Month 18 In Minnesota

Well, Little Buddy has now been in his clinical trial for 18 months, which means it is time for our next big trip to Minnesota.  This is always the longest one and hits right at Thanksgiving, which makes it tough, but it does mean that all four of us can go together.  I always appreciate the fact that we get to be a family unit during this visit.  

Four people in Minnesota for a week means we need a A LOT of stuff!

Loaded up and ready to go!

We arrived Thursday afternoon and Little Buddy's first appointment was Friday morning for his neurocognitive exam.  This was a tough one for Momma because it is always hard to watch Little Buddy struggle with skills that used to be so easy for him.  At least we got to watch snow afterwards!  We also went to the Minneapolis Children's Museum to burn some energy, but unfortunately much of it was closed for renovation.

The next day we got to hang out with other Sanfilippo families, which is always fun.  No one understands your situation like other families.  WE headed over to Wisconsin to meet our friend, S, at a Children's Museum there.  This museum was MUCH better than the one the day before and all the kids had a blast!  Plus, Daddy, Little Sweetie, and Little Buddy all got to cross Wisconsin off of their state list!

     

     

     

The kids having fun!  The tractor (and pretend milking cow, not pictured) were some of the highlights of the day.

For dinner, we went over to our friend C's house.  C is in Little Buddy's trial and it is always nice to talk to them about trial things.  Little Sweetie and T (C's little brother) had great fun being super siblings.  We enjoyed pizza, playtime, and a movie.

Super siblings enjoying movie time!

   

Little Buddy's having a good time!

Thanks for having us over to play, C!

With the weather being so cold in Minnesota, we were happy to find an indoor playground in order to give the kids some freedom on Sunday morning.  Being stuck in a hotel is no fun.  This playground was amazing and I wish we had one in Texas!

   

     

     

     

Such a big open and fun space!  Little Buddy especially loved running around in the basketball area and doing the slides and Little Sweetie tried a bit of everything.  

To kill some time before our big Minnesota surprise for the kids, we stopped at the Mall of America.  I was excited to let Little Sweetie explore the American Girl store!

     

     

Taking care of the babies!

And then it was time for the big surprise!  We had found out that Paw Patrol Live! was going to be in Minneapolis while we were there.  Of course we had to take our two Paw Patrol fans!

They both loved it and were in awe!  I was impressed with how well both of them did!

Monday, however, brought us back to the reality of why we were in Minneapolis.  Little Buddy had to endure a lumbar puncture, a PICC line placement, and an MRI.  Then we had to try to keep him still and resting at the hotel before coming back to the hospital for his infusions and a day full of blood draws on Tuesday.  

Ready to go back into surgery!

     

Oh Little Sweetie...you can always recognize the siblings of medically complex children.  Giving the baby a check up as opposed to just playing with it.  I have to commend her with how well she did this entire visit.  We are very proud of her.

In recovery.

Trying to keep these two still and relaxed in the hotel.  Little Buddy had his port accessed and his PICC line in, so we needed him to have a low key rest of the day.

    

The next day was very long and we were too busy to take many pictures.  Little Buddy did well and had a great time at music therapy!  However, but the end of the day and the end of the blood draws, he was done.  He even found a play screwdriver and started trying to break out!

Last glimpse of snow before we fly out!

Home and blessed.

We flew home today and are glad that we are able to be home for Thanksgiving tomorrow.  We are tired and emotional (a week stuck in a hotel and a hospital will do that to you) but we still know that we have so much for which to be thankful.

Good night, 

LSM

Little Sweetie's Momma