We Are Thankful

After a late night being the Lighting Luminary, it is time for this brave boy and his family to head to Minnesota for the end of Phase I of his clinical trial!  We're excited for Daddy and Little Sweetie to join us on this trip!

     

Just hanging out at the airport.  Seriously, iPads for plane trips are God sends.

Our Minnesota trip started off with us getting off the plane and heading directly to the hospital for Little Buddy's cognitive evaluation.  I was nervous how he would do after a late night, early morning, and then a plane ride to top it off, but I actually think that he did great!

The cognitive evaluation was the only appointment for Friday, so we got to have the whole weekend for a little exploring before the rest of Little Buddy's tests the next week.  

 The Children's Museum was one of our first stops.  Lots of fun and...

We got to meet our first other Type B family!  We loved meeting the L family.  Little K is in the same trial as Little Buddy.

It was also our friend, L's, birthday!  L has Type A and is in his own clinical trial.  We were so touched by his family inviting us to their house to celebrate L's big day.  We do really feel such a strong bond with other Sanfilippo families and it means a lot to us to be able to spend time with them.  Plus it was nice to be in a Sanfilippo proof house and not stuck in our hotel room! ;)

The boys had a great time together!

Worn out from the party!

After Little Buddy woke up, we decided to check out the Mall of America!  Little Buddy was amazed to see a Roller Coaster and Ferris Wheel be inside a building!

Almost overwhelming to walk into!

I somehow managed to not buy out the American Girl store for Little Sweetie!

     

     

     

Being a ham with Daddy during dinner at the Mall of America!

But our fun wasn't over yet!  We got to see not one, but two more Sanfilippo families before bedtime!  

Little Buddy and J, another Type B boy in the study!  So glad to finally meet him and his family!

Our friend, R, was back into town for her study too!

Little Sweetie's getting a little too used to this hotel life.

But finally our weekend fun had to come to an end.  It was time for the real reason Little Buddy was here; the end of Phase I!  He had to have a lumbar puncture, an MRI, and a PICC line placement in order to do blood work over the course of the week.

Daddy's ready to ride back with our brave boy.

Dr. Little Sweetie is tired of being in the waiting room and wants to jump into surgery!

     

     

"Bubby need be all done.  I am going to find him with this computer.  Here he is!  Bring him to us!"  Someone was DONE waiting.

     

It's always a process to wake him up after surgery, but thankfully he adjusted well once we promised him cartoons on his iPad!

Little Sweetie was now just DONE with the whole long day!

The next day was even LONGER.  It was infusion day, but Little Buddy also needed 24 hours of blood draws following the infusion.  That meant a full day AND night at the hospital.

Daddy and Little Buddy all comfortable during the daylight hours of infusion...

     

Momma pulled the night quite as cozy night shift, complete with an outfit change to scrubs since Little Buddy's tummy was acting up.  

     

Thankfully, all went well and we excite and ready to be discharged the next day!

Sadly, Little Sweetie was too worn out to even think about eating dinner.

Goodbye, Minnesota!  We'll see you next month for the start of Phase II!

We flew home on Thanksgiving.  It was fitting in a way.  Though there was no turkey dinner or family trips, I think we really had the spirit of the season in our hearts.  This year has certainly had its up and downs but we continue to be thankful.  Thankful for the friends and family that have stepped up to bat for us.  Thankful for the wonderful therapists and teachers in Little Buddy's life.  Thankful that, even though we hate it, we have the truth about what is going on with Little Buddy.  Thankful for all the support of our Sanfilippo family.  Thankful for the opportunity and hope the trial gives to us.  And thankful for each other and all the memories we are making.  

And speaking of memories...

Guess who tripped, fell, and lost his first bottom tooth?  :)

Unfortunately, the tooth was MIA (he must have swallowed it), so we wrote the Tooth Fairy this nice letter explaining the situation.

Reading stories with Daddy and discussing the Tooth Fairy!

     

     

Thrilled over the five dollars that the Tooth Fairy left him.  Yes, FIVE DOLLARS.  That's what he insisted the Tooth Fairy was going to bring him so I guess she complied.  I think she got conned.

The end of Thanksgiving means the beginning of the Christmas season at our house, so the kids were excited to see that our elf, Pat, had arrived and brought a basket of wrapped books.  The kids love opening one each night as we prepare for Christmas.

I love Christmas story reading time.

Pat the Elf, keeping an eye in the sky!

So I close tonight both thankful for the workings of the past year and hopeful for the year ahead.  May next Thanksgiving be as full of blessings as this one was!

Happy Thanksgiving,

LSM

Little Sweetie's Momma

November 19

It's been a crazy first month as a two year old!  Love living the adventure with this sweet girl!

     

Someone is ready for a day of errands...until she falls asleep at Target!

Maybe I should start taking this "falling asleep" during our adventures thing seriously, lol!  Trolley was too much excitement today!

     

My Gym keeps her awake, at least!

     

As does library time!

     

And family baking time is one of her favorites!

Besides our usual adventures, we also had fun with our friends K and D when they came in from Kentucky to visit.  We were able to take them to Hocus Pocus pops and listen to Halloween music!

     

Halloween is coming!

So much fun with friends!

And, as always, meal times are always an adventure unto themselves...

Well, I guess today we are dining au natural!

     

Not sure if her preference for her feet should be taken as an insult to my cooking.

     

Some days, someone is just grumpy!

     

But other days, she uses her spoon like a pro!

Height and Weight 


Still not quite 26 pounds and a little over 34 in.  Grow little on, grow!

Personality


She's so silly and fun and is really starting to grow into her own little person.  She loves to play and explore and seems even wiser than her new year old status.

     

We love you, sweet girl!


Developmental Milestones


Um...big news here.  Really big.  HUGE.  

Little Sweetie decided to potty train.  All by herself.  Asked for undies and that was it.

I was shocked when two weeks after her birthday, she said that she didn't want a diaper and that she just wanted undies.  After everything that happened with her brother and potty training, I wasn't even going to worry about it until closer to three.  I just didn't want to go through that stress again.  But it turns out that I don't have to, because she's done.  She did it herself in just one day.  No more diapers.  Not during the day, not during the night, not at all.  A week of M&Ms to reinforce everything and that was it.  I'm still in awe.  And I'm so ridiculously proud of her.  

     

     

I wasn't planning on staying home all day today in underwear, but when a toddler says she's ready, you do as she says.

     

The tools:  Potty, M&M jar.

The payoff:  Sweet Girl getting her reward after a successful potty!  (She literally took M&Ms for a week and then cold turkey quit them.  "I don't need those anymore."  This is girl is going to be SOMETHING, y'all.  Mark my words.)

Fun Tidbits


She made her first Build-A-Bear!  It was a present from Uncle C, Aunt D, and Jax.  She chose to make a bunny and she loves it!

     

Nice to meet you, Bunny The Rabbit!

If November brought me a potty-trained baby, what will December bring?  We'll have to see next month!

LSM

Little Sweetie's Momma