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!