Just another poopy day in paradise

After soaking up everything I had been told yesterday and today, I think I am ready to spill the beans. Once again, no small talk.

It's a fact that Carson has both craniosynostosis and chiari malformation. The issue that we are having is that Carson is still rocking and thumping the back of her head. At this point, we are not sure if the cranio is causing the rocking (ICP - intercranial pressure), or if the chiari it's self is causing it.
So, yesterday while we were in Chicago, Dr Frim felt Carson's head and said he thought that her skull may have fused again prematurely. She also has a huge bump just above the hairline that has been questionable.
Frim seems to think that her skull is no longer growing fast enough for her brain, and that her brain is starting to push out anywhere it can.
He also believes in "fixing" the cranio issues before attacking the chiari issues.
With that being said, I spoke with Dr. Jensen. We have an appointment with him and possibly Dr. Kaufman (NS) . We need to figure out if her skull did indeed stop growing and to see if there is ICP.

Thursday, she will have a CT done, and then the appointment.

Jensen also thought that Kaufman may what to monitor her for awhile with a ICP monitor - probe. They would do a mini craniectomy and place a probe in between her dura and her brain and watch her in the hospital for a few days. This should tell us if she is having high ICP or not.

If here skull is not growing, I am afraid to say that they may have to do a revision of the CVR surgery that they did in Aug of 06. If that helps her with the rocking, then Frim will just watch her and see how her chiari develops. If it doesn't help, then there could be a possibility of a decompression surgery as well.

So, that's where we are sitting right now.

I am drained, I am exhausted. Between Chicago, and Milwaukee this coming week, I am just fried.
Matt and I got away tonight (thanks Gayle and Jim!) and to be honest we talked a bit, but it was VERY hard not to talk about what is to come with the kids. It just stinks. More time in the hospital, more time away from the other kids, more surgeries. I am starting to think I will not know life any different then all of this. It just SUCKS!

We are honestly trying to hang on, but each day becomes more and more trying. Will we be strong enough for each other? Will we make it financially, emotionally, physically??? Right now? I think we are drowning in every aspect. I think our hole has been dug SO deep I am not sure we will ever get back to whatever NORMAL is.

Oh well, this is the path god has given me. So - I better sit down, shut up, and hang on. It's bound to get worse.