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