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!

The Long Journey Home

Today has been a transition day for us. Transitioning home. Transitioning to our new life. On the bright side, we were released from the hospital. Tyler was released for two reasons. First, he’s reached the max amount we can safely bump up his meds until a week from now. So he wouldn’t be getting any other medications at the hospital than what we already know to give him now and can do from home. Second, stress exacerbates Tourette’s. So the doctors were hoping that just moving him out the stressful hospital environment would help somewhat. It’s very challenging for Tyler to talk, and while we were at the hospital, when he could talk, all he ever said was, “When . . .  can . . .  I . . .  go . . .  home?” When Dr. Ng asked Tyler if he wanted to leave today, I don’t think I’ve ever seen a more excited and vigorous head nod in my life! He was joyful. And relieved.

However, Tyler is still in a terrible situation. His tic evolves slightly every day. Right now it’s more of a yelling outburst with a jerking of his head. He also often swallows air at the beginning of the tic, which is causing him lots of gas pain. The tics are still constant. One after the other after the other. It never stops. In fact, I would say today it’s pretty darn bad. One of the worst days we’ve had. I tell him all the time how courageous he is. Never does he complain (except to tell us he hurts). Never does he ask why. Never does he get angry. He’s such a sweet, sweet kid.

So now lies before us the long journey of living daily life with a child who has severe Tourette Syndrome. Now that we are home, we are beginning to realize just how big of a task lies before us. How much constant care Tyler needs. How much all our five other kids need extra encouragement now. How difficult it will be to work, to parent, to manage household needs, and to do anything “normal.”

Please continue to pray for Tyler. It’s heartbreaking to watch him go through this. I think it’s hardest when he’s trying to tell us something and we just don’t understand him through the tics. It’s so frustrating for him and us.

God’s grace has always been sufficient for us. He has met us at the point of every need. Right now, it’s hard for us to think past the present, but his grace is here at every present moment. Please pray that we are constantly aware of the grace given us for each moment.

For those who have offered help, we will take you up on it. Message me on Facebook.

Thank you all.

Grateful

Today has been amazing in many ways. First of all, Tyler slept 8 hours last night with only a few brief interruptions!! Yay, Jesus! He also was able to get distracted by some activities here at the hospital for a little while, and the tics stopped for a short, but very significant, block of time. This was the very first time he has been able to experience a break in the unending tics since Tuesday afternoon, so this is great! It means that prayers and meds are starting to work. Also, a new med he started this afternoon seems to make him sleepy. It’s a side effect I’m grateful for right now. He needs it.

Secondly, today we have experienced refreshing in ways we didn’t know we needed. My parents arrived yesterday afternoon, and they took over being with Tyler at the hospital. Brian and I were able to both go out to eat dinner together, spend some time at home with the other five kids, and get a full night of sleep. We took our time this morning sleeping in, catching up on work that needed to get done, and then getting to the hospital in the early afternoon. It was a well-needed break. Also, we had several friends come visit us today, and that was very refreshing. We appreciated their love and prayers.

Also, we were so blessed by people’s practical and financial gifts. Our dryer broke last night, but then this afternoon I got a call from Lowe’s asking me when I wanted the new washer and dryer delivered. Someone had anonymously bought them for us. Also, we found some money in our hospital room and know someone must have left it for us. So, whomever you are, thank you very much. And thank you, Jesus, for loving on us through your body. Also, thank you to the people who are helping out at our house, bringing meals and helping with housework so my parents can focus on just loving on our other kids. They need the refreshing too. This is stressful on them as well—not being able to see Tyler, having their parents’ limited attention, and not knowing how to help.

The support we are receiving is overwhelming. I’m shocked by how many views my blog posts are getting. It’s way more people than I personally have contacted or know, so I realize there are all kinds of people out there praying for Tyler. Friends and strangers alike, thank you all so much for the prayer. This is the biggest component to both Tyler’s healing and the well-being of our whole family. Thank you so much.

