Happy Father's Day!
Teeth: The Poor Man’s Motility Study
For years we’ve debated putting my daughter, who has obvious poor gastric motility, through invasive motility testing to determine the exact cause and extent of her problems. Luckily for us, she swallowed some teeth! Who knew that swallowed teeth could be the perfect motility study?
Living with Primary Immunodeficiency Disease
by Michelle Fox
I vividly remember the relief I felt upon receiving my son Benjamin’s
diagnosis of Primary Immunodeficiency Disease (PIDD) when he was about
20 months old. It may sound crazy to some. It’s not as if I wished for
him to have a life-threatening chronic illness...no one would ever wish
that upon their child. But at the time, my mother’s intuition was in
high gear and I just knew that something was wrong with my precious
little boy. The relief I felt was in finding answers, and also finding
that there were treatments available to improve quality of life for
Benjamin, and also for my husband and myself.
Phoebe's SCIG Story
by Hope Grover
Our daughter Phoebe Mae Grover was plagued with upper respiratory
infections almost from birth. Little did we know that these pesky colds
would eventually turn out to be an immune deficiency requiring
treatment with immunoglobulin.
by Kelly Weiderman
Groundhog Day. That's what it felt like our lives had been reduced to. Every two weeks or so, we would wake up and find ourselves in an eerily familiar place: tending to a child who was sick with the same old fever and the same old respiratory and sinus junk. But her breath is what always gave it away. The odor behind a festering sinus infection is unmistakable.
Diagnosing Immunodeficiency
by Stefani Bush
It’s 3am. The silence of the room is interrupted by the urgent beeping of the thermometer in your child’s mouth. No sigh of relief in sight…another fever…another illness…antibiotics aren’t working, and you’re at your wit’s end. Morning slowly creeps in and you’re on your way to the pediatrician, again. “This is the third illness in five weeks, this can’t be normal,” you cry. But your words fall on deaf ears and a laid back response of, “Kids get sick, there’s nothing to worry about.” Or is there????
My daughter Karuna currently receives comprehensive palliative care services due to her life-limiting medical condition and chronic pain. While we have implemented these services well within the home, we have found that the school system is not at all used to or accepting of a palliative care model for education. As such, we have struggled for years to try to get my daughter a proper education.