A Jilli update

I have not done one of these in a while, with just an update about Jillian stuff. Life has been rather busy lately between Disney, the walk, and grandma's funeral that I have not written about a few things. Here is my catch up...


Speech: Jillian has been doing speech at New Berlin Therapies for over a year now and has come a LOOONNNGGG way! From my 18mo old who had NO words, to my now 2 1/2 year old who has many words, she has worked SO hard in speech and we are so proud of her! It was time to redo testing and Jillian's comprehension score wowed us all at the 75th percentile! Her expressive score was lower but the two of them averaged out at a great place! She still struggles getting words out, especially if tired or being asked a question she has to answer with words rather then actions (she will frequently just repeat the last two words of your question) but she is doing amazing! So amazing in fact that she is dropping to speech every other week and then we will see from there. I am SO proud of her and so thankful for her therapist's hard work!

PT: Today Jilli had the best PT session she had in a while, thankfully because the last few have been rather rough! Her O2 levels started at a 90 today so her PT was smart about making sure breaks were taken and they did several actives that worked on helping her muscles while sitting, but Jilli worked really hard today despite it. We are going to continue to do weekly PT. We are also going to be participating in a clinic at Marquette for kids with lung troubles and PT needs. I am excited to see how that goes!

OT: We talked in PT today about some more of Jillian's sensory stuff that is going on. We are noticing more and more that she is having a harder time with noses. She is telling people to be quite in stores, she informs them they are too loud (sorry if my kid tells you to stop talking, we are working on more socially acceptable things to say!). In church this Sunday she covered her ears with my hands and just rocked during the message, and when I tried to move my hands she pulled them back on. We were are dinner this weekend and the noise in the restaurant was too much for her so she had to go outside a few times. As a special ed teacher and a former autism therapist I see the sensory overload signs for when they are, her hitting her limit, so we are working on ways to best help her with her sensory needs and figuring out what best helps her. Jillian's PT is going to talk to the OT to see if we can all brainstorm ideas together (this is one of those situations where even though sensory is my specialty, when it is your own kid it is good to have a second set of eyes look too just because things are different when they are your own kid that you interact with all of the time)

Baclofin: Jilli has officially been weaned off Baclofin. It did not work in the way any of us were hoping and was causing increased muscle weakness which is definitely something Jillian does not need more of. We had to wean her off over several days because it is a med that can not be cut cold turkey. We were all hopeful that it would help, but it did not so I am glad she is off of it.

Sleep: The only reason I can type this right now is because our house got sleep last night... something that there had not been much of lately. Between stress and the fact that Jilli thought sleeping from 11pm til 6am was all the sleep she needed (add the fact that her pump demands attention at 10pm, 2am, and 6am each day) we were all getting a little slap happy from our sleep deprivation. Brent kept asking me why I looked so angry and I just responded with tired! I am so thankful for a good night of sleep last and and for the fact that Jillian went to sleep before 9pm tonight. Oh the simple gifts in life.

Reflux: Well, that has rather sucked that past few days for her. Saturday morning I woke up at 5:30am to the sound of stomach acid going up and down her throat, yesterday she almost puked, and today she kept having to stop during PT to swallow reflux back down. I think it is a mix of med change, little sleep and the fact that this weekend was really hard on her. She goes through times when her reflux struggles more and this just seams to be one of those times, just hopeful that it calms back to her baseline before too much of it ends up into her lungs. She is a trooper though, if I had heart burn like that I would not be happy, she takes it like a champ and does not complain!

Genetics: Last week was hard for me finding out that Madison can not get us in for our genetics or neurology second opinions until January and February. Right now that feels really far away. Last week genetics mailed me a packet to fill out about Jillian and I filled it out and mailed it back the next day. Hopefully my eagerness in mailing it back so quickly shows them how much we would like an appointment so then hopefully we are able to get in if there are any cancellations because they already have our stuff.  I can be hopeful right???

