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!
D Beard said:
These smiles just warm my heart. Love you guys to the moon and back!
Happy New Year to you & your family! May next year bring more blessings your way.
Happy Connecting. Sent from my Sprint Samsung Galaxy S® 5
Madonna Ormsby said:
Praying that the year ahead is free of hospital stays and that the boys continue to beat the statistics. Your wonderful care and love keeps them going. When I see them at church, I always see smiling faces. They are a blessing to everyone that sees them.
Madonna Ormsby said:
Praying the year ahead is blessed with lots of smiles and free of hospital stays. Praying that the boys continue to beat the statistics. Your love and wonderful care keeps the boys going. When I see them at church they look comfortable and happy.
Sheila Blevins said:
Praying God’s blessings on you and your family for 2016. As always – YOU and your boys continue to amaze me. Happy New Year!