Baby Jameson come home

Hi my name is Jameson Johnston and I’ve never got to go home. I currently reside at Seattle children's hospital and I was born at 25 weeks and 4 days old! My mommy got very sick and was in the ICU pregnant with me for over a month. I had other plans, I was emergency c-sectioned weighing just over a pound. I have always been in the NICU and ICU due to being in critical condition for the last 14 months. I am in the ICU due to the following:

18 surgeries, grade 4 bilateral brain bleed causing severe Cerebral Palsy and IVH hydrocephalus with a VA shunt, severe bronchial pulmonary dysplasia (BPD), I’ve been on a vent my entire life and I now have a tracheostomy, 5 episodes of necrotizing endo colitis with sepsis and this eats away intestines as I only have 20% left, G tube, retina reattachment surgery in Oregon.

I have heard what a miracle baby I am and warrior. Making it through life with the deck stacked against me. How inspirational I’ve been through all these life threatening events. My muscles are very sore and painful due to uncontrollable spastic cerebral palsy and severe dystonia. My legs tense up and my toes point for hours and my hands ball up and tense you would break my fingers trying to open them. I cannot eat and my stomach is grossly distended. I am on only a TPN through an I.V. And doctors cannot figure out how to fix it. My mom and dad along with the hospital have tried to reach to others second opinions. I feel stuck in limbo at Seattle Children’s Hospital. Please help my family and I during this difficult time to make it through and keep fighting the good fight in hopes I may one day get to go home. My wish is to go to CHOP hospital in Philly. Thank you for listening to some of my story. Hope all are blessed and love too all!