Broken

Tyler has spun out of control. Something switched in the last week, and we can’t help but feel like we’ve lost our little boy. He has become highly agitated, frantic, aggressive, and destructive. He little body is a canvas displaying the havoc going on in his brain. His arms, legs, and shoulders are marred with bruises and cuts from thrashing around. His left eye has an inflamed, red scrape caused by a tumble down the stairs. When he gets mad, which is quite often now, he hits and kicks and yells and stomps and throws anything within reach, including furniture. He even hallucinates at times. When I took him for a walk last weekend, he defiantly sat down in the road and refused to walk further because he thought he was going to die because a car had slowly passed us on the road. He’s experiencing double vision and seeing things that aren’t there. While it’s very difficult for him to talk, we can make out a few phrases that he shouts over and over to Brian and me: “You lie,” “I don’t like you,” and “I hate you.” Brian, too, is covered in his own marks from Tyler hitting, kicking, and biting him during Brian’s attempts to keep him from hurting himself or others. These outbursts, which began as much milder and episodic occurrences, are now ongoing and only stop when he has completely worn himself into exhaustion and withdraws to his room. As soon as his energy rallies again, it starts all over. It’s a cycle that has been executed over and over through the last three to four days and doesn’t look to be slowing. Rather, each outburst seems more destructive than the previous.

So we are quite literally in a crisis, and we are forced into some hard decisions. Clearly, Tyler is not safe to himself or others. Yesterday, we spent three hours in Dr. Chrusciel’s office trying to decide what to do. She admitted that Tyler’s situation has eclipsed what she and the team at Children’s are equipped to handle. As we waited in the exam room, Dr. Chrusciel busily consulted with other doctors there at OU, contacted various facilities around the country, and did her best to present some options to us. In the mean time, Brian and my father alternately spent time wrestling Tyler down to prevent him from hurting himself. In the end, we were left with three options: (1) admit him to a psychiatric hospital somewhere in Oklahoma where he would be in a “safe room” and couldn’t harm himself while under the supervision of doctors, (2) transfer him to a specialized hospital out of state that is more equipped to deal with Tyler, but no such facility had yet been found that was suitable or willing to take him, or (3) admit him to PICU at Children’s Hospital to sedate him long enough in a safer environment to make a plan for #1 or #2. All three of those options are with the intent of getting Tyler on more medications to reduce his anxiety level enough that he could then be transferred to a rehab facility, probably in Dallas, that could then work with him with behavioral therapy for his tic disorder. However, he’s not a candidate for rehab till his anxiety level is under control with medications.

But we weren’t happy with any of those options. How would putting Tyler in a psych hospital, separated from his parents and loved ones, help his anxiety? How would a regular hospital help if it still meant us having to physically restrain him from hurting himself, when that’s what we are already doing at home?

From our perspective, the root question is not where should we take him to get him on the right medications to treat the anxiety. Rather, are the medications helping him and therefore we should add more medication to lower the anxiety, or are all these highly powerful meds actually fueling the anxiety, aggression, and inability to communicate? There are two tiers of medications Tyler is currently taking. Operating on the assumption that Tyler has PANDAS, he’s already had an IVIG treatment at the hospital, and he’s taking antibiotics to treat the PANDAS directly (the first tier). The second tier of medications treat the symptoms of PANDAS, such as tic disorders, anxiety, obsessive-compulsive behaviors, aggression, and personality changes. We have seen all of these symptoms in Tyler. However, the meds he’s taking to treat what was initially primarily a tic may in fact be causing or exacerbating the other symptoms. Those are the meds we want to stop. Why add a third tier of medications to counteract the destructive side-effects of the second tier when we can just stop taking the second tier altogether?

I don’t know how many times we’ve heard doctors say over the last six weeks, “I really thought that such-and-such amount of such-and-such drug would have helped him by now, but it hasn’t. So let’s add such-and-such.” Apparently, Tyler’s body doesn’t respond to the meds the way anybody has anticipated or he wouldn’t be in the state he’s in today. I think we can safely conclude that Tyler doesn’t follow the statistical expectation of what a medication should do for a child of his age with his symptoms. With that understanding in place, how long do we continue following a course of treatment that would be quite suitable for most kids when Tyler, so far, has demonstrated that his body doesn’t respond in the statistically expected way?

