More than Enough

That's how I feel lately, about these stupid seizures (sz) and the struggle to successfully treat them with medication, but also about the wonderful grace that God so freely gives.

To update you all:
We increased the Banzel while we were in NY for Lucas' birthday. I think that I increased too quickly. (I was not instructed to take my time, but always have in the past and believe it was a mistake not to have done so). After the first day of increased dosing, Lucas woke at 0330 stricken with sz and unable to return to sleep. This has pretty much been the pattern since. He has been waking at 0330-0400 and has had difficulty sleeping in the night as well, waking an hour or so after falling asleep and again having a difficult time getting back to sleep on several nights. His sz have increased to an average of 80-85/day, topping out over 100/day more than once. This is the most that we have ever seen him have and it is totally unacceptable to us.

I talked to the neurologist's office again this week and explained the situation. Initially, I was instructed to increase the Banzel again, but after the doctor had a chance to review Lucas' chart thoroughly, he said that he wants to try putting him on Depakote. This is one of the drugs that we have been trying to avoid because one of the possible side effects is fatal liver failure. It would require getting blood work done before beginning the drug to get a baseline of Lucas' liver and kidney functions and then getting blood work done regularly after that to make sure that everything is working all right.

After getting this call on Wednesday, I felt like I might have a melt down. Weeks of sleep deprivation and months of sz frustration have been wearing me down. The thought of trying something that I know has possible severe side effects ripped at my heart and I couldn't stop the tears from pooling in the corners of my eyes. I so desperately want him to be well and I despise the thought of putting him in any kind of even possible danger.

Through all this though, I must say, I am amazed at the grace of God. I have heard it said so many times since first informing people that we were expecting a wonderful child and I was in the intensity of my final year of nursing school that "God never gives us more than we can handle." I know that I have said this in the past as well, but the truth is, that is not the case. If anything is clearly defined on the subject, it is the opposite that is true. God gives more than we can handle on purpose. He does not desire that we "handle" our lives on our own, but that we share our struggles and all the weights of our little worlds that bear down on our shoulders with Him. He says that if we ignore Him and go off on our own, we will assuredly face struggles and we won't be able to save ourselves because we aren't meant to. But, He can save and has saved and does save and will save us. He also grants us a beautiful bounty of grace to sustain us through whatever hardships we may endure.

To be clear, I am not suggesting that all hardship is result of our turning away from God, but all hardship should absolutely bring us closer to God and in doing so, we are given joy that wells up within us that shines through every moment of the dark times. There are always more things in life for which to be thankful than we could ever find about which to complain. I thank God that Lucas' joy remains in spite of this struggle. I thank God that in spite of all the struggle we have faced as a family, that we have Lucas with us. I thank God that we are closer as a family every day even though the struggles remain, that Marc and I have learned (and continue to learn) what it is to love and how to express our love to one another and Lucas and others, friends and strangers. I thank God that He would choose us to be used in such a way that we might be able to share this love with all of you out there connected through cyberspace. I thank God for the internet, for our computer, for our house, our solid roof, our heating and cooling, our washer, dryer, fridge, stove/oven, et cetera, et cetera. Lucas is joyfully squirming in my lap, so I will stop for now. Hopefully you get the point. :)

I don't know what we will do as far as the next treatment attempt for Lucas' sz. We will meet with the doctor next week and come to a point of decision. In the meantime, I am slowly weaning him off the Banzel. We'll continue the Keppra and I'll try to update you soon after we decide what to do next. I thank God for all of you and pray that you are drawn closer to God, that you release your burdens and struggles, fears and pains to His loving care and that you know in every moment His inexplicable joy.

Blessings of love to you all.

Here are some pictures for your viewing pleasure. :)

Lucas' 2nd Birthday

Random Spring 2009