Asking for continued prayers

Tyler’s condition is much the same as when we left the hospital nearly a week ago—his tics are constant, he doesn’t want to eat (though he’s getting better at drinking down some PediaSure!), and he frequently complains of pain. We’ve found a medication that really helps him sleep. He’s been getting at least 7 hours of sleep a night since we started that on Monday. He’s still woefully behind on sleep, since there were a couple days last week when he didn’t sleep. Last night, for the first time since we went to the hospital, he actually laid down in the afternoon and fell asleep on his own. He didn’t wake until over 3 hours later! So we are making progress in the sleeping and eating department, but his tic condition is still very distressing.

Sometimes we wonder if his tics are improving—maybe just a little?—then he’ll have another really bad episode. So it’s hard to say if he’s actually showing small signs of improvement or if it’s just hopeful thinking on our part. But the bottom line is he is still doing terribly. He rarely has a break from the tics. The longest break we ever see (aside from when he’s sleeping) is just a minute or two. Annalisa has gotten in the habit of watching his tics and counting the seconds between them in hopes that they will stop. The highest she’s ever counted is 36. Amberlyn also closely watches him. She will stand off to the side and observe him quietly. A couple days ago, she came up to me with a very sad look and said, “Tyler never laughs or smiles anymore.” No, he doesn’t.

We met with the neurologist yesterday, and that was encouraging. She reminded us again that she thinks we can find the right medications that will not just improve his tics but eliminate them. It was an assurance we needed because we were beginning to hope for just a moderate improvement considering how bad it all seems. (At this point even a “moderate improvement” would be a miracle.) Since his current regimen isn’t working, she’s scrapping that plan and starting a new one. We were glad about this, because some of the drugs he was on were quite powerful anti-psychotics. Three of them could be dropped immediately, while two more have to be gradually weaned. So the current plan is to continue the sleep med, add a new med for the tics, and wean off the rest. That puts us at two pills a day (after the others are fully weaned) as opposed to the 15 he was taking. Much better! Please pray that the new med is effective at reducing the tics.

We’ve also had moments of joy and grace in the past week that have sustained us and given us hope. Like when the owner of a vintage toy store that Tyler’s wanted to visit for over a month offered to open up his shop outside normal business hours so Tyler could come and not worry about other customers. Then he discounted what Tyler selected by over 50%. As we pulled out of the parking lot, he came running out with a box full of G1 mini-Transformers to give to Tyler’s brothers and sisters! He said it was “just good business.” I rather think he was mirroring God’s compassion and kindnesses toward Tyler and us all. (BTW, if you are in the OKC area and like Star Wars, Transformers, GI Joe, Star Trek, or any other action figures from the 70s, 80s, and 90s, go visit Steve at Toy Base 10.)

Also, Tyler had a very special visit from a friend, Elijah Kouri, yesterday. His mom, Nancy, offered to check him out of school for the morning so Tyler could have a friend over. They spent time playing with a toy Elijah brought Tyler, looking at the GI Joe’s Tyler had gotten at Toy Base 10, and watching a movie. Though it was hard for Tyler to participate in any activity for more than a few minutes, it was so wonderful to have a friend over, just to share the burden of the sickness. A few years ago, Elijah nearly died from encephalitis. He told his mom on the way to our house, “I’m probably the only friend Tyler has who knows what it feels like for your brain to not do what you want it to do.” So very sweet. Brings tears to my eyes just thinking of it.

There have also been other acts of kindness. The meals and groceries people have brought. The new washer and dryer. The many friends and family who have come over to pray for Tyler and talk with Brian and me. My parents, who are using their vacation days to make sure we have the support we need at home. The offers for financial assistance. The comments from churches and prayer groups all over the country, many of whom we don’t even know, who have let us know they are praying for Tyler and our family.

In the midst of it all, life still goes on. Brian and I have both gotten new work projects in this week. Annalisa is excited to go on her band competition trip to Kansas City this weekend. We get to go to the kids’ school annual Fun Fair tonight. We finally received the first shipment of the DVDs from the Live It conference Brian organized last fall. Last night, Brian and I were able to get away to have a date night together while my dad stayed with the kids. While we were out, Brian gave our waiter a lengthy prophetic word of encouragement. He also prayed for a lady in the mall at The Body Shop who was healed of foot pain and a severe cough. Tourette’s has definitely changed how we go about living our daily life, but it doesn’t change who we are and the things we value most. The kingdom of God is still at hand, even when you and your son are suffering. Even though our son is incredibly sick, we joyfully celebrate the miracle of healing for the lady at the mall. God is still good, and he is still the healer. We refuse to allow our circumstances to tarnish or dull our image of a grace-filled, love-overflowing, all-powerful, miracle-working God. Rather, we pray we are even more filled with awe at his goodness, majesty, and might. He is still King Jesus, and we are still his people called to his purposes.

We are asking that you please continue to pray for us. We are calling for a three-day fast on behalf of Tyler on Monday, Tuesday, and Wednesday of next week (April 29-May 1). If you feel led, please fast with us (food, activities, or anything else you are led to fast from) for Tyler’s complete healing. Pray that we would all experience the sustaining love and grace of God and not give in to worry, fear, discouragement, or frustration. Pray for our five other kids as they wrestle with Tyler’s illness in their own ways. This is a formative moment in their lives, and we pray their hearts and minds are guided by the Holy Spirit, the comforter. Also, pray for Tyler’s comfort and encouragement. He is so patient and kind. He needs to know that God is fighting on his behalf and is his ever-present help in times of trouble. As you pray, please email or Facebook message us any insight or prophetic words you receive.

Thank you so much for taking the time to read this, though I may not even know who you are. We truly appreciate the prayer, love, and support. May the peace of God overshadow you and overwhelm you with His goodness. Blessings to you!