Another year is in the books! Looking back at old photos, I’m amazed by how the boys have grown. We’ve experienced a lot of changes. This time last year they were recovering from G-tube surgery. They went on to the Ketogenic diet in February, including a few days in patient to get adjusted. L had a very bad round with pneumonia starting on April 20th, that lasted a month and a half. It got scary. (PICU for weeks, strong vent settings, chest tube draining a liter of fluid, palliative care stopping by to get to know us kind of scary.) You may recall that N joined him for a few days, (twins are funny like that). And we came home to some overwhelming, but overall very positive changes.
It wasn’t all a medical free for all. We made a lot of very great memories too.
- We participated in our first Denim Dash Virtual 5K to raise money for rare disease awareness and research.
- We went on a family vacation, and learned to lug all of our new medical goodies along for the ride, and still leave plenty of room for fun.
- We received new high low seating, and standers from the birth to three program.
- The boys celebrated a 2nd birthday – a huge milestone for anyone who has been told their child might not live to two.
- You all helped us have a successful 2015 Hero Challenge.
- We now have in home day time nursing.
Throughout the past year, the boys have grown by leaps and bounds, and in the meantime, helped me to grow as a person and mom too.
I have been challenged, but also blessed. My plate remains full, but my cup runs over. And while my normal may not be yours, I find myself so grateful that this life, these boys, are mine. Thank you for being part of our normal too. Here’s to another year!