Thursday, July 15, 2010

Dodging the Bullet

This update is long overdue, sorry to all that have been waiting! It's been a BUSY week. So, the good news we have been waiting for...ALEXIS DOES NOT NEED SURGERY...at this point, anyhow. The neurosurgeon we saw on Monday was extremely confident that if Alexis develops any developmental, behavioral, etc. delays that it will not be due to the craniosynostosis. He said that her trigonocephaly (the shape of her head caused by the fused metopic suture) is only a grade II, which is a pretty mild case. We are not out of the woods yet, however. We may still be facing a surgery in a couple years, but we will cross that bridge when we get to it. There are three things that may happen at this point: the trigonocephaly will get worse, get better, or stay the same. At this time, we are NOT concerned about her appearance. We do not feel the need to put our daughter through a life threatening, major surgery for vanity. However, we feel that if it gets worse, the surgery will be necessary for her social development. We were told that if she were to have the surgery now, there is a good chance she will need a revision later in life...and this revision would increase her chances of complications due to the increased difficulty of the surgery caused by scar tissue. This neurosurgeon was nothing short of awesome. We did not feel rushed at all. He took the time to answer all of our questions and calm our fears. He went over the CT films with us in detail, explaining every aspect of the images. We did learn that her head was NOTas tilted in the images, as we were initially told, so her eyes are slightly uneven (one sits farther back in her skull than the other). We can not explain how RELIEVED we were to hear this news...we were so worried about developmental issues, especially given my family history. Thank you to everyone for the thoughts and prayers...especially to my mother-in-law, who gave us a prayer blanket for the baby. She slept with it the night before her appointment, all wrapped up in it, and she slept like...well, a baby! She was also very calm at her appointment, unlike her last one. I can't help but think that it worked. We truly feel like we dodged a bullet.

2 comments:

SillyHille said...

Amazing! I'm so happy for this update. I've been thinking about your family and didn't want to bother you by e-mailing or harassing you!
I'm SO glad that the 2nd doc was better with you. There ARE good health care providers out there... God bless them!! :)

Anonymous said...

That's great news Janae! We went through a similar situation with Colton. He had to get a CT scan for craniosynostosis, but it turned out to be positional plagiocephaly. Which just means mommy and daddy were laying him on his back too much, but when he sleeps 11 hours a night what can you do? I'm glad you got to talk to a good neurosurgeon, and finally got some good news.

Jamie Geist