Sunday, August 11, 2019

August 11

And time passes again.  We try to fill the days with so much but the hours and days and years continually to slip too quickly.  And so we find ourselves at the end of summer.  Thankfully, we had plenty of ways to make memories of it!

One of the most exciting events that I had been looking forward to had finally arrived...taking Little Buddy to his first Broadway show!  Our local musical hall was presenting a sensory performance of Aladdin and I was overwhelmed with joy to share this experience with my favorite little guy.   



Ready for the show!




Someone LOVED the music and the Genie!



     

I was visibly moved multiple times to see how many amazing people were able to take advantage of this performance and now normal and right it was that they felt included, safe, and valued.  I will treasure the memory of this forever.


We can't mention the end July without mentioning Little Buddy finishing his third triathlon as an adaptive athlete!  From arts to sports, this boy is certainly well-rounded!


WILLPower is ready to go!




Swim buddy, swim!





Bike Buddy, bike!




Run Buddy, run!





     



Our champion!




     

Chuy's celebration lunch!




Every memory we make means so much.  This will probably be Little Buddy's last triathlon as he's moving up an age category, but we have been so grateful that he's been able to have this experience.


Otherwise, we went in to August doing much of what expects from summer vacation in Texas...trying to stay busy and cool!



     

Can't go wrong with some air-conditioned playtime at My Gym!



Chuy's lunches with friends!



     

     

Enjoying some boat time with tubing and boarding on the new Zupp board!




Painting time!




Lots of swimming!  Our neighborhood pool was often empty and we had it all to ourselves!



Got some jumps in at Bouncing Bears!




     



Big smiles at the splash pad!




One last camp...hanging out at the Ranch!  Little Buddy was thrilled to spend some time with Roany!








Cheering on the Astros!




We also got to try something new...bowling!  It was a lot of fun and I definitely think we will do it again!




Height and Weight
Coming in at 78.5 pounds and hanging strong at 55 3/4 inches.


Personality
Happy and going with the flow!


Developmental Changes
Overall, Little Buddy has been doing well, but our yearly genetics appointments do force us to acknowledge the changes caused by Sanfilippo.  We have noticed significantly fewer words and we've been worried about his swallowing and so had a swallow study.  One good bit of news is that his muscle tone for his age and condition are fantastic, so all the workouts we but him through are helping!


Impressing his geneticist with his strength!



     

He wasn't super thrilled with us after his swallow study (turns out barium-infused Oreos are not his favorite) and although he is doing ok, there were areas of weakness that have stared to develop, so we will need to continue to monitor him closely while eating.




Thankfully, a Chuy's lunch helped him to forgive us.


Fun Tidbits
Well...Momma had a big milestone this month and I couldn't be more proud to share it with this guy.  I finally graduated with my doctorate!  Little Buddy was only 6 months old when I started my program and, even though I tried to quit multiple times following his diagnosis, his strength always inspired me to preserve.  We were lucky enough to celebrate with both sets of grandparents coming into town.


     

I did it, Little Buddy, because if you can overcome your challenges, then who am I to give up on mine?



Back to school next month (sob!),

LMB

DR. Little Buddy's Momma ;)