A Year in Review
I can’t believe I’m saying this, but next week Maddie will be 2! She’s every bit of the toddler you can imagine. Even though she’s smaller than most children her age, she’s so long and lanky. She’s getting into her 2T clothing. In honor of Maddie’s birthday, let’s do a year in review.
First, let’s just get all the bad stuff out of the way. In terms of medical visits, boy has she gone through the ringer. Maddie has had 24 occupational therapy sessions, 24 physical therapy sessions, 14 specialist appointments, 12 feeding therapy sessions, 8 Mary Free Bed orthotic appointments, 6 speech therapy sessions, 3 overnight stays at the hospital, 2 ER visits, and 1 surgery.
All of those appointments have helped us get to where we are today. This time last year, Maddie could barely feed herself with her hands. I remember being so excited that Maddie finally started to roll from her back to her stomach again. Now, there are some meals where Maddie refuses food if we’re feeding her, she wants to do it herself. If we leave the room for two minutes, we have to brace ourselves to where Maddie has ended up. One day I thought I lost her, but she was hiding under the futon in the spare room.
Our little girl has fought her way through this year. Of course, her year this year included her diagnosis. However, the village of people who have stepped up to the plate has been incredible. People have sent us care packages. People have watched Maddie so that Nicole and I can have a date night. People have started a GoFundMe for us and have helped us financially. People have followed this blog. People have prayed for our family. A network of friends and family has risen up around us and let us know that we are not alone.
With the financial donations to our GoFundMe, we have been able to buy therapeutic devices that insurance has denied. As I’ve stated in a previous blog, our insurance company wants to see if Maddie is a late bloomer, despite her diagnosis. These therapeutic devices have helped Maddie become more independent. We see her getting stronger week in and week out. We’re hopeful that by this time next year Maddie is walking. This might be a lofty goal, but she has come such a long way.
This next year of Maddie’s life will include a trip to North Carolina, to the early childhood development Angelman Clinic. We will attend our first Angelman Syndrome Foundation Conference. We will laugh, we will cry, we will celebrate our beautiful daughter. I cannot wait to do the same recap next year, to see all the progress our little angel has made.
-Written by Adam Birchmeier
