend” – Shelly

“That Friend” – Shelly

I feel like all us parents of special need kiddos have that one person who is our main go-to.  Who we all wonder why the heck they choose to be involved in our lives but are so extremely happy they stay.  This post is going to be a little different because I’m pretty much just going to shout out to our friend.  But I feel like you guys will relate because I know you guys have this Friend in your life too… Continue reading

11Jun 2018

“Summer!” – Laura

“Summer!” – Laura

Summer is the most coveted time of the year around our house… AND IT’S HERE!!! Both boys have birthdays in the summer, the weather is perfect for swimming and being outside all day, shaved ice and late nights playing – it is just great! Continue reading

30May 2018

“Realignment” – Nathan

“Realignment” – Nathan

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

“Perseveration of Speech” – Janet

“Perseveration of Speech” – Janet

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

“The Advocate, The Meanie, The Mom…” – Regina

“The Advocate, The Meanie, The Mom…” – Regina

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

“Traveling with Special Needs” – Randi

“Traveling with Special Needs” – Randi

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