“A Dream is a Wish your Heart Makes!”

…and we had a dream for our girls.

Dustin and I wanted Harper and Lily to enjoy the magic of Disney together.  Harper is old enough now to understand and enjoy much of what Disney has to offer and still able to manage for travel.  Not knowing what Harper’s future may hold, we don’t want to pass up any opportunities that come our way for either of the girls especially when it comes to experiences they can share with each other.

This is a memory they will both share for their lifetime!

This wish was made possible by so many people: Disney Hilton Hotels, Grandparents, Great-Grandparents, Harper’s Nurse and her amazing friend, who will remain nameless for privacy that works for Disney.  Without each of you this wish would still simply be a dream!  THANK YOU! 

It was magic! Just like they said it would be

We had two park days at Magic Kingdom!  Thanks to our personal Disney tour guide the girls had a private meet and greet with Snow White and The Prince, Princess Aurora and Prince Philip, and Cinderella and Prince Charming inside Cinderella’s Castle.  We also ate dinner inside Belle and The Beast’s Castle, which was just like stepping inside the Disney movie itself.  The girls also had a individual meet and greet with none other than Mickey Mouse.  In addition to those amazing introductions they met Ariel, Rapunzel, Tinker Bell and Periwinkle.

Before we arrive to Disney, Lily asked us are the Princesses real?  Our answer was well they live in Disney.  When she stepped inside Cinderella’s Castle where Cinderella and all her friends swarmed around the girls in conversation and kisses, dancing and hugs, she looked up and me and Dustin and said; “They Are Real!” with a huge smile on her face.

For all families, especially with special needs

Disney is truly set up to be adaptable to all needs.  Harper was able to ride every ride!  The girls’ favorite ride was “Under The Sea”  I thought Harper might shut down from overstimulation she actually surprised us and became alert, excited, and interactive.  We had to take a down day in between the two park days because unlike Lily, who was asleep when her head hit the pillow, Harper had much to discuss about her awesome day!

RSHO travels well

Our trip was not without seizures but thanks to our ability to travel with all of Harper’s medications and supplements including Industrial Hemp Oil we were able to maintain her normal level of control while experiencing the trip of Harper’s lifetime!!

Seizure activity during and after the week of our Disney trip

January 27- February 2: Harper has 18 seizures

As I mentioned earlier travel is difficult for Harper.  The stress of being limited in her positioning for long periods of time during travel, time zone changes, etc.. mean that every time we travel no matter the reason for travel we always expect a seizure problem when we return.

This week is no different.  Harper has had 30 in the past 5 days with Monday being the worst day of 10 seizures.  Even at 30+ for this week I still am better off than prior to starting RSHO where Harper had 60+ seizures per week.  I am confident her seizure activity will mellow out by the end of the week and we can return to our normal; our normal since the addition of Industrial Hemp Oil.  We have been battling an ongoing UTI problem since the week before we left for Disney, which very much affects Harper’s seizures as well.

Florida Friends

In addition to our magical time at the “Happiest Place On Earth, “ we reconnected with Erica Daniel of Dolly’s Foundation and the CDKL5 Florida Moms!

Erica has an amazing organization, which fosters community outreach.  They connect and assist in love beyond simply the animals.  She is an inspiration of how helpful we should all be to one another.

The CDKL5 Florida Moms are also fantastic.  What a great group to know.  They do it all in a state where medical assistance is hard to come by.  Love these moms!

We couldn’t have imaged a better trip!

“Laughter is timeless. Imagination has no age. And dreams are forever.” ~Walt Disney Company

Again this trip was made possible by the help of many people related and unrelated to Harper.  We thank you and are forever grateful for your love; for without it we would still be dreaming!