Jennytza's Wish Gets Approved

[candihoff1123]

We Just found out that Jennytza got her wish. We got our probable travel dates. Getting some of the travel equipment is proving to be well not so easy. Oh well it could be worse. Jennytza is a 3 year old with Acardi Goutieres Syndrome. With that comes frequent seizures, CP, the inability to move her own body and feeding issues. This morning she found out she is set to go to Disney on the 22nd of October 2011. As the home care nurse that has been chosen to go on the trip I would like it to medically go smoothly. I would like Jennytza and her family to get the best experience they can.. I am reaching out to travelers with disabilities to offer any and all advice. Rest Stations - Large restrooms for wheelchair/stroller - acceptable rides. If you experienced it and would like to share I would love to listen. If there are any other nurses out there that have made the trip with a family reach out to me with any helpful information.. Our trip is coming up fast. Thank you to everyone.

22 days 13 hours until flight to Disney

 

[of2dbeach]

here is a list for the rides ..http://wdwinfo.com/wdwinfo/disabmobility.htm
I know I saw a map somewhere about the restrooms. I might have a disability map I can scan for you too.

 

[candihoff1123]

That was very helpful. I am a woman of order and need to know things in advance. And since we are leaving in 22 days that makes things a bit tight to get things in order.

 

[candihoff1123]

Now that Jennytza’s wish has been granted and we have gotten a flight date and time I think I should take a minute and tell everyone about the wish kid and her family.

I want to start with Princess Jennytza. Jennytza will be 3 in November. She was born with Acardi Syndrome, however did not display any symptoms until she was 5 months old. So Jennytza did all of the things most children do until 5 months and then she just stopped. Jennytza was eating from a bottle and a spoon. She was rolling over. She was crying and smiling. She was holding her head up. Then Jennytza became increasingly cranky and hard to please. Her mom noticed she was not hitting all of her milestones. Her pediatrician sent her to a Neurologist. She was diagnosed. And then it seemed that all the really bad stuff started. Jennytza started to aspirate on her bottle feeds. She developed seizures. She stopped rolling over. She even stopped crying and cooing. Now at almost 3 years old she can not voluntarily move any part of her body. She makes very little noise and never cries out loud. Jennytza does not taste food, because she is fed with a gastric tube. This special little princess takes more medications in one day than I do in a year. Jennytza is a little girl who loves to be treated like the princess she is.

Now let me talk a little about Jennytza’s mom Jenny. Jenny is 22 years old. And although she speaks very little English Jenny makes every effort to understand any and all of Jennytza’s care. There is nothing that is over her head. Jenny took care of Jennytza on her own until this past April when Jennytza finally qualified for a home nurse. I am Jennytza’s home care nurse and I do not know how her mother took care of her alone all that time. Jennytza has daily seizures. She has been hospitalized every month since Jan. Jenny never leaves the hospital. Not an easy task when you have 2 other children at home. I sit back sometimes and watch the family dynamics. I pray every day that when one of my 3 children have children of their own, they will never have to experience the things this mother has.

Next is Jennytza’s dad Ramon. Ramon is 27 and is the English speaker in the home. I have watched him change many diapers and wash many dishes. The one and only thing I can not get him to do is suction his daughter. But if I need a good laugh I just turn the suction machine on and watch him run. I keep telling myself he would suction his daughter if it came down to it. Ramon loves to play his video games, but when the time comes he helps his other children with homework and takes out the trash. He tells me he likes the Hulk and Spiderman.

Jennytza has a 7 year old brother Ramon. Ramon is a good older brother to have. He loves to watch out for his baby sister. Sometimes he has to be told to let the nurses do their job. Like most 7 year old boys Ramon likes to play video games, ride scooters, and dislikes going to school. : Or so he says. But he loves to learn about dinosaurs and math. He can turn almost anything into a Spiderman web. He loves the Movie Carz and Scooby Doo Cartoons. And just a couple of weeks ago I got to see Ramon learn to ride a bike.

The princess also has a big sister Valaria, who is 6 years old. She believes she is a princess, just ask her. She likes Tinker Bell. She too is very protective of her baby sister. Much like all the girls her age I know, she loves dresses and walking in her mom’s high heels. I do not see her sit down and watch much TV, but she tells me she likes Lion King, and all the Princesses.:

I do want to mention the Jennytza’s mom is going to have another baby girl in Jan. So Jennytza is going to be a BIG sister.


Me I am Gretchen, one of Jennytza’s home care nurses. It was not until a couple of weeks ago, when the Make a Wish coordinator came to the house that I knew I would be going on this journey with the amazing family. Now I think I am more excited than the family. I can not wait to share this magical time with such an amazing family. I hope their dreams really do come true in Disney.
I fully intend to return here often to get helpful hints from other families. I as the nurse would like to make this a medically easy trip so that the family can get the best of experiences. So I again reach out to past WISH families, to give pointers and hints to help out. What rides would be good for a wheel chair? Where are the shortest lines? What might make it easier? What should the family just NOT miss?


Jennytza

 

[Betty Rohrer]

are you staying at give kids the world? if so be prepared to bo spoiled. they will do everything possible to help all of you. make a wish card will help you get any help you need at the parks. we were there in june with my grandson, not as many problems but have you camera with you at all times, at GKTW village angels will use your camera for you so you can be part of what is happening. may not have much time for your planning but expect village to be ready for you to have a great visit.