She's great! And so much fun!!! She is now 16 months old!
I just thought I'd post a little update on the Bean. It's been nearly a year since I've posted, and this will likely be my last update, though I'll still receive any comments or emails from anyone who wants to contact me! I don't know that many people even find this blog, but I am thankful that a small handful have, and I hope it has helped whoever has found their way here!
I occasionally see pictures of Bean on our screen saver from her surgery. Today, I was thinking of the immense amount of pain that she had to go through, and it still makes me cry to think about. Of course to her, she has no memory of it, thankfully!
I did meet a couple with two kids from my son's elementary school. They told me something that I thought might be of some interest to those who find their way here!
I was sitting by them in a little assembly, and their son who was just about 9 months old was wearing a helmet. I'm sure those of you researching Craniosynostosis have come across the different options you have available and might have even discussed it with the Neurosurgeon. Sometimes I think, "Maybe we should have gone the lesser invasive route, because maybe it wouldn't have been so painful. Yes, she would have to wear the helmet, but wouldn't that be worth her not having to go through all that pain?"
I asked the couple about their son and mentioned my daughter had the same thing. That instantly got them talking. Their first daughter had sagittal craniosynostosis, and she had the same surgery as Bean. It was early enough to not have to remove the whole skull and reshape it, but it's still a really, really hard thing to have your child go through. Well, obviously, their son had the lesser invasive surgery (endoscopic), where they make the smaller incisions, and do less work, and then he had to wear a helmet for a year. Their son was on his second helmet. **I did read about this though--that your chances of having another child with sagittal craniosynostosis do increase after already having one with it. So it was with this couple.
I asked them, "OK, now that you've done both surgeries, if you had to do it again, which surgery would you choose?" They both completely had the answer ready. They said they would do the CVR surgery that their daughter had--the same one as Bean. They said that the pain and swelling for their son was the same. That it wasn't easier at all for him. And now he has to wear a helmet for a year or longer. They were completely sure that they would do the same one as Bean and their daughter. That made me feel a lot better. And also maybe more prepared for any future children we might have. Oh, how I hope we won't have to go through that again, but I know the Lord will prepare us and bless us, as He did with Bean.
To those of you with children having the surgery, of course I'd totally suggest going with your gut feeling, and what the Neurosurgeon suggests. But for me, that story above really made me thankful that I had talked with them and learned their opinion, so hopefully it will help someone else as well!
Bean is doing great. What a blessing modern medicine and wonderful doctors and nurses are!
Best Wishes to all who stop by this blog!
Christie
