Disney World 2013

It all started when we decided we wanted to take Jaxon on vacation with us this year.  There aren't many places a toddler can go where he isn't required to walk A LOT.  So we had to choose something that would be fun for him, didn't require a ton of walking on his part, and we would enjoy.  So while looking online I ran across Disney World.  I wasn't sure how much a toddler could do but I figured it was worth a look.

Don't be fooled.  There are tons of things for toddlers to do.  They need to be about 33 inches and they can do most everything age appropriate.  There are bigger roller coasters and rides they can't get on but at their age they wouldn't want to anyway.

So my next big task was to sell Jason on the plan.  He was a little hesitant because he was thinking Worlds of Fun type park.  It is nothing, I repeat nothing like Worlds of Fun.  I went online and showed him all the parks and everything Jaxon could do.  He was also worried Jaxon wouldn't remember the experience.  The only thing I could think was how much fun he was gonna have.  Who cares if he remembers it.  Do you skip going to the park or the swimming pool in the summer just because your kid might not remember it.  After I explained Jaxon is almost 4 and he remembers more than you think he was sold.  I also believe the magic wears off as they get older.  Sure they remember it but the Wow factor just isn't there.  Next it was planning the entire trip.  Since I didn't know what I was getting myself into I hired a travel agent.  There are several resorts to choose from on Disney property, meal plans, all the different options for park tickets example park hopper option.  Then you need to know the ins and outs of the parks to truly enjoy your time.  If you don't have an itenary you will end up waiting in long lines and not getting to spend as much time doing what you want.  We also wanted the travel agency to help us sort through all the options for taking a disabled child.  The agent we chose specializes in Disney world and the owner is a retired special education teacher.  What a fit.

Disney World is amazing at helping with disabilities.  We got a room on first floor, so we didn't have to worry about using stairs or the elevator every day.  When we arrived at the park, we were given a wheel chair pass for Jaxon's stroller.  This allows you to drive the stroller right up to most rides and then load him onto the ride instead of checking the stroller and carrying him through lines.  Talk about back saver.  We tried about 2 rides without the pass and we walked all the way back to the front of the park to get a pass.  Lesson learned.  We were also given a pass for Jaxon's poor vision.  This way he was able to sit up close in shows as long as it permitted.  The only bad thing I can say about their services is we had to pay for buffet meals for him a couple times and he doesn't eat a single thing.  One of them we didn't mind because the characters come around and visit, so I understand but the other one was just a plain buffet.  I guess it's something they could work on.

Each night we looked through our itenary and decided exactly what we wanted to do.  The first thing we decided was we can't do everything and Jaxon needs a nap everyday.  So sticking by those rules.  We got to the parks as soon as they opened.  Rode all the rides we had time for or until things got really busy.  Then we went back to the hotel for a nap and swimming.  Then we returned in the evening for a 2nd round.  Usually in the evening it included a show or parade with fire works.

Day 1 - We arrived about 11:30.  We checked into our room and explored around the resort so we knew where everything was.  Picked up the package I had mailed to myself.  Taking formula on a plane is a mess so I mailed most of it.  We had a reservation for a dinner show.  This was our first experience figuring out the transportation system. We took a boat to the show.

Day 2 - Magic Kingdom

Classic Dumbo ride.  We rode this at least 5 times.  He loved it.

This is a roller coaster.  And I'll tell you I even lost my stomach.  Jaxon loved it and rode it 5 times also.  He just couldn't get enough.

Of course we had to take a ride on the train.

This was our favorite parade.  They take everyone out into the street to dance with characters.  Jaxon saw this twice and had so much fun both times.

Getting ready to dance with Donald.

These awesome bushes are everywhere with all the different characters.

Of course meeting Mickey Mouse for the first time was a huge highlight.

Day 2 - Epcot

This is more of a older kids and adult park.  Jaxon had fun meeting several more characters and rode 1 ride finding nemo several times. All around the park there are areas set up like different countries including their music and food.  This was a favorite.  We also found a little playground and stopped to let Jax stretch his legs.

Epcot Ball

The flowers were amazing.

To bad parks at home weren't turf grass.  

I think his smile says it all.

Come on Daddy Again

Day 3 - Animal Kingdom

We went on a safari and got to see some really cool animals.  Jaxon's vision didn't allow him to see some of the smaller animals but he was able to see the giraffe's and elephants.  He loved all the music in this park also.  A lot of drums.

