Helmet Fitting and the first few nights home...

Well we're surviving and dare I say it, it's not nearly as bad as I anticipated. When I said Benjamin was a warrior that was nothing at the time!!

Our first night home, while I was scared, was the easiest. He took his medication every four hours on the clock and was still medicated from the hospital. He slept through the night (his usual self). Wednesday was a little harder, I tried to wean him off the medication so he did have moments of misery before I gave in or he fell asleep. It really was easy. He wanted to sleep more anyways so I lucked out. The biggest issue is just monitoring his head for any problems and keeping him safe from his big brother, lol. Already, the first full day home he was smiling, cooing, and giggling!! He had a few rare smiles before but this is full fledged happy baby! He also rolled over before but now he is attempting to move in any real direction. It was amazing. People in my support group had told us about the changes after surgery but to really see them and to see it happen nearly right away was incredible. My fussy, pukey, sad baby was pretty much gone.

The Metopic sutra is not even visible in the adult skull!
The whole in the skull is what Benjamin was missing and what the surgeon cut open.

Thursday, we went to Hanger Clinic to meet Brian, Benjamin's orthotist. He was wonderful, he explained what he did, how he will help Benjamin, and the purpose of a helmet. Again he emphasized this is not for cosmetic purposes it will not smooth his head but it will allow the sutra to stay open a little longer and the brain to expand and grow properly. He showed me two different skulls, one of a baby under one years of age and one of an adult skull. The metopic sutra is the only sutra that completely closes and is not visible in the adult skull. It also is the first one to close (though none of them should close before 1 year of age).  He also told me that the skull will continue to close even though the neurosurgeon took out 1 cm of bone. Brian explained the infant skull is like play dough in the jar. So long as it stays in it will be soft and playable which is what the helmet can help with. As it ages and comes out of the jar it gets harder and harder until you can't do anything with it.

High Tech Equipment at Hanger Clinic

So the fitting for the helmet began after my rapid fire Q & A. Benjamin first had to wear a stocking on his head and then a black cape. I held him on my lap as far away from me as I could while I too was slightly under the cape. This reminded me of being on a green screen at a movie set. He then uses a scanner to send images of Benjamin's head to the computer. That was pretty much it. It was really impressive to see the computer immediately generate a 3D image of Benjamin's skull and how painfully obvious that even after surgery it wasn't correct. This was my first view of what his skull looked like since we never did have a X-Ray, MRI, or CT Scan! After that, we sat and waited a bit (I nursed) to make sure the helmet company accepted it and we were done! It was really that easy.

Benjamin will wear the helmet for not less than one month but no more than nine months. His Orthotist anticipated it would be three to four months unless after the first month he shows significant improvement. If things didn't move as they should it would be longer but could not go longer than his first birthday as the brain would stop growing then and the skull would completely fuse. He would probably only have two helmets that he'd wear day and night. The helmet will be clear but I'm allowed to decorate or paint it anyway I want. To help prepare for the helmet, the orthotist highly recommend from Thursday to Tuesday keep putting hats on Benjamin so he gets used to having something on his head. I didn't get any pictures because I went to the appointment by myself but his next scan I will have someone with me!

Benjamin with his pirate hat from the Cranio Angel Network (CAN)

When I got home and checked the mail, Benjamin received his cranio hat from the Cranio Angel Network. It couldn't have been better timing! I immediately put it on him and he's now wearing it 24/7. The CAN makes pirate hats for boys and headbands for girls who have craniosynostosis. With the pirate hat for Benjamin she included a personalized note of support and talks about how her daughter was diagnosed in 2009. To keep busy (much like me and my blog) she began using her talents and sewed. Eventually to raise awareness she started CAN to give hats and headbands to children all over the world. Even the CAN logo helps to raise awareness, the best way to look at a child’s head suspected of having Craniosynostosis is to get a Bird’s Eye View. Each type of Craniosynostosis has a distinct head-shape. In their logo, they have depicted three of the most common types of Cranio: Coronal, Sagittal and Metopic.

c - Coronal (right)

a - Sagittal

n - Metopic Other less common types of Cranio not depicted in our logo are: Bi-coronal, Lambdoid, Frontosphenoidal, and multiple closed sutures.

Other than that appointment, the rest of the week has been fortunately uneventful. Benjamin has amazed me more and more each day. Aside from some tylenol at bed time when he seems the most cranky he hasn't really needed any! The biggest thing is watching his wound, stitches, and behavior from now until the helmet arrives on Tuesday.  No baths yet, which drives me crazy as I feel he needs one but one week will arrive soon enough.

Getting ready for the night!

It certainly scares me how extremely quick this has been going. In less than one month we met with the pediatrician, got a diagnosis, met with the neurosurgeon, arranged for surgery, had surgery, met with the orthotist, and now awaiting the helmet. My support group I belong to seems to have much more time to digest this than I.... certainly scares me but there is no turning back now!