Tuesday, February 16th -- Ethan was still having diarrhea so we kept him home from school. He had two small seizures during his nap -- each time they woke him and then he was able to go back to sleep.
Ethan is currently on three anti-seizure medications (Keppra, Topamax, and Phenobarbital). The first anti-seizure medication he tried more than three years ago was Depakote, and this fall we tried Onfi, but that didn't seem to be helpful in controlling the seizures and really impacted his balance and mobility negatively. Our neurologist admitted that Ethan's seizures have reached a severity that she typically doesn't see and that it is time to see a pediatric epileptologist (epilepsy specialist). We asked to be referred to someone in Iowa City, if possible, since Ethan already has his eye doctors there and if we are going to have to drive Iowa City is just as close as St. Louis or Chicago and is a much easier drive. Dr. K. found out that Iowa City does indeed have a pediatric epileptologist, who went to medical school at Washington University and completed his residency there as well, so she felt comfortable in reaching out to him and making a referral. We left the appointment knowing that a referral would be made and that hopefully we would get to have Ethan seen by a pediatric epileptologist soon and that we'd see Dr. K again in May.
It was just after 5pm when we left and headed back home for our 7:30pm pediatric after hours appointment to address the continued diarrhea. Since it was almost 7:00pm when we arrived back in town we went through the drive thru for dinner, filled the van with gas, and then headed to the appointment.
|Waiting to see the doctor at pediatric after hours.|
|Can we go home yet?|
Thursday, February 18th -- We kept Ethan home and by mid-morning I had collected the required sample, which Ethan and I then took to the lab for testing. Afterwards we took a detour to Target because we needed several household items but this mom was also in search of discounted Valentine's Day candy. I had hoped to be able to attend a school district meeting in the evening, but Jeff had to work late, so we simply spent a calm evening at home.
Friday, February 19th -- Around 3:00am Ethan woke up crying and seizing. He was inconsolable and the seizures seemed "smaller" but they continued to cluster, with one ending and then him almost immediately going into another one so we had to once again administer rectal Diazepam. After the medication calmed him down and he fell asleep we carried him back to bed where I curled up beside him where I watched him and prayed until I fell asleep too.
Ethan was pretty sad and tired most of the day and took a very long nap in the afternoon. We found out that thankfully the stool sample was negative for CDiff. We also heard from the neurology department at the University of Iowa and were able to get an appointment scheduled to see the specialist this month! This is sooner than we ever imagined possible, which is a huge praise, because we really want to know we are doing everything we can to try to help get the seizures under control. I hate seizures!
Saturday, February 20th -- We didn't have anything planned for the day, which was good because I woke up with an enormous headache so I was very thankful that Jeff and Ethan were able to play while I rested for a couple of hours. After lunch Ethan took a very long nap and Jeff headed to the grocery store to get a few essentials for us since I hadn't been to the grocery store all week. Ethan didn't have any seizures that we know of but it was pretty clear that something was still off.
Sunday, February 21st -- This morning we did go to church but I ended up bringing Ethan home after Sunday School. He just wasn't acting like his normal self and although he hasn't had a fever or anything I just thought it would be best to go home. Before I left a friend prayed with and for us, which was nice and much needed. Jeff stayed for the worship service and said that it was good. The audio isn't uploaded yet, but you can find the outline here.
Ethan was pretty calm during the afternoon, not as active as he usually is, so perhaps he is still a bit wiped out from the seizure episode on Friday. Although we were a little late we did make it to our small group tonight. Honestly, it would be easier to just stay home, but we never regret going when we do. We continue to be thankful for these brothers and sisters in Christ who God has put into our lives since we moved here. Ethan was pretty restless but several of our friends took turns watching and playing with Ethan so that helped.
The Bible passage that we read and discussed tonight was Ephesians 3:1-13. You can find the passage in the English Standard Version (ESV) translation here, but below is the passage in The Message paraphrase, which uses contemporary language to engage people in reading and understanding the Bible.
1-3 This is why I, Paul, am in jail for Christ, having taken up the cause of you outsiders, so-called. I take it that you're familiar with the part I was given in God's plan for including everybody. I got the inside story on this from God himself, as I just wrote you in brief.
