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

Saturday, May 20, 2017

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


Thursday, May 11, 2017

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