The scene: Saturday morning. It is 70 degrees and gorgeous outside. Max and I are roaming around, and see two little boys on our block with their Razor scooters. Max is so excited to see them, he loves other kids and anything with wheels. He runs over. “Hi!” he says, and smiles. The boys look…
Category Archives: Conditions and Diseases
It Takes Guts – An Interview With Abby Brogan
Ellie Brogan has a tee-shirt that states “It Takes Guts to have Short Gut.” This gorgeous little girl and her mother, Abby, definitely have guts! Tell me a little about yourself and your family. My name is Abby Brogan. I live just outside of Boston with my husband Gib, daughter Ellie and a wonderful dog…
Preparing For A Medical Emergency With A Medically Fragile Child…
A very wise NICU nurse once told me, “Sometimes the difference between life and death is in being prepared.” I took those words to heart and they saved my daughters life. More than once. When you have a medically fragile child, it can feel like you barely have time to catch your breath before the…
Meltdown Revelation (revolution).
In February, we went to see Ivy’s immunologist. The best news of the day was that Ivy was approved for more Intragam. Another six months, before we have to present her case again but the immunologist felt that it really would not be an issue. Over the course of the last six months, Ivy’s IgM…
Acceptance
That’s what’s been on my mind these past couple of days. This weekend, my husband and I went to a ceremony honoring teen volunteers for a Sunday morning program Max attends. It’s for kids with special needs, and it’s really amazing—Dave drops Max off at 9:30, and picks him up at 12. They sing, make…
A Rare Disease and Hannah’s Fight
February 28th is Rare Disease Day: http://www.rarediseaseday.org/ For many parents having a child receive a diagnosis can be heartbreaking. But add the words ‘rare’ and ‘fatal’ to that diagnosis and heartbreak turns into terror. Where do you find doctors to help in your child’s fight for life? Are there treatments? Are there others out there…
Things you wish you didn’t know
I would love to tell you that all went well with Peyton’s clinic visit last week. I would also like to tell you that I have no idea what complete heart failure feels like. However, either statement would be a LIE! Unlike the poor readers on my personal blog, I won’t make YOU all wait…
Should you give a child medication he doesn’t really “need”?
A couple of weeks ago, I wrote about Max’s habit of drooling. Last week, my husband took him for a checkup to the pediatric physiatrist. They got to talking about Max’s drooling, and the doctor prescribed a patch to help that we’d stick behind one of Max’s ears. Dave brought the prescription to our pharmacy….
Compassion
Written by Natalie Let’s be honest, the journey through the more complicated side of neurofibromatosis with our daughter Mandy has not been easy. There have been many days of uncertainty, of fear, of desperation, of anger. We have tried to find the blessings whenever we can. One of those blessings is being able to see…
In A Heartbeat.
I don’t know alot about heart abnormalities, really. I only know that aortic valve stenosis was one of the reasons my son died. I know that AS comes as mild, moderate, severe and critical and that Will’s was critical. I know that AS means that a usually tricuspid valve can be bicuspid and that the three leaves…