Day 5-Magic Kingdom!

This was the day we had all been waiting for!!  MAGIC KINGDOM!!!  It started out pretty early.  We got there around 745 because we wanted to be there in time for a front row seat at the rope drop ceremony that they do.  It was a long wait but totally worth it!  The little musical thing they do was so cool and the boys loved seeing it and helping to open up the park.

Then we got in and was a little overwhelmed haha.  The park is just huge and we didnt know which way to go.  There was so many things to do so we looked at the map and just started on the left and wanted to work our way around the park.  We started at the stitch ride and that was a fun first ride to go on.  We went on the Buzz lightyear ride after that and rode it twice because it was so fun.  You get to shoot a gun at targets and you try to get a high score.  I lost both times and Tom won both times, of course.  Tom was really serious about winning the game.  He is not competitive at all hahaha.  We have a great picture of him playing but I will post it when I get the copy to use.  We walked around and rode some rides and got a smoothie and muffins.  Then it was time for the first parade to start.  We had NO idea where it ran through so we found some shade and just sat down and waited.  We sat there for about 10 min until we realized that the parade would not be coming that way.  So of course when we went, all the shade spots were taken.  So we just sat at a table just right up until it came to us.  When we got there the parade chars were so nice to us.  They kept coming over and giving Jake and Tyler 5's.  It was the Move it and Shake it parade.  So its a street party and they are dancing in the street.  Well we went over to where they were dancing and Tyler and I started dancing and they loved it!  So they grabbed Tyler and started dancing with him.  Mr Incredible was over on our side and him and Tyler were really dancing good.  And then I walked over to Jake to try to get him out of his chair to get to dance.  He was not feeling great and so he didnt want to do anything.  He just wanted to sit there and watch.  I tried hard to get him up and then Mr Incredible came over and tried to get him up too and he still wouldnt.  So I told Jacob that I would give him $5 if he got up and danced, and that worked!  He got up and danced like crazy!  All the chars were dancing with them and having a great time.  They got to walk all around with the chars and they were the stars of the parade.  It made them feel so special and they just loved it.  I got some great pictures, and so did the disney people.  So we will be posting pictures soon.  Tyler and Donald were dancing a lot and that was Tylers favorite part of the whole thing. After that we just went to some other rides and met a few chars.  We went to have lunch at this italian place and it was so good!  I love all the food we have had here.  It has all been just great.  There was another parade starting soon and we wanted to watch it, but there was no shade spaces, so we decided to go on some more rides while that was going on.  We passed the place where the fairies were at and when we got in there, this lady said...why wait here?  Wouldnt you rather go through the back?  Of course we said YES because the wait was an hour long!!  So we got taken right to them and they cleared out the whole room so that Jacob and Tyler were the only ones there so that they could have their time with the fairies.  And it was amazing.  They were so great with the boys.  Even though they were boys and not too into fairies.  Tyler loved it, of course, and Jacob blushed most of the time haha.  I just loved it and again, got some great pictures.

After that we were kinda ready to go home.  Tom and I both got sooo sun burnt and just felt yucky.  It was hot and humid and just not great weather.  So we took the ferry back to the parking lot and left with all intentions of going back on Friday, if we could.

We get home and its about 645 or so and we get the kids ready for bed.  About 730 I go to give Jacob his meds and I can not find them anywhere!!  I took them to Magic Kingdom with us because we were there so early and I knew that I would have to give him his meds while we were there.  Plus I would need to give ti to him while we were there at night since we were going to stay for the Wishes fireworks show.  Well it was not in his pack where it should be.  I remember that he  fixed his machine while he was in the bathroom and I am pretty sure he left it in there, or something.  Well thank goodness for time difference, we made a quick call to the neuro office and talked to the nurse and she sent a prescription to CVS for us so that we could get another refill quickly.  $55 later...we had our meds again and all was good.  These seizure meds are so important that he does not miss a dose or else he can get really sick.  So everyone was scrambling to make sure he had his meds!  So because of that, we were not able to get to the wishes show.  I was pretty disappointed but thats alright.  All 4 of us were feeling sick with sore throats and so we were not feeling good anyways.  We all just wanted to come home and go to bed.  And thats just what we did!

