AND........we're back!

After a very, very long break, we are back!! After my last post, things around here just got so busy and kind of crazy. I know I have a lot of catching up to do, which I will do, but for not I'm just going to jump back in. I think I mentioned that we found out Ava had a stroke very early on in her life. The doctors said it most likely occurred either in-utero or at birth. Well ever since that discovery, we have been busy with of course school, but also doctor appointments, lots of them, therapies...Physical, Occupational and Speech therapy and tests...EEGs, CTs and MRIs. And so now, here's the latest on our little princess. What we know at this point is that probably as a result of her stroke, Ava has been 'blessed' with Epilepsy. She has seizures, uncontrolled focal seizures that are focused in an area coming from her occipital lobe. She has mostly absent seizures, or the quiet, stare off in to space type where she is unresponsive for about 30 seconds to a minute. But she also has these episodes where all of a sudden she can't see or can't hear. And Ava's latest EEG results have shown that she's either having very abnormal brainwave activity or actual seizure activity basically 24/7 and here's the kicker, the docs say all this activity increases when she sleeps! Sounds a bit unnerving doesn't it? Well, it's crazy to read and maybe hear, but it's part of our everyday conversations around here now. She's on 2 different meds, Depakote and Trileptal, but like I mentioned previously, she's still having seizures. We are working with a really good group of doctors at Children's Hospital here in Milwaukee. Dr. Hecox, Ava's Epileptologist told us this past October when Ava was in the Hospital for Long Term EEG Monitoring, that from the test results, he was able to determine where the seizures are coming from, the Occipital lobe and he told us that since her seizures are so focal, that if meds couldn't control her seizures, that she would be a good candidate for surgery to stop her seizures. YIKES!.... was our 1st reaction! He also said he didn't want to wait to long to do the surgery if meds don't help. So now, seeing that it's been 5 months since we were told this news, Dr. Hecox has now ordered tests for Ava in preparation for surgery. Tomorrow, April 12, Ava will have a PET Scan of her brain so the team of doctors that Dr. Hecox works with can get a better picture of exactly what's happening in Ava's brain. The next step will be for Ava to be admitted to Children's sometime toward the end of April for more long term EEG monitoring. From there, with the results of the PET Scan and the EEG, I believe plans for surgery will be made. And yes, we are scared. Ava cannot go on with uncontrolled seizures, we understand that. Hopefully, this surgery will stop her seizures. But we can't help but think of the idea that surgery could leave her worse off than she is. And with the seizures coming from her occipital lobe, that's where vision is controlled by the brain, could her sight be effected by the surgery? We just don't know. I hate not knowing, that's driving me crazy! Plus, she falls ALOT... sometimes she just trips, but sometimes she just drops to the ground for no reason. Those drops are probably "Drop Attacks" or momentary seizures that only last a second or 2, but the docs are thinking that there might be something else causing the falls. That idea is in our minds and the doctors and they will investigate that further, but the priority at the moment is getting her seizures under control. So with all this news of Ava's uncontrolled seizures occurring just about all the time, we've decided to keep her home from school for now. It seems that the more low key we keep her, the better she is. So, her school knows what's going on and a meeting is in the works for Ava's IEP (Individualized Education Plan) Team to create a plan for at home tutoring. So that's the latest on our Little Love from China... please keep her in your thoughts and prayers. I've seen from the software that google blogger has available for its users that we've had lots and lots of visitors from all over. We'd love to hear from our visitors so please take a moment and leave us a note in the comments!