Medical records: I sent in two weeks ago asking for a copy of all of Jillian's medical records at Children's. I want to look at everything in detail myself. I want to make sure we are not missing something. I called last week because I had not gotten a message back saying they had recived my request or any information about if they were processing our request. When I called the person informed me that the copy company was indexing it.... I am starting to wonder what size package it is going to arrive in! They still have not told me if there is a charge and if there is how much it will be... here is to hoping a reasonable price!

Tubie Friends: Jilli has been really interested in helping make Tubie Friends lately. It has been so sweet. She has been helping me make them and will read the animals a story before we put them in the mail. It is such a great organization and I love getting to teach her to help others.

Boots: if you know Jillian you know clothes and shoes are her thing! Like my two year old tells me most days what she would like to wear, what hair bow and what shoes. She likes to match. She has been begging for a pair of tall boots for a while however there are not many in her size or they do not work with her orthodics. This weekend we found her a pair of boots that work for her. She is so excited!

Clothes: She also scored jackpot on clothes shopping this weekend. Carter's had a HUGE sale and an additional coupon and she needed pants. My mom and I went in and literally looked at almost every pair of pants in the store to see what we could make work for her. She is such a different shape apparently then most kids pants. She has a very tiny waist, tiny butt, however her legs have grown some in length. We walked out with 5 pairs of pants that work for her!!! I am so excited because we were getting very low on fitting pants right now (this does not work well with med ports that pop open and all poop that comes out comes as liquid and she goes days in-between pooping...). She is wearing anywhere between a 9mo and we found two pair of 2T pants that fit. This girl is like shopping for woman's jeans! I figured we had a few more years before pants became this much of a struggle! The problem with most pants is either they are long enough but too big in the waist/crotch (like most 18/24mo pants the crotch hangs almost to her knees, any girl who has warn ill fitting tights knows how comfortable that is...) or they fit perfect in the waist but are just a little too short, especially when she sits. I have learned how much this weekend the difference can be between two different pairs of kids pants that are labeled the same size. We also hit up Janie and Jack's friends and family sale online this weekend and got her Christmas dress from their clearance sale (gotta love clearance plus coupon!). Their dresses by far fit her the best right now and I love it when I can get one of their dresses cheaper then a Carters dress on sale at Kohls! Their quality by far is better then most other kids clothes (my kid is in her third fall wearing the same size clothes and most kids clothes just are not made for that), however their prices are typically crazy and way out of budget so I am super excited when I find clothes from there in the budget!

Favorite things: Jillian's favorite things right now include, her little people princesses, the baby dolls, coloring, Duplos, potato heads, and playing board games. Her favorite TV shows are Sofia the First, Bear in the Big Blue House, Mother Goose Club, Disney Sing-Along Songs, watching Disney parades on youtube, and Daniel Tiger. She loves the iPad and enjoys her Daniel Tiger games and her Disney games the most. She loves to sing and it is adorable to listen to.

So, that is our Jilli update right now!

The day I saw how the chuch's love touches people

Yesterday was Brent's grandma's funeral. I was a HARD day on us all, but also a day of celebrating what an awesome person grandma Jill was.
We told stories of the funny things, and the kind things grandma did.
One thing that was felt in that room was love. Grandma had that way about her, even if you were mad at someone she had a way into talking you into being less mad, and by the end of the conversation you wondered why you ever let yourself get so upset with the other person.
It was good to see people I have never met, and people that I have not seen in years all come together to celebrate grandma Jill.

At the end of the day, one of the feelings I left with was pride, and that pride was for our church.

