Not Exactly According to Plan

Things worked out yesterday, but they didn't go quite as I had hoped or expected. Lucas did not sleep for the EEG nor did he have a seizure, but the technician, a very nice woman with beautiful silvery-white curls and a fun-loving gentility, said that she got some good results. As soon as the test was complete and she began removing the gooey leads, he had two seizures. She didn't realize until I said something but they had passed before she could see them happening.

We then met with the neurologist, Dr. Burris. He also did not witness any seizures. (I sometimes feel like I am the only one who can see them, like I've been given a supernatural seizure-detecting gift, or perhaps I am being tortured by my mind and require some intense psychotherapy! - Just kidding. Marc and my dad have seen them too; I am not alone in my madness.)

Dr. Burris explained that there are (for simplicity and appropriate application in this case) two kinds of seizures: prolonged and brief. When Lucas first had seizures they were very lengthy, the first lasting about 1 1/2 hours. The last round of seizures, we have now opted to consider clusters of brief seizures and this round, individual brief seizures.

The medication that Lucas takes to prevent seizures targets the prolonged type of seizures. We are now beginning a trial period of a new medication that should treat both the short and the long. It is called Topamax. We will give 1/2 dose for one week and then full dose the next. We will continue giving his Tegretol (regular med he's been taking since the beginning of the seizures) three times a day as well as Klonopin twice a day (we give this as long as he is having more than one seizure a day). If at the end of the 2 week trial period, we have not seen excellent results, we will cancel his surgery and consider a new trial of a different medication. If there are good results, we will begin to wean off of the Tegretol and rely solely on the Topamax.

We are, of course, hopeful that this medicine will be effective and that we will be able to press on as planned. We know that God knows best and if we are again to postpone his surgery then that is all right with us. We want the best for him and don't want to rush into anything. As much as we may distaste our frequent state of limbo we are becoming impressively flexible, not quite up to par as the famous Chinese Acrobats, but if we continue as we have, I think we'll get there and you can see us touring in a city near you. :)

Please continue to pray for our sweet prince. One concern is ensuring he actually consumes the medicine as it is in tablet form and must be crushed and added to food. As is obvious in his pictures, much of his meal typically ends up on his bib (and face and hair and tray and mommy) instead of in his tummy. His first dose last night went over well. We know and trust it will work out. It always does. :)

Thanks and blessings to you all. We'll keep you posted!