23rd update

This week I would like to bring a prayer concern to everyone’s attention concerning Samuel. Shortly after Samuel was born we noticed that he had very subtle ridges on his head. You couldn’t see them; you only knew they were there if you felt them. Over the last few months these ridges have been becoming more prominent. Now they are very visible, running down the middle of his head, the back, and from one ear to the other. We have wondered if this could be part of “his head appearing small eventually” that Dr. Hall mentioned after his MRI and ultrasound (or if it was something else we should be concerned about). When Dr. Hall saw the amount of dead tissue in his brain she felt that eventually the brain would not grow enough to cause the skull to expand properly causing his head to look small for his body.

Last week my Mom and Dad took Samuel in to see Dr. Sugarbaker. Dr. Sugarbaker has been extremely optimistic concerning Samuel and has seen things the other Doctors have not. She was one of his advocates during the ethics committee, and she looks past what the charts and statistics say. My mother expressed her concerns to Dr. Sugarbaker and so she looked him over at the appointment. She was very concerned by what she found. Samuel has no soft spot on his head, something he should have until he is at least 18 months old. That and the ridging together are prime indications of a fused skull. She has scheduled Samuel to have an MRI and a CT scan on the 12th of November to try to confirm her assessment. We will use the information from both tests to try to decide an appropriate plan of action. The risks for not doing the surgery are that if his brain were to continue to develop (something most of the Doctors think is not likely) then it could reach its max capacity inside his skull and cause one of two things. The brain could stop developing and he is then stunted at that place, or the brain could continue to expand and the consequences of that would be obvious. This is part of the reason for having the MRI done. We will be able to compare this new MRI to the old one and see if the brain has grown or expanded any. We will also be able to see how much room there’s left in the skull for growth. Based off of what the tests say we will have to decide if we believe Samuel needs the surgery or not.

The surgery is major and would consist of splitting open Samuel’s skull, breaking through the fused plates to allow the brain to continue to grow and expand. From what I understand Samuel would then have to wear either a helmet or a head brace for a year or so to protect his skull from being shifted or damaged. At this point we do not know if Samuel actually has a fused skull, but the Doctor is very concerned that he does. We would appreciate prayers of discernment for all concerning this issue. When we hear anything else we will let everyone know. Thank you, and may God bless.