Day 4- Universal Studios/Islands of Adventure

These are the parks I was the most excited about.  We went there when I was a teenager and I have so many fun memories about these parks!  We had SO MUCH fun and I was so excited to share those memories with my family too!!  As soon as we walked through the doors I saw the Hulk ride.  That ride is crazy.  It goes around in circles and upside down and all kinds of twists and turns.  I knew that there is NO way the kids would ride it.  So I just kept the thoughts to myself haha.

We went to Islands of Adventure first.  And the first part we came to was the super hero island.  The boys were SO excited!  They love super heros but really have no idea who most of them are. I have to say...IOA and US were the BEST by far when it comes to the chars and giving Jacob special treatment.  They were amazing with him!!  We had one lady come and bring us to every super hero.  The super heros were all so great with him and Tyler.  We first saw wolvereen.  Tyler was so scared of his long knife finger nails.  He wanted nothing to do with him haha.  It was pretty funny.  In the pictures we took, you could clearly see how scared he was.  The other super heros were all pretty good after that.  Spider Man was the one they were most excited for.

After that we made our rounds and then headed to the Harry Potter land!  That was just amazing!! Everything about it was just great.  Before we left, we had Jacob watch most of the movies so he was so excited to go and knew about most of the harry potter stuff.  We went through the castle and saw all the cool things.  We rode a fun little roller coaster.  That was the boys first roller coaster and they loved it.  We then got a butterbeer.  It was pretty good.  We had no idea what to expect but it was good and we all loved it.  I really wanted to get a wand for Jacob, but the line was always soo long.  So we decided against it and thought I would just check later on.  We have 2 days at Universal and IOA so if we go back, I will try to stand in line first thing.

After that we decided it was time to head over to Universal.  That was pretty cool.  We saw some awesome chars first thing.  We had a lot of fun with Marilyn Monroe and saw Betty Boop but the kids didnt want to take pictures with her.  Tyler was a little smitten with Marilyn, though haha.  He has a things for blondes!  We then found Tylers FAVORITE char...SPONGEBOB!!  He was beyond excited to meet spongebob.  It was so cute.  He has had at least 1 char at every park that he just was so excited to meet.  And that was this one.  We rode a few rides and just really explored the area.  Universal Studios is just awesome to walk around and explore everything.

Day 3- Sea World!

Today we went to Sea World!!  We knew that it was going to be a slow day because sea world isnt really a park that will take the whole day.  But we were excited to go because we had been watching youtube videos on some of the shows they had there and the boys thought they were so fun.

We slept in and then headed to mcdonalds for some healthy breakfast before heading off...haha.  When we got there, we saw a lady who was taking pictures and said that there were people everywhere that had cameras and they would take our picture for free and then we will see the pictures they took and because we are on our Make a Wish trip, we would get a free picture.  So she took a few fun pictures and then we were off for the first show.  When we started walking we saw this ride that did all kinds of flips and turns.  The boys were so excited for that ride!  They wanted to ride it so bad.  But we had to disappoint them and tell them that they were not going to ride it.  Jacob had his feeding pack and he could not take that on the ride.  Plus I am pretty sure Tyler was too short for it.

The first show we went to was the shamu show called One Earth.  It was amazing!!  They had these handicapped rows where one wheelchair and one person could go. So Tom said he would sit with Jacob while Tyler and I sat close by.  Tyler wanted to sit in the soak zone so we did.  Unfortunately we did not get wet.  But the boys loved the show!  And shamu was amazing to see.  Those whales are huge.  I can not believe those trainers got them to do all they trained them to do. They were perfect every time.

