Doctors visits and updates

ENT-perfect hearing!
lesion on hip-the lesion has grown, but in perportion to Kaitlyn's growth which is ok. We are watching one leg to grow faster then the other. This is common for NF kids.
Genetics-learning difficulties are from the missing chunk of the #17 chromasome. This also proves she does indeed have neurofibromatosis. We are watching for problems in the teeth. This is common in NF children. She has several cafe au lei spots, but the fibroma spots are multiplying. They are filled with hystamine, therefore they are itchy. This is why the are often scratch marks around them.
Neuropsychology-there are 3 layers of the inner part of the brain. Kaitlyn has at least one lesion on each layer. The lesions are causing "roadblocks" for everything that enters her brain. This is way she may say "rose" instead of "daisy". She can get something close to what she is trying to say. We are also seeing signs of damage that was done to her brain during seizures from when she was a baby. Learning is going to be a lot harder than originally thought. We are focusing on basic math and reading. She has been enrolled into a local college reading program as recommended by her doctor. We hope that we can find a method of reading that Kaitlyn can relate to. More test are being done to determine if she has dyslexia.

Walk for NF in honor of Kaitlyn

We invite you to join us at Patriot Lake of Shelby Farms in Memphis, Tn on October 16, 2010 at 9am. You can donate or join our team on the link www.firstgiving.com/kaitlynbarnette. Adults $20, children 4-10 yrs old $12 if register online by October 1, 2010. Day of walk cost is $25. Kaitlyn has been fighting NF all of her life, so this is very important to us. We hope to see you there.

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.

Meet Kaitlyn

Kaitlyn is a 7 year old fighting neurofibromatosis type 1. She 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 first days, Kaitlyn was very fussy. It became clear that she was having bowel problems. She was taken to doctors and treated for stomach issues. She was then sent to genetics doctor because of a spot on her stomach. More and more spots started to appear as she got older. It was quickly suspected that she had NF. A DNA blood test confirmed that she indeed had neurofibromatosis. A bone scan was done and revealed a lesion on the left side of skull between her eye and ear. She then started getting MRIs done regularly. Each MRI showed more lesions. As of 2010 she has 5 lesions inside the brain, one outside of skull, and one in left hip. So far they are not causing extreme problems. The lesions in her brain are pushing on particular nerves causing uncontrolled emotions, difficulty understanding, memory problems, etc. In the toddler years she would wake up in the middle of night screaming in terror. By this time she had a ENT, eye specialist, neurologist, and genetics specialist in addition to her pediatrician. The neurologist determined that she was having night terrors after seizures. This meant she was having seizures daily. She was then diagnosed with Epilepsy. The team of doctors work together to come up with the best treatments for her. The genetics specialist started seeing the patterns of things in Kaitlyn compared to her other NF patients. The spots (if you have 5 over 1/2 inch big, you most likely have NF...Kaitlyn has hundreds), freckling under arm pits, hair on lower back, stomach issues, learning disabilities, and posture issues in shoulders. 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 learnign disabilities in children up to age 3. Now in school she has occupational therapy, physical therapy, speech therapy, and resource. She is only in the classroom with peers of the same age about 90 minutes a day. The members of her IEP team work together to get her the best education possible. She will always be behind in learning. She can learn, but it has to be done through repetition and a lot of extra time. She has to work harder then other kids of her age. As of 2010, she is about a year behind her peer in mental capabilities. She is a fighter and a trooper. Her entire life has been visiting doctors and therapist. She knows that her spots (Katy-bug spots) make her different then other people. Her spots are what make her special!