We finally heard back from the dr yesterday. (Yes! Long wait!)
When we took Roman to the doctor he said there was a really good chance the front sutra was fussed too early. But the only way to really tell is by getting a CT scan. They said they would try one that day. But if Roman wouldn't hold still we would have to come back another time when they could sedate him. I didn't want to wait. I wanted answered that day so I was determined we could get him to hold still.
It was a nightmare at first. They strapped his head, arms, body, legs, all down to the bed. He was screaming and thrashing his head back and forth. (Wasn't looking good.) (I think the fact that he had had shots the day before made it worse) The nurse gave us some music and light toys to try and distract and calm him down. But with the nurse, Tate, & me in his face showing him different toys I think it just overwhelmed him more. I had the nurse and Tate move so Roman couldn't see them. I held and squeezed his hand while singing, 'jingle bells,' 'child of god,' 'twinkle star.' Though still whimpering he listened and held still enough for them to get the scan. Whew!!
The dr went over the scan right after, but didn't have the final one in. He could tell from that scan that actually the BACK sutra was completely fussed, not the front like everyone thought. Which is confusing since the way his head is and growing is consistent with it being fused up front. So the dr needed the rest of the results to really make a diagnosis.
He did tell us that we had to get Roman in to an eye dr at primary children's to check and see if his "weird" skull is putting any pressure on his eyes and causing damage. Romans eyes are so sensitive to light. He sobs and tells me the hurt when the curtains in his room are open during the day. He is also a HORRIBLE sleeper with is another symptom because of pressure on their brains makes it hard to sleep, especially at night. Not to mention the worse, it could lower his IQ and he could slow down developmentally.
So far the dr doesn't believe there is any pressure on his brain. But next week we'll see what the eye dr says.
When we talked to the dr yesterday he confirmed the back sutra is completely fused and the front sutra is partially. It Roman was between 6-12 months old they would do the surgery immediately, and things would be fixed and we would move on. The problem is that he is 2. And since we didn't catch it earlier... ( no doctor that looked at the shape of his head ever told me it was weird. So I just assumed it would pop back round like it does with little babies and flat heads.) Once kids reach the age 2-3 some of the sutras are supposed to naturally fuse to create a hard head. So even if Roman was born with it fused together, we may not be able to go in there and do surgery to cut it open because never again in his life will it naturally fuse together. Leaving him with a giant soft spot his whole life. Which would be a whole other problem.
So now I feel that it's all my fault I didn't keep pushing about his head when he was younger. It's just really scary. Especially if it could affect him mentally. I don't wasn't him to be made fun of and feel bad about himself his whole life cause I messed it up for him.
We'll meet with the dr again after our eye appointment to see what the final decision will be. Either way it scares me for him.
8:46 p.m. - 2014-01-18
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