The next show we went to was the seamore and clyde show.  This one was awesome.  It was with the sea lions.  Before the show started they had this mime that was so funny.  I could watch the whole entire show of just him.  He was making fun of people as they walk by and doing funny things.  The funniest thing we saw him do was, one part he was ushering people to their seats.  Well he took this group of like 3 ladies and kept telling them to keep walking.  He walked right outside the door and they walked out not knowing what they were doing.  It was so funny!!  The show started and instantly started off good.  It was so cool seeing the sea lions.  They were much bigger than I thought they were.  Well then things just started happening.  One guy they had from the audience was doing everything wrong and they had to stop the show to tell him what to do.  And then the sea lions started to misbehave and not do what they were supposed to.  It made for a very funny and very long show!

Once that show was over we decided to go to the shark encounter.  That thing was so cool.  We walked through this little aquarium and saw all kinds of awesome fishes.  We then came to the shark walk through.  There were TONS of sharks...like 50 of them swimming all around you.  We saw a stingray with them all as well.  It was a little scary knowing how many sharks were all around.  Jacob loved it because he loves that kind of thing.

After that we were hungry and didnt really see a lot to eat there so we were done and left to go get some lunch.  We ended up back at Downtown Disney since it wasnt raining and we wanted to go explore around there.  So we went to House of Blues for lunch and their food was great!  We loved it.  After that we went and walked around and went to a bunch of other stores.  tom wanted to go back to the Ghiradelli store so we went over to the ice cream shop and got some ice cream.  We then just sat down by the waterfall they have and just relaxed while Tyler played with some other kids.

Jacob was not feeling well today so he was really trying to take it easy.  We knew that he was not doing well and so we wanted to go back to the hotel so that he can take a nap and try to rest.  So we went back and it started to rain, again!  It poured really hard and we just sat in our hotel room watching the rain.  Jacob took a nap and when he woke up we went to dinner.  We ended up going to the boardwalk to walk around and go to dinner.  We ate a lot of food today so no one was all that hungry.  But we still ended up ordering a bunch of yummy food.  We went back to the hotel room and put the kids to bed.  Jacob has struggled going to bed because he still is not feeling good at all.

Tomorrow we head to Universal Studios and Islands of Adventure.  I am excited about this one because when I came here when I was a teenager, these are the only parks I remember.  And I remember that they were a lot of fun!!

Day 2-Epcot!

Today we went to Epcot. We were going to get up early to get breakfast and then head there before gates opened. But last night we were so tired so we decided to just sleep until we woke up. So we did and we were still up around 8. So we got up, got dressed and out around 9 and got there around 930. It was good cause the weather was nice and not a lot of people were there. Instantly we saw goofy and wanted to go meet him. The great thing about make a wish is that they give you these magic buttons and you are supposed to go right in front of the line. We actually don't like doing that so we wait in line until the cast member sees us and takes us up there. So we saw goofy first and he was soooo much fun!!

I have seriously never met a char that was as nice as him.  He really made the boys feel special.    After goofy we saw Daisy Duck.  She was so nice and funny. We then went and saw a few other chars like Chip n Dale.  We decided to go ride a few rides.  So we started to make our rounds and went to the test track ride.  That was pretty fun and the boys just loved it.  We then went to a bunch of other rides and then decided to go to the country's.

They have the country parts all blocked off until 11 am.  So we had to sit there and wait for about 15 min until they dropped the rope to let us all in.  We were hungry since we kinda forgot to eat breakfast.  So we were trying to find a good restaurant to eat at.  We went to mexico and that was kinda blah, then we went to China, and again kind of blah.  Same with Germany.  But we went to Italy and it smelt SOOO good we just had to eat there.  The restaurant that we stopped at was still waiting to open.  So as we were waiting, we started talking to a lady there that was a local and she said that she comes to Epcot just to eat there!!  She said that the pizza is the best you will ever eat and that we should get that.  Well she was right!!  The pizza was so good!  I honestly dont think I have ever had a better pizza nor will any pizza compare to them!  She had told us (and the waitress) that they import everything to make the pizza right from Italy.  They even ship water from Italy to make the pizza dough!  After we ate we walked down to the other country's and saw some of the characters that we were able to go see and get their autographs and pictures with.  We saw Belle, Mary Poppins, and Alice. They were all so very nice and stayed in character perfectly!  We made our way back to the rides and did a few more rides.