While anxiety and aggression are symptoms of PANDAS, the inability to talk is not. Since that isn’t caused by the PANDAS directly, how do we know that the anxiety and aggression are not also being fueled more by meds than by disease? The irony of many of these psychotropic drugs is that they can cause the same symptoms they are meant to treat. We just want to know: what is Tyler, what is his disease, and what is meds. Right now, it’s all collided together in an unrecognizable blur that has left us with a distorted, dangerous, frightened child who doesn’t resemble the boy we knew.

This has been the hardest decision we have ever had to deal with. Should we trust the doctors or trust . . .  trust what? I’m not sure what it is that we are trusting. Is it the Lord’s leading? Is it that parental gut feeling? Is it just our desire for hope for any other alternative than the present reality? It’s so hard to judge what is right to do.

The desire for something—anything—other than admitting him to a psych hospital and pumping him with more meds brought us to option number 4. It’s our option, not one presented by any doctor: find a way to safely take him off all the psychotropic medications and keep him at home. Then, at least, we will know what part of Tyler’s behavior and extreme distress is related to medications. Until we get him off them, we will never know. It may be that we realize, hey, those meds were helping after all! But for now, we’ve decided to keep him at home, do our best to keep him safe, and begin weaning him off the meds. The coming weeks will be extremely difficult.

There are several considerations to make during this process. First, how do we keep Tyler, ourselves, our five other children, and our property safe from his destructive behavior? Second, since many of these meds can cause life-threatening problems if stopped too quickly, how do we safely get him off of them? Finally, this plan only works if Tyler is willing to cooperate, Brian and I are all in, and we have lots of help in place.

To address the safety issue, we are going to have to make some creative changes to our home. We have to make a “safe room” for Tyler. Just like they would put him in a padded room under surveillance in a psych hospital, we need to do the same thing here. The problem is we have a two-story house, and he’s already shown that he doesn’t like to stay in one place, and thrashing around while he’s attempting to go up or down the stairs is dangerous. So we don’t have it all figured out yet, but the plan is that my father will help us build a safe room and make it as comfortable and safe for Tyler as possible. Hopefully, it will feel like his special place where he can go to escape when he’s agitated and distressed, not like a prison where we have to send him with locks and surveillance cameras, which will be necessary both for his safety and ours.

Second, regarding the medications, Dr. Chrusciel told us that it would take about six months to safely wean off the medications he is currently taking. Part of the immediacy we felt with needing to begin the weaning process now was realizing that if the current meds were going to take six months, we certainly didn’t want to start more meds which would in turn require an even longer time to wean. Six months seems like an eternity as it is now. Even after the six-month process of dealing with the primary problem of PANDAS, we still would have months after that to get him off the meds intended treat the symptoms that should already be gone. Dr. Chrusciel is working with us on a plan to begin the weaning process, and we are really thankful for her concern and willingness to cooperate with our plan, even though it’s contradictory to her advice. We are starting with weaning Topomax, which is one of the first meds Tyler started and which we suspect is a big instigator in Tyler’s increased distress. If all goes well, he will be off the Topomax in 3-4 weeks, then we can start cutting down on the next meds one at a time.

Finally, this whole process will be very difficult for us all. It will be hard on Tyler who, despite his newly-developed defiant characteristics, will have to cooperate in continuing to take his medications and drink Pediasure. Lately, when it’s time for his meds, Tyler shakes his head no. But after our insistence, he eventually consents. If things progress to a point that he ever begins refusing meds, nutrition, or water, we will be forced to admit him somewhere. I’ve explained all this to Tyler in several of his calmer moments, and he begrudgingly agrees to do his part.

This process will also be hard on Brian and I as we have to physically protect ourselves, our children, and Tyler from himself. It is devastating for Brian to wrestle his son to the ground while his boy spouts out in anger, hitting, and biting. It’s heart-wrenching for me to watch. Last night they writhed in a tangle on the ground all through the midnight hours, Tyler trying to fight his way loose for further destruction and Brian holding on to him to protect him from himself. Both were crying out desperately in tears for help. It is heartbreaking to me that Brian is the one who will bear most of the brunt of dealing with Tyler because he’s the only one strong enough to restrain him. Since I threw my back out last week, I’m in no position to try to physically manage Tyler for a while. It would be easy to become angry with Tyler as he assaults and yells at us, and yet our hearts break for him.

