October 11

It's hard to believe that we are in the 10th month of 2020, when each month feels as if it is a year, or five on its own.  The lifetimes we have lived.  But here we are, in October, still healthy and doing the best we can to stay that way while still enjoying life.

We have been thankful that Little Buddy has been able to stay in school and that he is much happier back on his school routine.  We are hopeful that the school's safety practices will allow them to both protect the students' health and stay open.  This hope was emphasized by the ONE day of remote learning we had to do because of a potential hurricane.  Little Buddy is NOT fan of virtual learning and we hope we don't have too many of those in the future.

     

Hitting the books and loving school!

Not thrilled about schooling from home, even for one day!

     

     

Our two babies, happy to both have school!

Although most extra-curriculars are currently cancelled, we are thankful that our local kids' Run Club is still happening this year with a virtual options available.  We've been getting our miles in on the weekend at our local school tracks.  It's been nice to not have to drive and to fit our runs into our schedule, but we do miss the camaraderie of in-person Run Club!  We also used our runs to train for the Step Up to Cure Sanfilippo Step Challenge that happened this month.  Our family goal was 50,000 steps!

     

Proud of our inaugural run for this season and happy to play on the playground afterward!

     

     

He loves to run!

Tired, but knowing working hard is the only way to make change.

Taking a walk, working on those steps!

All that training paid off!  While we were on a holiday weekend visit with Mimi and Pop-Pop, we took our step challenge and rocked it!

It was hot and not easy, but we did it!

     

Thankfully, being at Mimi and Pop-Pop's meant there was some pumpkin pie to celebrate our achievement!

We enjoyed our visit with them!  Besides our step challenge, we also got to celebrate Little Sister's birthday early and meet their new dog, Buddy!

Lots of fun at Mimi and Pop-Pop's!

The best thing about it being October, though, is that it is now time for all things fall!  Little Buddy was happy we got the decoration's out and even happier that we let him watch his favorite Halloween special while we set everything up.

It's time for the Great Pumpkin!

Height and Weight

Up to a nice, healthy 91 pounds and is just over 58 inches this month!

Hi, handsome!

Personality

Happy, but tired lately.  Unsurprisingly, with the start of school, someone has been become VERY tired.  This is always very hard for us one, because we hate to wake him, and two, because it usually means less words and expressiveness at home.  But overall he is still in good spirits!

Daddy having to carry "Baby" Little Buddy out of bed in the morning!

Developmental Changes

School has also meant less walking for him each day.  We understand, due to keeping him safe during the pandemic, they can't take him on the walks he loved through the building each day, but more sitting means more tightness.  Which means more stretching, which isn't his favorite thing.  Thankfully, we are able to work on activity and stretching at home and we don't see this increased tightness becoming a lasting issues to effect his mobility.

     

So.  Much.  Stretching.

Our clinical trial participation is still going well.  We continue to give the injections and fill out the forms. Did have a bit of an issue as we went to do bloodwork and they didn't have the paperwork and we had to come back.  Little Buddy disliked being made to wear the mask more than he disliked the bloodwork, I think.  

     

Fasting for blood work is torture, people.  Torture. 

Physically, we have had some concern as we've noticed Little Buddy's urination frequency has gone down. He doesn't seem to be dehydrated, but we'll work to make sure he's getting enough fluids and we will looking for ways to check his bladder tone.  

Fun Tidbits

Two separate sets of friends gifted him books this past month.  His love of books will always make us happy!

    

Our bookworm!

Next month will find us post election and so close to the end of 2020...but will it be the end of the pandemic?  Only time will tell what we'll be facing next!

Good night all!

See you next month, 

LBM

Little Buddy's Momma 

September 11

Another month of pandemic living and I guess it's starting to feel almost...normal?  I don't know.  You just live something so long that you have to adjust.  We're just thankful for more time with Little Buddy (even if it is extremely tiring) and just doing our best to protect him, be good community members, and try to enjoy life in this different space.  

Our big things this month included enjoying the last days of summer and prepping for going back to school!  

     

Happy boy loves outside time!

When the puppy sneaks into family movie time!

Found him hiding on the dogs' beds trying to keep a toy away from sister that he wanted to play with!

Getting some more lake and tubing time in before school starts.  We were so lucky to get lots of lake days this summer; easy to stay socially distant out on a boat!

The end of summer sadly also means our last days with Ms. A.  We were so blessed to have her as our respite worker and will miss her so much!

But by early September, it was time to think about getting our lives ready for Little Buddy's return to school!  Little Sweetie returned to school last month and thankfully, due to their diligence in safety procedures, all has gone well.  We hope Little Buddy's school year has similar success.  It's a tough choice to send him back, but we are constantly weighing his quality of life risk vs. his health risk.  As much as I and Daddy try, we are not trained therapists or developmental teachers.  And, we need the respite.  Little Buddy is a full-time job.  He needs to be with the people that can help him the best with his skills and Momma and Daddy need a second to breathe.  Caretaking is not an easy world and navigating our own mental health is task when the job is never ending.  As long as Little Buddy's school has good procedures in place, it's worth it for his quality of life to go back at this point.  But we will constantly be evaluating this decision.   

