Cure NF for Kaitlyn

Thursday, May 12, 2011

Kaitlyn doesn't want to share NF with Sister

A few weeks ago I noticed odd spots on Kaitlyn's sister Kirsten. They look like dirt at first, but they do not come off. Her spots are located behind her ears, and are only seen when her hair is pulled back. I contacted Kaitlyn's genetic specialist, and they got us in as soon as possible. Kirsten has never been sick or had any problems so this was new to her...therefore she was very nervous. The doctor ordered bloodwork that came back saying her NF marker in the gene is "altered". This is so rare that the lab is actually paying for additional testing on Kirsten and Kaitlyn in addition to tests on the girl's father and myself. Basically, to have NF the chromosome is either missing or mutated to where the gene isn't working properly. With "altered", it is still working. We just do not know if there is damage to the gene that could cause problems or not. This type of case has only been documented twice, so they are doing research on our blood to figure out what will happen next. Kaitlyn doesn't want to share NF with sister because that is "what makes her special". We are in the works to explain that NF is so big that God needs us all to help spread the awareness, and that she is special because she's KAITLYN.

Sunday, March 20, 2011

Latest MRI and EEG updates

For the past few months Kaitlyn has been asking..."when can I go in the machine again?". She's talking about the MRI machine. Finally the day came. She had an EEG in the morning and MRI in the afternoon. She was so excited! Our first stop was at the EEG check in. We were quickly moved into a room where Kaitlyn got to lay in a bed and relax as she watched tv and had her hair done with special ribbons. The tech was awesome! Kaitlyn even feel asleep so they got a great test reading. The out come was normal, but have not confirmed that with Dr. Richie yet. This was being done to check for damage from siezures when she was a baby. We got checked in for the MRI and was ready to go. The radiologist on duty said it would be a better reading for NF if we did contast. Kaitlyn was not prepared for an IV. That was not something she was warned about, but being the little hero Kaitlyn is...she handled it like a big girl (ok...like an adult). The coordinator talked her through everything and even taught her how to put an IV into a stuffed monkey. We had a LONG wait for the new doctor's orders to come, so we watched a movie...ok TWO movies. When the time came to get into the machine, she was ready. She climbed right in (with the biggest smile) and didn't move a muscle for 40 minutes. She did wonderful! The results of the MRI came back saying that the 4 lesions inside her brain remained the same, but the one in the back of her head between her brain and her skull had grown a few centameters. Apparently it's like 1 1\2 in x 1\2. We were not thrilled with this, but if any of the lesions were to grow...that one is the safest. So we feel very lucky and greatful of the outcome. We thank everyone who is on our prayer team. We couldn't have gotten through without you.

Monday, January 17, 2011

Prayers for Aidan

The NF walk last October was one of the most amazing experiences of our lives. One of the highlights was meeting others fighting NF. The picture to the right showing the top fundraisers of the walk, has a young boy in it. This little boy is Aidan. The doctors have discovered that in addition to the lesion on his brain stem, he also has lesions on both optic nerves. This means there is a chance of him loosing his sight or worse. The lesions can not be removed, so St Jude is using chemo to fight the NF. We are asking for prayers for Aidan. Life with NF is hard enough. I can't imagine adding severe complications to it. This could one day be Kaitlyn, and I know we will need as much support and prayers possible to help us through that chapter of life. So we ask for your help with prayers for little Aidan. Prayers can be so strong from friends and loved ones, but image adding prayers from people who you have never met. A person that takes time to pray for a stranger has a pretty big and strong heart. So please take a moment to pray for Little Aidan and his family to have strength to get through this hard chapter of life.

Saturday, September 25, 2010

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.

Thursday, September 9, 2010

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.

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!

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!