Lukes journey

From when we first brought our youngest son home,we knew we were blessed,but we knew also that something wasn't quite right.There was nothing wrong,just something not right.You know that nagging feeling you get as a parent.Having had to battle for action with our doctor previously with the boys we were not shy about questioning him at every visit.We were told everything is fine,he's growing well and meeting his milestones we'll watch him,but there's nothing wrong.As he grew older we noticed that his head although it was getting larger as it should wasn't rounding out as it should,we did the rubbing during the first weeks of home life,and we changed his position often as we'd read to insure we weren't accidentally causing the shape some how.Some research into infant head shapes lead us to craniosynostosis.This is a condition affecting the skull,where the sutures fuse to early,making the skull not grow as the brain does.The result is abnormal skull and malformed head shape.
When correctly diagnosed if surgery is needed it can repair the malformation and allow normal brain growth without any neurological issues.Our son went undiagnosed until he was a year old.There are different areas that can fuse,and so different titles given,our little guy had saggital synostosis,the midline suture along the top of the head.He had a ridge at birth,which only got more prominent as he got older.Family didn't want to touch his head as most family love to kiss little ones on the head,people avoided his and most cousins questioned why he was like that.We had no answers at first.He also had a pretty severe hernia that needed repair,and underwent repair surgery at 3 months of age.Due to the hernia he was in pain often that he could barely move without screaming.I guess that could be part of why his skull issue was over looked by the doctor.We questioned at every visit though.We found it amazing that he had the exact same kind of hernia as his older brother,who was also a twin,and carried on the same side and was also the heavier twin.Pretty wierd huh? We didn't think about taking pictures of his head to see differences as we never saw changes,until we had surgery.
When we went to the twins 12 month appointment,we again questioned why the shape hadn't changed,and we agreed his head was growing,but it was growing in strange areas.His forehead was expanding as was the areas over his ears,and the back of his boat shaped head was becoming more pronounced also.The doc gave us one of those pat on the head type of ok,lets try an x-ray to shut up these parents. That x-ray lead to an MRI which of course lead to a neurosurgeon and surgery.We were very worried as the info we'd found to read up all talked about most children having this type of surgery before they were a year old.Our little guy was already a year,the neurosurgeon didn't think he had any neurological damage yet though.He did exhibit some behaviors we felt were maybe not so normal,but were informed they were nothing to worry about yet. He likes to rock back and forth in his high chair(slam himself back)he walks on his toes,and likes to lick windows and metal railings,also shopping carts,he also rocks back and forth when sitting on the couch,and when in a rocking chair he rocks so hard that it makes a slamming sound and moves backwards across the rug(we have a glider type rocker).I question more things these days due to our older twins who have lead poisoning and sensory issues.There are more posts about that on going journey elsewhere in the blog this is just for Luke,but wanted to mention why I question the docs so much!