Andrew continues to have seizures, even on three of the strongest seizure meds. He graduated in May! He has one more internship to finish up his second major. We are so happy to have two ASU graduates. He goes to the doctor on Monday, June 4th, at Duke. We will see the neurologist one more time before we go in July. He should go in on July 10 and stay 7-9 days. We are so thankful that Laura and Whitney will keep Sam this time. The room is so tiny. It is hard to be "trapped" in that room that is overrun with equipment and many people at times. But at least we know more what to expect, once we get into the room. The placement of the electrodes is brain surgery too, a preliminary one. He will spend the first night in ICU. I have a new friend who went through this with her husband, and she has already given me some good information. I have one more person I can contact, but something keeps popping up when I try. I know Pete is the one to spend the night in ICU with him. When he had his accident, I remember thinking I could not do the Duke trip alone. We are trying to think of what we can take that will make things easier.
His last seizure was a week ago on Friday. Sam, Andrew, and I were so excited to go to Event Church in downtown Bristol (on the 18th of each month over the next few months). We were spending the night to have a yard sale with family beside Boulder Look. I had left to take my mom and Sam home. Laura called me just as they had gotten out of the car at my parents' house. I flew back to downtown. The firemen came from the station across the street (Thanks to Cindy for getting them). They gave him oxygen which helped him bounce back fast. Two of my nephews took him over the next two days. He went bowling, landscaping, eating, picking up washers and dryers, and just had a good time hanging out with them. It was the first time a lot of my family had seen him have a seizure. He tried to tell my brother-in-law he was having a seizure, but he could only say his name - Dwayne. And Dwayne instantly knew. Dwayne and Whitney helped him down, so he did not fall or hit his head. My dad prayed for him with all of the others still there. I am so grateful for the help. God shows me that He has it even when I am not there.
Back to Duke. It does make a difference that we will be working with the neurosurgeon's team. I get the feeling it will be much different than random people, like last time, which was hit or miss. He can have visitors, but he may not know they are there. I know Will and Peter are planning to come over the weekend to check on him. I am trying to prepare the "things" we need and to be prepared and peaceful in my heart about all of this. It's tough. I am looking forward to it being over.
If all goes well with that hospital stay and testing, he will have the brain surgery about six weeks later. No dates on that yet. That will take planning. The actual stay may not be as long, but he has a chance of lots of temporary things like paralysis that we need to plan for - if that is what they still say after more testing. We will be asking for and taking all of the prayers people are willing to pray. I don't know what we'd do without our praying people.
Pete is recovering well from the accident. He goes to the ortho again Monday to have his neck rechecked. We had my mom and aunt pull a good sized sliver of glass out of his forehead at lunch on Mother's Day. I got another big piece out this weekend - a month later! We hope that is it. We are very thankful. Dealing with the other driver's insurance has been a pain, and we just got a big list of things to do today. Evidently, no one is in any hurry to get what is needed. No one calls back. It has taken a lot of time and effort that we really don't have right now. The truck is gone. That brought on a lot of tears - the mean person assigned to deal with that. It's like the grumpy lady that comes to Boone yard sales and points out that your stuff is dirty or no good or that no one will want it. So she can get a good price - or stick it in her bag and take it for free! That's what he reminded me of! I cried when the truck was gone. But again, we are very thankful it was not worse.
We have someone in our family who used to read this blog, so I have to be careful what I say. This person is very confused and getting worse. We have a guest indefinitely right now. And that can be very challenging. And add to all of the other. But having someone take time out of their busy day and stand at my office door to pray for me yesterday made all of the difference. Some of the weight was definitely lifted. And the promised prayers by text or messages means everything. We appreciate them all. It's sad to see someone in that state. And it's hard when you are not quite sure how to handle things. When Pete had his accident, lots of people said they'd pray. And we appreciate that. But I really appreciate that ones who say they are doing it right then and just pray on the phone or in person or whatever.
I have lots to plan and wrap up before July 10. We are ready for school to be out. Sam has EOG's this week. It has gotten to me - all of the posts and conversations I have heard. I so wish I could drop him off at school and let him be like the other children and learn. But I cannot imagine sitting to take a reading EOG that you cannot read. But that is exactly what he faced today. This boy came outside the other night to sweep off the driveway and walkway in front of the house so I could go in and watch Jeopardy with Pete and his mom. He appears at the car when I drive up and need help with groceries. He slips up and gives a quick hug even before I knew I needed it. He is just the most thoughtful and precious boy ever. But sometimes I hate that he is so farsighted and left handed and has so many learning disabilities and the diabetes is endless and he is shy and can get very anxious and it's so hard to watch all of that. But then I saw another story on Finn.
