Welcome to July

Uncle Seth reading Jillian a book on the way to Door County

Jillian's new bike. I found it at Love inc in Burlington for a great price. It is perfect to push her on this summer and she loved riding on her bike while we pushed her

She sits so nicely for meds!

She was using this shovel to "chop" the gravel

We tried a new restaurant. Jilli had fun reading the wheels on the bus book

She also played with her Daniel Tiger puppets

We took Jillian mini-golfing for the first time

The club was almost as tall as she is (it was the smallest one they had)

She kissed the ball

Daddy helped her with her first hit

Selfies at the golf course

Family selfie time!

This is how we hit all of the rest of the holes. I wore her oxygen on my shoulder and helped her swing. She LOVED it! 

This was a great example about the benefits oxygen are doing for her. She could NOT have played mini golf before being on oxygen. She would have struggled to walk the first couple of holes. She took a few breaks and by 3/4 of the way she was tired and we carried her but she did amazing. Oxygen has made it so Jillian has the energy to do things like play mini golf.

Walking with grandma to the next hole

After golfing Jilli played Skee-ball with my cousin Jess. We used her tickets to get bubbles!

Watching her try to play was so cute!

Most of the "big kids" rode the go-carts and Jilli watched while she played with her new bubbles!

Jilli has a Sofia the First swim suit. She was SO proud of it.

Swimming as a family in the pool. Jilli learned that if she kicked her legs that she could move. She struggled keeping her O2 sats in a great range in the pool but she had a ton for fun! We just watched how long she played in the pool

I found this little "raft" that has holes for her legs to go in and is large enough to also hold her oxygen tank. It worked great for her!

Found some chewy beads fir Jilli at a kids store. She loved them

Waiting for the fire works for start

There were some fire works going off at some condos near by. Jilli thought the first 3 were interesting... then she did not care about fire works the rest for the night and watched very little of the big fire work show. She can't hear the booms and she wanted to play bubbles instead.

I told her she looked cute and I wanted to take her picture so she posed next to the trailer we pick up the wood in :)

So cute!

On GGs swing with daddy

She was being goofy on the swing. She spent a lot of time swinging this weekend

Swinging with her oxygen tank down by the pool. She wanted someone to push her and then everyone that was by the swings needed to swing too :)

Jillian was sad because she did not have a princess crown in Door County so daddy made her and Grandma princess crowns. Jess and Ryan bought her a princess dress up set that she loved playing with!

She sat in her raft and sang "row row your boat" She kept trying to convince Bumpa that he needs to buy a big boat :)

We went to dinner and were surprised to find out that Anna, Elsa and Olaf were going to be there that night for a Sing-along. Jillian was SO excited.

She got to get their signatures!

And dance with Elsa

This was great practice for Disney. She had to wait in line and she did a great job. She loved interacting with the characters which we were unsure how she would do with that in Disney and she did great with it here so I don't think it should be a problem in Disney

She played with a hola-hoop. I do play that on Wii-fit so she was mimicking what the Wii does.

She loved playing at this little play ground

She watched a big kid do that Monkey bars so she wanted to try too!

We left Door County Monday morning and headed to Children's for Jillian's CT scan. We were able to do the scan without sedating her! She laid perfectly still and watched Frozen. We were SO proud of her and everyone there was impressed. Then we headed over and visited my cousin who is in the hospital.

Last night Jaime and Jason came over for dinner. Jillian LOVES her Jaime and Jason and loves when they come over to play!

This morning Jillian wanted a rainbow shirt. We settled for a shirt with a sun shine that says "my future is bright"

We had a great long weekend! It was great practice for Disney because we worked on figuring out how we are going to do her tube feedings away from home and figured out packing. Out of the plethora of stuff Jillian needs for traveling I only forgot one thing... her one med in the fridge at home! Luckily the Walgreens in Green Bay could make it for her (it is a special compounded med) and my cousin was able to pick it up on their way.
Today we are hanging out at home and the goal is to unpack and get the house cleaned up. Jilli has been resting most of the day. We stayed up late most nights. She did not go to bed until after 10pm each night and I did not fall asleep until after midnight while we were gone. We all enjoyed hanging out by the campfire (no worries Jilli was a ways away from the fire and so was her oxygen tank) Jilli also though getting up around 6am each day was needed. A couple days she fell back to sleep but a couple days she was wide awake and ready to play at 6am!
I also had the fun of working on an insurance billing problem for a large part of my morning but I think I have that fixed.
Also, I am in love with the natural deet free mosquito spray. It worked great on both Jilli and myself (my parents place is next to a wet land in the woods...) The only caution is that it does turn while clothes yellow, hoping a little bleach in the wash helps get rid of the yellow.