Saturday, June 17, 2017

Ice Cold Lemonade!

Just in time for the summer heat, we had our annual lemonade stand for the Cure Sanfilippo Foundation's Sale2Save.  We had a great group of volunteers and supporters and were able to raise $1,617 to help cure Sanfilippo!  We haven't had many in person events lately (most are online) so it was really nice to be out raising awareness and spreading our message to new people.


Ready for some lemonade!




Honoring Blair (who passed from Sanfilippo Syndrome earlier this year) with purple lemonade logo cookies.






This amazing Daisy Troop worked their tails off!  What an awesome thing to see, kids helping kids!





Blessed by friends who show up and help us fight!


With WILLPower, 

LBM

Little Buddy's Momma

Sunday, June 11, 2017

And Here Comes Another Birthday! June 11 :)

And somehow, after another busy month, our first born baby turned 7.  It's so bittersweet, but we know exactly how blessed we are to have had another year with this amazing boy.  

I think we did a good job at making the month leading up to the big day pretty fun too!  Springtime means lots of great things to do!



Mother's Day with these two monkeys.  Love them!







Springtime means baseball!  Go Astros (unless Momma's Indians are playing them)!




Enjoying some homemade popsicles!





Water time!



Happy Memorial Day!



     


     

And first grade is officially done.  Wow.  Not how we envisioned it, but we know how lucky we are for him to still be happy, relatively healthy, and enjoying school.



     

Excited for Chuy's lunches as family again now that he is out of school!



     

But just because school's out for summer, doesn't mean learning is done!  Lots of Saturday science days ahead!



Unfortunately, we didn't get to spend the week leading up to Little Buddy's birthday doing all the fun things we wish we could have done  Instead we had his week long visit to Minnesota.  Our good friend, Ms. A, came with us.  It was a long week but our brave boy faced everything head on.  I hate that he has to go through all of this but I love him and his strength.



Minnesota bound!





Resting up for the long surgery day ahead.


Little man's surgery check in wasn't until noon, so we had to find ways to keep him busy until then so he didn't realize how hungry he was.  We went to check out the not open yet Sculpture Gardens and then inside the art museum.  Just adding a little culture into our visit!


     


Finally got to see the big spoon with the cherry!







He really enjoyed the exhibit of videos of dancers at the art museum!




     

This room with the light projector was also pretty cool!



     

Finally time for surgery.  All went well, but he had a really rough time waking up after anesthesia.  




    

Nothing better than snuggling this boy.  Poor guy was exhausting.





Living the hotel life with breakfast in bed before another hospital day.




     

Always happy when he can eat...





...and sing!




     

And then the nurses at the hospital and the staff at our hotel found out Little Buddy's birthday was coming up.  What beautiful gestures from all of them!







The week was long but we made it.  Little Buddy was not happy to leave Ms. A at all!





Unimpressed.



Um, so after the entire crazy week in Minnesota, we get home and Little Buddy bites into a piece of pizza and loses his top front tooth!!!  Momma was not ready for that!



Definitely growing up!




     

Our last moments with our 6 year old.




     

Our first moments with our 7 year old!  Happy Birthday, buddy!





The birthday plate is out...it's official now!





A beautiful day out on the boat for our birthday boy!




Ready to enjoy some birthday cake!



     

Present time!



     



And here's the big surprise...his adaptive tricycle!  A huge thanks to The Trike Project for helping this to happen!  Can't wait to do more family walks and bike rides this summer!






Finishing his day with his birthday book.  Love you, Little Buddy.  Praying for many more birthdays ahead of you.



Height and Weight
Still coming in at 65 pounds and just under 52 inches!  He also did well at his year genetics appointment and was excited to see the dancing cow statues there.


Hi cows!


Personality
Doing well, but tends to get overexcited and giggly now OR cries very easily and is not impressed with the world.  We'll be monitoring this to see if it is just because he is tired or agitated or if it is progression the disease.


One of his "not impressed" moments.


Developmental Changes
Everything is still going well.  His OT is definitely helping and we've such gains in fine motor control.

     


     

Eating oatmeal like a champ!


Again, so happy to be back in horse therapy.  We'll have four weeks of it this summer too.  Hoping we can keep his core strong until we start back again in the fall!



Doing so well!



Fun Tidbits
Momma's friend from college, Ms. M, was in for a visit!  Both kids enjoyed meeting her!


Posing after dinner.

Well, that's all for now.  Looking forward to getting summer routine up and running now that Little Buddy's long Minnesota visit is over!

Until next month, 

LBM

Little Buddy's Momma