Our Life With Disabilities
When Annebelle was born, she was rushed to the hospital and diagnosed with Incontinentia Pigmenti, epilepsy and other developmental disabilities. We were quickly thrown into life as a special needs family. Annie started therapy at 6 weeks old and was set up with seven different specialists.
Annebelle’s Epilepsy Journey
Annebelle’s epilepsy journey has been a roller coaster. She was diagnosed with focal epilepsy in the NICU and the seizures were quickly under control with medication. When she was a baby we noticed that she was having “jackknife” movements. They started off subtle and quickly, but became more dramatic and clustered. She was having 50 spasms a day.
Infantile Spasms
Eventually, Annebelle was diagnosed with Infantile Spasms and was quickly put on another anti-epileptic medication. Annebelle tried and failed five medications along with the ketogenic diet. After a year of uncontrolled spasms we finally found a medication that worked and her spasms stopped. After a blissful two months of seizure freedom, I noticed that her focal seizures returned. She was placed on a new medication that failed, and then tried two more. We had a conversation with her neurologist and discussed her options after failing all medication options.
Epilepsy Surgery & Triplegic Cerebral Palsy
After a lot of thought, we decided to opt for an epilepsy surgery. Annebelle will have a Vagal Nerve stimulator implanted and we are hopeful it will help. Along with Epilepsy, Annebelle was also diagnosed with Triplegic Cerebral Palsy. Her legs and right arm have muscle weakness and spasticity making it difficult to develop her fine and gross motor skills. She’s currently going to physical, occupational and speech therapy once a week to help her develop these skills. She is also on a mission to learn to walk.
Life with disabilities
Life with disabilities has proven to be a challenge in many ways, but at the same time it's simple- it's our life. We live life like everyone else. I spend my days taking care of the house and looking after two crazy kids with a few differences from the typical family. Every morning we wake up and make breakfast, take Tanner to school, get dressed, and play. Annebele comes with me to run errands and go grocery shopping. We go to therapy and work on her motor skills and then come home to make dinner and settle down. Tanner plays with Annebelle and they (sometimes) share their toys. He is protective of his sister and does what he can to make her life easier.
Living with epilepsy
Living with epilepsy is the hand Annebelle was dealt. When seizures happen, I drop what I am doing to comfort her and make sure that she knows she is not alone. I document her seizures and keep track of how often they happen and if she is developing a new form of seizure. I started an instagram account, @abplusme to help raise awareness for childhood disabilities. I use this platform to share what our day-to-day life is like as a parent and a child with disabilities. I integrate all abilities into fashion.
