medical update

After all the tests, after all the hours, after all the tears, after all the prayers - we have direction. During the hospital stay Camilla was started on Banzel (a med that she's been on before but had to come off because she couldn't sleep on it) and we are rapidly increasing to a mega-dose over the next two weeks. We will also add Lamictal next week to hopefully gain some sort of control over the seizures-keep in mind she was already on four meds before the hospital stay. This effort with the meds is something that we are very doubtful that will help at all and when I say we I mean the docs too. Even if we see any improvement in the seizure activity we will most certainly be dealing with a number of side-effects (insomnia, disorientation, lack of motor coordination, stomach issues, etc...). The docs explained their reasoning as a 'last ditch effort' before surgery. It's one of the attempts that has to be 'checked off' before they will release you for surgery. So here we are, having to suffer through the next 3 months on all these meds as we continue to do more testing to prepare my baby for surgery. A long time ago Brandon and I decided to opt for less medicine, in exchange for more seizures, in order to have Camilla 'with us' as much as possible and not lost in a medicine fog or dealing with more side-effects than any of us could handle. So the next couple of months will be difficult but we are very glad that the docs are continuing to prep for surgery and not waiting to do so after the end of the 3 month med trial.

We will go for an MRI on March 7th and back to see the neuro again on the 14th. There will be a few more tests after that but with all things going smoothly Camilla's case should go to conference in late April or early May. This is when EVERYONE involved with Camilla's case (2 Neurologists, 2 Epileptologists, surgery coordinator, surgery consultant, 2 Neurosurgeons, etc...) will meet and Dr. Kim will present her case. She said these meetings usually take about an hour and after the presentation everyone will get a time to give their opinions on surgery - the good, bad and ugly for Camilla. THIS WILL BE A VERY IMPORTANT DAY! If she is approved then surgery will be scheduled within the month, so we are looking at May or June.

As we find out more details about surgery I will do a little more explaining of what will be involved, recovery and hopeful outcomes. I will also be updating on the side-effects of the med trial. Right now I ask for your PRAYERS; specifically for sleep and patience for all of us during the med trial, for ease and clarity for the testing to come, and for all of the people that will be involved with Camilla's conference. I will post the day and time of her conference as soon as we know so that we can all pray very hard during that time.

Thank you for your concern and prayers for Camilla. Your support and encouragement through this process has meant the world to us. Below are some of the last pics from our stay at Childrens. I'll try to post a few videos later-