As the leaves change and the air gets crisper, Thanksgiving is upon us (somehow, time flies!). What a perfect opportunity to reflect on our blessings and share updates from these last few months with those of you who continue to follow along. 

To say our trip to Disney in July was a magical family vacation would be an understatement. The kids did so well with their first plane ride, one week in a gorgeous resort room, and many jam-packed days. We got to learn, and more importantly connect, with our community at the Cure SMA Conference at Disney World. There was lots of hope, moments of laughter, and a few tears. I have never been more certain we are going to be okay after hearing so many stories and seeing so many amazing people living life to the fullest – despite the adversity this diverse group faces. One speaker shared that these children, our children, are gifts; we think that sums it up exactly.

Henry’s mood and behaviors after his PANS episodes last spring have truly normalized, but we did establish care with a local psychologist if we’d ever need it. He has since had Spinraza injection appointments in July and November and did very well – he seemed much less anxious this last time, even with the “hy-vee” (IV) requiring two tries. The hospital’s child life specialists started him with a “brave beads” collection for all of these appointments that he will continue to add to. He was really excited to look at them, and we all reflected on his continued bravery and resilience. Henry absolutely LOVES preschool this year and is excelling in a lot of areas. He continues to try his absolute best to keep up physically with his peers and work hard at outpatient PT, and that’s all we can ask for.

Josephine continues to meet milestones and jabber away. We love seeing her little personality come through – and let me tell you, it is a personality. She knows what she wants and when she wants it. She also knows how to run away very quickly when she doesn’t feel like getting dressed, putting on her coat, etc. etc. etc. (I could go on, but I’ll spare you all a lengthy paragraph). Josie absolutely adores her big brother and is always talking about her Henry. They both will return to Iowa City in December for routine follow-ups with the Neuromuscular Clinic. 

We wish you all grateful hearts and a great start to the holidays. This season, more than ever, we find ourselves reflecting on the countless reasons we have to be thankful. At the heart of our gratitude is all of you who keep us in your thoughts and have continued to surround our family with so much love and hope.