November 19

Our fresh five year old started off the month with lots of adventure, from Halloween to New York to her Dream Room to Thanksgiving programs to Christmas prep!  We've been on the move!

Coming home from Ohio took us straight into Halloween and Captain American and Spider Girl were ready to go!

And then the next big trip happened...we headed to New York to cheer on Mr. R in the New York Marathon.  We had a great trip hanging with him and and Ms. L and we had the added bonus of spending time with our dear friends, the M family!

New York bound!

My favorite hotel breakfast date (the boys slept in)!

     

The best time ever with the M family!  Their middle son, J, also has Sanfilippo Syndrome.  Their youngest son, M, is just a year older than Little Sweetie and these two get along amazingly.  We had a great time hanging at their house with them and getting to participate in their Moonball kickball fundraiser for the Cure Sanfilippo Foundation!

Little Sweetie with the puppy her buddy M gave her.  

Wishing Mr. R luck the day before the big race!

Our dinner location that night had a fooseball table...Little Sweetie is ready to follow in her mom and dad's fooseball footsteps!

The day of the marathon went really well.  We met up and hung out with Ms. L and got to cheer Mr. R on twice as he made his goal of finishing under 3 hours!  It was amazing!  Also, I survived walking about 13 miles that day with Little Sweetie strapped on my back.

Preschooler-wearing!  She was so excited that she still fit (as was I.  It was very crowded and having her on my back felt much safer.)!

     

Ms. L and Little Sweetie were best buddies!  They played a lot together (giving Momma a break) and took a few jogs through the beautiful foliage of Central Park!

    

The girls!

Soon, it was time to head back...but going home was another adventure.  Dream rooms awaited!

      

Enjoying authentic New York bagels on the way to the airport thanks to the M family!

This was the room we left:

A beautiful little room that had held our dear girl from birth to now.

But it was time for an update.  She enjoyed her last night in her toddler bed before we left for New York (Momma may have cried)!

And we came home to her Dream Room!  She wanted a camping room and Sunshine Spaces definitely delivered!  I am in awe of what they did and especially appreciative of how they include the siblings of ill children in their vision as well.  Little Sister now has an amazing space and sanctuary!

     

Someone LOVES her new room!

You would think life would slow down after that, but you'd be wrong!  The holidays are quickly coming and with the holidays comes programs and activities.  Lots of fun to be had getting into the spirit of the season.

My little turkey singing in her preschool program!

   

Best buddies, G and Little Sweetie

     

Love hanging with these two!

     

So thankful for this little girl!

Later, when she had to fill out a leaf about what she was most thankful for, Little Sister said, "That we  all eat dinner together as a family."  That just filled my heart that she places such importance around family dinner, which is one of the things I am most thankful for too.

While school was out on break, and even though we resist doing Christmasy things before Thanksgiving, we did decide to finally go to Santa's Wonderland this year.  We hadn't done it before because we weren't sure how Big Brother would do, but overall it went well and Little Sweetie loved the experience!

 

Looking at the lights as we wait to go in!

Train ride!

Pretending to be a solider in with her new light up toy!

And if we're not busy with activities, we certainly are cooking up a storm!

          

     

     

Homemade ravioli.  This was intense and challenged my cooking expertise.  But she took it in stride and did great!

     

     

This was actually a really tasty cider drink!  (And a lot simpler than the ravioli!)

Height and Weight

Staying stable at 40.4 pounds and closing in on 42 inches.

Our girl.

Personality

She is a creative firestorm!  We are working the fine line of allowing her the freedom to be creative while still giving boundaries and structure because, you know, life does have time limits and we need to be places.  I do love just watching her think up explanations for things or make up stories or adventures.  She's so curious and imaginative right now.

Creative genius at work...it takes everything in me not to dive in and try to clean up!

Developmental Milestones

Speaking of creative, you can really see her imagination and fine motor skills grow through her art.  She's taking an art class at preschool right now and I can see how that's inspired her a lot.  

School artwork.

Car artwork.

We've also gotten into games lately and just being able to see her understand and synthesize the rules and alternatives is a big deal.  Big Brother never reached this level and I truly understand the miracle of these moments of development.  

Guess Who? time with my girl.

Fun Tidbits

At an appointment for Big Brother's port flush, I happened to look over to see Little Sweetie. There she was, calmly playing a game and wearing her face mask. Then I realized what shirt she was wearing. It couldn’t have been more true. 

“This is what an amazing sister looks like.”

Obviously, this is not the life I wished for Little Buddy. It’s not the life I wished for myself. But most of all, this is not the life I wished for Little Sweetie. It’s not easy being the sibling of a medically complex kid and having your every moment scheduled around doctor appointments and therapy sessions. We try so hard to do right by her. We hate that this is her normal but are also grateful that she adapts so well.

We love you, Little Sister. Thanks for being amazing.

This girl has my whole heart.  I am so thankful in this season of gratitude for every moment with her.  

Because sometimes, you just need to stop and taste the cake pops.

See you next month,

LSM

Little Sweetie's Momma