Sunday, September 11, 2022

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

Thursday, August 11, 2022

August 11

Our last weeks of summer continued the "busy, busy" theme, and that's not even including our epic Lake Erie vacation that will be summarized in a separate post!  

We ended our July with a visit from our dear friend, Ms. A!  We were so glad she got to visit and enjoy so many things with us because we had a lot going on like Little Sister's triathlon and a musical!


So excited that Ms. A came to town!



We even got to go out for ice cream with Ms. A!


     

Cheering on Little Sister during her triathlon!




     

So glad we got to enjoy Frozen the Musical together as a family!


Besides these big outings, we continued to enjoy our usual summer fun.  



Daily walk adventure!  Even when it's hot, making sure Little Buddy gets his walks is important to maintaining those strong muscles.




The journey is definitely the reward with this amazing sibling pair.



Found the koi pond!


     

     


Nothing like cooling off from those hot walks with some pool time.  Little Buddy's smiles are all we need to know that pool time is the best time!



     


We even got to check out a local park that had recently been renovated to be more accessible!



He also enjoys having lunch out at restaurants!


And then, summer ended.  Although the ridiculously warm temperatures have not abated, Little Buddy's school year started.  Due to some school calendar changes, he started back the earliest he ever has.  So glad we were able to pack in the adventure before middle school called again!

     

Off to 7th grade!


Height and Weight
No height report this month (since we grew off our chart and didn't have any doctor appointments where they could measure him), but I am happy to report we've hit 103 lbs. on our scale!  So glad to have his weight under control for the moment.


Personality
All the smiles.  We are so fortunate for our favorite boy to still be very happy and easy going.

     


When Little Buddy's happy, we're all happy!


Developmental Changes
Still very on track!  So glad our issues at the beginning of summer seem to have all been centered around those loose teeth.  Eating well, walking well, and engaging well.  His well check showed everything being as good as it can be for a 12 year old with Sanfilippo and for that we are grateful.  He will have his swallow study coming up, so hopefully we'll get good reports from those too.


Growing up!



Fun Tidbits
We are just really happy with how Little Buddy is doing at the moment and how well our vacation went.  Hoping to do more traveling with him in the coming year!

Good night,

LBM

Little Buddy's Momma