Tag Archives: craniosynostois

Elise Update

After many calls and getting the run around from the insurance company we were able to get an appointment set up for Elise.

We will be going to Mayo Clinic in Rochester, MN this Thursday. We will be meeting with two specialists for a consult and from there they will be able to help us make a plan for Elise.

We will update you all again when we have more news.

Thank you all for your support, kind notes and emails and especially your prayers. Please keep praying for our little girl. She has a tough road ahead of her but she is strong and we are confident that everything is going to be okay. We were blessed to get into the best doctors -not just in our area but they are some of the best in the country. Again, please keep us all in your prayers and if you see Michael and Patrick please give them as much extra love as you can. This will be hard on them too.

Elise

For those of you who don’t know, or haven’t heard already, I apologize that you have to read about this for the first time on the website, but Meg and I wanted to put together a post to give everyone as much information about this as possible.

Our midwife became concerned about the shape of Elise’s head and a ridge that had begun to form at the top of her head, as well as the fact that she didn’t have a soft spot at the back of her head.  We took her into our doctor on Friday, and after feeling Elise’s head our doctor has referred us to a specialist in Craniosynostosis.

Below (along with some new pictures to help us all cope) are some links with information about what the doctor and midwife believe is wrong with Elise.  Nothing has been confirmed yet, but everything we’re seeing seems to be confirming it.

http://en.wikipedia.org/wiki/Craniosynostosis

http://saggitalcraniosynostosis.com/

The usually fibrous connection between two bones in Elise’s skull have fused together which won’t allow for the normal expansion and growth of the brain and skull.

We’ve read of two options for surgeries.  One which requires large zig zagging sutures from ear to ear, with plates and screws to hold the appropriate shape of the skull.  The other is the more likely option, since we were lucky and our midwife caught it when Elise is so young, is a minimally invasive surgery with a small incision which will cut the fused suture to allow the bone to grow the way it’s supposed to.  After the surgery she will need to wear a helmet for 3-4 months with weekly adjustments to make sure her head grows into it’s proper shape.

Everything else is right on track with Elise.  She’s making eye contact and even smiling (as you can see in the video), and while this development is scary we’re very confident that it’ll work out.

Elise’s First Smiles

more pics here