Royce Strong

About this campaign

"Sometimes you have to loose the small battles to win the War"

The journey will be long and hard but we know that we will get thru this. There are many additional medical treatments/therapies that are NOT covered by our health insurance and is quite expensive, and we will like to seek, such as chiropractic care, cold laser therapies, possibly cannabis oil, homeopathy, Oxygen therapy, and many more. We want to make sure we are doing everything we can to help Royce meet all his milestones at his pace. Help purchase a Tshirt, ty :)

:) Sorry its a long story and sorry if there is typo's or if any sentences don't make sense.
My son Royce was born on 9/30/19, full term no medical pregnancy complications. Biggest joy ever to see your child for the first time. I have 3 girls, and now i finally got my lil boy. After he was born, he passed all his newborn screening by the delivery nurse & the pediatrician, oxygen/heart rate/pulse, etc was good. We got the ok to be transferred to the postpartum floor. It all started while we were waiting to be transferred from the labor room to postpartum room, there was moments I held him, where he held his breath and got super tense, and then finally he breathe, to me I thought he was gassy, or trying to poop, or maybe stretching,nothing really crossed my mind. Finally we got transfer to the postpartum room/floor, and he continued to have moments holding his breath, and tensing up, kinda spitting his saliva, plus his face color was now changing I'll pat his back, until he breathed again, me & my husband got worried, we asked the nurse, and she said maybe he's trying to cough things out of his system, we said oh ok yeah maybe so. He had another moment, holding his breathe/etc, and his lip color / nose was turning blue, that's when we called the nurse again to check on Royce, they took him down to the nursery and within 5 minutes we heard on the intercom calling for a "respiratory stat" code to nursery. Royce was rushed down to NICU right away, and the DR advise us that Royce was showing symptoms of having seizures. We were both in shock, like what, how, why. I'm like, he wasn't shaking, or he didn't have foam in his mouth, it wasn't the typical seizure I've seen/known, that's when we learned that there are so many different kinds of seizures, in pediatric and adults. From that moment on, Royce had so many test performed to check to see what was causing his seizures, it was blood drawn after blood drawn, to spinal tap, to having needles inserted onto his head to monitor his brain activity (eeg), and he was heavily sedated & put on seizure meds to stop it gradually. Most terrifying time ever in my life. Every day we came to stay at Royce's bedside. Royce then went thru a MRI of his brain, and the Dr's also out that Royce had Cerebral venous sinus thrombosis (CVST), blood clot in some veins in his brain. The DR immediately started treating him Lovenox (blood thinner medication) right away. There is no cause yet as of why Royce has seizures, his neurologist believes the clot and seizures are not related. Royce also did many genetics testings to rule our any gene mutations, which his test came back all normal as well. Royce was discharge home on 10/21/19, and currently taking 3 seizure medications to help control it. Unfortunately, seizures are very hard to controlled. Royce continue to have break thru seizures at home, our journey to the ER became normal, and ambulance rides and calls. Royce was admitted multiple times in the hospital for his seizures since he came home from the NICU. Any viral infection/cough/cold can also trigger a seizures or many seizures too. So we are super cautious and we try our best to keep Royce safe, esp during this COVID pandemic. Royce is 8 months today, he is going thru physical therapy and soon will start some early intervention programs to help him meet some of his milestones. Royce cannot sit on his own yet, or hold up his head, he has some kind vision impairment that we are still trying to figure out with his Ophthalmologist. The journey will be long and hard but we know that we will get thru this. #Roycestrong