See, grandma and grandpa moved to Florida a few years ago. Just before they moved grandma started coming to church with us each week, and then when they would come up to visit grandma and grandpa would always come to church with us.
A few weeks before grandma died she had called me all excited that they were going to go try out a church of some friends they met in Florida, and she was hoping that it would be her church home in Florida that she had been searching for. She wanted it like the church Brent and I attend here, she said she always just felt at home and welcome at our church, like it was not a show, that people cared.
Grandma and my last conversation was about church and God and showing other people God's love. I feel so  blessed that was the topic the last time we talked. We talked about telling other people about Jesus and how all of Jillian's stuff has effected so many people and their walk with God, I have seen Him use Jillian's story over and over and over to lead people back to Him, it is rather amazing and humbling. Our last conversation was about someone that I had no idea about their faith and how God was using our story in their life. I was blessed to be able to have open and honest faith conversations with grandma.
So when she died it was only fitting to Brent, grandpa and I that the service should take place at our church since it was a place she so deeply cared about and felt welcome.
I have gone to this church all of my life, my mom has gone there all of her's, my grandparents go there and my great-grandparents went there, it has been home to my family for a long time. I grew up very involved, was in church musicals, taught Sunday school to three year olds, and served on the multi-media team. When Brent and I started dating he started attending with me and was baptized there. We were married at our church.
But when you are a part of something for a long time some of the different aspects become normal, the way they have always been and should be. At our church we love people, not always perfectly, we are human, but for me I have always had people at church who love and care about me.
But what I watched yesterday was seeing my church love others, others who had no connection to the church other then it being the location of a funeral they were attending. I can't tell you how many people I heard commenting about how amazed they were that the church would allow us to have grandma's service there, and amazed that one of our minsters would do the service.
We had a lunch after the service. Members of the church got there early in the morning and cooked all of the food, and other families from the church donated the dessert. Multiple people stopped me shocked that a church would cook food for them after a funeral. To me, this is what our church does, but it was interesting to me seeing it with different eyes yesterday. I had never planned a funeral before so this was a different experience for me, I had always attended and the way our church does things to me is normal.

This weekend I got to see how much some simple acts mean to people.

I love my church and call it home...

But this weekend I was so PROUD of our church and how they showed love to our family in such a hard time.

On of the picture boards I made, thank you to some of grandma's friends and family for sending me pictures to include, that means a lot to us!

Even under these circumstances, it was still nice to see people and catch up. Saturday night a bunch of us all went out for pizza together. It was a good time to be together as family. It is what grandma would have wanted, for people to be together (she it not a person who liked a big fuss being made about her, but she loved seeing people she cared about together).
Jilli had a rough day. We had to wean her off of one medication this week because it was having some very undesirable side effects and we needed to get her off of it now, but had to step down off of it slowly, so her body it dealing with coming off of the med, and she is a very intuitive little girl. She knows when something is not right. Friday night she had a hard time while we set everything up. Saturday during the funeral she was not her normal bubbly self and by the night she was melting down, which is not like her (she is also becoming more and more sensitive to heat and loud noises and the pizza place was both hot and loud and she ended up having to go outside for a while). Today she is a little more like herself but still not "right" yet. She and grandma were close, in fact when Jilli and I were talking Friday night I asked her what she liked about grandma Jill and she said that she liked that she played toys with her, which is true, the last time grandma was at our house she got down on the floor and played toys with Jilli, and that has really stuck with Jillian.
Jilli had a hard weekend with her reflux. I woke up at 5:30am Saturday morning to the sound of liquid going up and down her throat and her almost puking. She had not gone to sleep until close to 11pm Friday night at was up by 6am Saturday because of her reflux. During church today she held my hands over hear ears during the message and rocked, Brent took her out for a while, and then she came back in to sing, she sure loves singing at church (and today she loved sticking her tongue out at people during the singing!) Today after lunch we pulled into my parent's driveway and my dad went to get her out of the car and she said "I puke" so we grabbed a blanket as her coughed and dry heaved a few times and then was ok, thankfully no puke.
Today grandpa went to church with us and then we went to one of grandma's favorite restaurants, Cracker Barrel. They are clearancing out most of their wooden doll furniture at really good prices right now, and that was something Jilli and grandma would always go look at and play with while we were there. In fact when grandma and grandpa left here in May they stopped and multiple Cracker Barrel's looking for the wooden doll blender because the Kenosha store only had the demo and Jillian fell in love with it because that is the only kitchen tool we use to make her formula, so to her it was so cool that they had a blender for baby dolls. Grandma was then on a mission to find her one and told us she would stop at every Cracker Barrel on the way from Wisconsin to Florida to find one and man was grandma excited when she found one! Today Jilli got a doll bed and doll rocking chair, and I will always remember how she and grandma use to look at them.
Grandma touched each of our lives in so many ways. She helped me to become the person I am today and she helped shape the man I married. She was a huge influence in his life and as he said during her funeral, one of his best friends. She is deeply missed, but we were blessed to know her and have the privileged to pass on the lessons that she taught us.

