Tuesday, March 23, 2010

Our appointment with Dr. Norman

So, we had our appointment with Dr. Norman this morning.....

Basically, she prepared us for the fact that we are probably going to need to start exploring the brain surgery option for Isaiah. Usually, you have to fail 3 meds until they will even consider the brain surgery option, but because of Isaiah's prolonged seizure times and because he has already failed 2 meds, she thinks it is time that we go ahead and start scheduling the surgery at Texas Children's Hospital for sometime in the very near future.

The pros of this surgery:

-This could very well be the cure for Isaiah's eplilepsy!

-Because he has focal/localized epilepsy of the left frontal lobe, this makes surgery that much easier of an option because they can probably find exactly where the abnormality in his brain is, remove it, close him up and be done. Fairly simple.

-By doing the surgery at this age (and anytime before he is 2), his brain is still developing and growing. The brain is very "plasticky" and surgery at this point in their lives is better than if he was older. This means he should recover fairly quickly.

-Based on how strong and resilient Isaiah is, he should have no problems with the surgery and should recover quickly and bounce back to being a normal, healthy baby boy.

The cons of this surgery:

-Like any surgery, complications can arise

-Partial or Whole paralysis


-Complications from bleeding during the surgery


Renzi and I are ok with the surgery. We feel 100% confident in Dr. Norman and know that she will lead us in the right direction. And we are encouraged that maybe, just maybe, we could put an end to the epilepsy and Isaiah will never have to deal with any of this again for the rest of his life. Of course, we are scared and nervous about the possibility of our baby being in a major surgery on his brain, but we continue to feel and know that God will NOT give us something that we can't handle. We have been through so much already and we have not crumbled. (yet! ha! :) just kidding).

Dr. Norman was going to speak with Dr. Willafong at Texas Childrens today and try to get us on the books, so it could be 6 months away, or it could be 2 months away. In the meantime, Dr. Norman has advised us to bump Isaiah back up on the Clonazapam to the higher dose and to start weaning him off of the Zonasamide since clearly that is not working. We will begin titrating up on a new medicine called Topamax in the next few weeks to see if that will work. Something interesting that was said about Clonazapam today was when we were discussing the Diastat and why it didn't stop the seizure on Saturday. Dr. Norman informed us that Clonazapam and Diastat are made up of some of the same properties, so therefore, with these drugs, at some point its almost like your body becomes immune to them because it is already in your system. Therefore, she has upped his dose of Diastat in case of a seizure, which should take care of that. It was nice to have an explanation of why the seizure didn't stop with the Diastat because that has been weighing on our minds heavily lately.

Isaiah is still running a fever, but we are rotating Motrin and Tylenol and it seems to keep him comfortable. His poor little nose is just a running and he has a horrible cough, but as far as we can tell, all of the major drugs/sedatives are out of his system and he is back to full strength of crawling, pulling up, etc. Whenever he starts to get a little fussy or sad, Jackson runs over and gets in his face and tries to make him laugh. It works every time. Talk about a momma's heart overflowing with love and wanting to BURST out of my chest. LOVE, LOVE, LOVE my boys.

I promise we are ok. We are not sad. We are not mad. We are hopeful. We are blessed. We are prayerful. We are loved.

Thank you everyone for your continued support.

With much love,

Lee Anne and Company.


Adrienne said...

We will continue to pray for the 4 of you and for God's strength and healing.

We know you won't let us know if there's anything we can do for you so we'll just have to call and force you to let us come watch the boys! :)

Stefne said...

I'm praying for your sweet family. Thank you for the updates!

Lisa Pape said...

Love and Prayers are with you all!

Kurt Cockran said...

You guys are such an inspiration and my prayers are with you and God is always with you. Keep the updates coming. Can't wait to work with you again this summer, Lee Anne!