Cure NF for Kaitlyn: August 2010

Tuesday, August 17, 2010

Awareness in School

When Kaitlyn started Kindergarten, the kids started to notice she was different. She is always the last person in a race. She can't understand the assignments without assistance. To help, I wrote a little story why "Kaitlyn is special". I went to the school and read to the class with Kaitlyn by my side. We made a mini version of the book for the students to take home to their parents with a short message about Neurofibromatosis and Epilepsy. In first grade I decided not to do the book. In comparing the two years, it was clear that the kids and the parents are more understanding and less mean if they know that there is a reason she is different. She went from being "odd or weird" to being a little different/special. This year we had NF awareness bands made and sent them with the books as a special gift for the kids. We plan on having the best school year yet. She is so lucky to be in a wonderful school that understand "special needs".

Kaitlyn's 8th Birthday!

Kaitlyn wanted a "Herbie" (VW Bug) party this year. We built a "Herbie" out of cardboard for the kids to take pictures in. We also made a Herbie out of poster board to play "pin-the-number on Herbie". The party setting was in the counrty at Grandma and Pop-pop's house. She is so blessed to have such wonderful friends and family. They all came to join the fun. One of mommy's friends made the journey in her car Daisy. Guess what... Daisy is a yellow VW Bug. Kaitlyn got her first ride in a "Herbie". That night she said..."that was the best day of my life". Thanks to all of her friends and family who show their support for Kaitlyn. You are very special and we are so lucky to have you in our lives!

Preparing for a MRI

Since Kaitlyn was a baby, she has been getting MRIs. When she was late toddler age, she began to have complications when getting MRIs. Her body would think she was drowning, and her airways would close. From then on, she had to be sedated when getting a MRI. At age 6 a leison was found in her hip. She was sent to Campbell's clinic. They wanted another MRI done. I explained about the sedation. They wanted to try the MRI without anything. We had three months to practice. Kaitlyn practiced a few times a week, by putting legs under coffee table for several minutes. She was also aloud to bring any CD to listen to with big ear phones while in the machine. The day came for the MRI. She went in and climbed into the machine. While listening to "Can't Smile Without You" by Berry Manillo. She did better than an adult! The techs and I were amazed. This in turn will decrease the medical bills. Now she knows SHE CAN DO IT! She is ready for the next one, which will be in February of 2011.

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!