Home again, home again, jiggity jig!

First, I have to say thank you to everyone who reads here, posts comments, follows us on Facebook, etc. You guys are all awesome and you definitely keep my spirits up when I am stressed. THANK YOU! :)

We saw Dr. Lerner at UCLA. He was incredible. His personality is fabulous, he flirted with Emily, he was so good at explaining things, and I felt like he really wants to help. He asked me about a few tests that no one at CHOC would do, even when I asked about them. The first was that she has some strange patches of skin that are lighter than the rest of her skin. He asked me if anyone had ever mentioned them to me and I told him that CHOC told me it was a birthmark. He laughed and said "of course it is. But did they mention it could mean anything?" No. Never. So he went and got this fancy light (looked like a black light) and checked her whole body. She has quite a few places of abnormal skin tone. He wants to have her tested for Tuberous Sclerosis. He also wants to have her tested for an epilepsy gene, something I had never heard of.

The plan is that we are going to go inpatient at UCLA for a lot of testing. We are going to start with a 24 VEEG. If we catch enough seizures during the 24 hours we will go home. If not, we will be staying until we do. We are also doing a new brain MRI, and a PET scan. I have been asking about a PET scan for over a year and no one would listen to me. This was one of the first things Dr. Lerner asked if she has had done. I am SO glad he is being proactive!

His hope is that we can identify for sure that all of her seizures are coming from the same place. Or that at least MOST of her seizures are coming from the same place. The most recent EEG's showed spikes all originating in the left temporal lobe. If we can isolate the seizure location, then we can hopefully do a resection and remove that piece of brain. If they are not localized, or the area of the brain is not okay to remove, we will do a vagus nerve stimulator.

Hopefully the authorizations for these things will be done within a week or two and we will get in to UCLA for these tests in November. In the meantime, he gave me a new schedule on how to increase her Mysoline better. He said to contact him with any questions or concerns. He mostly does email contact with parents, which is AWESOME. I love that. I wish all doctors would let you email them!

It was a great appointment. I really liked the doctor, I felt like he really listened to me and my concerns, and is going to be a huge help in Emily's care. :)

Please help us raise money for our Children's Hospital! Donate to Princess Emily's team for the CHOC Walk! click hereAny amount helps, even a few dollars. :) Thank you!