And I realized that things could be so much worse. We are working on the reading at ASU. We have not given up. High school is looming soon, and I am praying about that. What is best for him? And I know there are others out there who struggle - the student who has a hard time or the parent watching and trying to make the best decisions to help them.
But I see this family praying for another million or so dollars to be raised so that a clinical drug to cure Hunter Syndrome can finish being made. It has been started, but they are still raising money. There are less than 500 boys who have this syndrome. It is horrible, and I cannot imagine how Finn's parents feel as they hope and pray the money will be raised, the drug manufactured, and see their son cured. Thank goodness they believe in Jesus. I don't know how they would go through this without Him. And I prayed about my "problems" and concerns again and asked God to guide me. And I am praying for Finn and his family. His name is Finn Muedder, if you want to read his story and help with the $15 donations. You can give more, but they are asking 100,000 people to give $15.
I sometimes wish I had tons of money, so that I could give gifts to people who help us or to people who are having a hard time. It is humbling to be on the receiving end of gifts. One day several years ago, my mom pulled a wad of money her church had taken up to help us with some medical expenses. She said she was sorry. That she knew I would rather be a giver than a receiver. But she said that sometimes we need to be willing to be on the receiving end. And it's not because I don't want sickness in my family - that I would pay to have it happen to someone else! When I went to pick up my car the other day, I had to unexpectedly get two new tires because of one nail! It wasn't the end of the world but was one more thing. When I walked in, all of the service people were happy to tell me someone had paid over half my bill! I was so thankful and humbled by that. The list of people who knew was very short, so I know who it was. And that person only did it to be helpful and not to be known or recognized. I thanked her anyway. So I know Finn's family wishes they did not have to ask. But it's not just for their son. It's for all of the boys who have this awful disease and all of those who will be diagnosed. I am thankful to Robin Leonard for sharing and bringing this back to my attention. I missed it the first time.
I am getting the boys' pictures done on Saturday. Pete started grooming Lucy, so she will need to wear a bandanna - because she is on the waiting list for the professional grooming. Part of my boys will only wear certain things, so I have had to really work to coordinate what I have so far! I have wanted this sweet friend to take their pictures since they were very little, so I decided it was time. Before Andrew goes to the hospital and may have a month recovery like last Labor Day. Knowing we got some great pictures will somehow comfort me. I appreciate her working us into her very busy schedule.
This is much longer than I meant for it to be. I am still on the tough journey. Some days it's hard to sing or hard to sing without breaking down and crying a lot. But I will keep on singing. He is right here with me. He won't leave. The days may be tough sometimes, but that is when I can see Him more. You all know me. I cannot do anything. Only through Christ and with God's help does anything of mine ever get done.
One of the guys at church is going to sing this song in the next week or so at church. And I cannot wait! I love the words, so I will share them here. Google it. You will be encouraged too. Thanks for reading and for praying. I am trying not to skip to Thanksgiving or Christmas in my mind and just hang on until then. I want to walk through this year leaning on Him and confidently watching to see what He will do and how He will work (not me) in all of these situations. And there is so much work to do. I sometimes feel like a target, but that is a good thing. I have people on my heart and mind who don't know Jesus. And sharing Him is most important. We are talking ETERNAL investment and decisions. Thanks again!
Do It Again ~ Elevation Worship
[Verse 1]
Walking around these walls
I thought by now they'd fall
But You have never failed me yet
Waiting for change to come
Knowing the battle's won
For You have never failed me yet
[Chorus 1]
Your promise still stands
Great is Your faithfulness, faithfulness
I'm still in Your hands
This is my confidence, You've never failed me yet
[Verse 2]
I know the night won't last
Your Word will come to pass
My heart will sing Your praise again
Jesus, You're still enough
Keep me within Your love
My heart will sing Your praise again
[Chorus 2]
Your promise still stands
Great is Your faithfulness, faithfulness
I'm still in Your hands
This is my confidence, You've never failed
Your promise still stands
Great is Your faithfulness, faithfulness
I'm still in Your hands
This is my confidence, You've never failed me yet
[Bridge]
I've seen You move, You move the mountains
And I believe, I'll see You do it again
You made a way, where there was no way
And I believe, I'll see You do it again
I've seen You move, You move the mountains
And I believe, I'll see You do it again
You made a way, where there was no way
And I believe, I'll see You do it again
I've seen You move, You move the mountains
And I believe, I'll see You do it again
You made a way, where there was no way
And I believe, I'll see You do it again
I'll see You do it again
[Chorus 2]
Your promise still stands
Great is Your faithfulness, faithfulness
I'm still in Your hands
This is my confidence, You've never failed
Your promise still stands
Great is Your faithfulness, faithfulness
I'm still in Your hands
This is my confidence, You've never failed me yet
[Outro]
Oh, You've never failed me yet
And I never will forget
You've never failed me yet
And I never will forget
