Helmet Head
We went back to the craniofacial clinic to follow up on Wesley's head shape and fused sutures. They still think he doesn't need surgery and don't think we need to follow up with them again unless something changes dramatically. I'm more at peace with this now but I still worry that we're counting on his brain damage not getting miraculously better for him to not need surgery. But I'm trusting that there will be other signs that tell us if things are getting worse and although it is ideal to do surgery before 1 year, there'd are plenty of kids that have had it done much later and have done fine. So we aren't going to subject Wes to major surgery unless things change dramatically and we are positive that surgery is necessary.
They did, however, recommend that we put Wes in a cranial band helmet to improve the shape of the back of his head. We're not sure if it will improve the ridge on his forehead or not, but it should help round out the back of his head and encourage him to look straight (and right) instead of left so much of the time. Unfotunately, insurance companies don't like paying for helmets. For that matter they make specific exclusions in many of their plans against paying for helmets. The crazy thing is I read a huge article published by our insurance company about how effective they are at correcting plagiocephaly (flattening of the head). Medicaid, however, will pay for a helmet so we're in the process of applying (but that is a whole different headache of a story). Wes is already on the high end of the age when helmets are most effective though so we're not going to wait on Medicaid (which could still be several months). So we're paying out of pocket in hopes that Medicaid will reembuse us but knowing this will help our son either way and that is most important.
So off to the orthotist we went to get Wes scanned for his helmet. The helmets apply pressure on the areas of the skull that don't need to grow and leaves space by the areas that do so when his head grows, it will grow into the open spaces and round out. The orthotist said that Wes is a more difficult case because he has a fused suture and brain damage making his amount of future head growth unknown. It could work very quickly or he could wear the helmet for a year and have very little results. We're just going to hope for the former.
The decision to use a helmet was initially an easy one as I am sure that I want to do absolutely anything that will help Wes. Since then, however, I'vebeen racked with anxieties about the whole thing. Besides the worries that it might not work, there are a million little worries even if it does work. He has to wear the helmet for 23 hours a day for a least several months. That means I can't kiss the top of his head like I do now and snuggle up next to his sweet face. A hunk of plastic will be in the way for all those sweet moments. I'm sure i'll get used to it but it's a big deal to lose that intimacy. I've been increadibly clingy with him lately realizing that all these precious cuddle moments will be very different in less than 2 weeks.
I'm also concerned that he will hate having the helmet on. He screeams most of the time when I put hats on him so I'm desperatly hoping he will tolerate the helmet better. It seems to be more about the transition of outting a hat on that makes him so mad, so hopefully once it's on, he won't mind so much. We can only hooe and pray because there's no going back at this point and I don't want to be torturing my son in an attempt to help him.
We will also have to deal with strangers who stare, make comments, etc. A friend of mine's son had a helmet for a little while and she was so calm about it when we went out places. I wanted to yell at people who were rudely staring at her son with a shocked look and he's not even my kid. I'm typically a very non confrontational person but I might lose it if people start looking at my son like he's a freak. My attempted solution to this problem is to put funny decals on his helmet but I can't decide which one to get. So... to help my indecision I thought I could let you all vote. Here are my top choices:
Comment with your favorites!!
They did, however, recommend that we put Wes in a cranial band helmet to improve the shape of the back of his head. We're not sure if it will improve the ridge on his forehead or not, but it should help round out the back of his head and encourage him to look straight (and right) instead of left so much of the time. Unfotunately, insurance companies don't like paying for helmets. For that matter they make specific exclusions in many of their plans against paying for helmets. The crazy thing is I read a huge article published by our insurance company about how effective they are at correcting plagiocephaly (flattening of the head). Medicaid, however, will pay for a helmet so we're in the process of applying (but that is a whole different headache of a story). Wes is already on the high end of the age when helmets are most effective though so we're not going to wait on Medicaid (which could still be several months). So we're paying out of pocket in hopes that Medicaid will reembuse us but knowing this will help our son either way and that is most important.
So off to the orthotist we went to get Wes scanned for his helmet. The helmets apply pressure on the areas of the skull that don't need to grow and leaves space by the areas that do so when his head grows, it will grow into the open spaces and round out. The orthotist said that Wes is a more difficult case because he has a fused suture and brain damage making his amount of future head growth unknown. It could work very quickly or he could wear the helmet for a year and have very little results. We're just going to hope for the former.
The decision to use a helmet was initially an easy one as I am sure that I want to do absolutely anything that will help Wes. Since then, however, I'vebeen racked with anxieties about the whole thing. Besides the worries that it might not work, there are a million little worries even if it does work. He has to wear the helmet for 23 hours a day for a least several months. That means I can't kiss the top of his head like I do now and snuggle up next to his sweet face. A hunk of plastic will be in the way for all those sweet moments. I'm sure i'll get used to it but it's a big deal to lose that intimacy. I've been increadibly clingy with him lately realizing that all these precious cuddle moments will be very different in less than 2 weeks.
I'm also concerned that he will hate having the helmet on. He screeams most of the time when I put hats on him so I'm desperatly hoping he will tolerate the helmet better. It seems to be more about the transition of outting a hat on that makes him so mad, so hopefully once it's on, he won't mind so much. We can only hooe and pray because there's no going back at this point and I don't want to be torturing my son in an attempt to help him.
We will also have to deal with strangers who stare, make comments, etc. A friend of mine's son had a helmet for a little while and she was so calm about it when we went out places. I wanted to yell at people who were rudely staring at her son with a shocked look and he's not even my kid. I'm typically a very non confrontational person but I might lose it if people start looking at my son like he's a freak. My attempted solution to this problem is to put funny decals on his helmet but I can't decide which one to get. So... to help my indecision I thought I could let you all vote. Here are my top choices:
I like the thinking cap and the stunts.
ReplyDeleteI like the thinking cap best, and the stunts one second best. Who cares if people stare...what an opportunity for you to show them the face of Christ! I hope you're all doing great!
ReplyDeleteHaha! I like "fixin my noggin" or "it's my thinking cap"
ReplyDelete