October 11

Hello October!  We've settled into school and, just as we thought we had life under control, we decided to add some craziness to it.  So much excitement this month!

First, let's talk about the normal things we settled into...Little Buddy has been doing great at school, horse therapy has started up again, and Run Club is back in swing.  We've even had one race!

Happy boy at school!

     

     

Obviously any book time is his favorite time at school, but notice how he's sitting independently and staying seated...that's huge for him!

Glad to be back on Roany and enjoying the open spaces of the new site of our therapy ranch!

     

Getting our laps in at Run Club!

Ready for the first race of the season!

Let's see...what other little adventures did we have this month?  Little Buddy enjoyed decorating cupcakes at a birthday party and then eating special Charlie Brown cookies sent by a friend.

     

Sweet things make this sweet boy happy!

And for the big news.  First things first, we got a new car!  To stop Little Buddy from accidentally hurting his sister when he threw and grabbed things in the car, we got a vehicle with a third row to give them each some space.  So far they are doing well!

Cruising along in the new Subaru!

And Little Buddy got transformed into a super hero by an awesome nonprofit!  Such a cool experience!

     

Super Little Buddy!

Proud of her super hero brother!

And...we got a puppy!!!  His name is Buster and we lucked into another awesome shepherd mix.  Buster was being fostered by a neurophysiologist who had actually heard of Sanfilippo, so this was pretty meant to be.  He's a great pup and had integrated well into our family.

     

Reading with Buster.

     

Puppy cuddles!

Height and Weight

This month, Little Buddy weighs in 83.8 pounds and is measuring just under 56 inches.

Personality

We had a week of random agitation, but overall still very happy and smiley!

Hey handsome!

Developmental Changes

We can't complain.  Besides one week of agitation, we are seeing good things.  Stronger endurance at Run Club, stronger core at Horse Therapy, better communication at Speech therapy and using words in appropriate circumstances, and good sleep.  His school mentioned that they have noticed that he's seemed to calm down a little.  Now that could very much be due to the progression of Sanfilippo and seeing his hyperactivity lower, but right now he is still doing well, so we are willing to accept the calming.  

Twisting his Rubik's Cube and working that fine motor!





Sleepy boy snuggling Daddy and ready for bed!

Fun Tidbits

We got hit with another tropical storm (Imelda) but thankfully our area wasn't greatly affected.  We did get to enjoy some cooler temps and a family walk.

Family time is the best time.

See you in November,

LMB

Little Buddy's Momma 

September 11

Summer has passed and another school year has started, with our not-so-little Buddy entering fourth grade.  And Little Sister is entering Kindergaren...what will I do with my days now??

Helping Little Sister read the Night before Kindergarten.  She started school a few days before Little Buddy.

With Sister at school, it meant some Momma/Bubby time.  Back-to-school means back-to-school haircut!   Looking handsome on the carousel!

Quick stop to look at puppies, just for fun!

  

Got to meet Daddy for lunch!

And then it was his turn!

School started off well and Little Buddy was happy...

     

Joyful boy after the first week of school!

...but then we got hit hard by the back to school germs!

     

Annnnndddd...here we go with the first case of strep in our house!  Thankfully we caught it early and he was quickly on the mend.

Of course, it's still mindnumbingly hot here, so it's not like the beginning of school marks the end of summer.  Thankfully, we've been able to keep cool busy with some fun.

Boat time with my best boy!

Supporting our MPS brother, C, at the first annual Pickle Festival benefiting Hunters Syndrome!

And, of course, with today being September 11, we hope we remind others to not take a day with their loved ones for granted, because we surely do not.

We remember.  Never forget.

Height and Weight

Little Buddy weighed in at a strong 81 pounds and still handing in there at 55 3/4 inches.  

Personality

Our loving and happy boy!  We've been very happy with how well he's adjusting to this school year so far.  Seems happy to be back to routine.

Cuddle time!

Developmental Changes

Overall, staying pretty stable.  We've noticed decreased independent use of fork and spoon, so we are adding those into his occupational therapy goals to work on.  And he's starting sit-ups in physical therapy...got to keep that core strong!

Fun Tidbits

My heart both aches and bursts when Little Sister takes on the role of big sibling.  Little Buddy loves her so much, but I know it isn't easy for her to be the sibling of a special needs child.  She's his super hero and she's grown up so much.  

     

Super Sister posing after a Chuy's lunch and pushing her delighted brother through Target.  I love both of them so much.

Until next month,

LMB

Little Buddy's Momma 

August 11

And time passes again.  We try to fill the days with so much but the hours and days and years continually to slip too quickly.  And so we find ourselves at the end of summer.  Thankfully, we had plenty of ways to make memories of it!

One of the most exciting events that I had been looking forward to had finally arrived...taking Little Buddy to his first Broadway show!  Our local musical hall was presenting a sensory performance of Aladdin and I was overwhelmed with joy to share this experience with my favorite little guy.   

Ready for the show!

Someone LOVED the music and the Genie!

     

I was visibly moved multiple times to see how many amazing people were able to take advantage of this performance and now normal and right it was that they felt included, safe, and valued.  I will treasure the memory of this forever.

We can't mention the end July without mentioning Little Buddy finishing his third triathlon as an adaptive athlete!  From arts to sports, this boy is certainly well-rounded!

WILLPower is ready to go!

Swim buddy, swim!

Bike Buddy, bike!

Run Buddy, run!

     

Our champion!

     

Chuy's celebration lunch!

Every memory we make means so much.  This will probably be Little Buddy's last triathlon as he's moving up an age category, but we have been so grateful that he's been able to have this experience.

Otherwise, we went in to August doing much of what expects from summer vacation in Texas...trying to stay busy and cool!

     

Can't go wrong with some air-conditioned playtime at My Gym!

Chuy's lunches with friends!

     

     

Enjoying some boat time with tubing and boarding on the new Zupp board!

Painting time!

Lots of swimming!  Our neighborhood pool was often empty and we had it all to ourselves!

Got some jumps in at Bouncing Bears!

     

Big smiles at the splash pad!

One last camp...hanging out at the Ranch!  Little Buddy was thrilled to spend some time with Roany!

Cheering on the Astros!

We also got to try something new...bowling!  It was a lot of fun and I definitely think we will do it again!

Height and Weight

Coming in at 78.5 pounds and hanging strong at 55 3/4 inches.

Personality

Happy and going with the flow!

Developmental Changes

Overall, Little Buddy has been doing well, but our yearly genetics appointments do force us to acknowledge the changes caused by Sanfilippo.  We have noticed significantly fewer words and we've been worried about his swallowing and so had a swallow study.  One good bit of news is that his muscle tone for his age and condition are fantastic, so all the workouts we but him through are helping!

Impressing his geneticist with his strength!

     

He wasn't super thrilled with us after his swallow study (turns out barium-infused Oreos are not his favorite) and although he is doing ok, there were areas of weakness that have stared to develop, so we will need to continue to monitor him closely while eating.

Thankfully, a Chuy's lunch helped him to forgive us.

Fun Tidbits

Well...Momma had a big milestone this month and I couldn't be more proud to share it with this guy.  I finally graduated with my doctorate!  Little Buddy was only 6 months old when I started my program and, even though I tried to quit multiple times following his diagnosis, his strength always inspired me to preserve.  We were lucky enough to celebrate with both sets of grandparents coming into town.

     

I did it, Little Buddy, because if you can overcome your challenges, then who am I to give up on mine?

Back to school next month (sob!),

LMB

DR. Little Buddy's Momma ;)