The reality of trying to work from home with a special needs child who cannot be left alone.

We got to do an in-person meet the teacher as his developmental program moved from one campus to another this year.  His teachers and aides are the same, but he'll be with different mainstream students at a different building.  He wasn't too sure about the new school and seemed skeptical when we walked in, but he was thrilled and lit up when he saw his teachers and their familiar room decor.  He was so happy!

Well, if we're going to go back to school, we need to get an actual haircut from a professional!

Little Sweetie reading Little Buddy bedtime stories.  Tomorrow BOTH of them will have school for the first time in six month.

He may like school, but he's not ready to like early mornings.  Someone got too used to sleeping in!

But here he goes, ready for 5th grade!  Thankfully the first day (and first week) has gone relatively well.  He's come home happy, albeit tired, each day.

Height and Weight

Staying strong at 89. 4 pounds and shot up another quarter of an inch to 58 inches!

Personality

Thankfully our boy is still happy with very few bouts of agitation (mostly only when we have to give him his clinical trial injection).  Hoping we continue to see this easy-going nature as we navigate our back-to-school transition.

          

So many smiles!

Developmental Changes

Someone gave me the words "so happy" today and I about exploded with joy!  It was work to get them, but I will take what I can get.  Overall, everything is pretty stable.  He's doing well with his communication boards for speech (choosing "yes" vs. "no" and "more" vs. "all done."  I'm so glad that we were able to keep his at-home therapies going for the summer.  Now that he's back in school, I'm hoping to hear that they don't see much regression.  

His clinical trial is still going well and he hit the 8 week mark already!  That meant a phlebotomist had to come for some in-home blood draws and other measurements.  He did great but he wasn't happy about having to fast for the blood work!

Making it through multiple vitals checks and multiple vials of blood drawn.  Our brave boy!

     

So happy it's done and he gets to EAT!!!

Fun Tidbits

It's weird not having both of these two home all day.  It's for the best for all of us, but I'll be forever grateful for the memories we were able to curate.

Our babies.

So here we are, living life the best we can while a global pandemic still hangs over all of us.  Here's hoping the kids will still be able to be in school when I check back in next month!

Good night, 

LBM

Little Buddy's Momma 

August 11

Another month of pandemic living with no end in sight!  Oh well, we learned to embrace the chaos a long time ago!

We did get to do a few things to break up the monotony.  We'll never take simple trips for granted again!

First up was a zoo trip!  And Daddy even got to come.  We were last at the zoo right before the world shut down, so it was interesting to see all the changes that have been put in place and how life has changed in a few short months.

Hello giraffes!

Our other fun outing was a weekend trip over to see Mimi and Pop-Pop!  We got to celebrate their birthdays early, go swimming, and explore some real dinosaur tracks!

     

Swimming with Pop-Pop!

Dino-tracks!

     

Brushing for fossils!

     

Fun outing with Mimi and Pop-Pop!

And for some fun close to home, we were able to plant some seeds we had received from the school district!  

Starting some new tomato plants!

Otherwise, this kid's just been happy sleeping in!  If the world ever gets back to normal, I don't know what he'll do.

All grins after another great sleep!

The only way we survived this (and every) summer is thanks to the help of Ms. A!  So grateful that to have someone we trust to help with Little Buddy.  She's off to nursing school soon, so our moments with her from now on will be few.  We are going to miss her!

We love you, Ms. A!

Height and Weight

Weighing in at 90 pounds and up a hair to 57 3/8 inches!

Just living life and ready to get out into the world again!

Personality

He's continuing to take the pandemic in stride.  Happy to sleep in and play and eat and have his people around him.  So grateful that overall he's weathered this storm so well.  

Developmental Changes

Staying strong!  We continue to work with him the best we can and this is especially important as we've recently found out that the start of his school year is being postponed for another month.  Ay yi yi!  I have, sadly, had a trying time getting some of his usual words (so happy, for-ever) which has been hard for my heart.  But still he smiles and shows us his joy and we go on.  

Working on our PT skills!

Lucked into a quick session of horse therapy.  They needed some footage of kids riding for their virtual gala, so Little Buddy was able to get on Roany for the first time in nearly 6 months!  We need those strengthening exercises. 

We continue to give Little Buddy his clinical trial injections.  They've been going ok and we've noticed his BMs being firmer more often and very few early morning sleep disturbances.  Keeping our fingers crossed!

Fun Tidbits

So with Little Sweetie becoming a competent and strong reader, she occasionally asks to read to her Bubby.  It's beautiful and bittersweet; I love that she finds a way to be with him, but I also am sad at hour our "little" sister is the "big" sister in so many ways.

Bedtimes stories.  I might have gotten misty at this one.

That is all for now.  Hopefully next month I'll be able to update on him finally being able to go back to school!

Good night, 

LBM

Little Buddy's Momma