Every Eleventh with Little Buddy: Return to the Land of 10,000 Lakes

Wednesday, June 10, 2015

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.