I don’t yet know how our other kids are going to respond. Things have progressed so quickly, and they’ve spent the last few days shuffled around between cousins and grandparents. They don’t yet realize the scope of how bad things are, and to be honest, we haven’t had the energy to even think of how to help them more. My parents will be very involved with the process, and my mom is a school counselor so she will be free this summer to spend much of the time with us. That will greatly help out with the other kids.

Obviously, we need your prayers. Please be praying with us for these things:

1. Tyler’s complete healing, both from the root neurological problem, the symptoms of his illness, and the complications of medications.
2. Wisdom to make the right medical choices for Tyler.
3. The weaning process to go much more quickly and easily than expected.
4. The safety of all of us from Tyler’s destructive behavior.
5. That Tyler would be able to go to sleep at nighttime. The last few nights he’s become highly agitated just as the rest of us have reached the point of exhaustion. We can’t handle night after night with no sleep.
6. That Tyler’s ability to speak would return. He used to love to talk (sometimes more than we wanted him to!), and we think that if he could communicate again, much of his frustration and anxiety could be expressed verbally rather than physically.
7. That Brian and I would have the supernatural resources to love Tyler well, love each other well, love our other kids well, and be more in tune with God through this process. The last few days have been so stressful that it’s hard to even know what to think or do or even notice the needs of each other. We need the Lord’s help just to get through each day.
8. For God’s comfort and provision to be abundant for all the others directly involved, especially our other kids, Annalisa, Amberlyn, Josiah, Nathaniel, and Ashley, and my parents, Jack and Bonnie Spratt.

This Update Doesn't Feel Like Much of an "Update"

We seem to be in a stall with Tyler, so it seems strange to call this an update. Update infers that something has changed, and so far, nothing has. He has OK (in comparison to most) days and he has bad days. He's not in a constant decline like he was previously, but there are also no signs of improvement at this time. He still shouts constantly. He still won't eat, but he gets sufficient nutrition through PediaSure drinks. He sleeps sufficiently, but he usually wakes at least once a night because of bedwetting. (This could be caused by the sleep meds making him overly sleepy, or also because bedwetting is common in kids with PANDAS.)

Tyler is still unable to speak and it is very difficult for him to write or spell out what he is trying to say. This is a bit of a quandry to us. Is it the disease that causes the inability to communicate? The meds? The psychological effect of being trapped in his broken body? A terrible combination of all three? He tries to use words to say what's bothering him, but it comes out as complete gibberish. Sometimes we can make out the first letter or sound of what he's trying to say, but nothing more. When we do convince him to attempt writing out what he needs, it is very hard to read his writing. Also, he seems to have much difficulty knowing how to spell what he wants to say. We've tried downloading an iPad app that has common words and phrases, but he doesn't like using it. I think that's because it would require concentration to learn how to use it, something he's reluctant to do. At times, he will get so frustrated with his body that we can tell he wants to say something about it, but the frustration only compounds his difficulty in writing. It creates a heartbreaking downward spiral that usually ends in tears, loud shouts, and lots of flailing his body around.

We are still working with the current diagnosis of PANDAS and treating him with heavy antibiotics. When we saw our pediatrician last week, she defiantly said with a smile, "Look! I'm writing it on the diagnosis sheet. It's official now. I don't care who gets mad at me about it." However, we are still awaiting some of the lab results which would tell us if the culprit to Tyler's illness is one of the plethora of rare neurological diseases that were tested for while we were in the hospital. But for the time being, PANDAS makes the most sense. The more reading we do and the more YouTube videos Brian finds on PANDAS, the more we say to ourselves, "That's just like Tyler." It also makes us wonder how long he's had PANDAS. Is the struggle he's always had with poor penmanship just Tyler's awkward fine motor skills, or is it a display of one of the common signs of PANDAS? What about the chronic sinus infections—were they caused by bad allergies as we assumed or ongoing active strep we were unaware of? His tendency to obsess over that toy he wants for Christmas or get upset when his brothers don't put things back exactly where he had them—are those just personality traits of a kid who likes things a particular way or the signs of OCD that often accompanies PANDAS? What about the school anxiety he would often experience, especially in first and second grade? Is that just a kid who would rather stay at home with mom and dad, or is that the anxiety disorder associated with PANDAS? Maybe all those things are just Tyler being Tyler. At least that's what we've always assumed. None of it seemed unreasonable or outside of normal kid stuff until we started realizing the close ties between each of those characteristics and PANDAS. Who knows. Only time will tell, but it does make us curious.

