I was tagged and was told to blog about the 6th picture from the 6th folder. Here it is, Autumn's first big hospital stay in July of 2006. What a trooper. And speaking of hospital visits, we had our checkup with the neurologist yesterday from the September hospital stay. It was a little surreal. She is actually doing the best she has ever done since being diagnosed over 2 years ago. It seems that the medication we changed to last spring was a really good switch for her. We can continue to increase the dosage as long as we do not see any side effects, which so far so good. However, he finally told us what we have been wondering for awhile. That is, are we surgical candidates? He said that although technically her MRI's are normal the right frontal lobe has some things going on that would explain the seizures. (I am totally paraphrasing what he says, it is said in much more medical terms than this.) Anyway, what it comes down to is that he wants us to keep the surgical option in the back of our head for the next little while. We sort of wondered why we would even consider it if she seems to be doing so well. "Well" is all relative though. She is on more that 1 medication and her seizures are not totally under control. (As a side note, she had her 1st seizure at school on Monday and the school handled it great.) But, she is young enough now that we have control over her meds and sleep schedule. We have to consider the rest of her life. The surgery ,if we were to qualify after more intense study, would be the only way to prevent the seizures long term without medication. We have to think about long term goals. Anyway, I know I rambled, it was a lot to think about. I mean who am I to make a decision like that. It would basically mean taking the part of the brain out that the seizures are coming from. We are in very good hands as far as doctors are concerned and that makes things easier. Out of all of our Doctor's patients yesterday we were the only ones from the Dallas area. The farthest a patient had to drive was from El Paso. We feel very blessed to be able to get to see these doctor's very easily. Anyway, fortunately, epilepsy surgery is not an emergency. We still have a lot of time to see how the latest medication increase does and to think about things. The doctor is not ready to discuss all of the surgical procedure, he just wanted to throw it out there for us to all be thinking about. We cannot thank all of our friends and family enough that continue to pray for our special little girl! Oh and as a side note, she tested negative for the genetic type of nocturnal epilepsy. The doctor was really surprised because she is a total fit as far as her type of seizures. But, it is a good thing knowing it doesn't greatly increase her children's chances of having epilepsy.
I will leave you with a little something I found the other day. It was written by a writer from Sesame Street whose son was born with Down Syndrome: Welcome to Holland
Youth Group
7 years ago
