The other day, I had to make an appointment for a hearing test for Max, which means I needed to find someone who specializes in kids with special needs as Max is mostly nonverbal. Woo hoo! Another expert in our life. I did a tally, here’s who is on Team Max: * The pediatrician *…
Category Archives: Conditions and Diseases
Hospital day four…
Yesterday was a pretty big day. In more ways than one. The good doctor decided to push Ivy’s Vancomycin up to a full dose. By the completion of that dose my girl was puffy and bright red and she had a rash all over her trunk, arms and the tops of her legs. Her heart…
Should he stay or should he go?
We had Max’s annual evaluation at his school on Friday. He’s made great progress in all areas, but I have a concern. Max is the most high-functioning kid in his class, besides another little boy who can talk in sentences (Max has a few dozen words right now). The other kids are nonverbal. Max had…
Book Giveaway Winner!
The winner of the International Vascular Birthmark Awareness Day Book Giveaway is: Heidi from God’s Grace In Practice! Congratulations! We hope you enjoy this beautiful book, Buddy Booby’s Birthmark, by Evan Ducker, a little boy who followed his dream to write a children’s story to help others understand what it feels like to be different….
Going on vacation with a kid who has special needs
As you read this, we’re en route back from our Disney cruise on The Magic. Last year, we took the kids to Disney World, and they were so enchanted we decided to do something Disney again. Taking Max on vacation is sometimes a little unnerving, as we don’t know how he’s going to react to…
Yes, I DO raise my kids differently
Out of the hundreds of wonderful and supportive comments and emails I receive, every once in a great while I apparently piss someone off with something I share. Instead of writing back to this one person, I decided to share my response here in case anyone else felt the same way. When I mentioned a…
We’re Not So Very Different…
I sat backstage tugging off her ballet slippers, coaxing her to help put crayons away amidst a giggling knot of pint-sized ballerinas. With the recital just days away, it was a relief to finally be done with the dress rehearsal and my thoughts wandered toward dinner and bedtime plans as I scrabbled after one last…
The trickle down effect.
Ivy was denied the three weekly Intragam and so her meltdown week continues. I’m disappointed. Mostly for Ivy because she feels awful for over a week before her next infusion and she just doesn’t know why. Mostly for Ivy because for that week before she has her next IVIG she starts to pick up all…
The art of talking about your child
Oftentimes, people who don’t Max that well—coworkers, neighbors, acquaintances—ask questions about him. I’ve mastered the art of the succinct, upbeat response. Here’s how it usually goes: They say: “How is Max doing?” I say: “Well! He’s really coming along.” What I really mean: He amazes us each and every single day because he’s doing so…
How a little bear named Hope made history
Over the years, I have met some wonderful people online who have become an some of my closest friends. Being able to meet them in person, even just once, has helped solidify friendships that have lasted almost a decade. Throughout this journey with Hannah, I have also met some wonderful people. Some who have become…