We continue learning how to navigate this new life we've been presented with. Between Tyler's needs and his constant involuntary shouting, it's a struggle for Brian and I to get work done. (We are both self-employed and work from home.) The other five kids need us now more than ever, though our ability to meet those needs is more strained than ever as well. They get frustrated with each other and us, but they are such sweet, good kids who are willing to put up with a lot. Also, the stress is taking it's toll on our bodies as well. Brian is having much difficulty sleeping, and I've thrown out my back. Summer is upon us and all the kids will be home all day beginning tomorrow, and we hope they are able to cope well with the challenge of being around Tyler all day.

So, in short, this is the most difficult situation Brian, the kids, and I have ever dealt with in our lives. And certainly, Tyler is suffering more than all of us. Prayers still needed! Thank you.

May God blow your mind today with the kindness he shows through those around you. May you see his blessings in the most surprising and unexpected ways. Lord, come close to all who read this. Let them know your goodness, taste of your mercies, and rejoice in all your kindnesses. May we all be aware of your presence with us today.

Cautiously Optimistic

While Tyler’s condition remains the same, we had reason today to be optimistic. We met a new doctor, Dr. Stanbro, a psychiatrist. When our pediatrician strongly recommended we see Dr. Stanbro, we were a little reluctant. After all, we were already seeing a neurologist for pharmaceutical therapy and were on a waiting list for a top-notch psychologist who specializes in tic disorders. What more would a psychiatrist add to the mix? Besides, when I think of psychiatrists, I envision pill-pushers who put labels on kids like ADD, ADHD and OCD. (My apologies to any psychiatrists out there.)

But after meeting with Dr. Stanbro today, I realized why our much-trusted pediatrician was so emphatic about seeing him. First of all, I could tell he genuinely saw Tyler beneath the shroud of his illness. He didn’t give me an unbelieving glance when I said just a few months ago Tyler was a regular kid with no discipline problems who did well in school, as some skeptical (and uninformed and impolite) doctors have done. Nor did he try to place any label on Tyler other than “Tyler.”

Second, he had a very strong opinion about a diagnosis for Tyler. He said that he had a ton of experience with PANDAS. He did his studies at such-and-such institution in Boston, which I’m sure is quite impressive, but meant little to me at the time. He said my description of how Tyler’s illness has progressed along with his observations of him today made him nearly certain that Tyler has PANDAS. Not only does he believe Tyler has PANDAS, but he also presented a plan for treatment. In addition to the IVIG treatment Tyler already had in the hospital, which Dr. Stanbro said was great, he wants to put Tyler on long-term antibiotic treatment. Like at least six months long-term. Tyler’s PANDAS has such extreme symptoms that he doesn’t think even just the IVIG would cut it on its own. However, he really believes that between the IVIG and the antibiotics, we will see Tyler’s illness gradually disappear month by month.

So while nothing is still certain, we are now working with a doctor who not only theoretically believes that PANDAS could be real and Tyler could have it, but he has experience in successfully treating it. According to what Dr. Stanbro said today, we may not see Tyler return to us overnight like we would hope, but he feels fairly certain that he will return to us over the course of the upcoming months. That prognosis leaves us much more optimistic than the black hole of unknown illness for an unknown length of time. Dr. Stanbro also made a few tweaks in medications, and I feel confident in his recommendations.

Thank you for the continued prayers. Even if Tyler does have PANDAS and we have hope for an end in sight, the next few months will continue to be the most challenging of our lives.

So that’s it. That’s all I’m writing tonight, even though there’s more on my mind, because my birthday is almost over and I want to finish watching the American Idol finale. J Good night all!