We walked back to the beginning and it started to rain a little bit so we decided to leave and go check out some of the other Disney areas.  We ended up at Downtown Disney and as soon as we got there it started to pour bad!  By that time, it was around 5pm and we were getting hungry for dinner.  So we thought that if we just ran to a place to eat we would be able to skip the rain.  We were wrong!!  There were so many people trying to get out of the pouring rain so they were using up all the covering so we ended up getting soaked!  We ran into a store so that we could figure out where to eat.  There was a lot of little shops and we had no idea where to go to eat.  As we were waiting we saw a Ghiradelli ice cream shop and there was some space at the tables that were covered so we went and got some ice cream and sat down and waited for the storm to pass.  Well the storm never did so we ended up just leaving.  We were still hungry so we ended up getting some food at one of the restaurants here at the hotel.  We got it and went back up to our hotel room and put the kids to bed.  

Another great day!

Day 1 of Disney

So day 1 started pretty early!  We had to be up at 5 am so that we could get everything ready.  Sine we still had not told the kids, we wanted to get everything packed before suprising them so we could just wake them up and go.  However, that is not how it happened.  I guess we were a little too loud because Jacob woke up saying he couldnt sleep well and then Tyler woke up shortly after that.  So instead of waking the kids up around 6, they were up around 515.  So to surprise them, I had their make a wish and jakes wish trip shirts out and with their jeans.  So I told them that there were the clothes for them to wear for today.  And they got it as soon as they saw the shirts.  They knew exactly where we were going.  So they quickly got dressed and then helped us pack up the rest of our stuff and cleaned up a bit and then it was time for the guy to come pick us up.  He was supposed to get here at 630.  But 630 had come and gone.  Finally at about 645 I was like, I should go to the bathroom before we go.  As soon as I went to go inside, he pulled up.  But Tom told me to hurry and still go to the bathroom.  So I did.  The guy pulled up in a limo and it was awesome!  I hurried to the limo and sat down.  I went to go take a picture of the boys and realized I had forgotten my phone!!!  So we had to ask him to turn around and go back home so I could get my phone.  It was in the bathroom where I had just left it!

So we got to the airport and there was a HUGE line outside to check in.  They told us to go inside to check in, not outside.  So we went and stood in the huge line inside.  We got about half way through the line when this lady said...are you Jacob?  We said yes, and she said come this way.  She took us to the front of the line and checked us in.  When we were giving her our bags to get checked, I was counting the bags and saw we were one bag short.  And it is an important one.  Toms c-pap machine.  So I told him that we must of left it in the limo.  Tom calls the limo driver and he said he was just around the corner so he would come back and get tom the bag.  I get a text from Tom saying it wasnt in there.  We must of left it at home, outside.  Or left it inside when we were taking everything...it must of gotten left.  So I was talking to the ticket lady and I turn my head...and all of a sudden I see toms bag!!  It was on my shoulder...oops!!

Once we got through all of that she took us through security and then to our gate.  We got situated and she brought the boys bags full of fun goodies for the plane.  She then announced on the loud speaker that they  had a VIP guest.  That Jacob has his make a wish trip to disney world.  Well some guy, just walking by, asked the lady...who is on his make a wish trip?  She pointed to Jacob and he walked up to him and gave him 2 $100 bills!!!  We were shocked!!  I thought they were 20s so when I saw they were actually A LOT more than that, I was speechless.

The plane came and we got to board first.  The ride was pretty fun.  We had a lot of people around us that were asking him lots of questions and giving him lots of fun attention.  He absolutely loved being the center of attention.  They said his name on the speaker in the plane and had everyone clap for him.  He just waved...haha.  He thought it was so fun.

So we arrived and headed down to get our luggage.  We found the lady who was holding the sign that said Jacobs name on it.  We went to get the luggage and then off to get our rental car.  The guy told us where to get the car.  As soon as we headed over there, there were no cars left.  So we told the guy we needed a bigger car anyways and we ended up getting a mini van.  Its pretty fun having a van again.  We got the car and headed to Give Kids the World.  When we got there, we just walked around and explored.  We had orientation to go to and so we were just killing time before we had to be there.  Tom went to the orientation and the boys and I went to watch a movie.  After tom was done, we left to go to our hotel.

