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!

Genetic Test results

I interrupt my fun blog posts about our awesome trip to Disney world to write about a message I got this morning.

This is the mychart message I got:

The additional testing on the muscle biopsy came back normal. The additional testing included analysis of mitochondrial electron transport chain activity, and analysis of mitochondrial DNA (mtDNA).
The mtDNA content was not within the range observed in patients with proven mutations in genes responsible for mtDNA depletion syndrome.



Have I mentioned lately how much I HATE the word NORMAL? This was the test we were SO hopeful would give us answers. Thats the message I got. No plan of what to do next. No words of where we go from here. Not even a phone call.

I have cried today, I have yelled and I frankly have been rather pissed off.

I am not a person who questions where God is, as I understand He has timing for everything however today is a day that I ask Him why no answers. Why is He leaving us hanging? What is He trying to teach us?

Jillian has speech and PT today and as her PT and I talked her PT got just as mad as I am. This is a kid we did her goal review on today and is keeping almost all of the same goals because she has not completed them. Her PT agreed with me today that her walk is looking really goofy and not like it has in the past. We did her speech goal review today and that did show progress :)

There is SOMETHING going on. Today I sat here questioning myself, is this all in my head, was I crazy, and then my husband reminded me of all of the different tests that we have had that showed us something is not right. Reminded me of the things we noticed in Disney about Jilli that were so different then a "typical" two year old. We try not to compare her to others but there are times the differences are large. She SAT in her stroller most of our time at Disney... what other two year old does that?
Her throat does not swallow right, her stomach does not move food out of it properly, her large intestine does not move food out properly and stops pooping for weeks, she aspirates, she requires oxygen to move around, her legs have low muscle tone, she requires orthodics for proper foot placement and still struggles to walk in a coordinated way, she stops peeing for days at a time, she was born at the top of the growth chart and now sits at the bottom, her body reacts in a why to vaccines that confuses doctors, she does not hear low tones, everything that is going around hits her and goes right to her lungs, she sweats a lot more then she should and at odd times, her sleeping patterns are odd, and the list goes on. That list is not "normal," something is going on!
At the same time she is a sweet little girl who is very smart and logical and smiles most of the time when everyone else would be upset. She is amazing and such a blessing! I could not imagine my world without her and would not trade her! She is kind and caring and loves people.

I just want to be able to help her and to best do that it would be really helpful to have a name for this.

So today I sent Jillian's ped a message of desperation asking if she had any ideas for me. Her nurse called me a little while later and said they would like to send Jillian up to Madison for a genetics second opinion and Brent and I agreed. I love Children's in Milwaukee (we just participated in their walk this weekend) and I still wholeheartedly believe their GI department by far is the best place for Jillian as they look at her needs and don't try to fit her in a box because her symptoms are odd, however in the genetics department we need a second look. We currently don't have a genetics doctor in Milwaukee since ours left so now is the time to see if a different set of eyes have any other ideas.
I am nervous about this. I spent time this afternoon filling out the paperwork to get Jillian's medical records released to me (I think that is a good idea anyhow, I want to see everything to see if maybe in the mix of a ton of different doctors if something was missed or forgotten) and then we go from there. Children's in Milwaukee has always been our home and going someplace else feels odd. I don't know people in Madison like I do in Milwaukee and that new feeling is scary. I am hopeful that they will be able to help us. I am praying that we get assigned to the right genetics doctor in Madison and that we are able to get into them quickly.

Tonight my head is just in a swirl.

But we are trying to make the best of it. Dan is over and playing with a little girl who is laughing and laughing, she loves her uncle Dan time, and Brent is on his way home. I have a tenderloin ready for dinner and stuffing too. Tonight might require some chocolate after dinner, trying to remind myself that even though today feels like a massive punch in the gut we will put one foot infront of the other and figure out the next step. 

