Every Eleventh with Little Buddy: March 11

There is no way to describe how much life has changed in a month. It's completely mind-blowing and sometimes it is hard to believe that it is real. Everything with Little Buddy is ok, but the world has gone topsy-turvy. The only way to start is at the beginning.

Let's see, the month started off normally enough. We had the usual year hallmarks of Ash Wednesday and Go Texas Day.

Lent ready!

My favorite cowboy kids!

We did our usual outings, just living life.

Hanging out in the backyard!

Riding the tiger after a haircut!

Obviously, one of the biggest events of the month for us was the marathon. We had an amazing two weekends with the kids' race, the Charity Challenge, and the adult races. Team WILLPower was awesome and really raised a lot of awareness and funding for Sanfilippo research, coming in FIRST for a THREE-PEAT VICTORY in the Charity Challenge! Woohoo!

Ready to race!

Team WILLPower in the house!

So proud of this guy...another solid year of running!

It was an insanely close finish, but we made it with a first place finish and raised over $41,000!!!

The long distance runners ready to finish up the our marathon season!

Cheer tent bringing the action to the course!

So thankful for all the amazing people that love and support our boy!

And then we headed into a big thing for us...a potential new clinical trial. Little Buddy was invited to California to screen for another clinical trial. This one is quality of life trial, so one that wouldn't treat Sanfilippo directly, but that could help alleviate some of the symptoms. However, as we prepared to embark on our trip, the country was heading into a pandemic. COVID-19, a novel form of coronavirus, was moving through the world. We left for the screening being cautious, we came home from the screening as different states were declaring states of emergencies, the term "social distancing" was being coined, and schools were extending their spring breaks to assess the situation and reduce students' potential exposure. On the bright side, the screening went as well as it could have and we are hopeful. On the downside, it looks like we might be going into isolation to help keep our guy safe from this virus.

Ready to head to Cali!

Pondering life, looking at the ocean, after a day full of testing. What will the next month hold?

Height and Weight

Lots of activity has our boy down to 90.4 pounds but he shot up again. This month he is at 56 and 7/8 inches!

Hi handsome!

Personality

As February faded into March, we got our good sleep back, so that has helped keep him (and us!) and schedule, which also keeps him (and us!) happy!

Developmental Changes

Everything staying stable and his OT even reports some good gains, so we'll take it! The February sleep episodes are always concerning, but with sleep evening back out, we're feeling better that he isn't experiencing too many changes. Also, we had to have our biannual eye appointment and were glad to hear that his vision, while slightly weakened, isn't enough to worry about!

DONE waiting for our eye appointment...takes forever!

But worth the wait for the good news that his eyes are healthy and that he doesn't need glasses (which would be quite the challenge)!

Fun Tidbits

Prior to the world turning on its head, we had a really nice brunch with our Sanfilippo brother R and his family. Always so nice to spend time with other families!