Happy Birthday, Josiah, Nathaniel, and Ashley!

In celebration of our triplets' sixth birthday today, I have pulled out this old piece I wrote when they were newborns. If you've ever wondered what it's like to have triplets, here you go! If you are looking for an update on Tyler, you won't find it here. Go to my post from earlier today. Thanks, and happy reading!

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Has the thought ever occurred to you that someone could film any given consecutive 5 minutes of your life and it would be a hit on YouTube? Such is my life as of a mom of six kids, three being triplet infants.

Picture this. I have one baby (heretofore referred to as baby #1) in the kitchen sink to give him a bath. While I am there, I see the pile of bottles that need to be cleaned. I realize that baby #2 will want one of those bottles very soon. So I give baby #1 a one-handed bath while doing a one-handed bottle cleaning, which involves a drop of dish soap, hot water, and vigorous shaking. I manage to do all this while standing on one leg because my other leg is lifted up at a 110 degree angle onto the countertop beside me in order to prevent baby #3 (who has already had her bath) from falling off the counter. It doesn't even occur to me that this is strange until after the fact. 

Every three hours comes around way, way too soon. "Feed the babies every three hours," the doctor said when they were born. That sounded fairly easy at the time—probably because of the pain meds I was on.

Three hours. 180 minutes. Every three hours goes something like this:

• 3 minutes to make the bottles.
• 25 minutes to feed the first two babies the first half of their bottles. (Preemie babies would rather sleep than eat.)
• 6 minutes of burping.
• 5 minutes of trying to wake up baby #1 and baby #2 so they will take the rest of their bottle, then giving up on them in frustration.
• 20 minutes of feeding baby #3 until babies #1 and #2 realize they really do want the rest of their bottles and start screaming for them.
• 2 minutes to quickly burp baby #3 while babies #1 and #2 continue to scream.
• 20 minutes of feeding babies #1 and #2 again.
• 1 minute of giving baby #1 and #2 the lecture about the importance of eating quickly because as soon as baby #3 starts crying to have the rest of her bottle I am officially done with baby #1 and #2. (The lack of sleep makes me think that the babies actually understand what I am trying to tell them.)
• 3 more minutes of burping #1 and #2.
• 15 minutes of feeding baby #3 the rest of her bottle.
• 2 more minutes of burping.
• 4 minutes of diaper changes.
• 6 minutes of clothing changes, which can extend to 10 minutes if I realize the dressers are all out of clean clothes and I have to rummage through the piles of unfolded but clean laundry in the utility room.
• 1.7 minutes to change the bedding the babies have just spit up, peed, or pooped on.
• 2 minutes to take out the trash can full of diapers.
• 2 more minutes to wait on my toddler to find and put on her shoes, because she thinks she has to go with me to take out the trash.
• 1 minute to break up a fight between my two oldest kids.
• 17 minutes of doing miscellaneous things for my 3 older kids that I promised I would do if they would please "just wait until mommy finishes feeding the babies."
• 30 minutes to fix the family some food.
• 3 minutes of listening to the kids complain about whatever I chose to fix.
• I sometimes, but not always, get to spend the next 6.2 minutes eating the meal I slaved over before someone spills something or starts crying. (That person is sometimes me.)
• 10 minutes to gather laundry and start a load, wishing I had done this as soon as I had finished feeding the babies because the last of the burp rags are in this load and I will need them again all too soon.
• 1 minute to pull the clean laundry out of the dryer and put it in a basket. (This is much easier than the 20 minutes required to fold and put away the laundry, but it comes back to haunt me later.)
• 1.6 minutes to do the math to determine whether or not I have enough time to empty the dishwasher and put all 15 dirty bottles in a load before it's time to feed the babies again, then realizing that I passed that critical moment about 6.7 minutes ago.
• 4 minutes to hand wash 3 bottles while promising myself that I will start the next load of dishes as soon as I finish the next feeding so I don't have to do this again.
• The next 2 minutes are spent in agony trying to decide whether I should spend my valuable remaining 17 minutes taking a nap or taking a shower. That is a very, very hard decision.

