After starting this blog I researched Infantile Spasms because what I knew only came from what the neurologist had told us in the hospital. I wasn't prepared for the grim details. Infantile Spasms don't have "happy endings," only a small glimmer of hope that your baby will go on to have an "almost normal" life.
70 - 90% of babies diagnosed with this grow to have severe to profound retardation. The babies stop progressing normally and sometimes regress. We saw that Evan had started opening his hands, as do all 2 1/2 mo. old babies before the spasms began. After the spasms we noticed he had stopped and once again kept his fists tightly closed. Especially his right hand, controlled by the left side of the brain. Some babies quit smiling. I could go on and on.
Saturday, Dec. 20th was the longest day for us with the unchanged results from the EEG and the spasms increasing. They kept monitoring Evan's brain waves throughout the day with the EEG. Our friends came and supported us. They were wonderful and we are so grateful. Laughter truly is a powerful medicine.
We ached to be back home with our other three boys. It was so hard being away from them and not being able to hold them. We were so grateful to our family for loving and caring for them while we were gone. It was enough just trying to keep ourselves together. Prayer truly became our only lifeline. It was easy to want to stop functioning, to forget the many other things that had previously seemed important.
The neurologist looked through the pages of EEG results that showed no improvement. He stopped mid scentence when he saw evidence of a horrific seizure and another longer lasting one. He was speechless and very concerned. I told him there was no need to worry, the "seizures" had been caused by our friend James' foot stomping on the EEG wires and two toddlers, Aaron and Kenden, bouncing on the bottom portion of the crib. While we found it comical, the neurologist was shocked to say the least. After he was finished he told us that our only option left was a drug called ACTH. It had devastating side effects and Evan would have to monitored closely. After hearing more about our "options," Dusty and I decided to go for a walk. They needed to take more blood and we desperately needed to get out of the room to breathe. We knew friends and family were waiting to hear how Evan had responded to the last medication and since we didn't have any good news we were reluctant to make any calls. We also wanted to pray about our next decision because we didn't like the sound of that medicine. While we prayed, all I could think of was that I wanted God to send someone to us. I wasn't sure what I wanted or expected. I couldn't even put exact words to what I longed for. I just prayed God would send a "messenger" to us from Him, that's all I could think of to ask for. Later that afternoon He answered my prayer by sending my favorite couple. A man of great faith in God and his wonderfully sweet wife. Just having them there meant everything to me and we readily received their heartfelt hugs and support. They visited with us and Hank prayed for Evan to be healed. It was incredible to me that they had made the trip on horrible roads and home the same day.
Later that evening we found out our co-pay for the ACTH drug was going to be $20,000.00 per vial and we could possible need 6 by the end of treatment. Yes, that is the right amount of zeros. Our other option were steroids with similar side effects, but the treatment might not be as effective. We didn't care, the outrageous amount seemed to be a sort of answer to our prayers. We didn't like the drug in the first place. We knew God would lead us and could heal Evan without the drug.
I still broke down and bawled on my knees in the privacy of the shower that evening. I had been trying to stay hopeful and strong. Dusty told me the next day that he had broke down after I had fallen asleep. He had been so strong for me the whole time.
70 - 90% of babies diagnosed with this grow to have severe to profound retardation. The babies stop progressing normally and sometimes regress. We saw that Evan had started opening his hands, as do all 2 1/2 mo. old babies before the spasms began. After the spasms we noticed he had stopped and once again kept his fists tightly closed. Especially his right hand, controlled by the left side of the brain. Some babies quit smiling. I could go on and on.
Saturday, Dec. 20th was the longest day for us with the unchanged results from the EEG and the spasms increasing. They kept monitoring Evan's brain waves throughout the day with the EEG. Our friends came and supported us. They were wonderful and we are so grateful. Laughter truly is a powerful medicine.
We ached to be back home with our other three boys. It was so hard being away from them and not being able to hold them. We were so grateful to our family for loving and caring for them while we were gone. It was enough just trying to keep ourselves together. Prayer truly became our only lifeline. It was easy to want to stop functioning, to forget the many other things that had previously seemed important.
The neurologist looked through the pages of EEG results that showed no improvement. He stopped mid scentence when he saw evidence of a horrific seizure and another longer lasting one. He was speechless and very concerned. I told him there was no need to worry, the "seizures" had been caused by our friend James' foot stomping on the EEG wires and two toddlers, Aaron and Kenden, bouncing on the bottom portion of the crib. While we found it comical, the neurologist was shocked to say the least. After he was finished he told us that our only option left was a drug called ACTH. It had devastating side effects and Evan would have to monitored closely. After hearing more about our "options," Dusty and I decided to go for a walk. They needed to take more blood and we desperately needed to get out of the room to breathe. We knew friends and family were waiting to hear how Evan had responded to the last medication and since we didn't have any good news we were reluctant to make any calls. We also wanted to pray about our next decision because we didn't like the sound of that medicine. While we prayed, all I could think of was that I wanted God to send someone to us. I wasn't sure what I wanted or expected. I couldn't even put exact words to what I longed for. I just prayed God would send a "messenger" to us from Him, that's all I could think of to ask for. Later that afternoon He answered my prayer by sending my favorite couple. A man of great faith in God and his wonderfully sweet wife. Just having them there meant everything to me and we readily received their heartfelt hugs and support. They visited with us and Hank prayed for Evan to be healed. It was incredible to me that they had made the trip on horrible roads and home the same day.
Later that evening we found out our co-pay for the ACTH drug was going to be $20,000.00 per vial and we could possible need 6 by the end of treatment. Yes, that is the right amount of zeros. Our other option were steroids with similar side effects, but the treatment might not be as effective. We didn't care, the outrageous amount seemed to be a sort of answer to our prayers. We didn't like the drug in the first place. We knew God would lead us and could heal Evan without the drug.
I still broke down and bawled on my knees in the privacy of the shower that evening. I had been trying to stay hopeful and strong. Dusty told me the next day that he had broke down after I had fallen asleep. He had been so strong for me the whole time.
By Monday morning we realized Even hadn't had one seizure since Hank had prayed for him. Dare we hope??? The doctors still insisted we leave Evan on the Valporic Acid (the anti-seizure medication that wasn't working) and the steroid Prednisalone. We left the hospital by late afternoon and Hank reminded me of the verse in James that says to pray for the sick and they will be healed. I read and re-read those verses many times in the days that followed.I had always thought I had strong faith in what the Lord could do. He has answered so many of my prayers I can't even count. Dusty stood firm and felt secure in God's promises through His Word. I don't know why I struggled with doubt. It was the longest two weeks until his next EEG and appointment on Jan. 5th. I clung to God's Word and His promises and worked through my doubts all the way until that appointment.
That is really TRUE! GOD IS GOOD!!! If only we put our trust to the Lord, He will do everything for us. God is faithful to his people so let us praise Him and give glory to the Lord...God bless!
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