Pizza Time

Jillian and stickers!

Why did we let Pat, Corey, my dad and Brent sit by each other???

Family everywhere you look!

Jillian in her dress from Janie and Jack!

Jillian with her new baby bed! She already had to wipes in the drawer!

Here is the link to the video that was played during the funeral:
https://animoto.com/play/or3ipdGmz4Vm2X2qrxuytw 

Al's Run- Children's Hospital of Wisconsin Run Walk

THANK YOU!!!!

Thank you to everyone who donated, walked, or run in the Children's Hospital of Wisconsin run/walk! We really appreciate everyone who participated, I can't even express how much we appreciate it!

Team Jilli raised $2,849.38!!! We could not have done it without you and your help.

It was such a nice day out! There were 19 people that walked and run as a part of Team Jilli this year!

We also got to meet a family I have been emailing back and forth with about our kiddos and it was nice to meet them in person.

Thank you to everyone who helped make the Children's run/walk a huge success this year! I really appreciate it!

All ready to go

Jillian with some of her favorite guys!

Jilli was dancing for everyone

How Jilli was most of the walk

Some of Team Jilli

During the walk

Jillian waving to people during the walk

The walkers of Team Jilli crossing the finish line

Jilli and uncle Jason

Ali giving Jilli a hug after the race

It nice to be able to talk with others who are in situations like you!

My cousin Jess, my mom, Jilli and myself. (I LOVE the zip up this year!)

Jilli at Buccas after the walk. They are always so kind to us at Bucca di Beppo after the walk when we are tired!

Genetics

I feel spent today, and honestly on the verge of tears. Most days I just keep going and do what I need to do. Most days I am hopeful and positive about it all. Today is just hard.

Madison Children's genetics called today, they cant get us in until the end of January. I know that is better then what Milwaukee can do right now, but right now that seams forever away! They did put us on a cancellation list, so we are trying to be hopeful that we are able to get in quicker but I am sure there are many people ahead of us in line on the cancellation list.

It feels like we are in a season of waiting, and waiting is hard! I know God has a plan and timing but right now I kind of want to throw a temper tantrum.

I don't know what to do. I don't even know what to ask the doctors to do next. We have always had a next plan for testing but right now I don't even know what to ask for.

I know this feeling will pass, just today feels overwhelming!

We are still waiting to hear from Madison neuro. We will see when they can get us in. I am hopeful that it is sooner.

I am also really nervous about going to a different hospital. It feels like starting at a new school mid year. I know where everything is in Milwaukee. I know how things work. I have never been to Madison Children's before. I know we will figure it out, but is feels scary.

Today I am very thankful that we were able to go to Disney last week. It was a much needed time to recharge before this. I just keep remembering all the fun things we got to do and daydreaming of when we get to go again at some point.

I know, one foot in front of the other, with time this will just feel like a short bit of time, but today it feels overwhelming.

