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.


Jean said...

Its just not something you thought when you had kids. When they come out healthy, you breathe a sigh of relief and think the worst is over! And for you, all of your children have/had major surgeries or will be.
I'll say more prayers for the kids, and pray for sanity for you!

BoufMom9 said...

no, no. Try not to look at it like that. I know how easy it is for me to say to you that things will only get better, but I truly believe they will.
You must always have faith, even when it seems you are at your lowest.
I learned that a very hard way this past year and allowed my faith to be rocked and God was still there and picked me up when I needed Him most.
I am so very sorry about Carson. It really stinks. :(
As always, i am praying for your whole family & keep you in my thoughts always.

JuliAnn said...

Hang in there, and keep positive. Not easy, but necessary!

Anonymous said...

Happy Mother's day to a mom that needs alittle happiness today. I've been thinking of you guys alot, talk to you next week.


Anonymous said...

I know things feel hopeless. I listened to an inspirational speech Dr. Carson gave 1 month after Austin's 3rd surgery... little did I know that he would have more and Madi's journey hadn't even started. There was another woman there that had a boy with the same two conditions: chiari and cranio, plus a 3rd. They were up to 18 surgeries. He told them that it seemed like a dark, dark forest, but light would emerge. (thus the reason for my book title!)...
I know days are dark right now, but I promise, light will emerge. I too never thought the kids would be well, but Austin celebrated 5 years out in March and Madi will in Sept! Hang in there momma.

Amy W said...

Sorry to hear the bad news...let me know if there is anything I can do to help...