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!
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.
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.
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.
I love Christmas story reading time.
Pat the Elf, keeping an eye in the sky!
Happy Thanksgiving,
LBM
Little Buddy's Momma
