Purple Week!

May 15th was International MPS Awareness Day and, now that we are officially part of the MPS community, we really wanted to start helping to raise awareness and raise funds to help push the research forward towards treatments and a cure for Sanfilippo!  So, with that in mind, we established Purple Week (purple being the color for MPS) as a way to get the word out in our community.

With the help of our amazing friends, a few local businesses, and numerous supporters, I think our first Purple Week was a success!

We started the week by launching our 5 for 5 Challenge in honor of Little Buddy's upcoming fifth birthday.  Our hope was to raise $25,000 in a month to go towards Sanfilippo Research...our jaws dropped when we reached that goal in 56 hours!!!  We couldn't be more thankful to all of our supporters who are raising awareness and helping us to fight this terrible diagnosis!  We've raised our goal and continue to press on so that we can make sure more kids have access to clinical trials!

"We raised HOW much money to cure Sanfilippo?"

Our Purple Week was made even sweeter (and more purple!) by our dear friends who sent flowers and daily balloons!

Kicking off Purple Week with these beautiful blooms!

     

     

     

Little Buddy loved coming home each day from school to a purple balloon surprise!  Thank you to our secret balloon elves!

Little Sister even got in on the balloon action!

Besides balloons and social media campaigns, My Gym and JerryBuilt burgers also hosted Purple Week events for us!  My Gym donated a dollar for every person who wore purple to the gym that week and hosted to Pay to Play fundraisers.  Little Buddy was just excited because that meant that he could go to My Gym two extra times for the week!

Excited to be out of school early so he can play at My Gym and raise awareness!

     

Little Sweetie being an awesome Sanfilippo sister in purple shirt #1!

     

Some of the craziness!  So many people there supporting Little Buddy and Sanfilippo research!

The man of the hour himself!  WILL Power!

A huge thank you to our supporters and to My Gym for hosting!

After the second My Gym day on Friday, we headed over to get burgers at JerryBuilt, where a portion of the proceeds from that evening went to Sanfilippo research.  Thank you JerryBuilt!  It was so great seeing such a crowd there wearing their purple to support the cause.  And a special thank you to everyone everywhere who wore purple for MPS Awareness Day in honor of our Little Buddy!

The chalkboard wall and the milkshakes were a particular hit at JerryBuilt!

We finished out Purple Week with a BIG surprise for Little Buddy.  Once we found out his diagnosis, we started asking him about things he wanted to do.  Overwhelming, his top responses were to "eat quesadillas with Mickey at Mickey's castle" and to "play with JJ Watt" his favorite football player.  Well, on Saturday, thanks to some amazing friends, we made one of those dreams come true (and don't worry, Disney is in the works!)!

Waiting with K and K to meet his hero!

"Momma, you're cool and all, but I really want to play with JJ!"

Little Sister can't believe this is happening!

All morning, he couldn't stop talking about JJ.  But when JJ arrived, Little Buddy was in such awe he could barely talk!

He just can't believe it!

Got a little ticklish when JJ signed his jersey!

"Thank you, Mr. JJ!"

Even Little Sister got some attention!

He just can't take his eyes off of him!

So happy to see him happy!  

Hugs from JJ!

Giving JJ a WILL Power wristband!

That.  Just.  Happened.  

He made us immediately take off his shirt to confirm JJ had actually signed it!

So awesome.

And a new Texans helmet to boot.  I'd call it a successful day!  

 

On the way home.  It's exhausting work meeting your hero!  Thank you again to everyone who helped make this dream a reality!

After the success of Purple Week, we got the chance to continue to spread the word about Sanfilippo Syndrome.  KHOU came out and did a spot on Little Buddy.  The only reason we have Little Buddy's diagnosis now is because of the news coverage of Eliza.  We hope we can pay that gift forward by helping another family that may be struggling with misdiagnoses.  So grateful what we were able to raise awareness in this way to a larger audience.

     

Play date with a news crew!  Just a normal Wednesday morning!

     

Little Buddy was so excited to see himself on the television!

I can't say how in awe I am with everyone that helped make Purple Week a success.  To all the people who participated, who raised awareness, who wore purple, who donated, and who helped make a dream come true:  THANK YOU!  This diagnosis is terrible and every day we want to crumble...but we don't.  Because we have amazing people supporting us and cheering on our sweet boy.  It's your love and support that keep us going.  There are no words to thank you or tell you what you mean to us.  Your WILL Power is inspiring!

Little Buddy with his sign his friends made him at school!

With WILL Power, 

LBM

Little Buddy's Momma

May 11

Obviously, we've had a busy month! Besides all of our awesome visitors and the IRONKIDs race, we've also just had a lot of fun together. Living in the moment is very important to us and we continue to push forward with that goal by just enjoying the simple pleasures in life.

     

Because the best way to celebrate being 4 years, 11 months is by wearing your sorcerer hat!

The wind up, the pitch, and the hit!  Few things are better than baseball with Daddy!

More fun at My Gym...one of his favorite places!

     

An impromtu pizza picnic at the park!

Hammock time with Daddy!

Zooming around in his new Tiny Superhero cape!

