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A few weeks before Christmas, one of my friends graciously hosted an evening for a few gals and all our kids to get together and decorate Christmas cookies! As I often do with many things in my life, I romanticized the idea of it. When we started talking about it, I imagined all of us smiling and laughing as we sported holiday aprons and rolled out sugar cookie dough. In my fantasy, all the kids were having the time of their lives and enthralled with the sprinkles and food coloring, creating the cutest and most delicious Christmas goodies there ever were.

What really went down looked a little different than that. The kids worked on about one cookie each before abandoning their posts at the kitchen table for toys and games in the playroom instead. In the playroom, Caleb promptly bit one of his friends and had to be quarantined in time out. When I asked him why he bit, he simply replied “because I did that.” Classic 2 year old logic. Without the help of our children, we forged on to make cookies, puppy chow, Oreo balls and more. Once in a while, a kid would pop in to empty an entire food coloring tube onto one cookie or enthusiastically cover the kitchen table with sprinkles. It was crazy. And it was still just as wonderful as my unrealistic fantasy.

At the end of the evening, in the wake of disastrous kitchen, I thanked my friend so much for hosting. Granted, my kitchen wasn’t the one destroyed which might make it easier to say this, but I told her, “This is my happy place.” In the midst of chaos, kids running around like wild animals, creating something with our hands, letting the rules slide (WAYYY too much sugar was consumed that night), and not getting worked up or stressed about any of it. All of it just made me smile, even if it looked a little different than we had originally planned.

A few days after Christmas, those same feelings were echoed when I had a house full of kids in my own home. A friend had to go back to work while her kids were still on Christmas break, so they came to hang out here with me and the boys. I was outnumbered 5 to 1 with kids ranging in age from 2 to 6. The day included coloring, race tracks, playing outside and only a few time outs. It was chaotic and fun, just like our cookie decorating night. There’s just something about things being a little messy and on the verge of out of control that makes me feel content.

When I was working full time, and the busiest part of my year would approach, Evan could sense my stress level rising. He would always comment on how weird I was, because the busiest and most stressful part of my job was also one of my favorites. Looking back, it was probably due to that part of my personality that thrives on a little bit of chaos.

As a parent of a child with a disability, I’ve heard over and over how ‘God only gives special children to special parents’ or some version of that same sentiment. No offense to anyone who has expressed that to me, because I know it’s coming from a place of love and support, but honestly it’s always rubbed me the wrong way. The fact that my son faces extra challenges doesn’t make me any more capable as a parent. But perhaps there is something to the idea that some parents are uniquely suited to care for their kids. Maybe coping with chaos is a strength I’ve fine-tuned over the years so I can put those skills to work taking care of my sweet boys. Or maybe it’s just a survival tactic???? Either way, I’m content to sit right here in my ‘happy place’ and soak it in. All of it—the joy, pain, messiness, crazy schedules and love, oh so much love!

“Not that I speak from want, for I have learned to be content in whatever circumstances I am. I know how to get along with humble means, and I also know how to live in prosperity; in any and every circumstance I have learned the secret of being filled and going hungry, both of having abundance and suffering need. I can do all things through Him who strengthens me.”
Philippians 4:11-13

The Christmas letter I wrote didn’t make it in the mail like I had planned, so I thought I’d share it here instead. This way I can include more pictures than would fit on one page! Merry Christmas everyone! 

We’ve had another great year in the Wingo household with oh so much to be thankful for. After a little R&R, we got back in to our normal routines of school, work, and therapy. In January, I was blessed with the opportunity to share our story at the Tipton Prayer Breakfast. Gage did his first round of intensive OT in February and was a rock star. The swing was his favorite part. Caleb liked to tag along and get in on the fun when he had the chance. March was our 5 year wedding anniversary so Evan and I snuck away for a quick trip to sunny (but chilly) Florida. It was unusually cold for that time of year, but we still enjoyed a few days to ourselves and lots of tasty seafood! In April, Gage started hippotherapy at Dynamic Strides and for the first several weeks, he HATED it! But with enough time, he came to love riding a pony named Coco, and now he rides the pony in black, Johnny Cash! In May, the boys and I had an adventure in Washington DC! It was the first trip there for all of us, and Caleb’s first time on a plane. While there, we enjoyed lots of sightseeing and had a chance to advocate for early childhood resources for families like ours.

