In Support of Lathaniel's Medical Journey

Hello family and friends! We're reaching out with an update about our son, Lathaniel, and his ongoing medical journey.

Our son Lathaniel was born 4 weeks early with several rare and complex medical conditions and spent 10 days in the NICU on oxygen, with a NG tube, 4-5 days with the blue light and 3 days on an EEG machine. He had MRIs and CTs of his head and brain done. He also had utrasounds of his heart, liver, and kidneys done. He kept desatting in his sleep and while trying to feed. He had a high bilirubin level. He was seen by several specialists including his pediatric Neurologist, pediatric Opthalmologist, an Audiologist, pediatric Cardiologist, pediatric Urologist, a Hepatologist, a Nephrologist, a Pulmonologist, a Hematologist, and dermatology.
His condition include, Atrial Septal Defect, Port Wine Stain, Sturge Weber Syndrome, Klippel–Trénaunay Syndrome, Hemihypertrophy, severe drug resistant epilepsy, he is also prone to spontaneous Subdural Hematomas, and has slight hydrocephalus because of this. He is also at high risk for glaucoma because his Sturge Weber Syndrome and Port Wine Stain and has left sided hemiparesis from his Sturge Weber Syndrome and seizures with stroke like seizures.
On December 1st 2022, just shy of two months old he was admitted to St Francis Hospital in Wichita. He spent 7 days at St Francis before he was transferred to Children's Mercy hospital in KC. He spent a total of 23 days in the hospital (15 of which he was on life support due to Covid and his seizures), while the Drs at Children's Mercy in Kansas City were also trying to figure out and understand what conditions he had. He had even more CTs, MRIs, and test done and saw an array of specialist there as well. Just shy of a year old he was admitted to St Francis hospital in Wichita after a scheduled sedated MRI showed that he had 2 Subdural Hematomas which was determined that they were caused from his medical conditions and with the shape of his skull and brain causing stress on the bridging vessels.
As he has grown and getting older more things have come up and he is severely delayed developmentally, mostly nonverbal, and Autistic. He will be 4 years old on October 5th and can only walk short distances with assistance and support from myself or his dad. It has been incredibly difficult to get him walking because his seizures are debilitating and cause him to lose muscle strength, along with the left side of his body being smaller than his right side. He has been in and out of the hospital multiple times for his medical conditions and his seizures.
He sees his pediatric orthopedic surgeon in Wichita for his leg length discrepancy. He also sees an Epileptologist at Children's Mercy Hospital in Kansas City for his seizures. He is on 4 seizure medicines,
All liquid meds,
Keppra 1200mg/day
Clobazam 50mg/day
Lacosamide 180mg/day
Phenytoin 75mg/day
And 150mg/day of Gabapentin for pain.
Even with all of these meds he still has an excessive amount of seizures.
Lathaniel continues to have anywhere from 2-30+ seizures a day. His seizure types include, tonic clonic seizures, tonic seizures, drop seizures, absence seizures, and Gelastic seizures. He will be having a Hemispherotomy done soon to hopefully help get his seizures stopped and help him to start thriving again. We're using this fundraiser to hopefully help with the financial burden of lost wages, travel expenses and meals for when Lathaniel has his Hemispherotomy done. Every little amount helps us tremendously, will help relieve stress, and help us focus on Lathaniel as he recovers from his surgery. With everything he has been through in his short life, he shows us every day just how strong his is. He is still so full of love, light, and joy. He truly is our little miracle boy.