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

Meds changing again

I have been meaning to put up another update since the Monday following our Vacation, the 27th I think it was, but haven't gotten to it. The computer/internet is sometimes my nemesis and I prefer to avoid it. I feel like it has an uncanny ability to suck the life out of me right through my finger tips. Frighteningly amazing, huh? :)

Anyway...

We saw Dr. Burris, the neurologist, that Monday and I informed him that Lucas has at least twice the amount of seizures in the first part of the day than in the second so he suggested increasing Lucas' Keppra (the med he's been on for some time now that seemed to be quite successful until last October when we missed a dose in the chaos of me being a bridesmaid which threw the entire evening totally out of the norm) to 4 doses a day verses the three times a day we have been doing since last fall. The thinking was that getting the meds in him earlier will get the day started better. The plan has, however, failed miserably. His seizures seem to increase every day by 5-10. Yesterday he had 70 but the week before only 28. Also, the number of seizures in the morning has not decreased. Yesterday he was up at 0530 and by 0730 he had already had 45, by 1200, 58, but then only 12 or 13 more the rest of the day. Frustration!!!!

Today I talked with his office again and we are increasing the Banzel (the new drug fresh on the market this January that we began in February; we had blood drawn last week to check the serum level, the results of which indicated that it might be good to increase the dose). We are going from 1 1/2 tabs twice a day to 2 tabs twice a day. Also, since the 4th dose of the Keppra seems not to have caused a lick of improvement, we are going back to three times a day on the doses, but increasing the total amount taken daily by 1mL so he will have 4mL three times a day vs. 4mL, 3mL, 4mL which we had been doing.

Basically, all this gibber-jabber means that we are still battling seizures, but I am hopeful that I might actually get a full night's rest for the first time in almost a month. At simply the thought after typing that, my shoulders relaxed and I felt a wave of peaceful hope rush over my body. Thank You, God for sustaining me and thank You that tonight I will sleep (please)!! :)

Thursday Lucas will celebrate the second anniversary of his first air breathing day and we are quite excited as well as a bit flabbergasted looking back over the past 2 1/2-3 years. Our little moose who was once just a tiny peanut (we have an ultrasound pic to prove it!), the sweetest most wonderful little boy whose life has made our lives immeasurably better, he is two years old. How much and how fast and how amazing. I will say once again (though certainly not for the last time) that there can be no doubt of the love of God that He has been so gracious as to entrust to us the Gift of Lucas. We are truly blessed, not only by him and his bountiful joy, but also by all of you who are so faithful in loving him and lifting him up to the good Lord as well. May you all be blessed and filled with joy this week as we celebrate God's goodness in the life our son!