My Sweet love dove Lucas Walter,
Welcome to the New Year! You went to a New Years Eve party with us at Lyric and Piper’s house and had a blast, spent the night, and the whole next day wtih the Reynolds’ too! We love to have you and your sis with us, so it was nice to be able to celebrate 2016 together. To start this New Year out, on Jan 6th, you started preschool!! It was so surreal and unbelievable to be picking out a school outfit, getting your backpack together (a super cool Blaze and the Monster Machines backpack), buying school supplies etc. You are growing up so fast. In the blink of the eye you went from my snuggle baby, to a toddler, to a big brother and big boy! We made a sign for your for your first day and you said your favorite thing was your monster trucks and you wanted to be a fireman, and a cook when you grow up. Your Daddy and I both took off of work on your first day, so that we could drive you there together. We took a TON of photos (who would have thought?) and then walked you into your school. You were elated to see your BFF Rylie Grace when we got there. There was tons of shrieking (Rylie!) and yelling, and hugging. You were so excited to be in your new school. A little bit later Graham got there too. It was great to see all three friends together again. Graham is in a different class from you and Rylie, but you all did love running around the gym together. Daddy and I went and ran some errands, and ate some breakfast then it was time to go and pick you up. We went back inside and found out from your teacher (Ms. Dawn) that you did great! You were very friendly, with good manners, and nice to other children (oh, and joined at the hip to Rylie!) We were so excited that your day went well. You were sent home with school papers of activities you did that day. You love love love school! We are so relieved and happy, we took you to a celebratory lunch afterwards! After the first day of school, Elyse drops you and Graham off, and then picks you back up after . We’ve been told that Rylie knows exactly what days you go to school (she goes all 5 days, and you go 3 days), and that as soon as you get there you ask “is Rylie Cox here yet?” Apparently you two are inseparable, always sitting next to each other, and doing whatever activity the other one is doing. Best buddies from infancy. So sweet.
This month you also turned 3.5 years old, time is flying so fast. You celebrated Graham’s 3rd birthday with a cool construction themed birthday party, jumping on trampoline, digging in snow and mud piles (it was super warm that day!). You know all the names to all kinds of construction vehicles, frequently correcting me “No Mama, that’s called a front loader!” or whatever the vehicle may be. You love sword fighting and got to spend lots of time with your PopPop and Dammy in duels. You absolutely love pretend fighting with people! You love to play with your sis as well, although she is not very enthusiastic about your roughness. She tries to do everything you do, but can’t quite keep up! But if her bubba has a sword, then she wants one too! And if her Bubba is dancing, then she’s dancing too!
I spent 4 nights away from you this month, and I was SOOOOOO sad to leave (previously I had only left you for two nights when Emme was born). I had a consulting job down in Knoxville, so I went down on a Wednesday night, Daddy was supposed to bring you and Sis to me on Friday night and all of us stay in the hotel together for the weekend, but a huge snowstorm hit (18+ inches in Lexington!!!), and the roads closed down. I was so so so upset to be away from you guys. You did get to ride in Daddy’s coworker’s “monster truck” because Daddy’s Honda Accord couldn’t make it through the neighborhood. I facetimed you guys a lot, and as rough as it was for Daddy to be snowed in for days straight with two kids, it was harder on me to be stuck away from you. I was very home to get back to you guys on Sunday.
Lastly for this month is some serious business we haven’t publicly discussed… on December 27th we starting noticing a verbal tic when you were watching tv. Kind of like a “huh huh huh” sound. At first I thought you were just being an obnoxious 3 year old (sorry!), and I told you to stop. But then minutes later I noticed you doing it again, without meaning to. My heart sank. Sitting next to you, I immediately started googling. I realized you had also been doing an eye tic, which I thought was just dry eyes or something. I continued searching- I found what I feared- the most likely cause of a verbal tic is tourette’s syndrome. Daddy got home and I pointed it out to him too. At this point we had read to not say anything to you about it, because it can make the problem worse. We spent the night in tears, and furiously researching what we could. The very next day I called the pediatrician within minutes of them opening, and had you through their doors within hours. Of course none of the tics presented themselves while we were there, they told us to try to get them on tape, and there is nothing that could be done. I did have them run blood tests to rule out a rare condition called PANDAS (a long shot) that is brought on by a strep infection and can cause these symptoms. The test came back negative.