Summer is always a favorite time of year as we celebrate the whole family’s birthdays! This year’s celebrations included a luau, lunch at Lambert’s, swimming at Table Rock Lake, the boys’ first trip to the movie theater and a party at a splash pad!

We also took a family trip to visit friends in Arkansas and spent lots of time outside swimming, swinging, playing at the park, painting and more! Gage had another round of intensive therapy and Caleb took Spanish lessons! By the time August rolled around, we were gearing up for first days of school for all three boys. Evan started his 13^th year of teaching, Gage returned for year 2 at Shining Stars, and Caleb started school a few days a week at OTC’s early childhood center. He loves it and has learned so much! I’ve continued working from home part time for OPT.

This fall, Evan returned to Vegas for the SEMA conference and the boys and I enjoyed Halloween indoors, dressed as Cookie Monster, Elmo and Big Bird! Caleb really liked trick or treating. In November, Gage got quite a treat and received an adapted ride-on car from Go Baby Go! He can sit in it and drive it all by himself, which he loves and it’s awesome!

The week of Thanksgiving, Evan took a hunting trip during his time off work, we ate multiple Thanksgiving meals with family and friends, and I had a blast putting up Christmas decorations with the boys. Caleb loved every single ornament that went on the tree. He took a very“hands-on” approach to the decorations this year. In less than a day, the angel from the nativity set was missing her wings and one of the wise men was headless.But a little super glue has them looking good as new. I love that Caleb is so into the “kiss-uh-miss” season. His version of Jingle Bells is pretty sweet too. Christmas came a little early for Gage when his “talker” arrived in early December. I can’t wait to see how his communication develops over the next year.

Looking back on all the memories we’ve made over the past year, it’s clear that our year was very full. Full of appointments, activities, unique challenges and more, but also full of so much joy! We are reminded during Christmastime, and throughout the whole year, of all the wonderful blessings in our lives. We look forward to celebrating the reason for the season and spending quality time as a family. We’re hopeful for more good things to come in the New Year! May your holidays, and your hearts, be filled with love, gratitude, peace and joy.

Merry Christmas from the Wingos!                                                   

I was lucky enough to spend the past weekend with my mom and sisters at the Lake for some rest and relaxation. It’s a new annual tradition we’ve started after my mom retired last year and it is WONDERFUL! We get together and eat too much, take it easy, catch up and just enjoy each other with no other distractions (a.k.a. no kids).

I was the last to arrive at my parents’ cabin Friday night and was greeted at the door with hugs and a glass of wine! We had a little time before our dinner reservation and all exchanged small gifts with each other. I was thrilled to get a new pair of Christmas socks, a 5 year journal and some lip gloss! But we shared more than just gifts. Sitting around the table together, these sweet women shared their hearts. And it was beautiful. They seemed caught off guard by the tears that sprung up as we talked about our weeks and chose our favorite bible verse cards. I, on the other hand, am used to spontaneously crying at the drop of a hat! Something my sister Lee said really made an impact on me. She attended some diversity and inclusion training at work, and had a get together with friends recently, all which left the same message on her heart, like God was telling her the same thing over and over. That we are the light of the world. We are meant to shine in dark places, all places.

