Purple Week 2017!

MPS Awareness Day has come again and once again we asked our supporters to help us spread awareness and raise funds in order to combat Sanfilippo Syndrome and everyone came through amazingly!  Our boy is so loved.

Ready for a full week of events!

Little Buddy asking everyone to wear PURPLE!

In addition to so many of our friends and family, Daddy got lots of support at work! 

 

MPS Awareness craft from Little Buddy's school!

My Gym once again went above and beyond in their support of our little guy.  They hosted a playdate and an ice cream social.  Little Buddy and Little Sweetie and a great time at both!

     

Pay to play fun!

Time for ice cream!

We finished out the week with a shop for a cause event, a WILLPower workout, and a spirit night at Potbelly's!  Thankful for all the support and love for our family and our boy this week!

We are Fueled by WILLPower!

Someone's enjoying the chocolate milkshake at the Spirit Night!

Friends at the Spirit Night!

We don't have any totals yet, but we already know that this week was a success because we did bring awareness to this terrible disorder and that's what matters.  Praying every day that we can make an impact to help Little Buddy and his friends.

With WILLPower,

LBM

Little Buddy's Momma

May 11

We survived the April of unending travel, hooray!  As you'll seen in separate posts, Little Buddy hit seven states last month, saw the Statue of Liberty, cheered at the Boston Marathon, danced at an Ohio wedding, and met his runner during the Texas Ironman.  But the train never stops, so here comes May!

Travel never stops, but at least this time it is just Minnesota and I get cuddles!

Enjoying learning about the moon before heading to the hospital.

Love how happy music therapy makes him!

  The little bit of down time we did have this past month, we spent it together.  

     

Little Buddy had Career Day at school.  He picked to be an airplane pilot (surprise, surprise).  Career Day is always a tough one for me, as I try to avoid thinking about the future, but catching him and Little Sister in this moment (she dressed up as Skye from Paw Patrol, because that who she wants to be when she grows up) made it worth it.

Chilling with Dad.  My two handsome guys.

Love this face.

Height and Weight

He was measured in Minnesota as 65.7 pounds and 51.75 inches!  Still getting so tall!

Personality

So much more pleasant now that the spring allergy season has passed!  Hallelujah!

Developmental Changes

All good news!  Sleep is still good!  Sinuses have dried out!  Chewing has gone back on a down swing!  Thank goodness!  He's actually even been more quiet at the dinner table (instead of making random loud noises constantly) and more talkative during the day.  And, we are seeing some great things with his new OTs.  He's stacking blocks again, trying to string breads, sorting shapes on pegs, and working on drawing a circle.  All really wonderful things that make our hearts happy after a difficult and scary few months.

He got seven stacked!  SEVEN!

We were also excited that he was able to start back to horse therapy.  He had to take a break earlier this year because, after returning from winter break, he was too overexcited to ride because we had to rebuild it int he routine.  We were lucky to be able to get ranches from around the country to talk to our instructors and set up a plan.  I am happy to say that everything is falling back in place with the plan and he is doing excellent again!

Our cowboy is back in the saddle!

Fun Tidbits

We got a special treat this month...Ms. J and Mr. A were in town and came to visit!  Little Buddy loves Ms. J and she loves him.  So glad we got to spend time with these amazing Sanfilippo parents.

Little Buddy and Ms. J.  It must be love.

See you in June.  With a seven year old!  Ay yi yi!

LBM

Little Buddy's Momma