Austin Rath, age 4, infusing IV fluids while biking through puddles.
Austin is diagnosed with Short Gut secondary to Hirschsprung's Disease.
It Will Be OK: A Primer For the Newly Diagnosed
by Keely Schellenberg
It is a strange thing to feel relief when your child is
diagnosed with a terrible disease, but relief is indeed the emotion we
had. Parents of children diagnosed with progressive, life-threatening
diseases often express the same sentiment, and often feel needless guilt
over it. We've seen both sides of the coin, the world of undiagnosed,
knowing something awful is wrong and not having a clue what it was, and
the world of mitochondrial disease, still awful, but slightly less so in
my opinion.
Having a name for the monster does indeed help.
The Poop Chronicles
by Jamie Barnes
Every weekday morning, when the little guy wakes up, my
hubby gets up with him while I catch a few more zzz's. I come down the
stairs where Hayden is getting his jiggle doing the vest therapy and I
ask the same thing, "Did he poop yet?" We have the routine down pat; he
follows up with the answers about what we always look for: the amount,
the consistency, or that he has not yet pooped.
by Lindsay Knops
Atkins, South Beach, low sugar, no sugar. So many of us battle the bulge and wish that we could limit ourselves to "just a bite or two" of our favorite indulgences. But imagine what it would be like if you could literally eat only those two bites, immediately becoming uncomfortably full. What if, no matter the food, you couldn't eat enough to sustain yourself, yet your stomach reacted as if you'd gone for thirds on Thanksgiving?
by Barbara Cullens Crosby
Imagine the smell of mom's homemade chocolate chip cookies when you came home from school. Imagine the sweet, cool treat of homemade ice cream on a hot summer day. Now imagine never being able to eat food again! This is the reality of many children and adults living with Eosinophilic Disorders.
Imagine not eating birthday cake at your own birthday party because to do so would make you so sick, but instead watching your friends enjoy it because so much of our society's culture revolves around food. Think about the worst case of food poisoning or stomach flu you've had, and imagine that is the way you would feel every time you eat! Imagine living like this, isolated from so many everyday activities that the rest of us take for granted...no class parties, no holiday dinners, no dinner dates, no popcorn and movie nights...no food!
by Sheila DeKold
My daughter, Olivia Blinn, was diagnosed two days prior to her second birthday with Idiopathic Myopathic Pseudo-Obstruction, a condition in which the smooth muscles in the intestine do not work properly. Prior to her being diagnosed, Olivia seemed like a typical baby, except that she gurgled, spit up and nursed almost nonstop throughout the night and day. When she was put into a vertical position for burping, everything would come back up. She was like a full pitcher that could hold no more.
In honor of National Rett Syndrome Awareness Month this October, I would like to share my daughter Maggie's story. Maggie is one of the earliest girls to be diagnosed with Rett Syndrome, a genetically-based developmental disorder that is now known to affect one in every 10,000 to 15,000 girls worldwide.
There is a free website available that helps families to make simple medication lists, print them out in a variety of formats, create checklists to check off when medications are given, and even program email or text reminders to give medications. The website, MyMedSchedule.com, even interfaces with Google Health accounts, and may interface with your doctor's office or hospital.