I can’t remember exactly how Lee articulated that message, but what a great reminder! I think it’s so easy to get caught up in our own little world, especially with the busy and hectic lives we lead. Sometimes we’re so focused on our routines or to do lists that we forget to engage and share with others, or ‘let our lights shine,’ if you will.  I thought about her message in another way too. That ‘light’ can radiate from unexpected places, like the smiles and laughs of children. I could never have anticipated the positive impact that Gage, just by being himself, has on so many people around him. He’s loved by so many and shines his light and shares his joy in the purest, simplest ways. Maybe the rest of us are overthinking it and making it too complicated.

Another phrase that ‘the light’ brings to mind is a note I saved in my phone the first time I heard it, “The wound is where the light gets in.” I guess that quote is actually Jason Gray’s version of another from the poet Rumi, and he also has a song by the same title. I won’t be able to put it as beautifully as he did, so you can see his story behind the song here. And if you’re a music lover like me, listen to the full song here. Essentially, his message is that the hard stuff makes us better versions of ourselves as we work through the healing process. I just really appreciate the thought that our challenges and struggles can be worked together for good, even though they may break us. I’m not sure the healing process for our wounds is ever complete. I think it’s ongoing, and we can have setbacks and triumphs along the way. But if we can find a way to keep sharing and letting others in, and ‘shining our light’ through the journey, not only will we benefit, others may as well.

This week, I had a unique opportunity to share with students studying to become therapists. I love that their teacher wants to give them a parent’s perspective, and a peek into our real lives, as part of their training. When I was asked to be a part of this class presentation by another mom several weeks ago, I excitedly agreed. But I have to admit, as it got closer, I started to think of all the reasons I didn’t want to do it. Caleb would have to tag along, Gage would miss another morning of school, I’d have to drive out to Ozark instead of staying in town. But I was going to stick with my commitment. Then, things started falling into place. A friend not only kept Caleb for me that morning, but made me a delicious cup of coffee for my drive, (which was quick and easy) and fed me lunch after! In the class, I shared about our experience with Gage, then he got down on the ground and showed off his rolling skills on the mats on the floor. Each time he made it from back to belly, the whole class cheered and Gage would bust out into laughter and share a proud smile. Talk about shining a light! The students shared in his excitement and Gage LOVED all the attention. When we had fielded the students’ questions and wrapped up our presentation, the instructor came over and prayed with us and our kids and spoke the most beautiful words about all of us being children of God. Thinking back on the day, I realized all the blessings I would have missed out on if I had said no, like an offer of help from my friend and a welcome prayer from a stranger.

If sharing our story is one way I can shine a light in this world, I’m happy to do it. Gage’s light shines where ever he goes. And so often, we benefit from the ‘light’ and kindness of others. What I’m most grateful for is the source of that light…Jesus! The same one who’s healing the wounds where the light gets in and working things together for our good.

“Again Jesus spoke to them, saying, “I am the light of the world. Whoever follows me will not walk in darkness, but will have the light of life.” – John 8:12 

Last week we had the incredible privilege of receiving a ride-on car for Gage through the Go Baby Go! Program at Missouri State University. I’ve heard about the program before, which adapts vehicles for kids with mobility issues so they can sit in them and drive them independently. To my knowledge, this is the first time the program was available in Springfield though. I was excited for the opportunity to participate from the first time I heard about it, but I couldn’t have imagined how awesome it would be until we actually experienced it.

When we arrived and were waiting to be matched with our team of OT and Speech Therapy students, we were hanging out with all the other families. I would notice a mom and child who I only “knew” through Facebook connections and excitedly introduce myself and Gage. It was so nice to meet people in real life whose stories I’ve followed or whose advice I welcome via the internet. I told several MSU students and faculty that the day felt like a reunion of sorts of people I had never met in real life! There were also a few familiar faces of other kids and moms who we’d met through previous therapy sessions, etc. and seeing them there, excited like me, was so much fun!