I’m also thankful for my husband. He never gives up. He has never given up on me—even though I’ve tested his never-give-up-ness many times. He’s a great dad. And he has a strong conviction about the kingdom of God. When we had the triplets, he said, “I know we will be tired and worn out, but we can’t allow having three babies at once to pull our marriage apart or pull us from the calling of God.” He was right then, and he is right now. Today, on our way to the hospital when we stopped at a Burger King for lunch, he prayed for the lady in the drive-thru. In the 30 seconds we had there, she was healed of severe foot pain. As we drove away, I heard her shouting to her co-workers, “I just got a miracle! I just got a miracle!” Thank you, Brian, that I can always count on you to be who you are. I love you.

Also, thank you to all our Paul’s Valley friends who have chosen to “make the enemy take a toll for what he’s done to Tyler.” Their home group has chosen to spend tonight doing evangelism and praying for the sick, especially because Tyler is experiencing this terrible illness. That’s a kind of giving of yourself that I don’t know how to thank enough. I pray the enemy realizes that when he messes with one part of the body, the whole body fights back. Thank you.

A couple days ago, I said we were waiting on God to do something AMAZING.

He never disappoints.

Thursday Update on Tyler

Well, we are all pretty exhausted right now. Tyler had his MRI today and the results were all normal, as expected. So severe Tourette’s is still the diagnosis. Tyler was able to sleep about 4-5 hours last night. For that I’m grateful, but it’s a far cry from what’s needed considering that gives him a total of 5-6 of the last 58 hours, and the other 52 hours were spent in constant tics. His tics are still just as bad, but the tic is slowly changing. The burping has turned to something more like a dry-heave sound and his voice shouts out with the tic. The tics are one on top of the other, making it extremely hard to talk to us at times. All that convulsing causes pain in his stomach, head, neck, and throat. He threw up last night because of it. The meds also make him really agitated, fidgety, frustrated, and he cries because he gets so upset. Usually that agitation side effect wears off after a while, and then he just asks when he can go home over and over.

The realization that we are dealing with a life-changing situation is slowly sinking in. Yesterday, I was thinking to myself, “We’ll stay in the hospital a couple days, get this kid some meds, and get back to normal life.” Now, I see that there will have to be a new normal—though we still contend and pray for total healing for Tyler. We went through learning about how to deal with new normals after we found out we were expecting the triplets. We can do it again the same way we did it before—with lots of prayer, lots of help, and dependence upon the grace and sufficiency of God.

So many of you have contacted us, extending your thoughts and prayers, and offering help. We truly appreciate it. We haven’t been able to respond to many of you because we are a little overwhelmed right now. Please know that we have gotten your emails, voicemails, texts, and facebook messages. They really mean a lot to us, whether we are able to take the time to personally respond to them or not. For those who have offered help, we probably will take you up on it. My parents came in town today to help with immediate needs. However, we will need other help in the coming weeks. For now, I don’t know what to ask for, so I’ll throw out a message on facebook or something once we know what we need help with.

We've made some videos of Tyler, some of them so we could show the doctors his reaction to the meds. If you want to see what he is and we all are dealing with, follow this link. They are disturbing though, so use discretion for showing to kids. https://www.youtube.com/channel/UC3QYcmH7QiTDT6_poK5jyBg

Thank you all for your continued prayers.

"The Most Dramatic Case"

Today we heard something we never imagined we would hear: "Your son has the most dramatic case of tics I have ever seen in my career." This came from the chief of neurology at Children's, Dr. Ng. 

Tyler's tics are so extreme that he has literally only slept one hour in the last 36, even with meds intended to help him sleep. The noises (they can hardly be called "burps" any more) and jerking are constant. They hardly ever stop. Dr. Ng even asked our permission to film him because his case is so severe. 

So here's the game plan. Dr. Ng still thinks Tyler has an extreme case of Tourette's. However, just to rule out any other possibilities, he is getting an MRI tomorrow. They are also starting him on an anti-seizure medication to try to stop the tics so he can hope to regain some sense of a normal life. The advantage of this particular medication is that they can rapidly increase the dosage as needed until it produces the desired effect without fear of harmful damage that other meds can cause when increased rapidly. This allows us to give him relief faster. The plan is to keep him in the hospital until he reaches a dose that drastically decreases or eliminates his tics. 

