Rhyan and her twin sister Rhyce were born a few weeks early. They both went to the NICU for breathing and eating issues. Rhyan was able to go home after 3 days; Rhyce had more challenges and stayed in the hospital for 7 days.
Rhyan was a fussy baby, we nicknamed her Cryin’ Rhyan. At her 4-month check-up, I asked our pediatrician about a “birthmark” on her belly. The doctor said she thought it was just a birthmark. Rhyan’s head measurements had increased more than normal, so she said she would monitor it. I noticed that her body to head proportions just didn’t seem right. I took a picture of the birthmark and sent it to our friend, Dr. Stephen Maberry. After our visit with Dr. Maberry, he thought she might have Neurofibromatosis (NF). He put us at ease by stating he has NF patients that are 80 years old and have lived very normal lives. He asked about her head size; I mentioned we were monitoring the increased growth. He consulted with our pediatrician and in two weeks, Rhyan’s head had increased 90% since her 4-month check-up. We scheduled our first of many sedated MRIs. Dr. Roberts, a neurosurgeon at Cook Children’s diagnosed her with hydrocephalus; a buildup of fluid in the brain. At 9 months old she had her first brain surgery to install a shunt. By age 3, Rhyan had freckling under her arms, diaper area and had a few fibromas (benign tumors). She was officially diagnosed with NF.
Rhyan has optical gliomas, tumors on the optic nerves, which are monitored with MRIs every year. Rhyan sees multiple doctors at Cook Children’s Medical Center. She has an oncologist to monitor the gliomas, a nephrologist to monitor her kidneys, and a cardiologist to follow her slight heart murmur. I am not sure there is not a department at Cook’s that she doesn’t see!
In 2011, Rhyan was diagnosed with a Chiari malformation, a condition where brain tissue extends into the spinal canal and syrinx, fluid filled cysts, in her spine. In August 2012, Rhyan had Chiari decompression surgery and she faced it bravely and like a champ! Dr. Roberts at Cook Children’s has performed both brain surgeries; we are very blessed to have him on our team.
Rhyan was diagnosed with ADD and possible dyslexia. Although she is not extremely hyper, she goes a little haywire without medication and her speech is difficult to understand.
From the beginning, she has had to have speech and occupational therapy. Progress wasn’t being made with her speech, so we asked for testing of her soft palate. Dr. Hubli determined her soft palate was not meeting the back of her throat. In 2014, Rhyan had soft palate reconstruction. She still struggles with speech and it has affected her ability to make and connect with friends at school. Last year, we found out a little boy was calling her names, hit her and stomped on her things.
With every health hurdle we overcome, it seems we are presented with a new problem we never imagined. NF is a fight Rhyan must battle every day; some days are more heartbreaking than others.