Drat. Larry just had his fifth grand mal for the year. :(( No idea why or where this one came from. It's hot and humid, so that's a HUGE possibility. He had just walked to the store and back with Alex. Unfortunately, Alex got to see all of that one...so we talked about it afterwards. Larry is now sleeping and Alex is refusing a nap. Go figure.

After reading Larry's reports more thoroughly, the MRI does also confirm the brain is misshapen in the left occipital lobe. So...all his tests DO concur about the seizures happening there! The MRI report states that the left occipital lobe is unnaturally enlarged. I thought that was interesting. Larry and I have been discussing the surgery and the possibilities of everything. It's all very frightening, in a way, but at the same time very exciting that he may be able to be rid of these once and for all! We are discussing about the possibility of him losing part of his vision. The occipital lobe controls the vision. The doctor mentioned that he would more than likely lose something like his peripheral vision...not go totally blind by any means. The brain mapping and WADA test will tell us more about what will be affected, but we are discussing the options of "What if it shows this?" so we are prepared to make informed decisions in a short amount of time. If it shows he would go totally blind, of course, the surgery option would be over. He can't work and function blind. And we would never want that to happen. I have blindness in my side of the family and I know how that affects people.

We are also about to start work on our Will again. We had started one shortly after Alex was born, then let it slide. We are both feeling the pressure now to get that created and filed. Not just Larry's surgery is encouraging that, but also all our traveling. Makes us nervous to be on the road with no legal protection for Alex. I suppose we'll also look into all Larry's legal documents he'll need before surgery such as a Living Will and Power of Attorney. It makes me want to cry to think about all this, but it's so necessary, so we'll deal with it. The ramifications of all this is just unreal when it's happening to you. I can't even explain it.

I haven't heard back from the neuropsychologist, so hopefully they'll call Monday. I'll update you more then.

Well, wow! I spoke to the nurse again and here's our timeline, hopefully. Larry's case will go before the patient advisory board either this Wednesday or next Wednesday. We'll then know for sure if we are going ahead with testing. We feel this will be the case. So...four to six weeks after the board meets about his case, we will be heading back to Dallas for a WADA test and brain mapping and possible surgery. Since the brain mapping is invasive, they will just go ahead and operate then if the testing turns out good. I just read his preliminary reports for his past testing and it's amazing. They even quote Larry during one of his seizures. The report states that his seizures most likely arise from teh left temporoccipital region. The SPECT scan solidified that by stating there was increased activity in the left parieto-occipital area. Now, what does all that mean?? I'm not sure! Time for me to do more research. I do know that affects his vision, so I'm assuming they'll be testing all that very well before the surgery!

Our time line is pretty wild for all this. If it goes like the nurse suspects, we'll be back in Dallas around the 2nd week of September for the testing/surgery. If he has the surgery, he'll be in the hospital for 2 weeks (including one week for testing). Then we'll stay in Temple for two weeks while he recuperates, so we are fairly close (2 1/2 hours) to Parkland and very close (17 minutes) to Scott and White Hospital. We may even see if they can transfer his records to S&W while we are in Temple. I don't want to be pessimistic, but I do want to play it safe.

I hope to hear from the neuropsychologist in the next 2 days. I'll report back then. :)

Preliminary reports are back...truly in draft form.

The SPECT scan shows the seizures are happening in the Left Parietal Occipital Lobe. Surprised me after reading about the temporal lobe and occipital lobes. I'm guessing they spread into the temporal lobe pretty quickly. His case still hasn't gone in front of the patient advisory board and probably won't for another week or two. The nurse will be calling me back by Monday to let me know. She thinks they'll probably do the WADA test and the brain mapping at the same time since we live so far from Dallas. I've called her back and left a message to try and find out the time frame of all of this. So in a way we have news, but in a way, we don't. I've called and left a message for the Neuropsychologist to call me back with the report from that testing, too.

Back to waiting impatiently....

We watched a fascinating show last night on ABC...Houston Medical. They featured a little boy who had epilepsy and had the brain mapping and surgery! It was SO fascinating to us. At Houston Medical, though, as soon as the brain mapping showed the doctors the information they wanted, they did the surgery! This little boy, Jonathan, apparently had a very distinct area of the brain that was deformed. When they did the brain mapping, Larry and I were just intensely watching the surgeons and how they put the electrodes on the brain. Totally fascinating! Now we're really praing that we get to do the next step!! I think God helped us in this show...showing us in real life what's next so we aren't afraid or fearful, but ready to move forward.

Here are some links to the show and to Houston Medical:

ABC's Houston Medical
Memorial Hermann

BIG HUGE UPDATE~

~*~*~*~*~*~*~*~*~ LARRY HAS PASSED THE FIRST OF HIS ARCHITECTURAL LICENSING EXAMS!!!!!!!! ~*~*~*~*~*~*~*~*~

He has nine exams and just passed the first exam with all this stress going on! AMAZING!! He studied hard, applied himself and definitely worked hard enough to pass it! I'm so proud of him! We had to go out for dinner last night to celebrate, of course!

I'll be calling the nurse at the Epilepsy Center on Friday to see if they have any results yet. Wish us luck!

We haven't had much to update lately. We are just in the waiting phase now. Larry is having about one seizure a day right now. Not as bad as we feared. Anytime they mess with his meds, he has seizures for a couple of weeks after. They've all been the petit mal, so not too bad at all. :)

Someone asked what Larry's seizures look like. If you don't know an epileptic, you probably think of the grand mals when you think of seizures. Those aren't Larry's typical seizures...actually the petit mals are. So here's how I responded to Tamara's question:

"You can tell that he's having one. He has a funny look come over his face and his eyes start moving around. If it goes to the next stage, then his face starts twitching and he starts moving around a bit trying to control it. He swears he can concentrate and control the severity sometimes. It's amazing. This doctor believes him when he says that. If the seizure keeps going and it's going to fast for him to control, it moves on into the grand mal. He moves around in circles to the right and that's the way his neck jerks. The grand mals have gotten to be really bad because after he stops convulsing, he stops breathing. They terrify me and he's already had four this year. He hadn't had a grand mal for 2 years until February. :( "

So maybe that clears things up a bit. :)) I guess I better get us ready for church! Alex has had his bath, but his clothes are in the dryer. He's not going to be happy with me when I make him wear something nicer than the shorts and shirt he's been running around in all week. ;-) Gotta go fight that battle now! Hugs to everyone!