“NonWordy” (nonverbal) People: How Can we Fit in their Box?
Before Paige, the term nonverbal to me sounded almost like an excuse (prepare yourself to see how immature, judgmental, and ignorant I was before I entered the world of special needs) It sounded like an excuse for an ill behaved child – parents who didn’t do enough, and allowed their child to sit and scream. […]
Faith versus The Terrifying Unknown of Alternating Hemiplegia of Childhood
Will Paige stop breathing today Will she hit her record since her last severe event? Will she live to be in her 30’s? Will she develop uncontrollable seizures? Will she have a heart attack next time? Will I get to hold my baby girl until I am old and grey? The terrifying unknown. The unknown […]
If Your Child Needs a Trach: Part 2
Once your child receives the tracheostomy, the information seems never-ending. I personally felt as though simply caring for the trach would take up 24 hours of my day. I couldn’t imagine stepping aside for a minute – I couldn’t imagine the time and energy it would take to constantly take care of secretions, bacteria, etc. […]
If My Baby Needs a Trach: Part 1
The first time I heard the word “trach”, and had it explained to me, I had extreme nausea and felt I would faint. The emotional response was huge. Imagining my daughter with a ventilator hooked to her 24/7, a tube down her throat permanently, and not even being able to hear her voice was so […]
A G-Tube Formula Recipe that Warms Your Heart: Pumpkin Pie
There is indeed a whirlwind of emotions when it comes to feeding your baby through a tube. Some days you won’t even mind it, it’ll be systematic, and other days it hits you like a brick and it’s all you can think about. Those are the days I need recipes like this – Paigey’s Pumpkin […]