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AJ is now almost 9 months post surgery and very recently I have started to feel something pointy, sharp palpable screw like things underneath the skin of his temples. Is this normal? I have written to his docs in Vienna and its difficult to describe and I guess for them to say what exactly it could or could not be.....so in the meantime I am writing here to see if this is normal and some other mother has experienced this too? Please let me know.

I am writing this from Vienna where I am with my family for my son Aarambha Jyoti (AJ)'s follow up. He's now 5 months post op, and the doctors seemed happy with his progress. He still has very big soft spot and other frontal sutures because of the correction at the time of surgery, and the docs say that this will take a few years to close. So to have got the green on that front was a relief!He has however now been confirmed to be hypotonic. We are taking him in for the nerve conduction test tomorrow ...

Hi, AJ had CVR on Jan 11 2012 and is now over three months post op. He is almost a year now but was a month premature. He is still not walking or crawling or getting from tummy to sitting position on his own. His pediatrician now thinks that he might have low muscles tone. I have been trying to read about low muscle tone and land up with a term called hypotonia. I read that it might be a neurological problem. Can this be related to the craniosynostosis?

We brought AJ home from Vienna where he had his surgery for metopic cranio synostosis last week. 6 weeks since that day and life it seems is returning to normal. It has been a rather difficult 9 months, more so as we had to travel far away from home for his treatment. But these are moments in life I guess when being strong is your only option...there just isn't any other way! Now with the worst hopefully behind me I am able to look at it in a different light. The experience has made me grow stronger, ...

Received an email from the doctors in Vienna today asking us to bring AJ straight to 17B for admissions the day before the surgery in Jan. As I read it, an image of me holding my little boy at the hospital waiting for him to be admitted splashed in front of my eyes...and I felt sick in my stomach. Everyone who has written here says that this is the worst and the best is yet to come....and I guess this anxiety, this fear and this pain right now make the relief and joy of the other side worthwhile! ...