This is the Tree of Life.  On the trunk is carved out all kinds of animals from around the world.

Waiting for a seat at our character lunch.  It was a lot of fun.  All the characters come by your table and spend a little time with you.

Day 4 - Hollywood Studios.  This was another favorite park for Jaxon.  He got to see a live show with Mickey Mouse and friends, play in a Honey I Shrunk the kids play ground, he rode with Jason and I on the Toy Story ride.  We had more fun on the Toy story ride than he did hehe.  We left and went back for a nap and swim.  In the evening we returned for the Fantasia show.  It was amazing.

 Last Day - We went back to Magic Kingdom for half the day before leaving.  We rode all Jaxon's favorite rides one last time and saw his favorite parade.  We also shopped for souvenirs.

It truly was a magical trip.  Watching Jaxon respond to all the sights and sounds was a great gift.  Being able to spend a care free week with my family makes working all year long worth it.   It honestly couldn't have been a better week.  Disney is always busy but we were able to do almost everything we wanted without fighting crowds and long lines.  In the afternoons the lines tended to be really long but we were napping and swimming.

Until next time, Jason says maybe a Disney cruise.  Who knows!!

An update since Shunt Surgery

There is good news and bad news from shunt surgery.   We will start with the good news.  After a couple MRI's we revealed the shunt is working properly and has made a huge difference in the size of his ventricles.  The down side is the brain went down a little fast and pulled away from the skull causing a small bleed.  The bleed has done some damage causing him to lose a little use of his left side especially his arm.  This all happened in January so at this time he has gotten some use back with physical and occupational therapy. 

Another great thing is his speech has changed so much.  He is using all kinds of words.  So many I couldn't possibly list them all.  He can count to 10, and count by 10's to 40 I think.  He recognizes many letters of the alphabet.  He can spell his name.  Colors are still a challenge but he works really hard.  Capper Foundation has asked us to do a video for their board of directors to show Jaxon's progress.  Each year at their annual meeting they like to show the board what goes on throughout the year.  And Jaxon has had so much progress from last year it just really shows how great his team of therapists are.

He is using his vision so much better also.  Not sure if this is contributed to his surgery but we will take it.  He recognizes many more detailed objects than he did before.  We used to have to use plain colored objects with a plain background for learning and to quiz him.  His vision teacher at school is always writing me notes about how great he is doing on the activities she gives him.

He is walking better all the time.  He still needs his walker for longer distances and places where there is nothing close to hang on to.  He has been practicing stairs at school and has mastered going up 3 stairs using the railing.  He is now working on going down the stairs.  A much harder task because he still doesn't use his vision well for depth perception.  At home he can walk up and down the hall and all around the house without any assistance.  Sure he falls and smacks his head and face once in awhile but he doesn't seem to mind much.  He's on his feet all the time!!

And of course there has been some bad stuff.  The surgery has not helped his seizures at all.  He's had 3 since surgery.  One of them was really severe and he had to be taken by ambulance to the ER.  They gave him a large amount of drugs to get the seizure stopped that it slowed his respiratory.  The paramedic said "Don't panic if he stops breathing we are prepared for that"  Really don't PANIC.  Give me a break, I'm really calm even the paramedic said I was really calm and collected.  But if my little boy stops breathing that's going out the window.  Probably along with the fact I get car sick while riding in the ambulance.  This time wasn't so bad they let me sit toward the front, but let me tell you if you sit in the back it's terrible.

Another side effect is the brain went down a little fast and pulled away from the skull causing a small bleed.  The bleed has done some damage causing him to lose a little use of his left side especially his arm.  This all happened in January so at this time he has gotten some use back with physical and occupational therapy.

I guess every time you do something like this you have to weigh the good with the bad.  And even though he has had some rough spells and we have had some disappointment.  There is also a lot to be thankful for.   

Snow Day and catching up

I've gotten behind on blogging.  The holiday's flew by this year and next thing I know its March 15th.  And so much has happened.  We were asked to do a short video for Capper Foundation Board members showing Jaxon's progress from last year to this year.  And it was then I went back to his blog from last year and realized how long it has been since I've written.  So here's to catching up on a few things.

Jaxon had several snow days from school.  This year he wasn't as impressed with sledding as he was last year.

