Sonnet was six and a half years old when we adopted her in the summer of 2016. She weighed only thirty pounds and was deemed profoundly malnourished by our doctor. We had watched from afar as her condition deteriorated over a period of two years from a child who could stand holding onto an object to one who could barely sit up. Continue reading
Hey everyone! I hope the new year is off to a great start!
Levi has been in first grade this year, and absolutely LOVES school! I am so glad for that, although I always wonder and worry how he is doing academically, socially, and behaviorally. He has an amazing teacher that has not let him slip between the cracks and has been in touch with me A LOT about his lack of focus in school. UGH!! Continue reading
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.
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
During the winter break, we undertook the daunting task of organizing digital photos from the past fifteen years. We take a lot of pictures, so we had over 17,000 images to move and file. As we cataloged the pictures, we reminisced about our first house, our childless days, our travels, our first pregnancy. Seeing those baby pictures of Benny and those early years brought back a flood of emotions. Continue reading
I love reading special needs blogs. They have lifted me up and carried me through some really tough years with my son. Ironically, it’s been awhile since I’ve written for this blog. I have tons of content up in my brain…. but last year I struggled to put those ideas into blog entries to help lift up all of you! Continue reading
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
There was a time I wondered if we would ever experience “normal” holidays with our cute Levi. We would, of course, go through the motions of every holiday and give him those experiences, even if he did not understand or know what was going on. I am soooo glad we did because I am telling you… this is the year! Continue reading
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
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.