A team of 5 eager students introduced themselves to us and took us back to see Gage’s car…a sweet SUV with shiny “chrome” wheels and his name on the hood! It is so cool! They wanted Gage to sit in it so they could get an idea what kind of adaptations would be needed to make it work for him. With Gage’s excitement level, his extension and tone were in full force. Getting him to sit down on his bottom was the first challenge, but once we wiggled his little booty down into the seat, the students could brainstorm how to make it supportive enough for him to sit independently. They were so wonderful to think up ideas and take input and suggestions from me and make them a reality. Once Gage realized he could drive the car himself by pushing a big red button on the steering wheel, he was happy to stay seated and make it GO! But he had to get out so the OT students could do more work, adding lateral supports and a taller head rest and harness.

Gage moved back to his wheelchair and was perfectly happy to soak up all the attention from the speech therapy students who helped him finish his lunch, blew bubbles and played all his favorite songs for him on You Tube. As they continued working away on Gage’s car, one by one, the other kids’ modifications were completed. Out of the corner of my eye, I’d catch a glimpse of a pink sports car zooming past the open door to the hallway, with the happiest little girl you’ve ever seen in the driver’s seat. The joy on all the kids’ faces when they took off was priceless.

Gage’s was the last car to be completed. He was totally patient throughout the process (again, because of all the attention being showered on him) and the wait was well worth it! Once we got him back into his car, I was so impressed how great the seating worked for him. Who knew what some PVC pipe and pool noodles could make possible? Gage was thrilled to take off, and nearly ran straight into a table, but one of the OT professors made a diving leap to keep him safe! That prompted a reminder about the emergency off switch on the back of the car. It also has a remote control so Gage can sit in it while I drive, but I have a feeling he won’t let that happen very often. There’s even a cable to hook up a phone or iPod so he can rock out to his favorite tunes while he’s cruising! They really thought of everything.

When we got home that afternoon, we immediately got the car out and Gage showed off for the neighbor. Of course, Caleb had to take it for a test drive as well. And when Evan got home from work later, Gage loved cruising around the cleared out garage. Sunday afternoon was the last day it was warm enough to play outside, but Gage spent a ton of time wheeling around through the crunchy leaves all over the yard! I was amazed that for the whole time he was in it, he never stopped smiling and giggling, laughing the hardest when he would get away from us and run into the fence, or barely miss the landscaping that borders the patio. I told Evan how impressed I was, because it’s one of the only things I can think of that keeps him entertained for a prolonged time without someone right there with him. I think the fact that he has a certain level of independence is what makes all the difference.

I’m so grateful that we had a chance to take part in this program and beyond thankful to the faculty and students who not only gave us an awesome new toy, but seemed to really care about Gage and making it work for him. It’s so refreshing to be around a group of people so invested in my child, with an understanding of the impact inclusion can make. There aren’t a lot of things that Gage can do just like every other kid. To have one thing that he can is such a huge blessing.

I’ve been asked a lot lately how certain things are going with Gage and I just wanted to share an update here, since I honestly can’t remember who I’ve shared what with. Last week, one of Gage’s therapists asked me how things went at his appointment and I just looked at her with a blank stare, racking my brain to figure out what she was talking about. Eventually I realized she meant the appointments at St. Louis Children’s Hospital that caused us to miss our last appointment. I’m all over the place lately and constantly have a bad feeling like I’m forgetting something. Yikes! Since I know so many of you are interested in all things Gage, here’s a little about our last few weeks.

