Carson update

It took a little while, but we finally have a game plan for Carson. I spoke with Frim the other night and we talked about what would be the best for her at this point in time.

Frim thinks that there could be a possibility that her superior sagittal (venous) sinus maybe compressed due to her craniosynostosis. During both cranial vault repairs, Jensen never removed any part of the sagittal bone, and just "widened" her skull - which was the game plan.

Now that she has been widened twice, Frim seems to believe that there could be pressure under her sagittal bone. What does that mean? That means that she is being scheduled for an MRV scan - to look at her blood vessels and blood flow, and a second lumbar puncture. I am hoping to know when the appointment is on Monday.

Carson had her 3 month post op last Thursday and that appointment went fine. I spoke to Jensen about the possibility of the sinus decompression. He is not game. He believes that if she would need a strip craniectomy, it would not be in her favor. Because she is now "older", if the sagittal bone is removed, it will not grow back. Meaning ~ she will have to undergo a 2nd surgery later on to replace the bone.

IF her sinuses are not compressed, and her LP is still elevated, than we would discuss a lumbar drain ~ which Jensen is not in favor of either.

I put my TOTAL faith in both of our doctors, and it is hard when they are split.
I am trying not to stress to much over all of this until we have results from the MRV and LP. But after ALL she has been through, it is hard not to think about what COULD be coming her way.

In a bitter sweet situation - I hope for test to be normal, but also need to figure out why she is rocking and banging her head.

Please keep her in your thoughts this holiday season ~ It could possibly end up being a tough one for her and our family.

* On a positive note, this is the season for giving, and BOY has our family been blessed. Last week we received a gift from an anonymous donor. We received over $1,000 in grocery and gas cards. I can't even being to tell you how Matt and I feel. It is truly amazing that even during these hard economical times, that people are still willing to give to families they may not even know.
To our donor - If you are reading..... I can't even being to tell you how we feel. We knew that someday the light at the end of our really long tunnel would shine, and because of your generosity, you brought that light closer to us! THANK YOU, from the bottom of our hearts!


Michelle said...

WOW that is so generous! What a gift!

Keep us posted on Carson's MRV.

Vic said...

Please keep us posted. I am praying for Carson every night. Thank you for visiting my blog. I know how you feel, and do not feel sorry. It is completely okay.