5 tips to Disney World with a child using an Oxygen Concentrator

I'm writing this post because it is something I searched the internet for before we went to Disney and struggled to find much information about so I wanted to share the things we learned along the way to help someone else planning a trip to Walt Disney World with a child that uses an oxygen concentrator.

5. Get as many batteries as you can 
 At home we use a large plug in oxygen concentrator and small tanks when we go out of the house. Since you can not fly with tanks we rented a portable oxygen concentrator from our DME. While it is smaller then what sits in our living room, it weights more then my 2 1/2 year old and was the same size as the basket on our Baby Jogger Summit x3. We had never used a portable unit before as this was our first trip with oxygen. Our DME gave us two batteries that stayed in the unit. The "supposedly" last 5.75 hours on my child's rate, however they never lasted that long. An extra battery would have been very helpful at times and would have made us have to find a place to charge less often. There were times where what we could do next revolved around plugging in to charge for a while. I would recommend seeing how many batteries your DME will let you borrow with the concentrator and take as many as you can.


4. Stroller as a wheelchair
My little one is 2 1/2 and is on oxygen and a feeding pump most of the day. She also has low muscle tone and can only walk for short distances, if she walks too much it takes too much energy from her that is required for her other organs to function. She will need a wheelchair as she gets older when we are out of the house so that she can fully participate in things without it being too much work on her body. However at 2 1/2 her stroller works just fine for getting around (that is why we invested a year ago in a nice stroller, it gets a lot of use). Carrying her, her feeding pump, medical supplies, and a 20 some pound oxygen concentrator through all the lines would have made it so we could not have done as many things as we did. Having her stroller tagged as a wheelchair was a life saver for us and made it so we could enjoy Disney. We only came across one other guest who was not so kind about us being let into the Land with a stroller when she was being told to park her's. She was rather rude to the cast member, who we all felt bad for. Getting the tag in our case was rather easy, we went to guest relations and said that we needed it and then the cast member looked at Jillian and went and got it. I know other people who have said they need to explain why they need it, and that is so that people are not abusing the system, otherwise it will go away for those of us who really need it. We did not get a Disability Access Card (DAS) because we did not feel like Jillian's needs required it, that as long as she could be in her stroller while we were in line that we did not need more accommodations, but that is who Brent and I are, we will use as few accommodations as necessary to participate in a situation because we don't want to abuse something so then it is not there for others who need it or not there for us in the future in case we really need it then.




3. Make friends with cast members
When you need to plug in every few hours you end up sending a lot of time looking for outlets. There are some of your typical charging areas (Rapunzel bathrooms in the stumps) but those are outside in the heat. Most of the time when we needed to charge we wanted to charge while we ate so we were not just sitting around doing nothing and wasting precious Disney time. Restaurants do not have a lot of outlets in them and sometimes they were located in really odd places, however the cast members that are cleaning in the restaurant know where they are located because they use them for cleaning. We learned that they were more then helpful to help us find a place to charge the oxygen once we let them know it was oxygen we were charging and not a cell phone. We also had reservations for Prime Time 50s for lunch one day and her oxygen was about dead so we needed to charge it during lunch. We checked in for lunch about 15 minutes early and let them know what we needed and why and they found a table for us right next to an outlet. Explaining what we needed and why in a calm way got us really far.

   
2. You will still be able to do most things
Any ride my two year old wanted to do and was big enough to do (she really wanted to ride Big Thunder Mountain but is many years away from being tall enough) she was able to. Sometimes we needed to get a little creative and sometimes cast members worked with us to come up with the best way for her to ride, but we were able to make it work. For most rides we did not transfer Jillian out of her stroller, if it was a ride she could stay in her stroller then she stayed in. Her oxygen was hard to get out from under her stroller and more secure in the stroller then sitting out on a ride. With her low tone she also does not sit up nicely for long amounts of time so it is better for her to be in her stroller where she is best supported. We did not find that her oxygen kept us from doing anything she wanted to do. She is also only two so there are rides she did not go on so I am not sure how those work with oxygen (if a ride has a height requirement she did not ride it) but maybe someday down the line we will figure that out, but the great thing about Disney is that most rides are meant to be enjoyed as a family so a two year old can go on most things.




