Here's what I know about JuLee's Trigonocephaly

Posted on Thursday, July 10, 2008 at 09:27

The suture that runs from her soft spot to her nose is closed...and it should be open until she is 4-5 years old.  We have a appt at Riley Hospital to talk to a neurosurgeon and see what has to be done....from what I am told she will have a 4-7 day hospital stay and they will literally "crack" her skull open.  She may also have to wear a protective helmet for 6-9 months....I should know more next Tuesday because that is when we are going to Riley....plese remember to keep little Jules in your prayers....also my next youngest "Cowie" is going to Riley on July 29th for some heart testing and we will also be discussing when to do her next open heart.....she has been having some trouble with chest pain as well as being very fatigued please pray for her as well.