When Vera was born she didn’t cry right away. She peacefully looked around until the nurses cleaned her up, then she wailed. We immediately saw the portwine stain across the right side of her face. We thought it was bruising from the birth. Doctors came in, they took her for a few tests. Her right eye was so large & hazy, it was blue. Five days after her birth she was diagnosed with Sturge Weber Syndrome. Having the portwine stain birthmark & the glaucoma confirmed it. 2 weeks later we took her for an MRI which confirmed the brain damage: motor delays, left-side hemiparesis (muscle weakness), risk of epilepsy, no left-side peripheral vision in either eye & cerebral palsy. At 3 months old she started having hundreds of seizures a day, tonic seizures, confirming her epilepsy. At 4 months old she had her first eye surgery for the glaucoma. At 6 months old she was diagnosed with infantile spasms. At 11 months old she learned to sit up!! At 14 months old she started having focal impaired seizures. She was unresponsive for 40 minutes. At 16 months old she started standing up on her own!!! At 18 months old she blew our minds & took her first steps!!!! In September, she will have another eye surgery.You get the point. Sturge Weber Syndrome is an unpredictable, frustrating beast of a condition. It is chronic, there is no cure. But we can & do treat the symptoms. We have laser treatments for the portwine stain to have it removed every 3-4 weeks (part of it is over her right eye & can close the eye shut if we don’t remove it). We see a glaucoma specialist every 3 months with eye exams under anesthesia every 6 months, and a vision specialist every 4-6 months. We see an epileptologist / neurologist every 3 months & schedule routine EEGs as needed. We have had 5 hospitalizations so far, most lasting 6 nights each time. We have physical & occupational therapy 4x a week (virtually since March) & vision therapy once a month. She’ll be evaluated for speech therapy this month. Yep it is a lot & yep we both work full-time. We figure it out just like any parent would!People tell us all the time that we’re so strong but honestly, we don’t have a choice. Strong is what we have to be, and most of the time we’re just faking it until we get to the next day. It really helps to see how far Vera has come and all the strides she is making. She is so brave and she’s the strong one!