After the extended EEG we did, I tried to patiently wait for a report on results, only to find out Dr. Collins, Gage’s neurologist, was out of town for a conference. I posted something about waiting for results, and that very next day, as if the prayers I hadn’t even formed yet were answered, I got a call back from his nurse. While he was away, the doctor reviewed the EEG results. He confirmed that Gage did have 2 seizures during that time and recommended changing his medication. We started slowly introducing topiramate. The first weeks were a little rough. Gage had a very hard time sleeping at night, and I couldn’t be sure if it was a side effect from the new medicine, or just him wanting to be cuddled instead of in bed alone. So many possible side effects are especially hard to pinpoint with a kid like Gage, because he can’t tell me exactly what’s going on. But we’ve stuck with that new medicine for now. Per instructions, we checked in with the doctor after reaching our goal dose. I called a little earlier than the end of the third week, because one night last week Gage had a small seizure at bedtime. His doctor said that his old medicine (Trileptal) he was still taking could be causing problems, so we’ve started weaning that one, and are nearly off of it completely. The doctor said we could discuss other options if we still aren’t happy with the new med as time goes on. Hopefully things will settle and we’ll start to get a better understanding if this is the best treatment for him. I don’t want to jinx anything, so I almost hesitate to even type this, but we did have 2 nights in a row of Gage sleeping in his own bed from bedtime all the way until morning! Halleluiah!

Another update to share has to do with the appointments I mentioned at St. Louis Children’s Hospital. Our first one was with the neurosurgeon, Dr. Park, who performs SDR. We were following up on our initial consultation with him that we had back in March. From his perspective very little had changed and he said he would be very hesitant to do the surgery, explaining that it might not have much of an impact on Gage’s outcomes. That is basically what both Evan and I expected to hear. From there, we went downstairs to see the orthopedic surgeon who works collaboratively with Dr. Park on patients who get SDR, to do tendon lengthening when it’s needed. He told us that operation is something you only want to do once, and recommended waiting until Gage was standing and bearing weight more, if we were to pursue it in the future. Both doctors assured us that we are doing the right things, like therapies and exploring options and taking advantage of the resources available to us. They also said we could come back to follow up in another year.

A couple other things going on in the world of Gage. Yesterday he returned to hippotherapy at Dynamic Strides after a couple month hiatus. He did so awesome! No tears at all, and looked so big sitting up on Johnny Cash, a pony he was riding for the first time! And later today, we’re headed to MSU to get an adapted car for Gage through the Go Baby Go program! I can’t wait. I’m so excited to see what he thinks of riding in his own vehicle with the chance to be in control. Stay tuned for more details (and of course pictures) from that!

I wrapped up last week’s post with a reminder of how important it is to cling to my faith during challenging times. Even as I typed the words, I couldn’t help but feel a twinge of guilt. Lately, I’ve felt like I’m faking it. I can tell others how important faith is, but I tend to forget myself so very often. Or I feel like I’m putting on a front, but inside I’m lost and confused and hurting. And that hurt leads to questioning and doubting and feeling distant from God.

I recently re-read some of my journal entries from right after Gage’s birth. I was so in awe of God during those days and hours. I could feel the power of prayer working as I was falling more and more in love with my baby boy with each passing minute. I’m so grateful for those times of pure bliss, even in the midst of worry and fear. I wouldn’t trade them for anything. But being reminded of them makes me wonder what changed. When did my faith start backsliding? When did I start moving in the wrong direction, further away from that close, loving relationship with my savior? The one who continues to meet our every need.

Luckily, even when I’m moving in the wrong direction, or just staying still, God never stops pursuing me. When I really stop to think about it and focus on all the good things in our lives, I can’t help but see the evidence of His love. A few months ago, I admitted to a couple friends my feelings of doubt. Then one morning, I had some time to myself while Gage was at therapy. As I was alone with my thoughts on a run, listening to a random selection of music on Pandora, it’s like God hand-picked the playlist for me. Each song was a perfect reminder that I needed at that time. So much so that when I got back to my car, I paused to write down each one so I would remember how I felt in that moment—loved by a God who cares about the intimate details of my life. My notes from that morning, much like my jumbled thoughts, are scattered and hard to understand. I’m sure I butchered these song titles, but I wrote these words down: Here’s My Heart, I Need You Every Hour, Come To Me, Set a Fire, I Want More, Lord I’m Ready Now, and I Will Rescue You.