So now we wait. Wait for an MRI. Wait for meds to kick in. Wait for tics to stop. Wait for Tyler to sleep. Wait on God to do something AMAZING—which he always does! :)

We will keep you posted. 

Update on Tyler

Hello friends and family,

We wanted to take a moment to give each of you an update on Tyler's health. Many of you know that he started having what we thought were gastro-intestinal problems last September. His symptoms began with constant belching accompanied with lower abdominal pain. Over the following months, his symptoms continued and worsened through multiple trips to the ER, an overnight hospitalization, one scary episode when he blacked out, and every GI test you can imagine, which all showed that there was really nothing wrong with him other than occasional gas, constipation, and acid reflux. When his symptoms started to improve over Christmas break, we began to wonder if they were emotionally based, for there seemed to be no other explanation.

At the beginning of March, our entire family got strep throat. Along with the strep, Tyler's burping started up again full force. (During January and February, they had continued, but at a decreased frequency.) We wondered if it was a reaction to the antibiotic, so we switched antibiotics. After the antibiotics were completed, his strep symptoms were long gone, but the belching and abdominal pain were worsening. Over the last six weeks since then, he has shown a steady decline. The belching has become progressively louder, more intrusive, increasingly painful, and accompanied by a jerking motion of his neck. Eventually, he began missing more school than he was attending. When he did attend school, he had to spend much of the day in the nurse's office because he was either so distracted by his own belching that he couldn't concentrate or he was so loud that it was becoming a disturbance in the classroom to the other students.

Last Monday, we met again with the GI specialist, who immediately noticed the difference in Tyler's "belching" and said he had never seen anything like it and it no longer looked like a GI problem. He suggested we take him to a pediatric neurologist because the belching might be a tic. On Wednesday, we took him to the pediatrician to discuss a neurological referral. When she walked in the room, we could see the look on her face change. Though she had seen him only three weeks earlier, she quickly observed, "This is different. This is much worse. This looks like a tic," she said. "He can't even go to school like this," she continued. We were so relieved that doctors were finally recognizing what we've been trying to tell them for months. Something is wrong with our son.

We were told that a pediatric neurological referral may take several weeks, but the pediatrician promised to do her best to pull whatever strings she had to get him in sooner. A  new but very dear friend of ours happened to have connections with the head of pediatric neurology at Children's and arranged for us to get in to a neurologist, Dr. Chrusciel, the very next day. (Praise God, for that was a true divine connection, and we are so grateful!) Dr. Chrusciel was wonderful. She did a really thorough job of explaining tics, their possible causes, and available treatments. She was also very open to our input and spoke to us in a very understandable way.

Tyler's condition boils down to this: Dr. Chrusciel really thinks Tyler has Tourette Syndrome. There is also a very slim chance that his tics are caused by a strep infection. Believe it or not, strep causes tics in a small percentage of the population. Once the strep is treated with antibiotics, the tics leave. We did bloodwork and found that he does have an elevated strep count, but probably not enough to require antibiotic treatment. Strep is unlikely to be the cause of Tyler's tics for several reasons, including the fact that he's had the tics for over eight months (long before he contracted strep in March) and he's been on 3 rounds of antibiotics during that time. So he may still do a round of antibiotics to rule out strep (she's consulting another doctor to determine that), but she feels it's not very likely to be the causal factor in his tics. Tourette's isn't diagnosed until a child exhibits tic symptoms for a year, so he hasn't been diagnosed with Tourette's yet, but it really looks like that is what we are dealing with.

Tourette Syndrome is basically a problem in the brain that produces tics elsewhere in the body. The tics are involuntary movements and/or sounds that are outside of the person's ability to control or prevent. Tourette's usually first appears in kids around Tyler's age, worsens through adolescence, and improves in late teens or early adulthood. Adults with Tourette's are usually able to live normal lives, often without the assistance of medications. Tyler's tics are particularly bad because, unlike a twitching eye or an urge to touch things, Tyler's tics cause pain, interfere with his ability to live his normal life, and are a disruption to the people around him.

