The Little Wins
I cannot believe I am saying this, the blog has been around for a whole year! I apologize for missing last week’s blog, but I have been in quarantine for the past week with Covid. While I have been sleeping for the most part, I’ve been able to reflect on some pretty cool things that have happened since the turn of the new year.
Maddie got her first win of the year. Before Christmas, Maddie had RSV which resulted in a trip to the ER. Over the course of her illness, Maddie lost weight. Maddie’s weight has been in the first percentile for most of her life. So it’s safe to say she didn’t have much weight to lose in the first place. This weight loss prompted monthly weight checks with her pediatrician.
We’re proud to say that Maddie gained two pounds over the past month. Now this might seem to be a small weight gain, so I’ll put it in perspective for you. In February of 2022, Maddie weighed 22 pounds. Maddie wouldn’t gain another pound until August of 2022. It took her 6 months to gain a single pound. This weight gain isn’t by accident however. Between our pediatrician, our dietitian at Mary Free Bed, and the team at Children’s Colorado we’ve changed Maddie’s supplemental formula. It seems to be working and a great sign that the team we’ve assembled is collaborating well together.
Maddie’s weight gain isn’t the only good news that came out of the pediatrician visit. Last February I wrote a blog post, More Than a Diagnosis. This was about a sick visit we had. During this visit we had an uncomfortable interaction that was born out of ignorance and not malice. Our pediatrician actually reads our blog and told us some exciting news. The office that Maddie goes to is implementing sensitivity training for all of their staff twice a year. It’s humbling to think that our blog has contributed to this change.
Another awesome experience I’ve had this year is that I was actually able to meet another Angel parent at Maddie’s therapy. A few weeks ago, one of Maddie’s appointments was switched to an earlier time. I was able to take Maddie and we ran into another Angelman family while we were there. I had only talked to this mother online, and we hadn’t met in person until that day.
Speaking with her was exactly what I needed. We didn’t talk about anything profound, but at times this journey can be a lonely one. Social media is a great place to connect with others, but actually being in the same room with someone who knows your struggle is different. It was a joy just being able to look someone in the eye and know that they understand the joys and the struggles of an Angelman Syndrome diagnosis.
Lastly, a newly diagnosed Angelman dad reached out to me on social media. We’ve been able to talk a bit over text. His family is here on the west side of the state as well, so I look forward to connecting with them over coming months. It’s crazy to think that our family was in that same exact position a year ago.
A year of this blog and I feel like I’ve accomplished everything I wanted to. I’ve been able to expand my own knowledge of Angelman Syndrome. I’ve also been able to advocate for the community as a whole and effect change in my community. Most importantly, I’ve been able to connect with others inside the Angelman community as well as outside the Angelman community. I can’t wait to see what’s in store for year two.
-Written by Adam Birchmeier
