Under Construction

Nicholas has had a lot of focus on his head his whole life. The reason is obvious, he has a condition that requires a little more maintenance than the average noggin. As his ventricles have been draining since the shunt was placed his second day of life, we have watched his head begin to take a concerning shape. While the size has reduced drastically, he has taken on a cone shape. 

The first time we discussed the shape with the neurosurgeon, it was determined that his back ventricles still had extra fluid and his brain was growing so there was nowhere for the fluid to go but push out against the back of the skull. This began the frustrating Easter hospital visit when the shunt was turned down drastically and Nicholas had a poor reaction. 

Nicholas's pediatrician and his therapists had all mentioned to us recently that they thought it was time to start considering helmet therapy. His therapists have mentioned that they believe that he is having trouble holding his head up in part due to the shape of his head since it is off balance. Certainly the size has a lot to do with it as well, but they feel that it doesn't help to have it be so misshapen. He is also having difficulty rolling over, though he's trying very hard, again due to the cone shape. 

Last week after a discussion with his neurosurgeon's office to get on the same page, it was decided that we would move forward with putting a helmet on Nicholas. The official term is cranial band therapy. We were preparing for a fight with our insurance and were pleasantly surprised to not find one and he is scheduled for his measurements on the 15th. 

We have been warned that there has been very little research done on putting helmets on hydrocephalus patients so the neurosurgeon's office is not sure that the helmet will be successful in reshaping Nicholas's head satisfactorily but we decided we would rather try and fail than not try at all and either always wonder if it would have helped or end up having to make him go through another surgery at some point in the future. That's not outside of the realm of possibility of course, but hopefully this can help us avoid it.