I never want to be anything but genuine and authentic…in my life, in the words, thoughts and feelings I share here on this blog. But I also want to be positive, optimistic and hopeful, avoiding the negativity and depression that’s all too easy to succumb to. I want my joy and gratitude to be real. I don’t want to be “faking it.” But I also believe there is value in words of affirmation, even when you’re not feeling them 100%. Even with the doubts and questions still present. So I’ll keep declaring things like “Here’s My Heart, Lord” and confessing things like “Lord I Need You, Oh I Need You, Every Hour I Need You.” I’ll keep choosing to believe that I can come to God and he will rescue me. Even if I feel inadequate, I’ll keep sharing scripture that speaks to me, with the hope that it can help you too. And I’ll keep believing in the power of prayer, and keep letting peace wash over me, even when I can’t understand it.

Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus. – Philippians 4: 6-7

Immediately the father of the child cried out and said, “I believe; help my unbelief!” – Mark 9:24

For I know the plans I have for you, declares the Lord, plans for welfare and not for evil, to give you a future and a hope. Then you will call upon me and come and pray to me, and I will hear you. You will seek me and find me, when you seek me with all your heart. – Jeremiah 29:11-13

So do not fear, for I am with you; do not be dismayed, for I am your God. I will strengthen you and help you; I will uphold you with my righteous right hand. – Isaiah 41:10

 

Sometimes when I’m nervous or stressed about something, I dream about it. It’s like my sub-conscious brain brings it to the forefront, even if I try to downplay it. A couple weeks ago, we had some important fundraising events for work, and beforehand I dreamed that they took place in my parents’ house in Tipton and no one showed up. Luckily that wasn’t the case. My dreams rarely make any sense.

Wednesday we’re headed to St. Louis Children’s Hospital to consult with a couple surgeons and talk about some options for Gage. I guess I’m nervous about it, even if I don’t want to admit it. Last night, I dreamed that the neurosurgeon recommended surgery for Gage, and then immediately moved him to the operating room to do it! I was panicking and making phone calls to explain what was happening, and kept thinking, “I wasn’t expecting surgery to be today! I thought this was just a consult!” Again, rarely do my dreams make sense.

Our first consultation tomorrow is a follow-up to an appointment we had back in the spring with Dr. Park, who performs Selective Dorsal Rhizotomy, or SDR. It’s a procedure to alleviate spasticity in lower extremities. When we saw him in March, after briefly observing Gage he decisively said that he would not recommend surgery at that time. He watched him take steps in his gait trainer and said he would need to work to develop those skills more first. He also suspected that Gage is battling not just spasticity but also dystonia, which is much harder to diagnose, and SDR would not help. At first, he asked us to come back in a year, but then said to come back in 6 months. He also mentioned the orthopedic surgeon he works with for his patients, Dr. Dobbs. I asked if at our 6 month follow up if we could also see Dr. Dobbs, so that’s what we’re doing. He performs a procedure known as PERCS which is a minimally invasive method for tendon lengthening.

To be perfectly honest, back in March when Dr. Park said surgery was a no-go, I was relieved! The idea of severing nerves and opening the spinal cord are so daunting and I was grateful the decision was made for me that we wouldn’t be doing it at that time. Of course I want to give Gage all the help we can, and if you’ve spent much time around him, he know how tight his muscles are. But I also just want him to be happy, and I love him just the way he is. I don’t want to put him through anything unless it’s necessary, or the risk is clearly worth it.

As we head back to talk to the same surgeon again, I’m not quite sure what to expect. Gage has made progress since March, but in subtle ways. I’m not sure there have been enough changes to make anything different from Dr. Park’s perspective. I’m really not even sure what to hope for. If surgery is suggested or recommended, whether it’s neurosurgery or orthopedic, that’s not something I get excited about. I guess I feel stuck in the same position we were six months ago, which I think of as the information gathering stage. I want to know what options are available to help Gage, but I don’t want to face the tough choices that come along with pursuing those options.