Well, I really don't have the time to do the math to determine if that's 180 minutes or not, but you get the idea. Interspersed between all of this is my attempt to parent my three older kids while managing crying babies, moving them from crib to swing to floor gym to lap to bouncy seat, and so on. Whatever it takes to keep them happy! Of course, this entire schedule is turned head over heals if even one of the three babies is gassy, fussy, constipated, or has diarrhea. It is a really bad day when all three of them have these problems.

Of course, the babies wouldn't be having as many gassy, fussy, constipated, diarrhea-filled days if I breastfed them. I recently saw an episode of Oprah in which she was interviewing a mom of sextuplets. This mom actually managed to breastfeed 6 babies! I began to think this woman was either a superhero or absolutely crazy. I decided that all of my breasts' super powers were already consumed by my other three children. "Breast is best" is what doctors, dieticians, and Oprah say.  I whole-heartedly agree—as long as the number of babies does not exceed the number of breasts. 

Lack of sleep is an issue for any mother with a baby. But it compounds exponentially with every additional baby. It takes about one and half hours to do a feeding-burping-diapering-cleanup cycle. That is followed by rocking, walking, and crying with the one fussy child who won't go back to sleep. In dread, I count the minutes I have left until I have to feed them all again. That gives me approximately 27 minutes of sleep per night. OK. That was an exaggeration. But that's what it feels like.

Have you ever fed a baby a bottle with your foot? I have. It's really not as hard as it sounds. It is possible to feed three babies at once. I only attempt to do this if all three are screaming at the same time. The time which you save by feeding three at once is lost in the clean-up time which comes in tow. When feeding three at once, it is harder to take time out to burp them. So the result is a much greater volume of spit-up, which means doing more laundry and scrubbing a couch. 

OK, well it's not as bad as it sounds. I really do get a lot of help. Most thirty-something's like me would cry at the thought of having to move back in with their parents. Even more crying would result from the prospect of your parents moving in with you. However, when you have three kids and find out you are expecting triplets, an exception occurs. You become ecstatic at the idea of your mom moving in with you for three months, then you cry when she leaves. 

Help comes in other, very unusual ways. Have you ever had a strange grown man come to your door unexpectedly, saying that he goes to your church and that he knows your husband, offering to do whatever he can to help, and then you excitedly take him up by showing him to the lawn mower? I have. Maybe I should start running background checks first. Have you ever given a basket of dirty laundry filled with who-knows-what to your cousin so that she can give it to a lady in her church whom you have never met? I have, and I'm glad to say that the laundry was returned in tact and clean. Have you ever accepted a meal from a complete stranger just because she said she was a friend of a friend and heard we needed help? I have. We prayed against any malicious food poisoning before we ate it, so we felt safe. Have you ever let in a complete stranger who looks sweet and says she is here to help babysit your kids? She says our friend so-and-so sent her. I have, and I am glad to report that she has turned out to be a huge blessing and a newfound friend. 

You may be wondering, "If it's as difficult as she says, how did she find time to write this silly essay?" The answer lies in my newfound ability to make mental notes. I can't make real notes when my hands are full of two babies, laundry, and a dirty bowl, for example. So I spend my baby-feeding times taking these mental notes, which are not as easily kept track of as real notes. However, I have managed to compile the highlights of these mental notes and use my un-busy second foot to type out this description of a day in my life. 

Many people have said to me, "One day you will look back on this time of your life and laugh." But it occurred to me that if I wait for "someday," I will spend a lot of years upset about my life. I am so blessed to have this family. I am making it a point to laugh about it now while the emotions are deep and sleep-deprivation is fresh—to take joy in the blessing God has entrusted me with. I'd rather laugh and cry and get excited and get mad right now while I'm squarely in the big fat middle of it than go through it like a zombie and wonder where the time went. As a good friend of mine (actually, several good friends of mine) say, I want to be present during my life. So thank you for reading my attempt to be present.

At Home and Waiting

It feels good to be back at home. We were discharged from the hospital yesterday afternoon, and now we are left to navigate this wilderness on home territory. Sometimes I wonder if all the times Tyler tells us he wants to go home, he’s actually saying he wants to go back to what he once knew as home, a place of safety where the world seemed more certain. We all wish for that.