1. Enjoy
Chances are that if you are taking a child on oxygen to Disney that your life is rather full of doctors and therapists and all sorts of other medical things. While you still have to tend to your child's everyday medical needs while at Disney, it seams a little less "medical" doing it at Disney. Enjoy the time there, it is truly a magical place. Use it as a time to recharge yourself too so you can go back home and jump back into the craziness of raising a child with medical needs. I have a child who is happy during most things (including GJ tube change outs in IR) but there is nothing quite like the joy on her face while we were at Disney, that was priceless!

We met a TON of characters while we were there and they were so good with Jillian

Charging at Columbia Harbor House

Oxygen on the Tea Cups (that was Brent holding it so we did not spin much)

Charging in the ABC Commissary

The accessible boat in the Jungle Cruise

Charging and Jilli playing iPad while we ate at Prime Time 50s

Riding in the accessible boat on Its A Small World 

Oxygen and Jilli recharging in Pinocchio's Village  Haus

Attractions she went on in Each park:

Magic Kingdom:

• Its a Small world- in stroller 
• Buzz Light Year- transfer
• Country Bear Jamboree- in stroller
• Dumbo- transfer
• Enchanted Tales with Bell- in stroller
• Haunted Mansion- transfer
• Jungle Cruise- in stroller
• Tea Party- transfer
• Mickey's PhilharMagic- in stroller
• Monster's Inc Laugh Floor- in stroller
• Peter Pan's flight- transfer
• Magic Carpets of Aladdin- transfer
• Winnie the Pooh- in stroller
• People mover- transfer
• Journey of the Littler Mermaid- in stroller
• Railroad- in stroller
• Carousel of progress- in stroller
• Tiki room- in stroller

Epcot:

• Gran Fiesta- transfer
• Journey into imagination- in stroller
• Spaceship earth- transfer
• The Seas with nemo- in stroller

 Hollywood Studios:

• Muppet Vision 3D- in stroller
• Toy Story Mania- in stroller (this one took the help of manager)
• Frozen Forever Sing-along- in stroller
• Fantasmic- in stroller
• Disney Jr. Live- in stroller

Animal Kingdom:

• Kilimanjaro Safaris- transfer 

We only took Jilli on one ride and to meet one character at Animal kingdom, because of there being little air conditioning she started struggling with the heat and we headed to Magic Kingdom.   

Day six

*this post will have less pictures as the hard drive in my laptop (that I got for Christmas) decided that today was a good day to stop working, thankfully I'm married to at IT guy who is going to work on it for me but in the meantime my pics are mostly on that computer*

