Wednesday, June 30, 2010

"You would never notice"

Most people say to me " O I can't see anything wrong with her"
It is really hard to see unless I point it out. So I wanted to show all of you where it is most obvious to see. This is not an angle most of you see her at unless your me, who see her at "all" angles. This picture really show how her forehead is recessed and can be a tight squeeze on the brain, which has not happen but could if not fixed. She likes to look over her head because she has a range of site that most of us dont when we look up. With the suture being fused it pins that side of her face down flatting her forehead. It also it pulling her nose and eye up and to the right twisting her face. You can see this deviation in the CT scan below better. Her right eye is pulled up higher that the other so it always looks like she is giving you the stink eye. In the surgery procedure to spare you the yucky details they will remove her forehead and the bones above her eyes and reshape them and push them forward. The flatting will get pushed out on her forehead and on the top of her head. She will also get a little eye brown bone added. The other good eye will also be shaped to match the other side as well. After the bone shaping is done they will use plates and screws to put all of it back together. The plates and screw will dissolve in three years time. She will have wire permanently on some of the bones. She will have a scar in a zig zag from one ear to the other across the top of her head. That is my super dumbed down explanation of the surgery. Again she is getting this procedure done to relieve brain presser and possible blindness from pressure on the optical nerve. Its not just cosmetic. Just wanted to give you all a bit more information on what she is having done.

Tuesday, June 29, 2010

Purna Surgery July 6th 2010

Most of you probably already know our baby Purna will be going into surgery on July 6th to have a reconstructive procedure on her skull.

Purna has Craniosynostosis of the right front coronal suture. If left untreated it can cause pressure on the brain and blindness. She is just as healthy and happy as can be right now, but it needs to be fixed when she is still young, the bones are still soft and not pushing on her brain. About 1 and 7000 babies have this and they do not know how it happens. She was born this way. The doctors at Doernbecher Children's Hospital in Portland that are treating her do this type of surgery once a week and are very good at what they do. She will be in the hospital for a week in recovery and then we will go to my parents house in Portland for her to continue to heal untll her post opp two weeks later. I'm told that babies heal very well and quickly so that is what we are hoping for. I have a feeling I'm the one that will take longer to heal and get through it. I know all my friends and family will want to know the progress and updates on Purna so I have made her this blog to keep you all updated on her progress. I will try my best to keep it updated at least for the time we are gone from home. My Purna is a tuff little girl and I know she is going to do amazing getting through all this. All your prayers and thoughts will be so much appreciated.
Below is some more information on Craniosynostosis if you wan to know more about it.

Craniosynostosis Coronal Suture
The coronal suture is located on the side of the head and extends from the soft spot to an area just in front of the ear. It allows the forehead and the frontal lobe to grow and expand forward. When the suture closes prematurely, the condition is known as anterior plagiocephaly (play-gee-o-sef-a-lee). On the side of involvement, the following deformities develop: the forehead is recessed and flattened; the eye socket is elevated and tilted (know as vertical dystopia [verti-i-kel dis-toe-pee-uh]); the eyeball and eyelids protrude (proptosis [prop•to•sis]); the nose deviates to the opposite side; there’s deviation of the top of the head in relation to the face