Wow! I’m still processing all of the things I learned from the 2018 conference in Austin. The CCDS Symposium was incredible! For me, the information was invaluable and as a result, I feel more equipped going into doctor and therapy appointments. Even more amazing were the connections and networking that happened—as a result of the ACD bringing scientists, doctors, pharma companies, therapists, and families together. Continue reading
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
“It’s so Austin…” I heard that sentence a lot the weekend of July 27-29. I inferred it to mean several different things- odd, wacky, unique. The hotel elevator has to use your room key to unlock the button so you can go up a floor, and it had no rhyme or reason if it was going to go up or down… It’s so Austin! The doughnut shop around the corner, Voodoo Doughnuts (brought to all of our attention by Mac Cafferty), where you can buy a cereal topped doughnut or one shaped like a voodoo doll… It’s so Austin! The local zoo that only houses rescue animals and its very offbeat and rustic landscape… It’s so Austin! So it seemed fitting that our odd, wacky, and unique CCDS Family was all congregated together in this town known for the odd, wacky, and unique. This is how our “family reunion” of sorts went down for the Alveys. Continue reading
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
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
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
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
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
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
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.
