It has been more than two weeks since Ben's surgery, so now it is time to start helmet therapy. My mom, all three boys and I went to Dallas for a Spring Break trip, with the main objective of getting Ben's helmet. We managed to get in a little bit of shopping too!We picked up Ben's helmet yesterday, which was a much more complicated process than I had anticipated. The helmet was made just for Ben, based on the measurements they took when his head was scanned two weeks ago. They put the helmet on him and then made various adjustments to make sure it fits properly. Getting the right fit is a long trial and error process-our appointment lasted almost two hours.
Ben's helmet is clear so that we can keep an eye on his incisions, which are healing wonderfully. I am glad it is clear because we can still see all of his pretty red hair!
Ben will be "breaking in" his helmet over the next five days. Today he is supposed to wear it for one hour followed by a one-hour break, then repeat. The time he wears it will increase each day until he is wearing it 23-hours per day. He will have his first nap in his helmet on Sunday, and sleep in it all night Monday night.
So far, it has not bothered Ben at all, except for when I pick him up- he shrieks just for a second. I think it might pinch his little neck. He has been very happy in it, and we had our first helmet photo session. I think he has to be the cutest kid in a helmet ever! I think it will be harder for me to adjust to the helmet than for him.
Ben and I are flying back to Dallas on Tuesday for a helmet adjustment and an appointment with Dr. Genecov. It will be our first flying-solo adventure. I am a bit nervous about getting through security alone, but we will get the hang of it after a time or two. After that, we will have a two-week break until we have to go back.
On a side-note: I read an article detailing the procedure similar to Ben's. Click here to read it. There were a few differences, but it a good, detailed description for those of you who are interested.
I am so happy to read your story here -- I was following your decision-making progress on Cranio Kids (I'm CalinaLily), and I wish I could have been more communicative to help you through the hardest bits. The last 6 weeks have been personally very hard on me, dealing with some medical issues of my own, but I'm glad to have found you all the way "on the other side" and still happy with your decision to go the endo route for Ben's procedure. I'm also so pleased to hear that your first week of therapy is going well. That was the hardest part for us! (Especially sleeping. Not my daughter's forte, to say the least...)
ReplyDeleteMy Calina will be done with helmet therapy in another 2 weeks, and (naturally) we're so looking forward to that... but I can totally relate to being "glad" about having the helmet there as extra protection! She just started walking, and has banged her head no less than a dozen times in ways I've thanked goodness that bit of plastic was on her noggin! :)
And as far as the neck-pinching, I found that the little bottom curl of her helmet ended up a useful tool... A way to hold on to her head/back of her neck without her noticing!
As if we need more reasons to be proud of our kids, he will show you again and again that the helmet doesn't hold him back from doing all the things he was made to do, and as every milestone passes, you'll be so so happy to see that he's growing up just like he should be. I know we were. :-D
Hey Maggie! I am so glad that Ben is adjusting to his new helmet! I will be thinking of you as make your first solo trip to Dallas. I am sure it will get easier each time. I just found out that someone I "know" through our adoption agency is adopting a little girl from Ethiopia with craniosynostosis. They don't know a lot yet since the technology in Ethiopia isn't great and probably won't know much until they get her to the States and have a doctor look at her. But would it be okay if I passed along your blog and email to her in case she wants to reach out to someone going through it?
ReplyDeleteKeeping your family in my thoughts!!!
Thanks, Emily Buster