So, here we are…at a crossroads of not knowing what to expect or hope for. My efforts to try and figure out what to expect would be wasted. But I guess what I hope for is that our next steps will become clear to us and that no matter what choices we make, we’ll feel a peace about those decisions. While reflecting on how I feel about these appointments, and really getting down to what I hope for, I know that hope should be rooted in faith. While I’m feeling stuck and confused about what’s next, my faith is what I need to cling to. Faith that God is taking care of us and providing for us each step of the way. He gives us what we need to get through and keep moving forward, even as we face struggles and challenges.

“Faith is being sure of what we hope for. It is being certain of what we do not see.” Hebrews 11:1

A couple weekends ago when Gage had his extended EEG, I was asked to keep a log of his activities. Things like eating, drinking, brushing teeth and naps were noted with the specific date and time. I thought it might be interesting to also keep a log of my activities (and emotions) throughout those three days.

Friday, 2:00 pm – We got off to an easier than expected start. When the tech arrived to set everything up, Caleb took the perfectly timed nap, making it easier to focus on just Gage. I won’t sugar coat it, Gage HATED having all the electrodes hooked up and stuck down to his scalp, but on my lap letting out his screams, he got through it. I was reminded how much I hate watching my child suffer while I’m helpless to do anything to comfort him. When Gage was little, he used to have to get blood drawn every two weeks to check levels and make sure the anti-viral meds he was taking weren’t having negative side effects. It was always hard to get enough for a sample, and watching the nurses make several attempts was BRUTAL! Recently, Gage went to the dentist, and again, holding him down while he gets his teeth cleaned was like torture! But the great thing about Gage is how quickly he bounces back. Before the tech left our house, he was sharing his sweet smile again.

3:30 pm – Evan hadn’t arrived home from work yet, and Caleb was no longer napping. I found myself constantly worried that Caleb would tip over some of the equipment (there were 2 cameras set up in the house to watch Gage’s movement) or rip something off Gage’s head. I was trying to keep Gage comfortable, while also trying to keep doors shut and a close eye on Caleb. With each moment that passed, I wished more and more that Evan was there. In anticipation of a long weekend, I felt like I was on the verge of tears.

4:30 pm – My wishes came true and my love returned home from work. In the wonderful way he does, he recognized my need for a break and suggested I go get pizza for dinner. Caleb tagged along to go pick it up. Gage was super upset, and I can’t blame him. I’m sure his head was itchy and uncomfortable, and he was tethered to a monitor that I kept awkwardly trying to position and keep untangled.

6:00 pm – We returned home to a much happier Gage – sometimes a little break makes a big difference! After a quick bite to eat, Caleb and Evan headed out to the races. It was OTC night at the drag strip and Caleb was excited for his first racing experience! Evan even got to drive. It was nice to just have some quiet time with just Gage. He was still unhappy and uncomfortable, but still flashed his gorgeous smile for the camera when Daddy requested a picture to show his co-workers at the races. We cozied up on the couch and I felt much less like crying.

The monitor that all the electrodes were hooked up to is what’s sitting in Gage’s lap. It was much more compact than I was imagining, and could ride in the pocket on the back of his wheelchair. There was also a button that we were instructed to push if we noticed any strange activity.

8:30 pm – Gage gets a story and heads to bed. I let him cry it out for a while, which isn’t out of the ordinay for us, but I’m more concerned than usual thinking about the extra wires, etc. in bed with him tonight. I keep a close eye on the baby monitor. By now, Caleb is all raced out and Evan calls to tell me they’re heading home. I assume Gage will still be up crying when they arrive, but luckily I’m wrong. By the time Evan carries a sleeping Caleb inside, Gage has also fallen asleep.

11:00 pm – It’s my own bed time and I find myself lying in bed closely, even obsessively, watching the monitor.

Saturday, 12:00 am –  I’m still awake, hyper aware of the small movements and sounds coming from Gage in bed.

