From the day Kate was born, she made a funny little noise. In passing at the grocery store, people heard this noise and thought she was laughing. However, if they could see her face, it was obvious she wasn’t happy. So, we ran with the diagnosis of colic we had been given. Kate never slept a single night, or through a nap. She made this sound over 100 times a day, occasionally having uncontrollable cluster episodes where she couldn’t stop for many hours on end.
After many trips to the doctor for urinary tract infections, at 11 months, she was diagnosed with Central Precocious Puberty. They performed an MRI, and found a 1 inch tumor on her Hypothalamus. The tumor didn’t take on dye in the MRI, leading them to the diagnosis of a Hypothalamic Hamartoma (HH). We later found out the noises she was making were Gelastic (Laughing) and Dacrystic (Crying) seizures. These types of seizures are untreatable, so the only option was surgery.
With the help of Mayo Clinic and her doctors at Sanford, we found our way to Phoenix Children’s Hospital. Barrow’s Neurological Institute has a Hypothalamic Hamartoma Program and Phoenix Children’s Hospital, where she had a craniotomy, on April 12th, 2016. We were prepared for her to need a second surgery, but Dr. Ruth Bristol, Kate’s Neurosurgeon, pulled us aside after surgery and told us she got it all! We spent 48 days in Arizona, 28 of them in the hospital. Kate has been seizure free since surgery. As a result, she has permanent Diabetes Insipidus but none of the other side effects we prepared for!!
She just turned 2 and is on a great path of recovery, feeling better every day. She is getting her “sparkle” back, is starting to develop new skills, and experiencing full nights of sleep! She is an incredible gift from god and we would do it all over again to get her a chance at a quality of life.