Still chubby, but not so cheeky! Only five days left and he'll be med. free! He's such a ham and was cracking up at the boys Friday. All the boys think he's pretty special. We remind them they are special to us too. It seems I'm always running out of hours too early these days!

So all is well over our way!

Please cont. to pray for Tiff & fam. Looks like Taylor's mom is going to sign over parental rights! We'll see on Monday.

My Sis

Not many of my friends have ever met Tiffany. She's my older sister from Battle Ground, WA. Between the two of us we have 8 children (and an extra). Tyler and Amie are 10 mo. apart in age. DJ will be graduating this year and some of you met Briana when she was out here babysitting for me last summer. Please pray for her - she's entering her teens!! They also have a little 3 yr. old girl that has been staying with them a lot. Her name is Taylor and her living situation needs lots of prayer. God is really working in Tiffany's life and in our relationship these past few weeks and it's awsome. Please pray for her and her family and the little girl they have taken in.

I love this pic because we actually look like sisters! She's always been either a blonde or a redhead. This is the first time we've ever had the same color hair and I love it!

The Rest of the Story

We were ever so grateful to Pastor Cyril for having a prayer night for Evan New Years Eve. We were surprised and touched by the turnout and we felt so much support. It was neat for us to know so many were praying for our family. January 5th we took Evan in for his EEG exam and to see the neurologist. We were nervous. The EEG would show if Evan's brainwaves were still abnormal, or if he was indeed healed. Honestly, it was a battle for me. Nagging doubts kept taunting me. I pushed every doubt out of my mind and had to sing praise songs in my head to keep myself calm. The neurologist looked at the results on the screen with us. We held our breath and it was so unbelievably awesome to see and hear the neurologist say that his brainwaves were that of a completely normal 3 month old!!!!! Praise God!!! We told him of Hank and the church prayer meeting. I'm sure you can guess the response. I have no doubt it was never the medicine.
It was wonderful to call friends and family with the news. I think some were even more excited than us, if you can believe that! Dusty and I were overwhelmed. The whole experience had the hugest effect on his faith!!! It's awesome!
Wednesday Jan. 28th we took Evan to Dorhnbeckers Hospital in Portland to see a pediatric epileptologist that we had been scheduled to see. He was a total nerd and smiled and cooed the WHOLE time! They seemed pretty surprised to see that he was doing so well and to hear that he hadn't had anymore seizures since the Sunday before we left the hospital. They did a thorough examination of all his reflexes, responses, everything. They were looking for evidence of the Infantile Spasms and to see if they had already had their damaging effects on his development. It almost seemed silly to us that we were even at the appointment. We showed the doctor the video of his seizures and she confirmed that they were indeed typical Infantile Spasms. We also told her we believed he had been healed. Thankfully she didn't see the need to do any more tests. He did get his blood drawn again to check one test that originally tested high that had possibly indicated that a metabolic disorder could have been blamed for the spasms in the first place and she suggested another MRI at a later time if any other symptoms surfaced or the spasms came back. She asked if we could bring him back in 3-6 months so they could see how he was developing, they were so curious.
The rest of our trip was great. We stayed with my sister and her family a few days. It was so good to be able to stay there. We were able to take the boys to Chucky Cheeses (Mason had seen the commercial and had been so disappointed there wasn't one in Bend). We had a blast!
Evan is completely off the steroids - I am so relieved! His blood pressure had started getting high so they had us wean him off 2 weeks earlier. Originally we weren't going to be able to start weaning him off the seizure meds until after our March appt. and EEG with the neurologist in Bend but now we start weaning him off next week. That means he'll be off all meds by his next EEG. Hooray!
He is doing great! He is much happier now that he is off the steroids and aside from the puffy cheeks you'd never know we went through all that.
This whole experience has truly shown me how much I still have to learn about my Lord. He is so much more merciful than I ever imagined. He worked a miracle in my husbands heart, and in Evan's health.
So, back to the title of this blog. Pastor Cyril's wife, Renee, asked me if I knew Evan's name was Welsh. I told her I did not. One Sunday she brought me a little name card with the meaning of Evan's name on it. I almost cried. Without knowing it when I named him, the name Evan held a promise that holds a special meaning to me now. God Is Good.

Evan: God is Good Continued

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.

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.

Evan: God is Good

I know the saying "God is Good" sounds kind of generic but right now it encompasses far more than I ever imagined. I have always thought the meaning of names pretty important with each of my children. I honestly have this feeling that their middle names might someday be God's promise about who they are or where life will lead them. (Okay, so I may be a little too imaginative and a hopeless dreamer, who knows?) My third son's middle name certainly came about by a direct answer of prayer. I prayed it if was from God, that without mentioning the unlikely name to my husband, that he would suggest it. I was only a little surprised when he suggested it a few weeks later. My last son arrived earlier than expected and even though I had prayed and searched we had only came up with his first name which I never bothered to look up the meaning. It has always been their middle names I fussed about. We felt rushed and agreed on Michael but the meaning held no particular promise.
On December 16th my perfectly healthy 2 1/2 month old baby Evan started having "Infantile Spasms". After having an EEG to monitor his brain waves we were told he had severely abnormal brain activity in the left half of his brain. It wasn't when he was seizing, it was constant whether he was awake, asleep, and totally healthy looking. We were rushed to the ER so Evan could have a CAT scan and be seen by a neurologist. We were overwhelmed. We knew God was in control and started desperately depending on Him to help us cope with the possible diagnosis. They took blood, did a CAT scan and started him on phenobarbital, a seizure medication. The cat scan showed nothing and so they performed a MRI. God first answered our prayer that he didn't need to be sedated, he peacefully slept through it. The MRI was completely normal and we were overjoyed. God has answered another prayer. I had no doubt that He could heal him. My husband and I continued to pray as did many friends and family. Was he healed already??? Saturday's EEG revealed the same severely abnormal brain activity. Our hearts and hopes plummeted. The neurologist was "hopeful" that with the normal MRI he had a 30% chance of his brain developing with only moderate developmental problems ... if we found a medication to stop the seizures. He didn't respond to the first medication, he didn't respond to the second medication. In fact he was getting worse. The seizures (or spasms) were coming every two hours and were lasting longer. They gave him a powerful medication to knock him out to stop the seizures and prevent damage. They say his seizures were like little sparks that could eventually inflame the whole brain and after time would start causing brain damage. Dusty and I started praying for the strength to accept what limitations Evan might have but were hopeful God would still heal him. We knew we'd love him no matter what and than God would be there with us every step of the way. We knew he'd give us the strength to accept what we could not change and no matter what we wanted God to be glorified.
For my husband this was a huge step in his faith. He had always held back. To me he seemed to change overnight. He became the faithful one and I desperately wanted to take back every promise to God that He could do what He willed with my children. After knowing firsthand how God can hold you ever so close through the hardest of circumstances, I thought I'd always be strong enough to handle whatever came my way, even if it was with one of my children. I was beginning to think God wanted to be glorified through our struggle with Evan's health instead of through healing. Our testimony of God's goodness while raising a child with special needs.
I've always known God's glory is sometimes shown greater through the struggle than through the healing. I thought that's what he always had planned for me, for us. His ways are not our ways.
More on this later.