Kay and I recently had an incredibly informative visit with a new genetics specialist—and it felt like a full-circle moment. As many of you know, Kay doesn’t have the most common form of Down syndrome (Trisomy 21). Instead, she has Translocation Down syndrome, which occurs when an extra copy of chromosome 21 attaches to another…
Last Friday, Kay, my parents, and I had the joy of sharing dinner with Kay’s great aunt and uncle from her dad’s side. Whenever they visit Vegas, they always make it a point to spend time with Kay and me — and I find that so incredibly kind and meaningful. While Kay has met her…
Well… the insulin pump I’ve been hoping Kay could switch to was denied by our insurance. So now, we’re officially in the appeal process. I’ve learned quickly that when dealing with insurance, every single piece of documentation has to be exact. If even one note doesn’t specifically mention the brand and type of pump being…
Much like when I first received Kay’s Down syndrome diagnosis, I found comfort in community. I connected with other families who understood the fears and unknowns I was facing—families who welcomed me in and helped me see the beauty in a diagnosis I never expected. They showed me that while the path might look different,…
When Kay was first diagnosed with Type 1 Diabetes, I thought I had a decent grasp on how to manage it—enough to get by and keep her safe. But as time went on, I found myself feeling defeated, frustrated, and overwhelmed. I was calling the endocrinologist sometimes weekly, desperate for guidance—hoping for advice on what…
Over the last few months, there have been several staff changes at the therapy center Kay has been attending since she was about six months old. Unfortunately, that included the departure of both her speech and occupational therapists. As a result, Kay now only sees her physical therapist weekly and occasionally receives speech therapy—only if…
Kay recently had her routine checkup with her endocrinologist — and this visit included an A1C test! If you’re not familiar with diabetes, you might be wondering: what exactly is A1C? A1C is a blood test that reflects the average blood sugar levels over the past three months. It gives a much broader picture than…
Kay kicked off her first day of Extended School Year (ESY), and I’m so thankful that this program is available! She absolutely loves school — it’s clear that she thrives on the routine, structure, and social interaction it brings. The moment we arrived, Kay was all smiles, eagerly running up to each teacher and staff…
Kay and I recently had the chance to attend a new program at GiGi’s Playhouse called Destination Discovery—and we had such a great time! This fun and relaxed program is all about learning through purposeful play. It’s designed to support a wide range of skills in kids, including fine and gross motor development, social interaction,…
Two weeks ago, we found ourselves walking into yet another specialist’s office—this time, hematology. During a routine blood draw, Kay’s labs came back with a slightly elevated platelet count of 658. Given everything Kay already manages daily with Type 1 Diabetes—the finger pokes, the CGM changes, the insulin dosing—her pediatrician made a compassionate decision. Rather…
