In other words, the helmet is no longer working to shape his head. They have taken Little Man's head as far as they can take them. While his "towering vertex" (medical term snagged from his file) is reduced, it still is very prominent as well as the back of his head still being very flat. Sigh. This means that surgery would be needed to get his head & therefore his brain to a more correct shape/form.
I remember after agreeing to the first surgery, both doctors did say that it would most likely be 2 surgeries but we were all hoping that after a year of helmet therapy a second surgery would not be needed. I was sooooo hopeful! The first surgery did wonders, his head looked like a Klingon's and was lumpy all over his temples- cute, eh? Also, his coronal sutures were nowhere to be found. It was an easy desicion the first time around. After the surgery he was able to really kick his legs around which was great- he could see his feet as he kicked. His head then became just plain funny shaped. I was really praying that the helmets would do the trick but after a little more than a year of wearing them they did not get the back of his head to round out or to stop the progression of the "towering vertex".
Geez, I feel like if we go foward with the surgery we are vain parents for wanting a "round" headed baby. I mean, he's doing well enough given his disability. But if he's doing well enough don't we owe it to him to be as normal looking as possible? Is that a horrible thought? I mean, kids are going to poke fun at him for enough things, am I weird or vain for wanting his head to be normal-er looking so kids (and adults) won't make comments? What if he were not doing as well as he is now? Would we still want the surgery? Does this make me vain or selfish?
It's still considered "corrective surgery" and therefore covered by our insurance. Does that make a difference? And what about the anecdotal evidence that surgery like this helps? Parents of cranio kids are reporting improvements in all areas after this type of surgery. I was one of them, Little Man moved his legs quicker & with more purpose once his brain was allowed to grow in that direction. This is not easy. I'm thankful for the ability to make rope & tie knots.
4 comments:
I'm promoting the proverbial 'gut response' again.
In general, improvements after cranial surgery make sense to me. Who would you have to explain your decision to (that matters)? If the reason you decide for the surgery is due to potential improvements - well, maybe some of the improvements will be looks.
I am disappointed the helmets were not more effective. The technique is based on very solid principles. Like other treatments, the application determines results, eh?
Hoping Little Man has a full head of hair! ;) Barbara
I don't think it's selfish of you at all. You only want the best for him.
Carla, I did not realize that Matthew had previous surgery on his skull. Don't know why I never got that part! You know Faith had a craniotomy when she was ten months old for craniosynostosis. All of her sutures were fused by six months old. I know that terrible surgery so well! ARG, it was a tough recovery and she had so much swelling and post surgery vomitting. Ick! I know it's a tough decision to make but even though it is aweful, I think it's worth it for him. Hugs friend!
:( I am so sorry that the helmets didn't work out.
And for the record, I don't think you should feel at all guilty about prceeding with the surgery. I think you have very valid reasons for getting it done.
Take care!
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