Eating breakfast in your sorcerer hat starts the day off right.

And just so many smiles.  I cherish each one.  

Height and Weight

Weighing in today at 57 pounds and measuring in at 46 3/8  inches!  Finally seems to be slowing down in his growth patterns, which is good since he's the size of an 8 year-old!

Personality

Just happy and sweet all the time.  His tantrums have actually seemed to have decreased in frequency and duration.  He just does so well with his routine.  

Developmental Milestones

Speech is still going well.  We are excited to see him continuing to develop and watching him add words and still be verbal brings joy we didn't know we had left.  Every stride he makes forward gives us hope, hope that he will keep advancing while we keep pushing for treatment for him.  He is so smart and so creative.  We will fight with everything we have to help him reach as high as he can.

Fun Tidbits

Watching he and Little Sister develop their conversations and relationships continues to make my heart grow!  They have actual discussions (most of which end with each of them reaffirming which things are "mine") and seem to enjoy each other's company.  I hope they have a fun summer together once Little Buddy is done with school!

So we continue to push forward and just enjoy our time with Little Buddy.  I can't wait for summer and spending time with him each day!

Good night, 

LBM

Little Buddy's Momma

Happy Mother's Day and Blessings for Little Buddy

Today was Mother's Day and, while I am so grateful for the opportunity to be the mother to my two amazing kids, it's also hard because Little Buddy is who made me a mother and a genetic condition is trying to take him away from me.  

Holidays are always going to be hard from now on.  Unless Little Buddy gets into a clinical trial that actually works, our time together is limited and each holiday is a hard reminder of that.  However, we are choosing to live in the moment and live with hope.  Our sweet guy COULD get into a trial and it COULD be successful.  This is the mindset we have to live with or else it's too hard to get up in the morning.

With that hope in mind, we asked our church to give Little Buddy the Sacrament of Anointing of the Sick.  It was hard for me to see that as his second sacrament, but the beauty and meaning of the ritual mean a lot to me.  It was a hard thing to do on Mother's Day, but it was also one of the things I wanted to do most.  

     

Little Buddy receiving the Anointing of the Sick.  May the Lord Bless him and keep him.

Playing with his friends at the fountain after church.  Thank you to all our friends who supported us during this Sacrament!

Don't mind Little Sister's expression, it was a great day!

Happy Mother's Day, 

LBM

Little Buddy's Momma

Mimi and Pop-Pop Came to Play!

It's always a good time when grandparents come to visit!  Little Buddy and Little Sweetie had a great time when Mimi and Pop-Pop came to visit for week.

They arrived right before Little Buddy got home from school and hid so that he would actually take his nap.  When he woke up, he was so surprised!

We had lots of fun things planned for their visit:  Uncle C and Aunt A coming up to visit, going to an Astros game, playing!, and an IRONKIDS race.  Not to mention how thankful we were for their help!    I had to go out of town for a funeral so they helped with the kids and then they helped us do several projects around the house.  It was so appreciated; Daddy and I have been so busy with Sanfilippo stuff for Little Buddy in addition to the normal "to do" lists we usually have.  Having extra help, even to watch the kids for a little bit, helps so much.

Hanging with Uncle C and Aunt A

Astros time!

               

Enjoying some treats during the game!

Sister mean-muggin' and telling the 'Stros to get down to business!

     

      

 And just a lot of quality time together around the house!

     

Pop-Pop hard at work helping us prep and hang the doors to the new office!

We were so sad when their visit ended, but so glad that they got to come and spend this time with Little Buddy and Little Sweetie.  We are hoping to make it up to visit them this summer so we can have more quality family together.

Good night, 

LBM

Little Buddy's Momma

IRONKID!

Every year, our area hosts one of the IRONMAN triathlons.  While we've volunteered and cheered in the past, we've not participated (because really...I am in no way up for an IRONMAN.  Half marathons, sure.  Maybe a sprint tri.  But not an IRONMAN.)  But you know who is up for one?  Little Buddy!

This year was the first year our IRONMAN location offered the IRONKIDS one mile race.  After the success of Run Club last year and our desire to keep Little Buddy as active and strong and possible, we decided to sign him up.  I mean, I'm pretty sure our little hero is the definition of an IRONKID!

Ready to run with Daddy!

C'mon Daddy, let's go!

Ready for the start!  However, I am not ready for how old he looks in this picture!

     

I didn't get a lot of pictures of him on the course since I was so busy cheering, but here he is coming into the finish!  We got a lot of great footage off of the GoPro camera too!

     

Our IRONKID with his awesome medal!  So proud of him!

He ran a great race!  Daddy had to re-motivate him a few times, but he definitely had fun and felt proud of himself.  It means a lot to us to see him active and running, and to have Mimi, Pop-Pop, Aunt S, Uncle M, and Baby L there cheering him on.  We hope that he has a lot of races in his future!

"Little Buddy, you just became an IRONKID!  What do you want to do next?"

"Go to Chuy's!"

No surprise there!  A great end to a fun morning!

Good night, 

LBM

Little Buddy's Momma