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Another hospital visit and some difficult news - Page 3

post #41 of 43
I'm so sorry. I will be praying!
post #42 of 43
DID, I just saw this and am sending you prayers and good thoughts.

post #43 of 43
DiD, I'm so sorry you are going through this. I AM glad to see that he beat that RSV so quickly!!

My son had craniosynostosis, the same version that you're worried about. It's more commonly called scaphocephaly. I spent countless hours researching it and would be glad to discuss my research with you. I know it's scary, but there is a fantastic option that is not nearly so invasive as the standard surgery. My son's surgery was 57 minutes long and he was released from the hospital the next morning. There's SO much to say. We can take this to PM if you want, or I'll PM you my phone number and we can talk. Or, I have unlimited long distance and can call you. Between my son and DD, I don't get much chance to type...the phone works a lot faster, IYWIM?

The most important things to know:
The only way to diagnose cranio is by a 3D CT Scan. Do not waste the money, time and radiation on xrays, MRIs or standard CT scans. They will not give the right picture to confirm the info you need.
www.craniosynostosis.net These folks are the "Gods of Cranio." They invented the endoscopic surgery that we used. People fly in, from literally all over the world, to use these doctors. We flew from PA to San Antonio for them ourselves. I can go over their procedure and the really awesome set-up they have for non-local patients. They have it layed out REALLY well for you to fly in, be treated, be comfortable, even do some touristy stuff and head home. That tourist part sounds outlandish, but it's true and it works....though I couldn't believe it beforehand.

posting so i don't lose this...computer is flaky. will edit to continue my thoughts.....

Crap....I didn't realize you've already done the MRI. Perhaps that is helpful anyway with your other concerns about him. I looked at his photo, he's ADORABLE!! If he has cranionsynostosis, it's certainly not very severe, which is wonderful. Correction is really very simple in the mild cases. DS was kinda in the middle with his AND he wasn't in surgery until 5 months old, which is somewhat later than usual. Nevertheless, his results are great.

Anyway, I'll PM you.
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