Day six was our last day at Disney. It is always hard to leave, but given that we had been waking up early, going to bed late and walking a TON each day we were all tired.
We got up and packed up our things. We checked our bags at the hotel (they have airline check in right there!) and they held our carry on bags for us. We then got breakfast at the food court.
We then got on a bus and headed over the Downtown Disney. It took a little longer then normal to get there with all of the construction. Once we got there we headed to the Lego store. Then we headed into the Co-Op and then the big Disney store. Oh Mickey shopping, my favorite!
Then we headed over to the toy store. Grandpa bought Jillian Potato Head parts. He said that grandma had it in her calendar to meet us at Disney that day and take Jilli to the toy store. Brent and I both had a hard time not crying.
We then headed to Wolf Gang Puck Express for lunch and had a yummy meal (this is included in the meal plan!) We stopped at Goofy's Kitchen and picked up some snacks (I love Mickey Rice Krispy Treats!) and then headed back to the hotel. I wish we had more time to spend at Downtown Disney but we needed to get back to get on Magical Express.
We got back and my mom and dad went and got our carry on stuff that the hotel was holding for us and Brent and I talked with grandpa about arrangements for grandma's service on October 3rd (it will be in Kenosha). We then said our goodbyes to grandpa and he headed home. Brent and I had held ourselves together up until that point that grandma had not been with us that day (there were a few times that were hard but we had kept ourselves from loosing it) but after grandpa left we both lost it. I am sure we were quite the sight walking through the lobby trying not to cry but tears rolling down our faces. We pulled ourselves together and went and picked up the pin for our hotel (I collect Disney pins and I pick up one at each Disney hotel I stay at) and then Jilli traded a Disney pin that someone had very kindly given to her earlier in the week (we met a couple in line that said they pick up extra pins before their trip and give them to kids to share the Disney magic. It was SO sweet) Jilli loved trading her pin :)
We then got on the Magical Express heading back to the airport. Once at the airport we went back through TSA which again was a relatively easy process (we had less meds and formula going through on the way back) and they were very helpful (Jilli once again hated that we had to take our shoes off) and then we headed down to the terminal. We had a little bit of time at the airport before we loaded and this gave us time to charge Jillian's oxygen more.
On this plane ride Jillian fell asleep at take off and woke up at landing. We had a layover in St. Louis. In St. Louis we were able to get some food before needing to board again. They gave me a harder time about flying with the oxygen but eventually let us on. On this flight Jilli played on the iPad most of the time. We then arrive in Milwaukee and back to the car. We spent the night at my parents since we did not get back until after 9pm and the next day Brent and mom needed to go to work.

So, that was our Disney trip. It was AMAZING and so special. It was what we needed after these past few years and was so good to have some relaxing family time in a magical place. I can't wait to go back again, although it will probably be a couple years before we can pull it off again (hopefully they still have free dinning again, without that and the current room prices there is NO way we could have gone). It was a week for smiles and joy! 

We looked kinda lick pack mules in the air port

Jilli and bumpa waiting for the plane

Sleeping on the first plane

This is now everything fit under the seat. I had to hold it with my foot to keep it from sliding backwards during take off

Notice the clothes change from the first flight... while she did sleep during the first flight, she also pooped at some point during the flight and we did not realize it until we landed... and there was poop coming down her leg!

She rested for like the last 5min of the second flight. The pillow really did not help with her head positioning.

Her new box of potato head parts

Day five

Day five was the day that Brent's grandpa joined us on our trip. The plan had been since we booked the trip that Brent's grandparents were going to join us on our last day at Disney when we went to downtown Disney and we would all go shopping together. Brent's grandmother very unexpectedly died in the beginning of August. We decided that we would see if instead of Brent's grandpa driving down and back by himself in one day if we could make it work for him to come the day before and go to the parks with us and spend the night. It ended up working out great and we were able to get him the hotel room next to ours at the hotel (ps, it did work out that we got a first floor room which I am very grateful for because it made things a lot easier with Jillian's stroller and oxygen)