Day Four

Day four was a split day for us between Epcot and then in the evening Jilli, Brent and I headed over to Mickey's Not So Scary Halloween Party.
We slept in a little bit later (like a little after 7) and got breakfast at the hotel. We figured out that buying oatmeal for breakfast at around $2 a person was our best choice because then we used our meal credits for lunch and dinner. The one morning for breakfast the four of us ate for $18 with oatmeal and a couple split pastries and we all left full. We also had our refillable mugs that came with our meal plan so we were set on drinks with breakfast.
We then headed to Epcot. We had fast passes for Figment right away and dad, Jilli and I went to Figment to use our fast passes and Brent and mom went to Mission Space because it had a 10min ride. Figment was a little frustrating because the person loading cars did not ask us if we were transferring or not, she just assumed we were so she put two people from the regular line in the accessible car while we were standing there so we had to wait for that car to make it all the way back around. For everyone else Figment was walk on at that point but we waited a while.  Figment is in an air conditioned building at least and not in the heat :)
We then all met at Starbucks. Next we headed over to the Land to ride Soarin, mom and I rode first and then the boys. It was one of the funnest time I have been on that ride because we rode next to a family that was riding it for the first time so hearing their reactions was cool and then a little boy behind us was riding for the first time and he laughed his way through.
The boys went over and rode Test Track in the single rider line and mom and I took Jilli into the world show case to meet princesses. We tried for three different princesses, each about 15min before their listed end of meeting time and at each of them the line was closed already so we met the boys on the boat and headed back to the Land for an amazing lunch at the food court (one of the best quick service meals at Disney, be aware though the sweet and sour chicken has a bite to it). Jilli took a nap during lunch and we found an outlet near a table and plugged her in.
We then headed over to ride the Nemo ride. They were very helpful with an accessible clamshell. Jilli LOVED the ride. At the end we looked at some fish. I wish we would have had more time to spend looking at the fish, but the princesses were starting their next meets in the World Showcase so we went back to Germany to try to meet Snow White (Jilli was in her Snow White costume) and at 20min before her scheduled meeting time was over the line was already closed. We headed over to meet Bell in France but we got to her meeting spot (her meet was to have started less then 10min before) and no one was there. We asked a few cast members and no one knew where she was. Finally another guest walked past and told us she was in the France pavilion in the building instead because it looked like rain. We walked over there to be told again that her line was closed. We were going to try for Jasmin but someone else told us they had just been there and had closed the line almost as soon as she started meeting. We then decided that it was most important to see Snow White so we headed back to Germany and got inline. Jilli really started to struggle with the heat and it was still more then 10min until Snow White would come out. The people around us said it was fine with them if dad stayed in line and we took Jilli out of the heat. I was so grateful for their kindness. Jilli finally got to meet Snow White. She kept asking Jillian about food she liked to eat and Jilli kept looking at her like she was crazy, we finally mentioned to her the Jilli can not eat and that is why she was getting looked at so strangely. It was funny, almost every princess we met asked Jillian what her favorite food was, they had no way of know she can not eat but we chuckled each time as Jillian looked at them like they were nuts.
It was then time for the three of us to head over to the Halloween party so we took the boat back to the front and got on the monorail. Once on the monorail we waited for a while at the station because there was a problem with a different monorail and they were having to take it off the tracks. Jilli enjoyed the monorail and met another little girl named Jillian who she played peek-a-boo with, it was really sweet. Anytime they said to hang onto the railings Jillian grabbed onto the railing and held on, she thought she was such a big girl! We got to the ticket and transportation center and the monorail line to the Magic Kingdom was down and the resort line was crazy so they were sending everyone to the ferry. Jilli got to experience most forms of transportation while on our trip. The ferry was full of people in costume.
We got into the Magic Kingdom and got our party wrist bands and candy bags. We met Tinkerbell in a very short line. We headed back to Picos Bill's for dinner and it was very good. I think next time we will split one meal there because it was a lot of food. We were close to the pin shop and it was now around 6:45 (we left the gates Epcot around 4 but transportation took quite a while to get over) so I headed over to get the even exclusive pin. That was one of the craziest, awful experiences I have had at Disney. One cast member was telling people you could only buy two of each pin however at the register they were letting you buy as many as you wanted. There were only 4 check out places. The store was more crowded then watching the parade. The line barely moved because one person in front of me bought $3,000 of pins an another family bought close to $2,000 worth of pins and then could not decide where they wanted them shipped to. A manger walked by the line and guests complained that if the rule was 2 why was it not being enforced and his comment was that he can not tell who was there to buy them for themselves and who was buying them to sell them on ebay so he could not enforce a limit. He said he would try to help but walked out of the store instead. Brent said there were people outside the store (guests) selling the event exclusive pin to people who did not want to deal with the craziness inside the store. All I wanted was my one pin. While I waited to buy my one pin (they did end us selling out of limited edition event merchandise) Brent and Jilli got to see the Country Bear Jamboree so at least that was good for them. We then tried to go see any of the characters but since the party had already started the lines for most characters were over an hour long. There was no way Jilli could wait outside that long in the heat. We looked to do the trick or treating but the lines for that were crazy too! We tried to get near the parade but could not get a spot where Jilli could have seen. We ended up just skipping all the event stuff and met Arial (she is not in anything special for the party so her line was short and is covered), rode Pooh (which they let her ride twice in the accessible car because no one else was waiting for it), Buzz and the magic carpets. We then called my parents and asked them to come get Jilli because the park was so crowded that getting Jillian's stroller through was very hard. On our way to meet my parents we brought Jilli in to meet the talking Mickey. That was so sweet. She just keep telling him "I love you Mickey!" It melted our hearts. My parents took Jilli back to the hotel on the bus and Brent and I rode Space Mountain and the Peoplemover. The place was still packed so we left. We wont be doing the Halloween party again. We brought tickets for the first night because everything we read places said that it would be one of the nights with the lowest crowds, instead it ended up selling out last minute. I would have never bought tickets for this party the week of Halloween when it is known to sell out because I would not have wanted to deal with the crowds, had I know this party would be this crazy I would have never spent the $70 a person for Brent and I to go (Jilli was free because she is under 3). In the past I have always gone to Disney during the summer months and have never seen the park as crowded as it was that night. Overall we left the party disappointed but we tried to make the best of it. We then got on a crowded bus and headed back to the hotel, where Jillian was still awake... thankfully though she was not a puppy that night and went to bed easier.

Getting the princess ready for the day

On the Nemo ride!

A cast member helping us get Jilli on Nemo, they were great!

Meeting Snow White

She is one silly girl!

Playing iPad in grandma and bumpa's bed!

The girls!

Jillian and her Snow White

Brent dressed up as Dr. Horrible for the halloween party, her only stayed dressed up for a little bit as he got hot fast

On the monorail!

Jillian was showing people her shoes

Riding on Figment

My fun hair bow I bought in Disney to go with my Minnie outfit

Jilli on the boat in Epcot

Playing peek-a-boo on the monorail

Family Selfie on the Magic Carpets

in the line for Pooh, its an interactive honey display

Jilli and I won on the Buz ride

Jilli and Arial

Jilli watched carefully as she wrote her name

By Arial's castle

We found some ghosts!

Jillian thought this was just silly!

Hi!

She was SO happy to meet Mickey!

They showed each other their noses!

After a couple minutes she had to hold onto the stroller to help hold her up, her muscles are having a really hard time again and we are trying to figure out what is up, it started a little before our trip but is now to the point where our friends are noticing her leg muscles are struggling more

Jilli showed Mickey where his nose was!