Happy Father's Day!!!

What a wonderful day it was to celebrate our Daddy, a man whose patience and strength is the guiding force of our family!

We were lucky enough to start our day with church with Uncle M, Aunt S, and Baby L.  This was especially fun because Uncle M is Little Sweetie's Godfather and Daddy is Baby L's Godfather.  Happy to celebrate these awesome men together!  And certainly happy to have a Chuy's lunch together with them afterward!

This family loves this guy!

Best Daddy ever!

And Godfather!

Godfather and Daddy M, on duty!

Grateful to have such wonderful role modals in our children's lives!

After Chuy's, then it was time to head home so Momma could make Daddy his favorite treat:  peach pie!

     

     

Yay for pie!

While the pie baked, these ones had fun out in the backyard.  What a beautiful scene to come upon.  No matter all the trials we face, we have a strong bond of love to hold us all together.

Hammock time with Daddy!

After dinner and pie, it was time for presents (and baths...hence the kids in their undies)!  Even though Daddy's furry kid didn't cooperate with the picture, we think Daddy liked his new shirt and the Batman pajama pants that Momma made him!  

     

Who has two thumbs and is an awesome dad?  This guy!

Happy Father's Day Sweetheart, there's no one else I'd rather have by my side for this wild journey of parenting!  Our kids are lucky to have you!

Hope all the other Dads out there enjoyed their day, 

LBM

Little Buddy's Momma

June 11: HAPPY 5TH BIRTHDAY LITTLE BUDDY!!!

It's here!  It's here!  It's Little Buddy's 5th birthday!  Obviously, every day is a milestone and a miracle now, but reaching the big number 5 is of particular importance to us.  It's been quite a year for our little man:  autism misdiagnosis, Sanfilippo diagnosis, and acceptance into a potentially life-saving clinical trial.  We can only hope that Little Buddy has many more healthy and history-making years ahead.

Waking up as a 5 year-old!

Blowing out the candle on his birthday waffles!

"Momma, what's in the yard?"

"It's for me!  W-I-L-L, that's Will!"

Very excited by a big surprise in the front yard!  A thank you to our wonderful friends for the sign!

We took the morning pretty slowly as we were still tired from our trip.  Little Buddy asked for Chuy's for lunch, but then didn't have an appetite once we got there.  Sadly, this was a precursor to him getting sick again.  Thankfully, after a rest, he seemed fine and was ready for his birthday event at his other favorite restaurant, Jason's Deli.  His appetite definitely returned too! 

     

Everything is awesome!  Ready for his Lego party to start!

Hanging with Uncle C and Aunt A!

Cake time!

     

Got his picture at 7:04 PM...the exact moment he turned 5.  Love you, sweet boy!

Such a wonderful day!  We can't thank our friends so much for supporting us and supporting WILLPower!

     

Had to do a few more candle blowouts...once with a cupcake on his birthday plate and once we when cut into the smash cake.  He loves birthday candles!

Checking out all his new books from his birthday!  Can't wait to read them during his infusions!

Height and Weight

He has definitely grown!  He's just under 47 in. now but his weight went down a bit to 56.2 lbs.  

Personality

Happy and very talkative lately!  It's been so great to have him home now all day now that school is out, but I hadn't realized what a chatterbox he's become!

Developmental Milestones

Again, still a lot of speech progress and expressing of his thoughts and ideas.  We'll be monitoring even closer now to see if we see any new developments that could be attributed to the infusions.  

Fun Tidbits

Since Little Buddy cannot understand what is happening to him right now, neither with Sanfilippo nor with the enzyme replacement therapy, we've taken to telling him that he is becoming a super hero.  We told him that he had a port put in his chest like Iron Man and that they will put "super juice" in it when we come to the hospital.  He seems to like the idea, so hopefully this will help keep him calm! 

And that's all for today.  We are just so blessed to have had this beautiful boy in our lives for 5 years!  We pray every day that we continue to have him with us, lighting up our lives, for many more birthdays.

Good night,

LBM

Little Buddy's Momma

Return to the Land of 10,000 Lakes

It was time.  Time for us to go back to Minnesota so that Little Buddy could take his spot as the last trial participant in the first Sanfilippo Type B enzyme replacement therapy clinical trial in history.

Such a momentous day had to being with waffles.

Game face on.  Let's do this.

  

Flight went well!  Enjoying his new Minneapolis favorite, Pizza Luce.  Last meal before his surgery.

Long day of blood draws and surgery prep.  Thankfully technology keeps all three of my kids entertained!

     

Hanging out, waiting to go back for lumbar puncture, MRI, port placement, and temporary PICC line placement.  Daddy got to be wheeled back with him for anesthesia.

  

And our boy is back!  Everything went well.

Little Buddy (and Mickey!) are settled in to their plus accommodations in the hospital.  Here's hoping for a good first night!

We've also got to give a shout out to Little Sweetie, who was such a trouper during a very long day.  Momma and Daddy were so thankful for her smiles and perseverance!

Having a blast in the waiting room!

     

Official brother checker and guarder!

Just being an awesome sister.

Crashed out on the way back to the hotel with Daddy.

How that we had made it through surgery day, it was time to start infusion day.  Little Buddy was going to be one of only 11 Sanfilippo Type B children in the world receiving any treatment for his terrible disorder.  It's scary, giving him experimental medication, but it is our only hope.  We are just in awe that he has this chance.  

Managed to get some rest!  Now to get ready for the big day!

 

    

     

And here we go!  In the room and on the bed.  He will receive a two hour enzyme infusion each visit along with at least 2 hours of monitoring following it.  

Grilled cheese for lunch!

     

He really enjoyed the music therapy they offered.  A great way to keep him busy for a bit of time during the infusion!

     

Finishing up the day with some pancakes...

And a rainbow!  We'll take whatever signs of hope we can get!

     

Now, it's time to charm the nurses...

     

...and NOT be in that hospital bed anymore!

     

Meanwhile, Daddy and Little Sister finish their breakfast and grab some for Momma.

     

So proud of our hero.  Please pray that this treatment gives him a chance at LIFE!

Now let's blow this popsicle stand!  Discharged!

Until next time, Minnesota!

LBM

Little Buddy's Momma