Tyler is still struggling all the time. The medications have him more calmed down physically so that, unless he becomes really upset, we usually don’t worry about him hurting himself. He’s getting pretty good sleep. But the shouting, random noises, and head movements are still constant. He’s also really complaining of a stiff and sore back (likely from yesterday’s spinal tap), and he’s dealing with quite a headache. While running some initial tests on Tyler’s spinal fluid yesterday, they found elevated levels of white blood cells. While technically this means he has meningitis, it’s not the viral or deadly bacterial kind that can be so detrimental if contracted. It’s most likely just an inflammation caused by irritation from the IVIG treatment. So that’s what is causing his headaches, and they will subside soon. The doctors weren’t at all alarmed by the elevated white blood cell count, and still felt confident in letting us go home yesterday.

So now we wait for news on Tyler. The blood and spinal fluid tests may take several weeks to a month to get all the results back since they have to go to specialized labs that test for the gamut of rare diseases that Dr. Chrusciel ordered. Also, she assured me that while the IVIG treatments sometimes show quick results for kids, it may take three to four weeks for Tyler to show improvement from the IVIG, if he even will show improvement. So lots of waiting lies ahead of us over the next month. It’s hard to know how to move forward when we aren’t sure what we are dealing with. However, regardless of what news the next month brings, it will feel good to know something.

In the meantime, we are making some hard adjustments at home. We now have a disabled child, and that is traumatic in many ways for all eight of us. Brian and I get stressed out and frustrated. Just when we want to get some rest or try to chill out for a while, we realize that we have five other children who need us now more than ever. The four little ones are struggling in their own way. For them, it comes out as “He just called me a weenie-head” followed by “But she stuck her tongue out at me first.” While some of this is the expected part of any busy household, the unending-ness of it is simultaneously grating and an indicator that they are struggling for attention and affirmation while they realize their lives have been turned inside out, too. Also, the noise level in our house is stressful. When Tyler is resting, everyone whispers and tip-toes around. When he’s awake, we all have to yell at each other to be heard over Tyler’s yelling. It’s a stressor that is hard to deal with because we know Tyler can’t help it, but the rest of us can’t help but become irritated by it. Simple things have changed, like we can’t answer a phone when it rings because we wouldn’t hear or be heard over Tyler if we did answer it. Good thing most people can communicate with us by text!

Last night, Amberlyn (age 7) said to me, “Why doesn’t Jesus heal Tyler?” It was heartbreaking to hear, and I wasn’t sure how to respond. Every one of our children has seen Jesus heal people and know Jesus in that way. My response to her was the same thing I hold on to every day. “I don’t know why this has happened to Tyler, and we may never know. But I know Jesus is good and he loves Tyler. He doesn’t want Tyler to be sick, and he hears every one of your prayers for Tyler. I don’t know why Jesus hasn’t healed him yet, but I do know this. That God has amazing plans for Tyler, and somehow God is going to use this sickness and turn it into something amazing.” Even as I write it, it seems so inadequate for the depth of her question, but I also know it’s true.

Jesus is healer. Jesus is good. Jesus says he’s got this one.

I believe him.

Meet Tyler Blount

In the last few days I have gotten a few Facebook messages from people asking basic information about Tyler, like how old he is. When I started this blog, it was with the intention of just keeping our close friends and family informed, and also writing it has become my outlet to process this ordeal personally. But now that I’ve had nearly 9000(!) page views on the blog, and I have added many new Facebook “friends,” I realize there are many of you following Tyler’s story and praying for him who know nothing about him.

So, I’d like to introduce you to Tyler Blount. He is ten years old and was in fourth grade at Will Rogers Elementary School. He has a twelve-year-old big sister named Annalisa, a seven-year-old sister named Amberlyn, and two triplet brothers named Josiah and Nathaniel and a triplet sister named Ashley who will all turn six on Tuesday. His daddy is his favorite person on the earth. He loves playing video games on his 3DSXL or Wii-U, and he collects “old” toys from the 80s, like G1 Transformers and G.I. Joes. He’d rather spend his afternoons making inventions in the house with ropes, springs, and anything else he can find than participate in sports. He can beat his dad at chess, and he loves talking so much that sometimes I have to tell him he has to stop so we can all go to bed. He gets mad when his brothers mess with his toys without asking, and he doesn’t like to play rough or wrestle around like they do. He’s the best math student in his class and a whiz at fractions, but he doesn’t like reading, unless it’s a graphic novel. He’s been best friends with Levi Kimbrough since they were babies together in the church nursery. Tyler loves when Levi spends the night and they spend all weekend watching super-hero movies and playing two-player Minecraft, an online game where they mine for resources and use them to build cool things. He is sweet and kind, and he sees beauty in the most down-trodden and forgotten people. He is highly respected at school, and when his teacher taught about different types of people and ways of viewing integrity and morality, his own classmates unanimously placed Tyler in the highest category of “world changers.”

