First with the updates. Then with the story.
We have reached the Felbatol end. A two week wean. Thank goodness! I have neglected to mention all the different aspects this one has affected.
Appetite.
Mood.
Sleep.
Interaction.
And most dramatic effect. Regularity. Yep, this boy has had SO much trouble "going".
His seizure presentation has changed as well, but I'm doubting it is the med. It may just be that they are evolving and changing. More on that later.
We have decided against taking him off Zonegran since that has been the only questionable one as far as improvement goes. No, it's not making him seizure free and never has. But, if it improves them, I'll take that for now. I will not allow him to reach his previous dose of 300mg a day. We just increased it to 100mg a day from 50mg. I don't see the need in maxing it out as he was just on this dose and there was no difference between it and 100mg. The side effects were the only visible difference.
We are discussing the addition of Lamictal in the near future. After the Felbatol wean of course. No more big changes at once.
And, I'm glad to report that Sunday, we saw a 70% reduction in seizures.
Now with the story...
Several weeks ago a series of events led me to a renewed faith. I will get into the details another time, but I am different. I am peaceful. Hopeful. And excited.
Yes, I received a particularly tough blow last week with the EEG/surgery news. But, oddly enough, I'm okay.
Since Friday, I have not been angry. Or bitter. Or hopeless. Again, oddly, since I received that "tough blow" on Thursday. And this was before the reduction in seizures.
I'm no longer praying for acceptance of this disorder and of seizures.
I'm now praying for a Healing. And I've never been more accepting of this situation.
I've never in my life seen so many seemingly unrelated events point to one particular thing.
I'm not letting go of this.
And over the weekend, Saturday to be exact, a close friend of my parents came over in honor of Austin and our faith that he will be healed. He laid hands on him and prayed.
Sunday was the day of the 70% reduction in seizures.
It may not be immediate. It may not stop all at once. But, it will eventually. I have peace in that.
I've spent many months praying for surgery. Or that this or that med will be the one. I've prayed for acceptance if this is to be our life. But, not once did I truly, whole-heartedly believe he could be healed without that.
But, I do now.
4 comments:
So funny...Jonathan & I were just talking about this very concept. We buy very much into the idea that what will be is meant to be. And therefore have never prayed for Trevy to be healed...because well...what will be will be.
But then recently we both felt really convicted...because we are not God. We don't know His plan for our lives...or Trevy's...or yours & Austin's. After we talked about it...we both began to pray towards healing.
I don't know what will happen, Holli. I desperately want Austin to be freed from the seizures. But just because I don't know His plans for your lives...does not meant that I can't pray for healing alongside you!
(((((hugs)))))))
...danielle
If indeed you find a miracle, experience one, and it works, I'll be thrilled. Other than that I don't know what to say, and that's only because of my own struggle with the subject of late.
But that doesn't mean I don't hope for the miraculous, for you or anybody else for that matter. I really do, I just can't get my own head around it right now.
Did that make any sense at all? This is supposed to be a supportive, positive type of a response and it's coming across as dumb.
Danielle -I've been struggling with that very thing. What will be will be. Until now. Yes, I do believe He has a plan for us. But, I no longer believe it involves countless seizures. I believe He wants us all to be free from whatever ails us. I think the problem lies in our faith and receiving what has already been given. More on that later!
Ken -It was positive and supportive! I've been angry and bitter and pissy for so long. It's taken me 17 months to accept the thought of this notion. I'm getting there. Not quite there, otherwise I would be shouting from the rooftops that Austin has been healed already. But, I'm working on it. Twenty-nine years of one mindset is hard to completely change overnight. Weeks even.
It is SO very hard to just "accept" that "what will be, will be"....I, too, believe that God has a plan for Colby and all of our kids....I KNOW this....
But it does NOT keep me from being the human being that I am and praying for His plan to include healing for Colby....And for ALL these precious little beings....
Cyndi
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