Purple Week 2016!

May 15th is International Awareness Day and, like last year, we wanted to use this day to help raise awareness about Sanfilippo and other MPS disorders.  But a day just isn't enough to get out the information and make the impact we need; so it was time for Purple Week 2016!

We started the week off cheering Mr. J (father of one of Little Buddy's friends) on as he ran The Woodlands Ironman with WILLPower!  The weather was crazy, but Little Buddy had such a great time cheering!

     

     

There he is, in his custom WILLPower suit!

     

Go Mr. J!  

Thank you, Mr. J, for doing your Ironman in honor of Little Buddy and all the other families fighting this disease!

As the week continued, we held several more events.  My Gym held two pay-to-play days and we pulled off our first big event, A Night of WILLPower!

     

 WILLPower was the word of the day during clay time at Little Buddy's school!

     

Great crowd at My Gym for our Pay-to-Play events!  Can't thank My Gym for all of their support this week and always!

We closed the week with our First Annual Night of WILLPower.  This event was a labor of love that was undertaken by our "village."  Truly, this night would not have happened without the extensive volunteer work of our dear friends.  We ended up raising over $20,000 this week from Purple Week and can't thank everyone enough for supporting the research needed to stop Sanfilippo Syndrome!

The room!  We had food, drinks, a silent auction, a raffle, informational tables, photo station, etc.

The amazing painting of Will that one of our supporters painted for the evening.  My sweet boy.

Just a few of the gorgeous volunteers that I can't even begin to thank.  We love you all!

 The event was held past Little Buddy's bedtime, but we had him there in spirit.  We love you, our dear boy.  We will never stop fighting for you!  

With WILLPower, 

LBM

Little Buddy's Momma

(aka Momma WILLPower)

May 11

And now it's May.  Last May found us in a whirlwind of emotions as we grappled with Little Buddy's diagnosis and the possibility of a clinical trial.  This May found us in a happier place, but still unsure of what the future held.  Thankfully, we had a lot of things keeping us distracted...from flooding to races to hearing aid fittings...it was a busy month!

Little Buddy had a fun run fundraiser at school this month.  He loved practicing his running to get ready for it! 

     

He was ready for the big day!  Daddy and I got to run with him and were so excited over how many laps he completed!

     

Career Day!  It's both fun and bittersweet at the same time.  He wanted to be a petroleum engineer like his Daddy.  From your lips to God's ears, my love.

Some more severe storms hit our area.  They were bad enough we woke the kids and brought them downstairs.  Obviously, Little Buddy wasn't as concerned as we were about the storms because he passed right back out!

     

When the weather wasn't being terrible, we tried to get outside as much as we could.  Little Buddy loves being outside and things like cuddles with Daddy on the hammock and Little Sweetie holding his hand on our walks make our hearts melt.

     

All smiles as he goes through his clinical trial travel routine...and he's moving up in the world; they gave us quite the Cadillac at the rental station!

Finally home and to sleep.  Thankfully he is still sleeping very well and we hope that it continues!

Height and Weight

Measurements during his last Minnesota visit have him at 49.5 inches and 63 pounds!

Personality

Joyful and fun-loving, as always!  Though he seems to be engaging in more individual play again.  Did I mention I can't wait until summer?  I want to be engaged for a full day with him again.

Developmental Changes

Sigh.  I have decided to change the title of this portion of the blog to Developmental "Changes" in place of "Milestones".  It hurts my heart to think about this, but I want to be honest as I chronicle our adventures with Little Buddy and our journey with Sanfilippo Syndrome.  

Little Buddy is definitely still capable of doing new and exciting things, and I pray those will be the things I am documenting most.  However, I can't ignore that changes are happening.   His sentence structure has simplified again and I am not getting the 6-7 word sentences that were making me so thrilled in December.  He's stop asking me to spell things.  We can't get him to kick his soccer ball into the goal or hit his baseball off his tee or stand still long enough to play catch.  It's hard.  We hope to work on these skills during the summer and see them return like we have with other skills that we have been re-focusing on.  

Because re-focusing has shown real success.  He's doing much better at getting himself dressed again and taking his dishes to the sink.  And the most important improvement?  He is still saying "I love you" both reciprocally and spontaneously.  And that, ladies and gentlemen, is my everything.  

"I love you too, Momma."

Fun Tidbits

We had his molds taken for his hearing aids and it went SO MUCH better than expected.  He was real trooper and I hope that these help him continue to interact with his world to the best of his ability.  

 

My brave boy.

Good night, 

LBM

Little Buddy's Momma

IRONKIDS!

Today is the day!  Both kids get to become IRONKIDS!

The Texas IRONMAN happens in our area and each year they have a IRONKIDS race leading up to the actual triathlon.  Last year, Little Buddy did the race and this year both he and Little Sweetie get to the participate.  Little Sweetie was signed up for the 1/2 mile race and Little Buddy was registered for the 1 mile race.  

     

Little Buddy was willing to sit for a pre-race picture, but Little Sweetie was ready to GO!

Little Sweetie's race was first.  I can't even explain how proud I am of her.  She was a little nervous at first because of the crowd, but she RAN the entire course, no walking or stopping!  And towards the end, when I could hear her little breathing getting ragged and knew she was tired, I heard her tell herself, "I can do it.  I can do it!" And she kept going!  

      

Lining up and a little nervous...

...but being brave and showing Daddy her muscles!

     

Coming into the finish, pushing herself and giving high fives along the way!

     

So strong!  Go Little Sweetie!

     

Ran right into Momma's arms!

Someone is very proud of her medal, and she should be!  She earned it!

And then it was Little Buddy's turn to run!  Daddy said he did a great job too!

Ready to start!

And they're off!

     

     

Finishing the last loop and headed into the finish!  

     

So excited to have his medal!

     

We attempted to do some sibling/family shots.  Little Sweetie wasn't having it.

     

One last stop to see Little Buddy's favorite statue at the park before heading off to lunch!  So proud of him!

We were so lucky that Aunt S and L came to be our cheering section for the race!  We decided to all go to Chuy's for lunch after we were done...it's our after race tradition after all!

Attempting a sibling photo yet again...

She will, however, smile when she's just with L!

(Mostly because she wants to give him kisses.)

Love these three hooligans!

Good night, 

LBM

Little Buddy's Momma