October 11

Fall is in full swing and the year keeps rolling along.  Thankfully, our Little Buddy is rolling right along with it and doing well! 

We did manage to finish off our summer with one an Astros game before fully committing to the changing seasons (not that the weather part of the season changes much here yet, just the activities and the calendar!).

     

Great day at the ballpark!

As summer closes out, Fall brings some of Little Buddy's favorite things, like...

...Pumpkin Pancakes...

     

...Run Club...

...and Bones Pajamas!

Unfortunately, fall can also bring allergies.  Little Buddy was pretty miserable for a few weeks with sinus and cough issues that he can't understand.  He can't use an inhaler to open his lungs either, so our trusty nebulizer went to the rescue again!

If looks could kill...but he feels better!

The other thing fall brought this year was a LONG fall break.  Little Buddy's school district decided to implement a new school schedule this year where he basically has a week off every month.  I'm not a huge fan of him going in and out oft routine, but we'll see how this year goes.  I enjoyed spending time with him and especially having time for him to get a much needed haircut!

     

Hitting the beloved book maze after our library visit!

     

So excited to get his lion's mane chopped off!

     

Finally!  Much needed and so handsome!

And special lunch with Momma and Daddy (again!) post haircut.  Just living the life!

What never changes with the seasons?  Someone's love of bedtime stories and cuddles.

Goodnight Buddy!

Height and Weight

Not disappointed in our weight gain...up to 107 pounds this month!  Also he had his genetics check up and he is nearly 63 inches now!  So pleased with all his growth, as well as with the report from his geneticist as to how well he's doing overall.  

As predicted, the Momma-approved school picture came out great!

     

Excellent genetics appointment followed by lunch out with Momma and Daddy!

Personality

It feels repetitive, but being able to report every month that our favorite guy is still happy and smiling is such a huge blessing that we do not take for granted!

     

Snack time smiles are the best!

Developmental Changes

Along with his stellar genetics appointment, we've been really happy with how Little Buddy is doing with all his skills.  Although we're still fighting to regain his twice a week regiment of therapies (we got speech approved, but OT is still being fought for and now PT needs an appeal as well), we've been using the extra afternoon time to work with him more on his learning time.  We've haven't had a ton of time to do this with him because of his and Little Sister's schedule, so if I have more time with him while we wait for therapies to be reinstated, this is a good use of it!  He's doing very with all of it too!

Shape sorting like a champ!

Thankfully, we still have horse therapy, which helps so much, especially when we are on reduced PT load.

     

Working those muscles at the ranch!

He's also doing well at school and had his successful ARD.  It's a bit crazy to think about how he is now able to sit still long enough to pay attention to things more.  We know it's a function of his body changing due to Sanfilippo Syndrome, but we do like that he can focus longer on topics without getting as distracted during school and other activities.

Sitting patiently through his Faith Formation lesson.

Fun Tidbits

During Little Buddy's school's Homecoming Week, they let kids in the developmental class wear extra team jerseys and be honorary football players.  Little Buddy looked so official in his and he really enjoyed the Pep Rally!

     

Our handsome football player!

And that's another month.  Looking forward to November and the holidays coming up!

Good night, 

LBM

Little Buddy's Momma

September 11

Happy September!  Somehow, our favorite boy is already finished with a month of 7th grade.  Where does the time go?  In any case, Little Buddy's second year of middle school is starting off well, although he is missing the sleeping mornings of summer break!

     

Trying to ignore me to see if I'll go away.

Sleep more!

     

Sleepy smiles!

But don't worry, he's always in a good mood by breakfast and then ready for his day!

     

His breakfast smiles are some of my favorite!

     

Dapper dude, ready for school!

He's even already had picture day and I'm confident we got another good one (because I insisted on being the volunteer yet again to make sure of it, muha ha ha)!

Looking good!

Picture day success!

The beginning of the school year also means Little Buddy's Amazing Grace Faith Formation has started again!  We've already had once gathering and once Sensory Mass.

     

We love this program of inclusion and acceptance!

As summer begins to close, we were able to get one more day out on the lake in.  The new, bigger boat was definitely worth it this summer.  It was so much easier to get Little Buddy on and off and he really enjoyed sitting on the platform.  Hoping for many more years of lake adventures!

Someone loves the lake!

With the start of school, Little Sweetie and Little Buddy haven't seen each other as much, but that doesn't mean that they arne't on each other's minds.  Little Sweetie even made one of her potholders just for her big brother because she knew he'd like the texture and could fiddle with in.

     

Our favorite siblings!

Height and Weight

The pounds keep coming!  All the guacamole and whole milk seem to be doing their job and someone is now up to 105 pounds.  We are so happy to have this continued weight gain.  And, although we won't get a heigh measurement until his geneticist appointment next week, we did end up having to get a new truck just to fit his long legs in it, so I am guessing we'll see a few extra inches reported as his check-up!

Long-legged boy likes the new Ram!

Personality

Still just happy and living his best life.  We have been so fortunate for him to not experience agitation or being upset.  We hope we can keep him full of joy for as long as possible!

     

Every smile is a blessing indeed!

Developmental Changes

Overall, all is going well, especially since his swallow study was phenomenal!  Someone passed with flying colors and is allowed all foods and textures still.  Just have to keep alternating textures to help clear throat and use small bites as we have been.  No aspiration or penetration!  He's actually improved since his 2019 study, which is huge.  We are so happy!

     

Someone aced his swallow study!

As I mentioned, overall Little Buddy is well, but we are having issues with keeping his therapies.  Both speech and occupational therapies got demoted for their twice a week visits to one a week by insurance.  We're appealing, but it's been a long and arduous process with a lot of poor paperwork management.  We'll keep fighting to give him the tools to keep his quality of life high, but it's so frustrating to have to fight battles that shouldn't even exist.  On the bright side, he was able to start horse therapy again this month, so that was a bright spot.

     

Happy to be back at the ranch and riding Ghost!

Fun Tidbits

Our friend, Ms. C, sent the kids a really sweet care package with Little Buddy getting an official WILLPower Purple crayon that she made him at the Crayola Factory.  How cool is that?!

Thanks, Ms. C!

Well, that's it for now!  See you in October!

Good night, 

LBM

Little Buddy's Momma