We got up in the morning and headed to breakfast. Brent's grandpa met us at the hotel when we were finishing breakfast. We then all took a bus over to Animal Kingdom. Our first thing was fast passes for Everest. We asked grandpa if he liked roller coasters and he said he had not been on one in a long time but he would try it. Brent, grandpa and I went on Everest and my parents hung out with Jilli. When we got back my parents did their fast passes and Brent went in the single rider line as single rider was walk on at that point. Once they all got back the guys all took Jilli and headed to the meeting place for Pocahontas and mom and I rode single rider. Mom and I met the boys just as they found the entrance to Pocahontas' line. We all got in line and waited to meet Pocahontas. She was one of my favorite princesses and Jillian got to see that movie recently and really liked it.
Next we headed over to the safari which we had fast passes for. It was a whole deal about Jilli's stroller but we finally got it worked out and onto the ride. Jilli liked seeing all of the animals. By the time the ride was over though Jilli was over heated and the problem with Animal Kingdom for Jilli is there is little air conditioning. We grabbed lunch at Flame Tree BBQ and then left the park.
We grabbed a bus heading to Magic Kingdom. Once inside the gates we got some family picture done. We then headed to the Tiki Room, which Jilli loved. She was just looking all around. We went over to the Jungle Cruise where for wheelchairs because you have to enter a separate way out of the normal line they give you a paper that gives you a return time to come back which is ten minutes less then the current stand by line wait. Since the line was only 20min long at that point our wait time was 10min. We were going to look for something to do for 10min but Jilli started to complain about a head ache and started looking rough. We got her out of the sun and did water flushes. We changed her out of her princess dress into a t-shit and let her rest for a little bit. It was one of those moments that was a reminder of how quick Jilli can turn and get overheated. September for us was a great time to go because it was cooler then in the middle of the summer, I don't think with Jillian's heat issues we could go during the summer months. We did have a stroller fan that we kept blowing on her most of the time and that helped.
We rode on the Jungle Cruise which has a cool lift for wheel chairs. At this point Jilli was rather spent and she kicked back and relaxed. Once off we headed to the Littler Mermaid ride because it simulates being under water so it is cold in there. Then we headed to Small World where there was a backup of people waiting for the wheel chair accessible boat but it is not as hot waiting in that line so it was a good place to cool off.
We then headed to meet Donald Duck because we had yet to meet him and it was our last day in the park. Jilli had been asking for days where Donald was. Donald and Goofy meet together. She said hi to Goofy and was friendly but she was in love with Donald when she got to him and Donald was in love with her... until she licked him. Yup, you read that right she licked Donald Duck. Everyone just stood there looking at her not sure what to do. After she licked him we figured it was probably best to finish up pictures with Donald and keep moving! We asked her why she licked him and she did not have an answer. We then headed for dinner. The boys got Pinocchio's and the mom and I got Colombia Harbor House. We found a place to plug Jillian in and enjoyed dinner.
We then headed to the Haunted Mansion store to get a really cool set of serving plates that have the blueprints of the ride on them.
Dad, Brent and I went and rode Splash Mountain and mom, Jilli and grandpa went and watched the parade. We met them in the hub to watch the fireworks. As we came up to them someone came up with a service dog and sat right next to Jilli. Jilli has a dog allergy and the last time she was close to a dog we ended up in the ER, I did not want to take that chance even though we were outside and I was not going to ask someone else to move so we found a new spot in a different area to stand, which worked out fine.
Jillian slept through the fire works (anytime anything got loud she was out) and we enjoyed the show. We hung out for a little bit on main street while the crowds cleared a little and then headed to stand in a bus line. We got a bus back to our hotel and then all headed to bed.

Showing Pocahontas her dress

My cute princess

She could not stop looking at her

Brent, grandpa and I on Everest

mom and dad on Everest

By the tree. It was sunny so Jilli was not looking up

A kind family behind the photographer was trying to get Jilli to look up for us

Doing Jillian's hair on a safari

looking at the animals

On Jungle Cruise

Brent and grandpa on Littler Mermaid

Its a small world

Jilli Loves Small World!

The Incredible men!

How they got Jillian's stroller on Jungle Cruise

Jilli was not sure about this but the cast members on Jungle Cruise were so great talking to her and keeping her entertained while they got her off and on

Just chilling

We went to see Mickey's Philharmagic while it rained

Thats a Jillian look for you!

She was in love with Donald Duck!

I think she would have stayed with him forever. Before she licked him Donald motioned that he wanted to keep her

and here she is licking him...

It was pouring outside at this point and well air conditioned inside so my glasses fogged over

This was a fun ride on Splash Mountain. There was a lot of weight on one side of the boat which made it interesting and it was all adults so we were looking for things like Hidden Mickeys and talking about Song of The South and singing the songs. It was a great time!