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