Check-up with Dr. Miller!

So, we had a sleep study done in Gainesville this past Sunday and then saw the Pulmonologist as well as Dr. Miller on Monday. I don't yet know the exact results of the sleep study, but besides Cade and I having to be put through a living nightmare- I think the results were good, or should I say better. I can't imagine that he had zero apnea, since just 6 months ago he was obstructing up to 70 times per hour! The techs that did the study said that they didn't see any significant apnea spells. Now back to the nightmare part. Cade screamed for about 45 minutes straight before kinda sort of drifting to sleep. Then for the next 9 hours he would wake up SCREAMING every hour or so. He ripped wires off repeatedly, oh it was just horrible. I was so close to saying screw it and not doing it. But we got through it and hopefully don't have to worry about another one for a while. Dr. Miller is increasing Cade's calories because she wants him to gain some weight. We know he is little, but he just needs to grow more at this point. She also discovered a slight curve in Cade's spine, which looks like the start of scoliosis. We will have to get an x-ray to get more details, but catching it early will really benefit Cade. We made a little vacation of this trip and came to Panama City Beach for the rest of the week. It is just beautiful here and I could stay forever! The kids are having a blast...Pictures will come soon!

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Trust the process

So, today has been mentally taxing on me. From finishing up my Summer classes and final tests, to losing a dear, fellow PWS Mom friend, and then taking Cade to his first swim practice for the Special Olympics. I've shared extreme highs and extreme lows today, but as I unwind tonight I feel compelled to share this with whoever decides to read it. Some of you may know this about me, but most probably do not. I have always felt a strong attraction to working with those with special needs. It just always felt right and from a young age I remember looking up local jobs and volunteer opportunities..always searching for something to fulfill that desire. I was actually enrolled in college for Family and Consumer Science and was planning to go into Special Education. I had taken the Parapro assessment and actively looking for Para jobs. Then I became pregnant for Cade and life had other plans. Given my role now to Cade, isn't it ironic? OK, so here is an e-mail I dug up from my in...

Tired and Thankful

I am the parent of an amazing boy. He is 9. He is smart, funny, and happy. I am the parent of a child with Prader-Willi Syndrome... PWS is a complex developmental disability that results from a defect on the 15 th chromosome. Because of an abnormality in the area of the brain called the hypothalamus, these individuals face challenges in learning, behavior and controlling their appetite. The message of fullness never reaches their brain and they are always hungry. The intensity of their food drive can vary but all require support and understanding if/when they are exposed to food or they attempt to seek food. Food security must be considered and provided in all environments and at all times. While I am first Mom to Cade, just as importantly I am his advocate in every aspect of his life for his rare disorder. I am tired. Remaining humble and thankful for all of Cade's progress is so very hard in the midst of advocating. Some days I feel as I...

Hungry.

It has been a loooong time since I've written, but its time. I need an outlet and the world needs awareness. If you are new here or don't know by now my son, Cade, who is now 7 (almost 8) is a fun, loving, genuine boy who happens to have been born with a rare genetic disorder. Prader-Willi Syndrome. See below from www.fpwr.org if you are unaware of exactly what Prader-Willi Syndrome is... The symptoms of Prader-Willi syndrome are due to dysfunction of a portion of the brain called the hypothalamus. The hypothalamus is a small endocrine organ at the base of the brain that plays a crucial role in many bodily functions, including regulating hunger and satiety, body temperature, pain, sleep-wake balance, fluid balance, emotions, and fertility. An unregulated appetite and easy weight gain characterize the later stages of PWS. These features most commonly begin between ages 3 and 8 years old, but are variable in onset and intensity. Individuals with PWS lack normal hunger and sa...

Our So-Called Life.

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