There are a large variety of medications that are used to treat Tourette's and tics. They range from less effective with few side effects to highly effective with high occurrence of side effects. It's just a matter of finding the right combination that works well for Tyler. The problem is that we have no idea how long it will take to find the right meds. So far we have tried 3 different medications in the last week, and none of them have worked for his tics at all. It is very discouraging for him and us.

During the last week, we have continued to see a steady decline in his situation. His tics are getting louder. His jerking often involves his whole upper body, not just his neck. He struggles for 3-4 hours at night to stop convulsing enough to just get to sleep. Then he often wakes during the night with the tic and has to try to settle down once again. He doesn't want to eat anything at all because eating tends to make the tics worse. His pain, which used to be limited to his abdomen, has now extended to neck pain and headaches from the constant jerking. We have also come to the realization, quite sadly, that until a good medication is found, he can't go out in public. He causes a big disruption, and we don't want him to become embarrassed or ashamed. School is absolutely out of the question for the time being. (The school is being wonderful in how they are dealing with it and offering assistance.) Our previous family favorite outings to restaurants or movies are completely out of the question. We can't even go to church right now. 

Last night, we tried a new medication for Tyler, hoping it would help the tics and help him sleep. However, it had the opposite effect on Tyler. He became highly agitated and his tics worsened to the point that it became difficult for him to even catch a breath between the ongoing bursts of tics. We took him to Children's ER, and he has been admitted to the hospital until they can find a medication that will calm him and reduce the tics. Right now it is 8:00am and he has yet to fall asleep and is continuing his painful bursts of tics. He is miserable and hurting. 

Needless to say, we need prayer. Tyler needs healing. Many of you know that healing is a gift and ministry God often uses our family in. We see healings and miracles happen regularly when praying for the sick and doing evangelism. It can be hard at times to see so much happen for others when you pray for them but don't see it when you pray for your loved ones.

We know there is a battle. We live in tension. We know God is good and healing is his will. We are grateful for however healing comes. We won't back down from evangelism or ministering healing to others just because Tyler is sick, because we believe this is the call of Jesus for every believer. We also believe if our family is going to get hit this hard, we will hit back just as hard. This has made us more determined to go after the commissioning of Jesus. We will celebrate all the healings we see, mourn when we don't see them because we know we will be comforted, and continue on no matter what.  We have a deep conviction and we know the kingdom of God is at hand no matter what. Our job is to simply look, listen, and respond to Jesus, and not let sickness or circumstances blur our vision to follow Jesus. So we will continue doing outreaches, living out our day to day life responding to Jesus' commission and training others. We don't believe we earn something for doing this, and we know we will all suffer in this world, but we don't stop responding to Jesus' commission. We are learning to lean into the pain and learning to mourn, knowing we will be comforted.

If healing for Tyler comes instantly through a miracle, we would be grateful and in awe. If God desires to bring healing to Tyler through doctors and medication, we will be grateful! Please pray that we find the right combination and dosage of meds that works for him soon. Pray that the expected side effects would be non-existent. Also, please pray for God's comfort and encouragement during this time. That we wouldn't give room to hopelessness, fear, or discouragement. That we would continue on with God as our focus, not Tourette Syndrome. That all eight of us would come to know the goodness and mercies of God in new and amazing ways every day. That we would continue to have the needed support of the medical community, our faith community, and our family.

We thank you all so much for loving us. We believe in the power of prayer, and we know that each of you care for us and are willing to stand with us as we journey through this situation. Thank you for loving our Tyler and our family. 

Much Love and Blessings, 

Brian and Jeanine Blount

PS-If you want to see what Tyler's tics are like, here's a short clip of what he lives with around the clock: http://www.youtube.com/watch?v=7jVKEiqGkJk. Also, Jeanine has started a blog. If you want to read it go to http://simplyjeanine.blogspot.com

Sent from my iPhone

Brian Blount

bblount@me.com

405-474-0788