Month: October 2018

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.