We just checked in to our hotel and its pretty nice!!  We are right on the safari and have already seen 2 animals.  Its a lot of fun and we cant wait until tomorrow comes.  Stay tuned for tomorrows activities!!

Updates and DISNEY!!

So we went to the neurologist last week.  He is such a great doctor.  We really enjoy having him as a doctor.  Not all doctors work for everyone, but for us, he works wonders!  Jacob was finally sorta diagnosed with seizures.  Since Jacob has been having some sort of seizure activity the past few months, it was nice to finally get some sort of relief, and help.  He put Jacob on some medicine and it seems to work good.  He has not had any seizure activity from what I can see, since starting the meds.  So that is a good thing!  However, we know that it is not a cure for seizures, and that he can still have one at any time.  Hence why the dog is so important to us.

We had our first fundraiser for Jacob yesterday.  The only word I have for it was...AMAZING!  We were absolutely blown away by the generosity of humans.  There were so many people who would just walk up and hand us money and walk away.  Or people who would buy stuff and tell us to "keep the change" and the people who would quietly put some money in his donation jar.  I appreciate EVERYONE who helped with it.  In donations of items or money!  And the people who helped with time and helped get the word out by sharing facebook posts and the flier we had going around on facebook.  It was amazing to see how many page visits we had because of the amount of people sharing the flier.  We have been so amazed at the generosity of others...especially those who we have never met, and probably will never meet.  The people who found it in their heart to help us out.  Because of those people, Tom and I have been trying to help out people as well.  We know how it feels to have to ask for donations or have to do fundraisers to get money for your child that is sick.  It is VERY hard...and we hate doing it.  But we are so passionate about this for Jacob.  We love him so much that we have to try everything possible to help him at a chance of a better life.  We will definitely be having more fundraisers in the future so if you are wanting to help, just wait for those details soon.  There are a few AMAZING people who have asked to do fundraisers for him on their own.  I am just blown away, again, at the amazing people who have been put in our lives.  The people who see the potential in Jacob and see what a great kid he is and just want to help.  Those people will never fully understand the gratitude that Tom and I have for them.  

This weekend has been rough for Jacob.  He had so much fun yesterday that it really wore him out.  He was hurting so bad by the end of the night.  Tom and I went out to eat with some friends, afterwards, to celebrate a successful sale.  And when we got home, Jacob was in so much pain he couldn't sleep.  He was so restless and just was not feeling good at all.  He finally went to bed and woke up feeling much better.  Just an example of how it just hurts his body so bad to run out of energy.  He looks so fine on the outside but inside his body, its a mess.  I read something the other day that gave an example of a car.  The car can look in great condition on the outside, but once you open the hood and see the engine you see what a horrible condition the car really is in.  That is how it is with Jacob....and other kids with Mitochondrial Disease.  We went on a walk tonight and tom was talking with the boys.  He told them to squeeze his hand as hard as they could.  They both did it as the same time.  He then told them to do it to me so I could see how different their strength was.  When they started squeezing my hand...I was taken back at the amount of strength Tyler had...and the amount of strength Jacob did not have!  It made me tear up a little bit seeing how bad Jacobs strength really is.

We leave for Disney World in just a few short days!  I can not believe that its almost time!  I remember when we were told that we were accepted into Make a Wish...and that we would be going to Disney World, in April...I thought...wow that is so long.  But now its finally here!!  I am so excited for it to come.  But I am also a little sad.  This trip is going to be the best time of our lives!  We are going to be able to make such great memories with each other and I know that our time at Disney World is going to go by so fast.  I don't ever want that time to be over!  I don't want the trip to come in fear of it being over.  But we will go and make great memories to have with us the rest of our lives.  Hopefully my next blog post will be telling you all about our trip!  I am going to try to blog every day that we are there, but no promises.  I am going to try to have as much fun as we can!