Jaylen had his 12th surgery on Wednesday. By the time I got to him in recovery he was smiling and playing peek a boo with Katie. His stamina is remarkable and clearly learnt from watching his mother.
I've had a few well wishers asking me if Jaylen is "better" lately. The condition Jaylen has does not have a cure- Gastroscisis meant he was born with part of his intestines outside his body. As his case was so extreme surgeons could not simply put everything back in, sew him up, and send him on his way. He cannot eat orally, has milk feeds hooked up through a port that runs directly into his stomach, and has 2 full days hooked up to a machine that delivers him the nutrition he needs. That's not to say he is not doing better- he is. Standing, growing and almost talking his development has improved amazingly since he has been home. But the reality for Jaylen ( and Katie) is that his normal most likely will never be the same as other children's. For me as a friend that is one of the hardest parts of this story. For me as a photographer that is one of the most interesting parts of the story and the reason I want to tell it as beautifully as I can.