Tyler has been such a trooper through this entire illness. He rarely complains, and he is more patient than any of the rest of us. He gets frustrated and sometimes cries when the tics get out of control or when he’s trying to say something to us and is unable to communicate. He wants to understand everything the doctors say, and each time a doctor leaves the room he moves his hands in a talking motion, his sign to let us know he wants us to explain. While he is currently unable to talk, he understands everything that happens around him, and he dislikes it when people talk about him in front of him as if he’s not there.

This is day four of our second hospitalization. He’s spent the last two days doing an IVIG infusion treatment. It’s a bit of a shot in the dark, but if Tyler does have an auto-immune disorder called PANDAS rather than severe Tourette Syndrome, then the IVIG could eliminate Tyler’s illness within a few days. So far, the side effects of the IVIG have been fairly minimal, except he’s dealing with quite a headache. We also have a spinal tap scheduled for tomorrow morning that will test for other rare neurological illnesses that would have been missed by his MRI last month.

Tyler is now on a pretty good regimen of sedative medications that keep him calm enough that he’s at least not constantly flailing around and putting himself in potential danger of injury. We’ve had a couple bad episodes yesterday and today, but he’s spent most of the time pretty tired, which is a very good thing for the time being. Yesterday he took a four-hour nap, and except for the headache he dealt with all night, he slept well through the night. As long as Tyler continues to do well, we should be discharged tomorrow after he wakes up from the spinal tap and feels well enough to make the trip home. We’ll go home with the prescriptions for the same sedative medications, and over the next few weeks the SSRI we added will accumulate enough in his system to help calm him, and we can then safely back off the sedatives. As much as I don’t like doping him out with meds, we really have no choice for now since the alternative means he could injure himself badly.

Brian and I also experienced a real breakthrough of another nature with Tyler today. Over the last ten days or so, he has lost the ability to talk, and we have resorted to charades and occasional typing on the computer (though typing frustrates him for some reason). Brian sat down with Tyler this afternoon at a point when he was really frustrated, crying, and flailing around wildly. They made a deal that they would both agree to be patient with each other, no matter how hard it was. Then Brian embarked on asking Tyler a bunch of questions about his condition. It was very difficult to communicate, but the more Tyler started realizing that we were understanding him, the more he calmed down and the more he started really working with us to help us understand. He was able to communicate to us (through a bunch of yes-and-no questions) that the shouting, blabbering noises, and head thrusts are all part of the tic. When he flails his arms and legs around, that is because he is frustrated. It doesn’t always mean that he’s frustrated or angry in his emotions; sometimes his body just gets extremely agitated and it comes out in the flailing motions. But he can tell that those movements are different from his tic. He can’t make the tic stop, but if he tries very, very hard to be patient, he can control the flailing around. However, if he becomes upset because the tics are out of control or he’s trying to say something and isn’t being understood, it’s hard to control the flailing because he’s so frustrated. He also didn’t know something we knew: that his ability to speak would return. He was very scared that he would never be able to talk again. When we explained to him that Dr. Chrusciel and the others had assured us that his ability to speak would return, he was very relieved. He was much, much calmer after that conversation. We were able to understand his condition in a new way, and now we know how to help him better. It was a blessing for all of us.

Thank you for all the prayers for Tyler and our whole family. We really appreciate them.

May the peace of God overwhelm you. May you taste of his goodness and mercies in ways you never imagined before. May you be aware of God’s presence and activity in every moment of your life, and may you walk in the destiny he has for you. Blessings on you all!