Run In Honor of Star Naomi - Lilac
If you would like to run in honor of Star Naomi, you will select her team when registering and your team neck gaiter color is LILAC. Here's Naomi's story.
Naomi recently had hip surgery which is really one of those long term effects of having a brain tumor. The tumor that Naomi had was on the right side, which caused damage to her left side. Cerebral palsy, which in Naomi's case is hemiplegia or partial paralysis on one half of the body, was added to her diagnosis list when she was still very young. Naomi's entire left side is affected, including her vision. This substantial weakness on the left side hindered her ability to walk and eventually resulted in the dislocation of the left hip.
We'd been dealing with the possibility of surgery for nearly a year and finally had to do it last August. The surgery recovery was a bear. Naomi was laid up in a hospital bed in our family room for a full month. She was in a partial body cast and remained on her back with one or both ends elevated at all times. She was not a happy camper, lost a lot of weight as well as some verbal communication skills.
In December, Naomi had a surveillance MRI - which was stable/clear/NED!!! During our Neuro-Oncology clinic appointment, I shared my concerns about Naomi's loss of verbal output. The neurologist told us that there is a phenomenon associating this with nocturnal seizures. So, Naomi just completed a 24-hour ambulatory EEG to monitor brain activity throughout the day and night. We won't have those results for another week.
Naomi continues to recover from the hip surgery as it has also affected her ability to participate in school work. It has been a very rough year for her academically. If she were in public school, I'd say she would have to be held back a year. Since we homeschool, we'll just keep on going at her pace. While it has been agonizingly slow, mostly for me I think, Naomi's progress continues on a daily basis. For that, I am so very grateful.
Naomi still loves music and lights the most. She tolerates scribbling, loves to be in a classroom or with a group of friends, and is becoming somewhat independent at home.
For those interested in Naomi’s progress, follow us on Facebook at Naomi's Novel Neurons.