I'm not exicted can you tell!!



Daddy is a great sled puller



There's a smile!!!!

Snow Angel.  He thought this was just the funnies thing.

World Prematurity Day

WORLD PREMATURITY DAY

November 17th is World prematurity day.  All across the world organizations get together today to increase awareness.  Here are a few facts  from March of Dimes website.  Our Jaxon was 1lb and 3oz when he was born and spent 4 months in the NICU fighting for his life.  The things the March of Dimes has done to help prevent premature death, saved his life.  Jason and I are indebted to so many doctors and nurses for the amazing care and love they have given our little boy in his short life.  And we are so proud of the Superman he has become.  Even though our little guy survived, many do not so there is still a lot of work to do!!

Jaxon's Shunt Recovery

Jaxon's Recovery

Jaxon's shunt recovery has been a little difficult.  The day before his follow up appointment he started falling down more and his left side seemed a bit weak.  He also started a squinting thing with his eyes.  The morning of the follow-up he had preschool, and the the school called.  When I see "Farley Elementary" on my caller ID, I immediately think Huh what's it gonna be.  His teacher was telling me he's falling down a lot and his left side just seems really weak.  He is misjudging distance.  In fact he did face plant on his train table at home.  As I watched him it was just a simple, he didn't know how far away he was.

We went for the MRI.  It was a quick 5 min deal.  I was very excited   All of our previous MRI's he's needed to be put to sleep.  After the MRI we met with the Neurosurgeon and he informed us there was fluid build up on the right side of the brain between the brain and the skull.  This could be causing problems but he didn't think so.  The good news, yes there's good news.  His ventricles are half the size they were.  The pressure has been released from the brain and brain stem.  The shunt is doing its job.  This should help his development but only time will tell.  We expressed our concern about the falling down and lack of stability on left side.  He immediately ordered a CT scan to see how old the blood was.  The next day we got the results and the blood had occurred sometime after surgery.  So as long as it doesn't get worse it should be ok.

We met with his neurologist today because I still am not satisfied with Jaxon not wanting to use his left hand. He will try to use his right hand to unstrap his left arm from his car seat.  This has never been a problem.  We always play a little game, arm out, arm out Jaxon out.  So for him to refuse to take his left arm out is just not normal.  The neurologist didn't have any good ideas but wanted to see him to get a baseline in case things get worse.  One of our options is an EEG but really it won't tell us much because we already know he has seizures.  The only thing we could possibly do is a 3 day EEG and try to find out if he is having seizures in his sleep.  And that's only if he has them while hooked up to the EEG.  So I opted to wait and see how things go for the next couple of weeks.

I know this all sounds like a lot and starting something new sounds crazy but Jason and I feel like his speech and some other things are going so well we have decided to start going to the KU feeding clinic again.  We will begin 1 week after Thanksgiving.  The nice thing about the team is it consists of a dietitian  and a psychologist among other therapist but these are 2 we don't have a lot of access to normally.  Jaxon has made so much progress eating since we last saw them in February 2011.  We feel like maybe we can really get somewhere.  The downside is they only see patients on Wednesday mornings, so he will have to miss preschool when we go.  But he gets all the therapies at preschool every week and eating is not included so we have to fit it in somewhere.

Halloween

Happy Halloween

My little Mickey Mouse.  We visited all the grandparents.  Great thing about trick or treating to family is Jaxon only gets candy and toys he likes.  Since there are so many things he won't eat, it was nice for him to get Cheetos, cookies, peanut butter cups, light toys and books.  We didn't pictures and Nana and Papa's house he was just to tired out.

Visiting Grandma Tonya

Trick or treat Grandma Barb

Reading Go Dog Go with Great Grandma Kaff

And Again

I think he had enough costume.

1st visit to the pumpkin patch

Jaxon's preschool class visited the pumpkin patch this week.  Since the other kids don't ride the bus every day they were so excited about riding the bus.  Jason and I just took Jaxon to the patch since he isn't back to school yet.  He was super excited to see his teacher.  He just followed her around for the longest time.  We got there a little late so the other kids picked Jaxon a cute little pumpkin.  We went on a hay rack ride and had snack with the class.  It was really windy and cold so by the end Jaxon was cold and had had a enough. It was a minor meltdown.

Pre school Class

Getting ready for the hay rack ride