August 19

The past month may have been difficult as we wrestled with adjusting to life following Big Brother's trial cancellation but the truth is that we are blessed to have Little Sweetie.  Trying to keep things "normal" for her helps to keep us grounded and reminds us to count our blessings.  

We've been trying to finish out the summer strong and focus on having fun.  She's been enjoying her sports camps and the other activities we've been doing to keep the days full.

I'm really glad we signed her up for all the sports camps this summer.  It gave her a lot of exposure to different sports and she really enjoyed them.  Baseball was her favorite and she did best at that and at soccer.  Hoping to get her into a actual kids' program next year!

     

     

Checking out the zipline at We Rock the Spectrum.  She insisted on wearing the dress up helmet because, Safety First!

Although she liked We Rock the Spectrum, she LOVED Pump It Up.  She is all over this bounce house business!

Just chilling in the afternoon with a little painting project!

Since Big Brother's been so tired lately as he comes off of his clinical trial drug, we sometimes just need to have movie days.  But just seeing them be together to enjoy a movie makes me happy.  I just like it when they can do things together, no matter what they are.  

And sometimes we have such fun during that day that we come across the rare double nap!

Height and Weight

Little Sweetie seems to be starting a growth spurt!  She's coming in at 35 lbs, 6.4 oz and 38 1/2 inches!

Personality

Becoming more confident and more determined.  We had noticed that when things were more challenging or difficult for her, she started to say "I can't."  Not being big fans of that phrase or the idea of it becoming a self-fulfilling prophecy, we've started to encourage her to say, "I can't...YET."  This emphasis that she can practice at something and get better has really taken hold and even she sees things that are difficult as challenges she just needs to work at to overcome.  I'm actually trying to change my own mindset to one of "Yet" as a result.

Game face on at sports camp!  She's ready to practice and learn!

Developmental Milestones

We've seen her develop is so many ways this summer, but I may be most excited about this one...her swimming has taken off!  She did another survival swim lesson set this year and we could just watch the notion of "swimming" click.  She's now jumping in (to the deep end), swimming underwater, and swimming on her belly by herself and with confidence.  We plan on continuing lessons throughout the year to keep her skills up.  My life would be so much easier if she came into next summer as a proficient swimmer!

Swimming the entire length of the pool on her back for Ms. J!

Fun Tidbits

As tough as this summer has been with the reality of Big Brother's trial cancellation crashing down, we continue to see ways that our family will be able to carry on.  The most important thing is how we can be a "normal" family in spite of Sanfilippo and Little Sweetie shows us every day different ways that we can show our love.  We've been doing a lot of bike rides lately since Little Buddy got his trike and now Little Sweetie has been trying to help her Big Brother bike around.  She wants to play with him, she wants to include him, and that means the world to us.  As Daniel Tiger says, "Find a way to play together."

     

Showing off her super muscles and her super sibling skills!

It's been a difficult second half of our summer, but if these two can smile, then so can I!

     

My world.

See you next month, 

LSM

Little Sweetie's Moma

Our First MPS Conference!

It was a very bittersweet week for us.  With the trial ending, I had to take Little Buddy up to Minnesota for a few blood labs to be drawn to close out the study.  It was the first time in over two years that we wouldn't be there for an infusion.  Although the drug company doesn't believe that SBC-103 was helping my son "enough", we know it was.  Anything is enough when your child has a terminal disease with no treatment.  Any benefit is enough benefit.  And to be there and not be able to get the drug that was helping him...well, I can't put into words the heartbreak and hopelessness that I felt.

Last hospital trip.  I want to throw up.  

The only good thing about this week is the fact that the National MPS Society's annual family conference is also in Minnesota this week.  Blessed to be able to spend time with our extended Sanfilippo family, the only people who truly get the devastation that we currently feel.  And Daddy and Little Sweetie came up to join us for it to!  

The family is together again!

First stop on our Minnesota farewell tour, taking Daddy and Little Sweetie to Minnehaha Falls.  Little Buddy loves waterfalls and it's always a treat to see this one when we are in town.

     

Little Sister is so happy to be in Minnesota with her Big Brother!

The two boys resting up before going to check in at the conference.

The first thing I have to admit about the conference is that I didn't take nearly enough pictures!  Not even close.  Too busy meeting and talking to other families.  What a wonderful experience.

What great pictures of L, Little Buddy, and N!  So glad we got to meet these families.

The only thing better than a picture of these super Sanfilippo boys together?  Another picture including their super sisters with them!  

Worn out from the first day, but Momma is excited for all of the cuddles!  Ready for Day 2!

Cure Sanfilippo Foundation is representing!

The M family was there!  So glad to see them again! 

Little Sweetie was even more excited to see the M family and her buddy again!  They had such fun the entire conference!

     

These two are DONE!  

Day 3 consisted of a 5k race, a trip to the Sculpture Gardens, and a formal dinner.  Can't believe it was our last full day in Minneapolis.

Walking over the bridge to the race course.  I'm going to miss this place.

     

Second in my age group with my friend, D, right behind me!

Post-race family picture!

And then we FINALLY got to go to the Sculpture Garden!  Little Buddy has been obsessed with the picture of the spoon and cherry sculpture in our hotel for over 2 years.  We have wanted to go, but the  garden has been under renovation for nearly the entire time we have been in the trial.  Glad we got to check this item off our To Do list as a family.

     

The famous Spoon and Cherry!

     

Fun interactive sculpture!

     

A few of our favorites.

Glad that Little Buddy got to get out and walk around in the fresh air for a bit.  He's seemed very tired recently.  We'r hoping it's just the excitement of the conference and being off schedule.

Ready for the banquet!

     

More fun with the M family!

Sanfilippo Moms.  So glad to have these ladies in my life!

We're ridiculous when we're together.  And it's awesome.

     

Guess who does NOT want to leave Minneapolis?  You and me both, Little Sister.  Her face pretty much sums up my feelings about the end of the trial.

The last time we'll walk these hallways.

When you come somewhere regularly for 2 years, you make friends that become like family.  Our nurses, our rental car guys, our Chipotle workers, and especially our hotel staff.  So hard to say goodbye to them!  We were blessed by them and how they made us feel at home every visit.

And just when you think you are cried out, your cookie guy at the airport gives you a goodbye present.  We were truly blessed by everyone who loved on our family these past 2 years.

I'm still numb as I internalize the reality of this week.  While we were so glad that we could be with other families as we enter this new phase of Little Buddy's life, we are still just broken to know that he will no longer get any treatment.  We will research for other options and compassionate care for him but the reality is that things have changed and will never be the same again.  Little Buddy is dying and now he is receiving no treatment.  We have to find our new normal and focus on our family and our time together more than ever.  Because we don't know what the future holds or how much time we'll have together.

With sadness,

LSM

Little Sweetie's Momma