Aug. 11

And before we knew it, summer had ended and school had started...but don't worry, we managed to cram quite a bit into the last month!

We had some big events at the end of July, but more on that later. And although Little Sister's swim season was done, it didn't mean that our cheering season was.  She still had a triathlon!

     

Team WILLPower representing at the Youth Tri!

Even thought Little Buddy can't participate in the triathlon any more, he still got plenty of water time. We made sure to hit the pool as much as we could and also enjoyed more boat time!

     

Swimming at the pool!

     

     

Tubing time!

Hanging out with Uncle M and L!

Otherwise, we've gotten to chill out and enjoy the last moments of summer together.

Getting some Chipotle at a Spirit Night!

Enjoying TV time since it's still too hot to be outside for long.

But summer can't stay forever. School time and the last year of middle school crept up on us.

Sensory Mass and Blessing of the Backpacks.

We had to schedule a special meet-the-teacher because the entire ACCESS department turned over this past year after retirements and transfers. We're extremely nervous with the transition, but he seems ready to be back on campus!

Our almost 8th grader! 

     

First day of 8th grade and last year of middle school...how is this possible??

Height and Weight

We're up to 110 this month, so the battle is going in our favor, but we're not out of the woods yet. We're trying to feed him as much as possible as often as possible, but the reality is that there are only so many hours in the day and with his slower chewing, we can't just have him sitting at the table for ours on end.  Thankfully, we've found some calorie supplements that mix into his food, so that's helping. Eating 800 calorie yogurt has to help, right?

        

     

At the table, where most of our day is spent trying to get his weight up!

Personality

Still very happy and sweet, even when waiting for his nightly injection of anakinra!

Brave, happy boy!

Developmental Changes

We've noticed a bit more tiredness lately.  We don't know if it's Sanfilippo, being worn out from the heat, low energy from not enough calories during a growth spurt, or a combination of these factors.  Overall, he seems ok and he's earned a siesta whenever he needs, but we have to take notice anytime we see a change.

     

Sleepy boy...

...but still a happy boy!

Fun Tidbits

So the BIG news is that we took a cruise at the end of July in honor of our freshly minted 13 year old's birthday! We took our crazy to see and Little Buddy got to visit 3 countries.  It's too much to add to this entry, so it has its own entry.  It was a bit stressful, but overall went better than we hoped. Glad to got to take our boy on this adventure!

Good night, 

LBM

Little Buddy's Momma