When Grace was two and we were much newer at special needs parenting we grappled with this feeling of always being vulnerable simply because Grace was Grace. We could be having a great day but find ourselves quickly feeling miserable, or angry, or scared, or frustrated by big or little things. It could be the … Continue reading a pink helmet production
We (Kevin, Grace, Graham and I) left for Minnesota on a recent Sunday. Our van was packed pretty full for a two-day trip. Grace doesn’t travel light. (That’s a different blog post entirely!). Graham packed his own suitcase with the following belongings; a Santa hat, his Little Passports suitcase, slippers, his bug jar, books, sleeping … Continue reading The Singing Rock
Grace is home. I’m relieved. And as if she wasn’t being watched carefully enough by doctors we’ve added an infectious disease doctor to the mix for the next two weeks or so to make sure she is all clear. We like him – he’s been amazing to work with. It sounds like we’ve actually been … Continue reading My stuffing is showing
The four of us are together. We are working to enact Graham’s “when Gracie is home plan”. Tonight that means watching the Odd Squad movie as a family. It feels like she’s home just in time. This morning on the way to school Graham told me that he didn’t want there to be any more … Continue reading Grace is home!
Grace took her normal feedings and water intake today without any issue, which means she is on track to be discharged tomorrow! The only thing we have left is to draw blood for some lab tests. While they need to check general levels we also need to test her levels on her anticonvulsants since she … Continue reading Blood Draws & Penguin X-rays