September 11

Well, summer vacation is over and the school year is in full swing for our Little Buddy!  Unfortunately, we have had a bit of interruptions with travel, so he's not quite settled in yet, but here's hoping everything comes together soon!

So Little Buddy made it through his first week of school ok.  However, just as he was trying to settle into a routine, it was time for his dental check up (meaning he missed a good chunk of the day) and then his quarterly evaluation in Minnesota (meaning he missed the rest of the week).  Oh well, we'll work on consistency the rest of the month!

     

Another great check up at the dentist!  Still cavity-free!

Quarterly evaluations aren't easy, but it's always better with a helping hand.  Thanks for all of your help and cuddles, Ms.  C!

     

This kid is a boss.  He made it through surgery day and then infusion/blood draw day like a champ.

We got to have pizza and playtime after our long day!  Thanks to the L family (their daughter K is in the same trial as Little Buddy) for lots of fun!

Happy to be home!  So proud of my brave boy!

Somebody even got a few special star moments this month!    He was the guest of honor at a wedding that we couldn't attend and he lost another tooth!

Ms. A (a good friend of Momma and Daddy's from college) got married this week!  Unfortunately, with Little Buddy's quarterly visit schedule, we couldn't make it back to go to it.  She and her husband, Mr. R, generously decided to make WILLPower a part of their special day and we couldn't be more thankful.

The third tooth is gone!  And I mean, GONE.  We had noticed it was loose in Minnesota, but it didn't come out until he bit into a sticky grilled cheese sandwich and swallowed it.  Whoops!  We wrote the tooth fairy a nice note explaining the situation.  

Reading the tooth fairy book!

Letter to the tooth fairy is ready to go!  Good night!

The next morning...what's that on the night stand?

     

She came!  Little Buddy got a nice note and $1!

We finished out the month on the boat.  We are still really enjoying it and will be sad when the weather starts to cool down (not really...we are ready for the Texas heat to leave.  Is there an option where we can boat, but not fry?)!

Spending September 11th together, as a family, making memories.  I think that is the best way we can honor the victims of that tragic day.

Height and Weight

Staying strong at just over 50 in. and 60 lbs.!

So tall!

Personality

The start of school and all the traveling has been messing with his sleeping routines, making him a bit more grumpy and prone to outburst than usual.  Really hoping we can get a true routine down soon; it just makes a world of difference with him!

Developmental Changes

More new equipment!  Sanfilippo kids tend to have Achilles tightness which can progressively get worse and limit their movement as they age.  In an effort to combat that, Little Buddy is going to start sleeping AFOs and knee braces which will allow his legs to get a constant stretch at night.  We've been practicing with him wearing them for a few hours during the day.  Hoping he transitions well at night!

     

Fun Tidbits

Sometimes we have bedtime cuddles (more often than not it more bedtime shenanigans) and sometimes our bedtime is spent lobbying for legislation that would help families afflicted with Rare Disease.  Here's hoping 21st Century Cures passes later this month!

Little Sister is such a proud advocate for her Bubby.  We love her!

See you next month, 

LBM

Little Buddy's Momma