The story of Luke

Hi my name is Ghannette I have a son named Luke. This story is about Luke. Luke is not quite one yet. When Luke was born via c-section he had zero complications besides having a smaller chin which made it hard for him to latch. At 6 weeks old he got a flu bug and was hospitalized. We went in for the check up after getting out of the hospital to find out that his anterior fontanelle (soft spot) had closed. We was the. Referred to a neurologist. The neurologist did a CT scan in office and found that he had dysgenesis of the corpus callosum which means that the structure that communicates between the left and right sides of the brain was only half there. He also had fluid on his ventricle and hemifacial microsomia. She recommended us to get an MRI. After two months he is now 4 month we do a sedative MRI. The result come back and it’s the same except at some point he had a brain bleed they wasn’t sure if it was in utero or while being born, we get referred to a genetic doctor. We do a blood test and that come back normal. They have us do a cheek swab both parents and Luke. The first part comes back normal. At this point Luke has been slow to gain weight he’s developmentally behind. We are getting OT and special education. They diagnose him with failure to thrive. We finally after months get the results of his gene test, it come back with a gene Mutation called TRIO. It didn’t come from either parents was just a fluke mutation. There isn’t much on this gene just a lot that could potentially be wrong. By this time we have been thru five pediatricians. We finally find a doctor that can handle his case. She recommended us to get an Echo because the gene could cause problems with his heart. He gets diagnosed with a secundum ASD. We see a pediatric cardiologist and he wants to watch it until it needs fixed. All this time we are still doing OT we then add on speech because we passed the 6 month mark and Luke is having trouble eating he has a hard time chewing and not choking. He also struggles to balance and sit up. It’s finally 8 months old and he’s sitting up but falls a lot. They are noticing that one side of his body is very tight and the other side is floppy. His neurologist diagnosed his with cerebral palsy. Luke’s not yet 1 years old but he is a strong little boy who has the biggest smile.