1:00 am – Slept some, but back awake…was that a twitch from Gage?

2:00 am – Awake again

4:30 am – Awake and suddenly alert to sounds from the monitor. Hurry to Gage’s room and find him grinding his teeth repeatedly with distressed cries mixed in. Push the button to indicate seizure activity and try to soothe Gage, rubbing his back and telling him over and over I’m there. Try to commit details to memory to later record on the log.

5:00 am – I’ve moved Gage to the love seat in the living room so I can change his extra slobbery sheets. I debate putting him back in bed on the fresh set, but decide to let him sleep peacefully in the living room instead. I take my spot on the couch next to him and resolve that I’m awake for the day. Turns out, I was wrong, and I actually get a few more hours of sleep before the rest of the house is up and day 2 begins.

9:00 am – Caleb discovers the alert button on Gage’s pack and pushes it. It was bound to happen sometime.

10 am – One of the electrodes has come off and I make a sorry attempt to reattach it. On the phone with the company monitoring things in Texas, I’m able to confirm when it’s back on and reading things again, but it would continue to detach throughout the rest of the weekend.

Gage was in a much better mood throughout Saturday. We went about our day pretty normally for the most part. As often happens, throughout the weekend, we were overwhelmed by kindness from our friends and family. So many people reached out to offer help, whether it was making us meals, taking Caleb off our hands or running errands. Close friends and family were checking up on us, as were former preschool teachers and therapists. Things like this are welcome reminders that we’re not alone, even when we’re stuck at home for a weekend.

Sunday, 12:30 am – Another episode pulls me out of bed and has me rushing into Gage’s room in the middle of the night. This time, he has vomited everywhere. He drank a berry Pediasure shake before bed, so pink puke is covering one side of his face, in his gorgeous eye lashes and staining the white gauze of this head wrap. There’s more than just vomit going on, and Gage works through another spell of teeth grinding and discomfort. Another button push on the monitor. Evan helps as we strip sheets for a second night in a row and I do my best to cut away the pink gauze and replace it and re-stick electrodes on Gage’s forehead.

By the grace of God, the rest of the night is uneventful. I have such mixed emotions about the things going on, because of course I never want to watch Gage suffer through a seizure, but at the same time I wanted to get information about exactly that type of activity while having this test. One of my fears going into it was that nothing would happen while he was hooked up, but would right before or right after that weekend. I’m glad that wasn’t the case.

Sunday was another “normal” day and we were all glad that things are winding down. Before bedtime when Caleb would get a bath, we’d sneak back to our room and so he could use the tub in the master bath so Gage wouldn’t get jealous. Only sponge baths for him for those three days. I knew if he heard the water running and the tub filling up, he wouldn’t be able to contain his excitement. That kid LOVES bath time.

Luckily, there were no out of the ordinary events Sunday night. My biggest moment of panic was when I was when I accidentally tipped over the camera tripod in the bedroom! I was so worried about Caleb damaging the equipment and it was my own clumsiness that caused any issues. A quick phone call confirmed everything was ok and we were still up and recording.

By the time Monday afternoon rolled around, we were ready to be done. I’m sure Gage most of all. Getting all the things on his head unstuck was pretty awful, but again, we got through it and he was smiling again in no time. And again, Caleb took a perfectly timed nap and let us focus on Gage. Gage got a much deserved bath to wash all the goo out of his hair before we headed out the door for feeding therapy that afternoon. And just like that, another week was underway. My trooper Gage was back in the swing of things in no time, just rolling with the punches like he always does. I’m so anxious to find out more from the study, but we’re still waiting on results. When I called to check yesterday, they said it can take a couple weeks and Gage’s neurologist is out of town this week. I’ll share more as we know more. If you’ve made it through the end of this long post, you’re probably at least somewhat interested. 😉 We’re so grateful for all the prayers, support and offers of help. Our journey isn’t always easy, but the people around us make it so much better, just by being there.