We went home in fear, knowing something wasn’t right, but not being able to prove it. Our pediatrician (who I love) knows that I don’t overreact easily, so while she did listen to my concern, she did not see the problem, so wasn’t concerned herself. Daddy and I went on chat boards, and researched everything we could. We immediately took away the iPad (said it was broken) and severely limited TV (also said it was broken) as those were clearly triggers for you. Several days later, what had began with a verbal tic progressed to a rapid and very pronounced blinking of the eyes. I found information that possibly it was food allergy related. I made an appointment and took you straight in to be re-tested, it wasn’t allergies. We thought maybe it was eye related, we made an eye appointment, and took you straight in, it wasn’t your eyes. At this point we ruled out strep, ruled out eyes, ruled out allergies. We ruled out every single cause we could think of. We pulled every trigger I had read about. Yet you kept getting worse. Constant blinking, facial grimacing, throat noises, severe separation anxiety, verbal tics. An explosion of terrifying symptoms. We researched, and researched, and researched spending days and nights in tears trying to find what was going on with our previously healthy son. I joined forums of parents with children who have tourettes. Almost all of them agreeing that this was what you had. More terrifying with a tourettes diagnosis was what is called “co-morbid diseases”, the other problems that go along with tourettes such as severe depression, self harming, OCD, oppositionally defiant, ADHD and a host of other ones, all life long challenges that no parents wishes for their child to have. I called back to our pediatrician and said I wanted the referral to pediatric neurology, the pediatrician kindly sent in the referral, we got the appointment at UK, 5 months away. No way in hell we were waiting 5 months. We found a leading specialist at Cincinnati Children’s hospital. Found out he was the director of the Tourettes and movement disorder clinic there. I knew we had found our guy. We had to pay out of pocket for the appointment – we didn’t care, we were taking our son to the best. They were able to get us in within a couple weeks. While we waited you got worse, saying your eyes hurt, using your fingers to try to hold your eyes open, it was heartbreaking. As the symptoms exploded, we began to fear it was something worse than a syndrome like Tourettes, tourettes we can handle, we began to fear it was a brain tumor. I took a video of you, I instantly emailed to a friend at the pediatrician’s office who showed it to our Dr., I also tracked down the email of the Director in Cincinnati (we weren’t even patients there yet!) Our pediatrician wrote back saying that she was surprised by the downhill turn, and she understood why were so worried, and double checked we had scheduled an appointment with neurology. I got an automated response from the director in Cincy that he was on vacation. My heart sank a bit, I knew it was a long shot, but I had emailed up there telling him about you, attaching the video and begging him to tell me if he thought it was something worse than tourettes. If I needed to plant my a-s-s outside of an MRI machine to get imaging, you bet every cent you had we would do it. If I had to beat down every door, we were prepared to do it. Something was wrong with our son. A couple hours later, Dr Gilbert, while on vacation, wrote me back the most appreciated letter I think I have ever received. He said he watched the video, and assured me that he did not think it was a brain tumor or any kind of cancer, he did not think it was an emergency, but he did want us to come in to be seen. The relief we felt was great, if it’s tourettes, fine. So long as it’s not cancer.
On Feb 5th, me, you, and Daddy traveled up to Cincinnati prepared to hear the news of “we’ll have to wait and see, if it lasts a year, it’s tourettes” The best we could hope for was it was mild, and I don’t even want to think of the worst. I had filled out a bazillion pages long questionnaire about you. The Dr walked in, and had read every word of what I wrote. He was so caring and so attentive. He was impressed by all the steps we had gone through to rule out different diagnoses. At the end of the appointment, we braced for what was to come next…. he said “your son does not have tourettes, he had a brain infection that has caused these symptoms. The infection is gone, and he will get better. I won’t see you back here again” WHAT??!? We stared at him in disbelief. I told Daddy to turn the recording on the phone, and asked him to repeat himself. He explained that you had an atypical reaction to an infection (the PANDAS/PANS infection we had ruled out on the first day to the pediatrician), and while it wasn’t strep that caused his brain to malfunction, it was something else). His biggest point was YOU WERE OKAY, YOU WILL RECOVER. We were over the moon. Couldn’t believe what we were hearing. This wasn’t even possible?!? WHAT?! Do we need to run tests? What caused it? How do we know it’s gone? How do we know it won’t return? His utter and absolute answer, No. No tests, we won’t be able to find what caused it, it’s gone now. But how does he know??!? I stare at him. I believe every word out of his mouth. His authority in his words tells me he’s right. Our son is okay, our son is okay, our son is okay. But but but, a brain infection?!? It’s gone, he says. He’s okay. And by god, I am pleased to report, as time went on, that amazing Dr Gilbert was right. The infection (whatever it may be) is gone, he’s okay, all symptoms have completely subsided. Whatever that mysterious atypical illness that attacked my baby was, it’s gone. Daddy and I sobbed when we got to the car. Such relief. We were not even aware this could be the outcome. We had ruled out the infection diagnosis we thought back on Dec 28th, not even 24 hours after I noticed his first tic! That was the first appointment I took him to. We took you to the Newport Aquarium to celebrate. With tears in our eyes we watched sharks, and eels, and sting rays, we sprung for the extra penguin adventure where you got to pet the penguins, because- why not?! Our son was okay! We had a nice lunch! With drinks! Our son was okay!! We made the drive home still in disbelief. Trying not to worry about the “what-ifs”, but so incredibly happy. In the next weeks, we went back to the pediatrician, and they were as stunned as we were about the diagnosis. They had never heard of this strange case. They even went and got other pediatricians for us to tell our story to, and they listened in disbelief. We updated the allergist, and the eye Dr, they too were in a state of disbelief. But our main man, Dr Gilbert, I could kiss him. Cincinnati sent us the $500 bill (in defense of them, insurance may have paid, but we hadn’t met our deductible). I don’t care. You’re okay. Your symptoms have remained completely gone. Your separation anxiety has gone away. We still limit iPad and TV for fear something could trigger a relapse (don’t even know if that’s possible but we’re not taking any chances), but the most amazing news is. You’re okay!! Did I mention, you’re okay!!!! We love you sweet baby boy, with everything we have. Here is a link to the video I sent up to Dr. Gilbert: https://www.youtube.com/watch?v=i98j90sCIVY
