Cure NF for Kaitlyn: March 2016

Wednesday, March 30, 2016

The REAL HERBIE!

Kaitlyn's favorite Disney character is Herbie the Love Bug. She was so disappointed when we didn't see him at any of the Disney parks. I found Operation Herbie online and asked for help locating a Herbie for us to go visit.
https://m.facebook.com/Operation-Herbie-169320753086/
Within minutes they contacted me back and were on a mission to locate a Herbie in Orlando for me. On the last evening of our amazing trip the Love family brought their incredible Herbie to Give Kids the World to meet Kaitlyn. She not only got to touch him, talk to him and sit in him....she got to ride in Herbie with her Step Father as the driver! She was over joyed to tears. ..we all were teary eyed. We will never be able to thank everyone enough for this unbelievable opportunity! She is still on a Herbie high from the life altering experience.

Universal Studios & Island of Adventure

Kaitlyn has discovered ROLLERCOASTERS! She rides them screaming at top of her lungs with her month wide open mixed with extreem laughter.

Legoland

Make A Wish gave us an expense card for Kaitlyn's souvenirs. I've never been able to say "you can get ANYTHING you want" before. She got Legoland exclusives and sets that she has been wanting for a long time. She came out with hours of Lego projects to do.

Disney's Animal Kingdom & Hollywood Studios

Tuesday, March 29, 2016

Disney's Magic Kingdom

Everyone loves the Magic Kingdom! This was Kaitlyn's first time at Disney.

Give Kids the World

We really didn't understand the true nature of this place. We didn't know what to expect. Oh my. ....Give Kids the World is a fascinating place filled with adventures, happiness, amazing staff and so much more ! We enjoyed as many meals as possible here. Kaitlyn loved having helpers carrying her tray to the table like she's royalty. We visited the ice cream shop as many times as possible....even for breakfast when time permitted.

The Villas were awesome ! Tons of room, full kitchen, washer and dryer and so stinking cute! Every day the gift fairy lefts surprises for the girls like limited edition games, special lanyards, GKTW mementos etc.

We played miniature golf, rode the train, rode the carousel, went fishing, saw Santa, went swimming ..the list goes on and on.

Upon arrival Kaitlyn got to decorate a special start to be hung in the tower forever more and got a magic pillow as special gifts from GKTW.

The whole place was just MAGICAL!

Make A Wish trip to Florida!

Wow! Words can not discribe the incredible experiences we encountered last week!

Thursday, March 17, 2016

Make a Wish presentation

What an amazing surprise! As we walk into Germantown High there are camera crews and lots of incredible teenagers and staff waiting for us. Kaitlyn was the center of attention staring in pictures, meeting the cast of The Little Mermaid play, interviewed for the news and a full reception of food and gifts. They are sending us to Disney, Universal and Sea World! We just can't thank everyone enough! What an life altering expirence for us all...and we havnt even left yet.

Why this blog was created...

This blog was created so that Kaitlyn's family and friends can keep up with her doctors and other events in her life. It was also created for those parents that have questions and are still at the frightening stage of learning about NF. When you first hear about your child having NF, it is so scary....all of the questions and concerns that go through a parents head is overwelming. I'm hoping this blog helps people understand more about NF. I write it in simple terms because it makes it easier to understand and explain. All of those formal terms and high tech words start to sound like another language. So I have simpified it so that kids and parents can relate to what is going on. My number one mission is to spread the awareness of neurofibromatosis to those families that have it and don't know it. I can't imagine learning about this when "it's too late".

Medical history

Kaitlyn was diagnosed with NF1 at six months of age. She was a full-term pregnancy with little complications. At birth she was put into ICU for a few hours due to breathing difficulty. Immediately during her first days, Kaitlyn was very fussy. It became clear she was having bowel problems. She was taken to doctors and treated for stomach issues. She was then sent to a genetics specialist because of a café au lait spot on her stomach. More and more “Katy-bug” spots started to appear as she got older, along with freckling under arms, hair on her lower back, posture issues etc. It was quickly suspected that she had NF. A DNA blood test confirmed that she indeed had “deleted chromosome 17” neurofibromatosis type 1. We were told her life expectancy was 9 years and she wouldn’t be able to learn past the ranking of a few years old. A bone scan was done which revealed a lesion on the left side of her scull between her eye and ear. She then started getting MRIs done regularly. Each MRI showed more lesions. As of 2020, she has 5 lesions inside of brain, one outside her skull, one between skull and scalp, one in her hip, one on her lung, around her ribs and in her arms…that we know of. During the last couple of years, hundreds of neurofibromas have developed on the outside of her body causing difficulty and pain in joint areas. The lesions in her brain push on nerves and have caused uncontrolled emotions, difficulty understanding, memory problems, night terrors, seizures etc. Luckily, she appears to have outgrown her epilepsy. Her last seizure was May 2012. In April of 2015 she had a 6x9cm tumor removed from the back of her head between the scalp and the skull. It has since grown back but not as big as the original. The tumors in her arms cause pain while using hands. She also has an uncountable number of neurofibromas through the trunk of her body. These tumors cause debilitating pain. She is now a patient of an adult pain clinic in addition to ENT, eye specialist, neurosurgeon, neuropsychologist, and genetics specialist at University of Tennessee plus pediatrician and orthopedics doctors. She has recently discovered acupuncture is a big help to relieve some her daily pain.

Therapies and education

Kaitlyn started therapies before she was one year of age. During age 2 to 3 years of age she attended a local special needs school, that specialized in learning disabilities in children up to age 3. Through grade school to high school, she received special, physical therapy, occupational therapy and resource classes. Now in high school, she is in all special education classes focusing on job skills, self-care tasks, cooking and home chores. Her IEP team work together to give her the best education possible to prepare her for the world. She can learn but it needs to be done by repetition and extra time. She is approximately at the 4th grade level compared to typical peers. Part of the special needs diploma she is working towards allows her to intern at local businesses to learn hands on job skills. She is being trained to be a teacher’s assistant in the local middle school. Her dream job is helping others like her in the school setting. She earned an occupational diploma in spring 2021. She continues to attend high school to focus on her job skills in hopes of having a job when she ages out of school. Kaitlyn knows God made her different and does her best to enjoy every day to the fullest. She is very active in the special needs community…2 different cheer teams, dance team, baseball, self-defense class, multiple proms and many other special needs events provided by our hometown and local churches. She has out learned and out lived way pass the doctor’s expectations. We know every day with Kaitlyn is a blessing!