medical update

So when the phone rang about 3:00 this afternoon - I just knew it was Ally (surgical coordinator) - and I started shaking. I picked up the phone and before she could even begin speaking I felt a peace like never before. She immediately began saying that Camilla had been approved for surgery and that all involved felt that she was a prime candidate, but there were still some decisions to be made. Decisions that we will make when we meet with the neurosurgeon on April 25th. Decisions that will be difficult-

Ally went on to describe that the team could not decide between a 'complete corpus callosotomy' or an 'anterior two-thirds corpus callosotomy.' To describe corpus callosotomy for anyone who may have missed it before means to sever the bundle of nerves that connects the right and left hemisheres of the brain. 'Complete' would mean completely severing it and 'anterior two-thirds' means they would essentially just cut the top off of this bundle. Obviously 'complete' would give us the greatest chance at total freedom from seizures and 'two-thirds' would still give a good chance at total freedom and even if she did have them after this they would most likely be less frequent, less intense, shorter, etc... The kicker - if we do a 'complete' there would be no chance that she could ever read. It has to do with the mechanics of how you process the info you see and then translate that between your eyes and the different hemispheres of the brain. There are other things to consider with both of these options and we have many more questions about seizures and development post-surgery. Hopefully we will have these answered before we meet with the neurosurgeon and have to make this decision.

Hold on WAIT - did you get what I just said - they believe that she could be able to READ. That her development could progress that far and so much more. Ally went on to say that with completely devasted children (who cannot feed themselves, walk, say any words, follow any commands) that there is no question - 'complete' is the way to go for them. But they know that is not Camilla, they know that she is still developing and still learning and they want to know if we are willing to risk any seizure activity in order to allow her development every shot to progress. I know there are no certainties but what a wonderful thought!

I want to thank everyone who has prayed, come by, sent texts or messages, or called. I cannot describe how grateful we are to those keeping our sweet baby in their prayers. And believe me - the prayers are being answered! All day today I have been so happy, unanxious (except while the phone was ringing), and at peace. A weird peace - like there's a very small part of me screaming 'they just told you that your 5 year old is going to have major brain surgery why are you not freaking out? you should be screaming and crying and angry' - but I'm not. Now don't get me wrong, over the last 5 years there's been plenty of that - but not now - I promise that whatever is to be 'it is well'.




"For I know the plans I have for you," declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future." Jeremiah 29:11