Saturday, July 11, 2015

July 11

Besides being busy raising awareness about Sanfilippo and traveling to 5 states within 3 days (PS:  Momma and Daddy are drained), Little Buddy has also just been Little Buddy:  a little boy growing up just like millions of other little boys.  We try to remain in that mindset as much as possible and just enjoy each day, the good and the bad, the mundane and the extraordinary.  All of it is precious!


     

Little Buddy has been loving his new soccer goal!  The weather was kind of yucky, so we played a little bit inside.  We love watching him kick the ball!




Even with everything going on, we still want to instill a sense of service into Little Buddy and Little Sister.  Here we are doing one of Little Buddy's favorite service projects, donating to care packages for soldiers!



     

We don't take any of Little Buddy's developmental skills for granted anymore.  It's just magic to us to see his little brain fighting the fight to stay in control.  Here he is, pretending to be a Daddy.  Oh Little Buddy, we hope one day you can show the world what an amazing Daddy you can be.




     

And here Little Buddy and I are, learning our new normal!  Every two weeks, he and I will travel to Minnesota together for his infusions.  I know we'll get into a groove eventually, but goodness, I am very thankful for the magic of iPads!





Heading home after a successful infusion.  Definitely think Little Buddy earned some ice cream!  It's an intense and tiring 24 hour trip, but definitely worth it!  We are so fortunate to have this chance!




Hard part of these Minnesota trips are being away from Little Sister and Daddy.  Little Sister missed her brother so much, she insisted on staying up until we got home from the airport so she could see us and eat some peanut butter and jelly with Little Buddy (he was starving)!



     

Just being a regular boy and having a blast at Wonderwild!




Caught this great picture of Little Buddy and his good friend, J, at the Splash Pad.  It warms my heart to know that our sweet boy will always have friends that stand beside him, no matter what.




A fun day at the zoo ends with two awesome new animal shirts for these two!




Hmm...I know one movie we'll have to go see in November!



     

Science time with Daddy!  Making crystals!




Just being a normal kid and having fun at My Gym!




Also being a normal kid and trying to steal all Mom and Dad's money!  Caught red handed!




Working hard on cutting and pasting!




Ready for another Minnesota adventure with Momma!





I think someone's getting a little too used to the hotel life!




Super Buddy is ready to start his infusion!




     

Such a trooper!



     

Enjoying all the Minneapolis airport has to offer after another infusion...Snoopy statues and more ice cream!




This kid makes us so happy.  We'll never stop fighting for him!



Height and Weight
His clinical trial measurements have him at 47 inches and a little over 56 lbs.

Personality
Still very talkative and happy!  It's been so great to see his joy and energy shine through even during the stress of his travel and treatments.  And he has such a grateful heart.  He thanks all the doctors and nurses after each procedure and needle stick, even if it hurt him.  

Developmental Milestones
Still moving forward and no regression noted yet!  This is a big deal for us.  He seems to be talking a lot more and still gaining words and complexity.  He also has been doing well at practicing sitting cross-legged (which he has never been able to do) and his therapists are impressed with his progress.

Fun Tidbits
Just a real trooper this month!  So much happening with starting the trial, traveling back to visit his grandparents, and just adjusting to his new normal.  But he continues to do so with lots of smiles and acceptance.  We love you, Little Buddy!


Til next month, 

LBM

Little Buddy's Momma

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