Currently there is no treatment for EJ and we strive to keep him isolated from infection. This is so hard to do with a busy four year old at home! He does get sick and when he runs a fever we must take him to the hospital for IV antibiotics. Right now he averages one infection a month and I am thankful that all have been treated successfully.
EJ also has hydrocephalus due to brain matter decrease. We were also told he had had a stroke. The cause of this is unknown but we speculate it is due to the severe malnutrition he suffered in the fall. Unable to absorb any nutrients from his food, EJ didn't gain weight for over 6 months and he was starving. His brain suffered during this time and subsequently caused the matter loss.
Pancreatic insufficiency is another issue that we have faced. In the fall it was discovered that EJ's pancreas was not functioning. Because of this he produced no enzymes to breakdown his food. He couldn't absorb any nutrients due to this. He became extremely anemic and his albumin dropped to 1.2. He was in a coma like state and needed nutrients.
Miraculously, EJ recovered from his pancreatic insufficiency. Since then, he has been gaining weight and his anemia has resolved. His albumin is now normal and he is off all enzymes!! Praise the Lord! Now with proper nutrition, his brain is growing and he is finally hitting all of his milestones! What a miracle!
He has been through so much and we thank each and every one of you for lifting him in prayer. He still has a long road ahead but he has come so far!
