Super Grayson – miracle who fought to live

Grayson was born with a host of complications- He has hydrocephalus which he has had 2 surgeries to try to control but we are still working on it. That means he has pockets in his brain that have more fluid than the average person which causes a large head and can put too much pressure on his brain and can be life threatening. He was also diagnosed with a rare hearing disorder called auditory neuropathy which causes his ears to create a static noise. He could need cochlear implants to help make things clear. Also may have significant speech problems, as things aren’t clear to him. He has always tested on the severe end of the scale. I feel this diagnosis can be just as life changing as the spina bifida! Because of the opening on his spine it caused something called a chiari malformation where basically the back of his brain has fallen back into his spinal column and causes a host of problems. For example chocking, gagging, and eating problems! I also think it caused him to have something called nystagmus where his eyes shift back and forth all the time and any change in direction sends his eyes spinning all over the place. He also has trouble with his arm use as they are stiff and has trouble opening his hands. His PT says he is severely hypotonic which means he is basically still very floppy and his core is extremely weak. He also has to be catheterized four times a day as he is unable to empty his bladder completely and it has constant spasms that can create kidney damage and overall bladder issues. This is something he will need to address all his life! He has to take laxatives as his bowels don’t function properly. Also has hip dysplasia which means his hip socket isn’t formed properly and causes one leg to sit shorter and pop in and out constantly. He had a spinal closure when he was 18 hours old and has had three  brain surgeries to help the hydrocephalus and on watch right now for another. I have lost track of the MRI scans he has had among so many other tests and procedures! But through it all he is THE HAPPIEST, SWEETEST, CUDDLIEST, AMAZING BABY EVER! Words can not describe the joy he brings to everyone around him! He lights up a room NO DOUBT!

A huge thank you to KTobin Video for these priceless images.