Saturday, July 22, 2017

Look Who is a Triathlete!

So...before we got all the crazy and heartbreaking news last week, I had signed Little Buddy up as an adaptive entry for our local youth triathlon.  We weren't sure if we were in the mental state to participate today, but we decided to go for it.  I am SO GLAD we did. Will had a BLAST and it was amazing to feel the support and inclusion from our community. We are so proud of our 7 year old Sanfilippo child who swam, biked, and ran his way to being a TRIATHLETE! 



Transition area is prepped!



     

Support crew is in position!




Ready to start the race with an adaptive swim, meaning he gets a lifejacket and Momma in the pool!



     

Ready to get in that water and GO!



     

The swim is on!



     

     

     

     

Out of the water and onto his adaptive trike with Daddy and Uncle M!



     

     


     

Heading into the run portion with Daddy and then zooming into the finish!




      

     


 He did it!  And in under 20 minutes too, which is pretty spectacular in our book!  



    

Grateful to our YMCA for recognizing that inclusion matters!




Grateful for our WILLPower support team!




Grateful for every moment and memory with this guy.


A very proud, 

LBM

Little Buddy's Momma

Friday, July 14, 2017

We Regret to Inform You...

I'm in Chicago visiting a friend.  The kids are home with Daddy and a visiting Mimi and Pop-Pop.  And we just got a call telling us that Little Buddy's trial is cancelled.  That the drug is helping, but not "enough" for them to reinvest in it.  Who are they to decide "enough"?  Anything helpful is enough when it is a terminal disease with no treatment option.

Our world is very dark today.  We don't know where we go from here.  Please keep us in your prayers.


He deserves to have the highest quality of life for as long as possible.  She deserves to make good memories with her brother as long as possible.  Why is that so difficult for drug companies to understand?


A very broken, 

LBM

Little Buddy's Momma




Tuesday, July 11, 2017

July 11

We are full swing into summer now and keeping busy!  Although it is tiring, keeping busy and on a routine seems to go best with our crew.  

One of the first things filling our schedule was something new, Vacation Bible School!  Back when Little Buddy was young, he wasn't able to potty train, so he wasn't able to go.  Now that we have changed churches and Little Sweetie is old enough for it, we decided to give it a try with Momma as his aide during the day.  I was very nervous and some days were very challenging, but we did it and he had a great time!  We were thrilled for the kids to make new friends and for them to grow in their faith.  



Excited for his first VBS!




Our VBS experience was made even more amazing by the caring hearts that volunteered to help run it.  They were so touched by our little guy that they decided that all of the donations brought into VBS that week would go to the Cure Sanfilippo Foundation in Little Buddy's honor!  How awesome!



Meeting Daddy for lunch after a great day at VBS!



We also got to have a few adventures this month.  One of them was FINALLY traveling to Lake Charles with Daddy on one of his work trips.  They normally hit during the school year and we never get to go, but this one worked out.  Bonus:  We got to take our babysitter, Ms. A, with us!


     

Checking out the pool area and the beach!




     

Some of Daddy's colleagues surprised us with a belated birthday cake for Little Buddy!





Bedtime stories with Ms. A!  Can't thank her enough for her help!




     

Swimming time!  It was a very quick, but very fun trip!



We also got to take Little Buddy to the theater to see the new production of The World According to Snoopy as one of his birthday gifts.  He really enjoyed it!



"Mom, Dad.  We're at the theater.  Stop embarrassing me!"



We also got to celebrate a few holidays...just seems like summer is flying by!


Wishing the best Daddy ever a Happy Father's Day!





     

The Fourth of July definitely calls for flag shirts and boating fun!  We didn't end up doing fireworks because the next day was a travel day, but I think we had a great weekend anyway!


Otherwise, we've just been keeping busy with our regular activities!



He still loves the book maze by the library!



Lunches with Daddy never get old!




Cheering Momma on at Boot Camp!




King of the castle at Teddy Bear park.  Getting there early and having the park to ourselves in the BEST.




Cuddles with Ms. A.  We've thankfully been able to hire Ms. A part-time this summer and it was the best decision we've ever made.  She's been a huge help and allowed us to have so many adventures and both kids just adore her.






And, of course, there's always Minnesota trips.  The cool weather up there (cool compared to Houston) is so nice, Little Buddy doesn't event want to get out of bed!








Height and Weight
We are now just over 52 inches and weighing in at 66 pounds!


My big, strong, handsome guy!


Personality
Overall, happy.  Summertime is really hard in terms of monitoring his actual state of personality and behavior.  If we keep him engaged and on routine, he does best.  But, if we don't have activities planned and have "free" time, he easily gets over-excited and over-stimulated.  Trying to work on finding the perfect balance while still being attentive to sister, who is not so sure about this business of not getting my full attention while Little Buddy is home for summer.  


Developmental Changes
OT and Speech are still going strong and now summer music therapy has started, which will fill the gap now that summer horse therapy has ended.  We've also started doing flashcards in the evening and have been impressed with his word retention.  Every bit helps!


Last day of horse therapy until fall!  It's amazing how strong this helps keep his core!




Fun Tidbits
It may only be July, but we are already starting to think about what we want for Christmas...our two front teeth!  The second top one came out and his adorable gap tooth grin is on full display!

     


Cutie pie vampire face!


We'll see you next month!

Good night,

LBM

Little Buddy's Momma