Well, we have held off on any posts for a while so that we could truly see the effects of the medicine and God's hand in healing!!!
After just one seizure the docs say that Princess should be dead or in a vegetative state. In the month of May alone, she had 497 seizures. As our neighbor shared today, "and how do people not believe that God still performs miracles?" It is so true! Thank you, Lord for being a God of miracles!!!!
We have seen a huge increase in her seizures this year, she had 574 in all of 2014 and is already over 750 seizures in the first six months of the year. However, since Princess started the new medication, we have seen a decrease in her seizures. Remember that in the hospital the docs said there was nothing left to do, they had used every rescue medication they had. They removed all IV lines, EEG leads, etc., as they were only monitoring her because they weren't able to release her when she was so likely to die! Yes, likely to die. As Princess shared with me, "I am not afraid of dying, but I am so afraid of living!" But, as you know, we asked to be discharged...
The week before starting the new medication, she was averaging over 21 seizures per day. On the new medication, she is averaging close to three per day.
However, we are still taking it very slow as Princess still has a long way to go in the healing process. Walking is still a challenge. Reading and writing are still triggers. Standing for too long has her so exhausted. We still see the extreme tachycardia and are quite puzzled by this.
Since our return we have been able to take a few shorts trips out of the house to "experience" life. Many will see her at the grocery store and state that she looks great and so she must be feeling great. This is pretty far from the truth. It is important to her to get to the grocery store each week for our family. Thus, I get her to the grocery store. She is having to ride in one of those little motorized carts due to physical activity being a trigger for her seizures. Despite all that we are doing to avoid the seizures, she still feels "gross." We learned from speaking to some other families with epilepsy that these feelings are possibly still seizures. However, they just aren't something she is going to take the time to record.
One of the meds that the docs have had her on for a few years, interferes with just about every other medication available. So, we have to be very careful with the dosing of all of her meds. When we left the hospital, she was taking 26 pills/day. Now that we are on the new medication, she has been able to decrease the med that interferes with so much by one pill. She has also been able to decrease one of the meds to treat her tachycardia and she's been able to decrease her thyroid dose for the first time in 11 years! We learned that the new med is an immune-modulator, which means that it is also working to heal her thyroid which is also an autoimmune condition! Thus, she is down to 24 pills!!
Prior to this uptick in seizures, Princess was getting to the point that she would have a certain number of days each month that she wouldn't record any seizures, Yet, she still averaged about 1.5-2/day.
And so where are we now. While the above has stated a little bit about where we are prior to today, we must confess that this day's post is just part of the story of the beginning of the story.
So for the continuation of God's glory, it is in all humility and praise that we want to share that today, (YES TODAY!!!) we have a huge praise to record! Princess has gone THREE days without a seizure!!!!! Praise the Lord!!!! To God be the Glory!!!!
Does this mean that she feels great and can go conquer the world? Not completely....she still isn't able to walk or stand for very long without being completely out of breath She still struggles to find the right words. She still feels gross. However, we are definitely rejoicing!!!! As I have been able to share with some, Princess looks a lot better. You can see the physical effects of the seizures have somewhat dissipated. But we are strong to caution that it doesn't mean all is over. I truly am proud of Princess and her patience level. Moreover, she is listening to God. And why not listen to HIM? What He has accomplished now in two months is amazing. We were, again, at our lowest. Physically, financially, emotionally and even spiritually....BROKE.
Maybe you have been there. Maybe you can relate. Seek the Kingdom of God first, and His righteousness. Oh, how true! When we get this statement and balance in our lives correct, God is able to do amazing things! He is able to bring about order, change, and even healing!
Please take a moment to read Psalm 42 in it's entirety. Don't rush through it. Take a moment to ponder and meditate on David's words in his crying out to God!
And so, we are back home and taking some time to regroup and venture about. While we are still picking up the pieces, we are at rest knowing and trusting God for His provision. My God is faithful. A supplier of all our needs! Praise the Lord for His everlasting loving kindness.
HOPE IN GOD!!!
1 day ago