Children's museum trip

My mom works in the schools so she has time off in the summer and I am now a stay at home mommy so we made it our goal to visit some new places this summer and have a few fun days. We have a lot of medical appointments this month so we are trying to balance that with some fun!
A couple of months ago I bought a Living Social deal for the Kohl Children's Museum so we decided on this cold day in July it would be a good day to spend inside playing.
First I had to take Brent's car to Sam's Club because his tire blew yesterday on the way home (check out Brent's Facebook for the picture) so we needed to get a new tire and his tire was still under warranty. They insinuated that we did something to the tire to cause it. I don't even know what I would do to cause the tire to blow like that, and trust me we all had better things to do last night then deal with Brent on the side of the road from a tire and me having to drive it to Kenosha on the spare tire this morning. They would only give us 1/2 off a new tire because they felt the other tire was 1/2 used. After we got that taken care of we headed to the museum.

Here are our pictures:

Jilli "tube fed" her baby

She read a felt story with grandma

She "tube fed" the doggy in the vet office

she loved painting

you cant tell in this picture but she got paint all over herself making this... even behind her ears

she got to "drive" a train

what will hover?

building city people

she really loved this table and pegs

She got a map outside and she used it to show us where she wanted to go. She really likes reading the map

she really liked this spinney thing

she really wanted to climb this so we all worked together to make it happen

she insisted that mommy had to get in the plane with her

there was a little maze. It was interesting in the umbrella stroller

Uncle Jason... its your room!

she used one mallet to play and sang in the other one

this was really cool!

Jilli decided she needed a rest so she walked over to the nursing station and laid down

She missed PT this week because of her CT scan so we did a little at the museum

She got to drive a boat!

She worked on "bricking" a house

She wanted to go back to the baby doctor area

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.

Well that did not work... again

I try to live in this balance between optimistic and realistic... sometimes I think I come off a little pessimistic in my realism. The past two weeks have been a journey again in being hopeful something would work but realistic enough to manage my expectations and honest enough to admit that it did not work... again.

Jilli had an appointment with someone in the speech department at Children's two weeks ago. At this point we know multiple people in the speech department because they work closely with GI on swallowing issues (which Jillian has). Jillian's new GI doc sent us back to speech at Children's (this is different from the speech we see each week in therapy) to look at her swallow again.
Honestly when they told me this I was not sure how to feel (I told someone that I think they enjoy watching me go insane, lol) because we have done these trails before and they have ALWAYS not ended well and we have not "fixed" anything since the last one and nothing with Jillian's GI or respiratory system is any better then the last time we did one of these (in fact we added oxygen since her last one) I had to still be hopeful that maybe this time was different, but realistic at the same time.
We met with the speech path and we decided we would try 10ml water trial again. We decided on water because it is least damaging to the lungs when aspirated. The goal was to see if her body could take something orally in really small amounts (15ml=1tablespoon).
We tried multiple times. Jillian will happily take water from a spoon. For how little experience she has had with eating she actually does ok with it. It looks like a baby first taking baby food off a spoon but that is where her skills are.
Then when she was done she would start says "hurts mommy" and "ow" while rubbing her throat. She would also hold her belly. She would have these times were she would look like she was "spacing out" and you could not get her attention (she has done this for a long time after having things orally... the thought is that it is a pain coping mechanism, it looks like an absent seizure). She was also refluxing a lot. You could her the water going up and down her throat and she had times where it would come back up into her mouth. Her breath smelled like puke. This would happen for over an hour after she ate. She would also start coughing and the cough would last for a day or two after she had the water. The cough is a sign of possible aspiration.
We stopped these trials a few days ago because 10ml of water is NOT worth risking aspiration pneumonia or an oral aversion. Jillian has always been fine with putting things in her mouth (sometimes a little too fine with it causing her to aspirate on a piece of food she picked up off the floor back in January) so we really do not want to have her start to associate food with pain because then we are just adding an additional problem. 
We had an appointment with Jillian's ped on Monday just to check in. I told her about what was going on with these water trails and she told us to stop (we already had). Yesterday I called speech to check in with her to let her know how it went. She called me back yesterday and said she had a meeting to go to but she just wanted to let me know quick that she agreed with the stopping and that she would call me back so we could talk more.
She called me this afternoon and we were able to have a long conversation about what is going on. She agreed that doing this water trail was not working. We went back to her being NPO except to take her two meds that have to be given orally for them to work properly (she loves taking these meds and they are a really small volume... she still refluxes them sometimes however not as much with the small amount) We are debating if one of the tests they are looking to do next month is worth it because it holds a risk of her aspirating. She is going to go back to the doctors and talk to them about it. I truly appreciate all of the time she took on the phone with me today as we brainstormed the best ways to help Jillian.
It is good to check in every once and a while and see where her skills are at and how she is doing but we always have to keep the main goal in mind to keep her safe and healthy as can be. Her eating orally is NOT safe. Thankfully she has a GJ tube so she is able to get the nutrition she needs and that is what is most important. So we go back to where we were, but for now that is what is best for her so I am good with that. Hopefully the tests in July will help us figure out some more pieces to the Jillian puzzle and I am hoping for genetics to come back with some pieces too.
We are long enough into this road that if GJ tube feedings are the safest thing for her forever then that is what we will do, the biggest thing is that however we get nutrition into Jillian's body needs to be the best way for her.

In a side note, I want to thank my hubby for a fun date night last night. For our anniversary he bought me a Paint Nite class. Painting is not Brent's idea of fun, but I find it very relaxing. Most of the time we spend time as our little family of 3 and we really enjoy that but it was nice to get some time out with my hubby! We had fun painting and I bet if you asked him, he would even say he had fun. Jillian decided our paintings needed to be hung in the kitchen. I am not sure if that is where they will stay forever but that is where they are now.  

She insisted that she had to wear her scarf to leave the house. She has taken to picking out her clothes and accessories some days this summer... she is my fashionesta! 

Jilli blasts off to space with her great daddy carrying her oxygen for her

This child LOVES Charming Charlies! Grandma brought her back a new shirt from "Mickey's House." Her waist is small enough around that those are 6mo shorts! Summer is the easiest time to dress her because her waist is so small but her length is that of a 15mo old

Us painting... I even dressed up in a cute dress and make-up!