Today’s appointment at Mayo went well. Really well.
The neurosurgeon confirmed what we thought and she does have Scaphocephaly. This may not seem like good news but it is to us. Now that it has been confirmed by two doctors, theÃ‚Â neurosurgeonÃ‚Â and the plastic surgeon (both scrub in for the surgery) we know what we are dealing with. It’s the “what ifs” that have been the scariest part of all of this. TheÃ‚Â neurosurgeonÃ‚Â also reassured us that we do not have to worry about any retardation or developmental delays. Because there is no history of this in either of our families and only the one suture – the sagital suture- is fused we have nothing to worry about. TheÃ‚Â neurosurgeonÃ‚Â also told us that we do not have to worry about brain swelling – at the appointment with our physician she told me to watch for swelling in her brain by keeping an eye on her one soft spot (which I still think is incredibly horrible for a doctor to do. I don’t think that I have ever been so scared, stressed or worried than I have been in the past week while watching for brain swelling in my baby girl.)
The biggest update we have for you though is that after meeting with the doctors we have decoded to go with the other surgery that Tim mentioned earlier, the more invasive open surgery. This will mean that they have Ã‚Â to make a large zig zag cut across her head from ear to ear. This surgery will require a day more in the hospital for recovery but when she is discharged from the hospital her head will look normal, sans the scar. They reassured us that the surgery is far worse for the parents than the child and that she will be back to her normal self in a week to 9 days. Because her skull is still so plyable and soft they will not do the surgery until she is 4 months old. That puts us at a January surgery date. This surgery will be tough but it also means that she will not have to wear a helmet for a year.
We were very impressed with the doctors. The hospital was incredible. All of the staff was so nice and incredibly effiecient. WeÃ‚Â registered, met with 2 different specialists, Elise had pictures taken of her Ã‚Â head and we scheduled an appointment for a CT Scan for next Tuesday all in an hour and a half.
Tim and I both left the hospital today feeling lighter. I still may break down in tears when I talk about all of this but those tears areÃ‚Â manageableÃ‚Â now because we know what is going on. We have a plan. We have great doctors taking care of our little girl. It is still scary but we now know that everything will be okay. And that is good. Very good.