Your day started off rough, didn’t it my sweet Ashley? Just like so many other days recently. Although you wake up with a smile on your face, it’s not long before a seizure steals the morning joy from you. I know you don’t understand the funny feelings in your head just before the seizure erupts….
Category Archives: Medications and Treatment Options
We Got the Funk
I had a whole post ready to go about Peyton’s upcoming surgery later this week. She’s supposed to be getting her port removed and the post told of my anxiety, her excitement, and all the changes having that port out would mean….and NOT mean. But in the course of minutes, the surgery has been postponed…
Would you save a life if you could?
When Peyton was diagnosed with Leukemia, one question that we were asked repeatedly was, “She needs a bone marrow transplant, right?” I would have to explain that bone marrow transplant is a last ditch effort, that you don’t do it unless nothing else works, you don’t WANT to do bone marrow transplant. There’s nothing easy,…
Losing My Religion
When I was younger I was, what my wife refers to as, “a searcher” – one who is looking for a spiritual meaning of life. I was looking for answers to how I fitted into the universe and in what shape or form a god, if s/he existed, might take. There were plenty of religions…
Philanthropy knows no age limits
I try not to be a complete slacker when it comes to posts…I try. However, this week has been a bit overwhelming with the emotions of Peyton’s end of treatment capped off by my mother going into the hospital with pulmonary embolisms. Really, it’s been an upheaval pulling from every angle and my blogging thought…
Snake Oil? I Hope Not.
Last week, an article titled “Reaching An Autistic Teen” appeared in the New York Times. As the mother of a 16 year old diagnosed with Asperger’s Syndrome, my interest was piqued. I made it through the long, multi-page article, and then re-read it two more times. And now, I would like your opinion. The article…
A New Website Helps Parents Navigate Medical Research Trials
I’m the Mom of a kid with special needs. Parker was born with an extra chromosome. It’s known in layman’s terms as Down syndrome. But Reed and I refer to that extra chromosome as ‘no big deal.’ Honestly and truthfully. Especially compared to Parker’s diagnosis of Pulmonary Hypertension. Parker can live a long and joyful…