4-6 As you read over what I have written to you, you'll be able to see for yourselves into the mystery of Christ. None of our ancestors understood this. Only in our time has it been made clear by God's Spirit through his holy apostles and prophets of this new order. The mystery is that people who have never heard of God and those who have heard of him all their lives (what I've been calling outsiders and insiders) stand on the same ground before God. they get the same offer, same help, same promises in Christ Jesus. The Message is accessible and welcoming to everyone, across the board.
7-8 This is my life work: helping people understand and respond to this Message. It came as a sheer gift to me, a real surprise, God handling all the details. When it came to presenting the Message to people who had no background in God's way, I was the least qualified of any of the available Christians. God saw to it that I was equipped, but you can be sure that it had nothing to do with my natural abilities.
8-10 And so here I am, preaching and writing about things that are way over my head, the inexhaustible riches and generosity of Christ. My task is to bring out in the open and make plain what God, who created all this in the first place, has been doing in secret and behind the scenes all along. Through followers of Jesus like yourselves gathered in churches, this extraordinary plan of God is becoming known and talked about even among the angels!
11-13 All this is proceeding along lines planned all along by God and then executed in Christ Jesus. When we trust in him, we're free to say whatever needs to be said, bold to go wherever we need to go. So don't let my present trouble on your behalf get you down. Be proud!
Although we were the first to leave, and I'm sure that the discussion continued afterwards, the time that we did have pondering the meaning and the application of this passage in our daily lives as 21st century Christians was thought provoking. Knowing about God's love and the offering of the gift of forgiveness and reconciliation by grace through faith to all people is something that many of us who grew up in the church probably take for granted. However, as we tried to step back and think of what the people during the time of Christ's earthly ministry and in the years immediately following his death, burial, and resurrection, the thought that Jews and Gentiles alike would "fellow heirs" and "members of the same body" must have truly be hard to grasp. The truth found in John 3:16, "For God so loved the world, that he gave his only Son, that whoever believes in him should not perish but have eternal life." (ESV) must have seemed like such a radical and perhaps unbelievable idea/concept.
Perhaps that is your reaction to the Gospel. If so, then I'd like to challenge you to learn more about the how and why of the Gospel. Not sure where to begin? The Story is a short video that will help you understand God's story and how it all began and it will never end. I'd also like to recommend you read It's All About Jesus! and How to Become a Christian. If you do not consider Jesus Christ your Lord and Savior, my prayer is that today your heart and mind would be open to his gift of grace through faith and that you would be forever changed.
- Upcoming appointment with the pediatric epilepsy specialist. Pray that the right medication and/or combination of medications would be found that would help us control Ethan's seizures.
- Sleep study near the end of March to determine whether or not Ethan has sleep apnea. Pray for the test itself, which will likely be very traumatic for Ethan and also for wisdom about the possibility of surgery to remove Ethan's tonsils and adenoids if sleep apnea is diagnosed.
- Ethan's overall health and energy level. PBD-ZSD is a metabolic disease, so his little body is always working really hard and even normal childhood illnesses, such as strep throat, a cold, or the flu can really wreck havoc on him (and us).
- Upcoming GFPD fundraisers: Pound the Pavement for Peter on March 19th in the Atlanta, GA area; Tee It Up! For the GFPD on May 19th in Bloomington-Normal, IL; and the Ilan-a-thon on June 4th in the Baltimore, MD area.
- Potential GFPD fundraisers organized by our family: Our family hosted a couple of successful Pancakes for PBDs all you can eat pancakes and sausage breakfasts before we moved, and we would really like to see if it is possible to revive that as an annual event since we still have friends and family in the Decatur, IL area. We would also like to work on getting an annual Pasta for PBD all you can eat spaghetti dinner organized and started where we live now. Friends --- for these to be successful we will need help!
- Wisdom, guidance, and favor for all the doctors, researchers, scientists around the world who are treating children with PBD-ZSD and/or working in labs to better understand and hopefully discover potential treatment options. Would you consider even praying specifically by name for the men and women who serve on the GFPD Scientific Advisory Board?
- The GFPD's leadership team and all the families impacted by PBD-ZSD.
- Ethan's team -- the doctors, teachers, assistants, therapists, etc. who work with him and want to see him reach his fullest potential.
- Encouragement, strength, wisdom, patience, contentment, joy and peace for Jeff and I as we fight through the daily routines, the uncertainties, and the grief associated with this disease and its impact on Ethan and us as individuals, a couple, and as a family.