medical update

Where do I even begin? The day started out with no eating or drinking due to the lumbar puncture scheduled for 8:00. That test didn't actually happen until about 9:15 but thanks to many prayers Camilla did not once ask for anything to eat or drink beforehand. We had to redo her leads this morning, she had pulled about 5 completely off and others were askew but she was really good this time - no meltdowns and she didn't even have to be held down! After the test at 9:15 she had a hard time coming out from under the anesthsia - she was really restless and was fighting hard. After waking up and finally eating we saw the neurologist who told us we would now be here till Monday. She started Camilla on a new med this afternoon and it's one they can increase quickly and see results by Monday but if you ask me her EEG already looks calmer after the first dose - still seeing MANY seizures though. We usually see 5-20 seizures in a day and we have always been surprised during these tests to know just how many she actually has that can't be seen - no different this go around - she's averaging at least one seizure per minute when she's awake.
We did find out the results of the spinal tap and she was negative for Glucose Transporter Deficiency - bittersweet - it would have given us a reason for her seizures but the treatment would have been to go back on the ketogenic diet indefinetly which would be hard now for my little girl who LOVES TO EAT!

So now on to the next course of treatment - we started Banzel today along with the other meds she is already on and we will start Lamictal next week (we have tried both of these meds before B at 4yo and L at 9mo). If the addition of these meds
hasn't stopped her seizures entirely after 3 months we will do surgery. Dr. Kim believes that a Corpus Callosotomy will give her the best chance at freedom from seizures and SPEAKING! This surgery would invlolve severing the bundle of nerves (corpus callosum) that connects the right and left hemispheres of the brain - MAJOR. I won't even get into our emotions about surgery right now but I will let you know that this is not a surprise to us. It is something we have seen coming for a couple of years now when no medication, diet or even the Vagus Nerve Stimulator would touch her seizures. I will say this though - I can feel your prayers in many ways 1)I didn't almost throw-up today when Dr. Kim started talking about surgery 2)I have a very eerie calm when thinking about surgery now 3)I have a really amazing feeling that God is about to do something really special with Camilla and after 5 years of dealing with daily seizures I can say that whatever her future is 'It is well...'

To sum up the rest of the day - we are still dealing with the boredom and irritability of being in a hospital bed/room for 2 days now and we have 2 1/2 more to go. Thankfully though the grandparents arrived in full force today and Brandon and I were able to get a break. Please keep the prayers coming - we thank God for them everyday! Here are a few pics so far-