Is Life Hard to Swallow?

Sometimes life just comes at you like water from a fire hose. Even with your lips wrapped around the end of just a garden hose, you can’t swallow fast enough. Ah, that brings back memories of summer days, barefoot and swimsuit-clad, running through the sprinkler. That makes me smile.

You might recall that back in the fall, when Randy had the PEG tube for feeding, he had a series of barium swallow tests that proved he was swallowing thin liquids and solid foods well. It was a time for celebration, as that accomplishment opened the door for Randy to eat and drink anything he wanted. All of his meds could be administered by mouth, as well. Eventually that led to the removal of the PEG tube in his stomach. Hooray! I’m still grateful for that advancement, daily.

We’ve had to revisit that subject back in March, as Randy has been coughing a lot when drinking water. Suspicious, the speech therapist decided we needed a new barium swallow study.

Randy was given water to drink mixed with barium sulfate, a metallic compound that shows up on X-ray. Images of his esophagus were taken. Then it was repeated with mildly thickened water and densely thickened water. Barium can also be added to pudding and placed on a cracker or cookie to record how well a patient can chew and swallow solid foods.

The results showed that Randy’s swallowing ability with thin liquids was slow and incomplete. Some of the liquid drifted into the trachea (windpipe), which can increase his risk of developing pneumonia. Been there, done that…shouldn’t go back there. Ever.

So…we’ve taken a little step back, and restricted Randy to drinking liquids that have been thickened to a nectar consistency. This isn’t incredibly fantastic news, but it’s a good plan for keeping him out of the hospital with an infection in his lungs.

I would imagine that it’s hard to satiate your thirst with water that can’t flow freely. I’m sad for Randy, for that reason alone. I’ve never been without water for very long. Thinking about it makes me very thirsty, all of a sudden. Have you ever gotten an email notice that your water was going to be turned off for repairs? Or better yet… Have you ever missed seeing that email, and turned on the faucet to wash your hands, only to realize no water is coming out of said faucet? In an instant, all you can think about is how thirsty you are.

The human body is more than 60% water. We can live for only 3 days without some source of water. Some of the mild symptoms of mild dehydration (2-3%) are thirst, headache, darkened urine, constipation, and fatigue. As things get worse, (5-6% water loss), we begin to experience nausea, muscle cramps, fever, sunken eyes and increased heart and respiration rates. By the time we’ve lost 7-9% of our water, there’s mental confusion, impaired vision, chest pain, seizures, and then, if not remedied quickly, eventually death.

I’ve been thinking a lot about how Jesus said he was the living water. In John 4, Jesus told the woman at the well that He could give her a kind of water that would cause her never to thirst again. He explained that He was the Savior. The water He could give her was the “living water” of eternal life.

How spiritually dehydrated am I? What are the symptoms? Maybe when I begin to feel my hope diminish, my strength slacken, and my heart harden, it’s time for a spiritual drink. When my thoughts become negative, when I’m angry, when I’m running from reality, I need to find The Living Water. The most potent way to do that, for me, is to turn to God’s word in scripture, and to seek the Lord in fervent, intentional, and personal prayer. There are other ways too, like uplifting music, other people’s testimonies, and “sermons”, and spending quiet time alone in nature. These often bring the peace of the Holy Spirit to me. When I seek Jesus, my heart is at peace, my perspective is more clear and eternal, and my thoughts turn outward in love toward others.

Which brings me back to how I can help Randy with this water/ swallowing issue.

There are commercial thickeners available… most brands (like Thickenup, and Thick-it) are made of genetically modified corn starch. There’s a brand made from xanthan gum (SimplyThick), But has fillers and other chemicals to stabilize it.

So…I started reading and experimenting in the kitchen and found some ways to use FOOD to thicken many of his liquids, and some cool ALTERNATIVE food products to thicken with, too.

In 8-12oz of cold whole milk (he needs the calories, since he’s burning about 3000 a day with all that spastic tone), a frozen banana makes the thicker consistency, and a tasty drink. Adding a teaspoon of honey makes it even thicker, even yummier, and adds a few more calories for him. Blueberries and pears are natural thickeners, too, while upping the nutritive quality of his diet…and making bowels regular…a win all around.

Enter glucomannan…a miracle for us! Look it up! From the Asian Konjac plant, it’s commonly used to make those wierd looking jello-like desserts in Japanese restaurants. And get this: it’s super high in soluble fiber, been found to lower total cholesterol (and LDL…the bad kind), lower triglycerides, lower fasting blood sugar, and relieve constipation. It’s tasteless, and dissolves easily in even cold liquids…it seems God made this glucomannan for Randy. That said, BE CAREFUL, as the fine powder absorbs 50 times it weight in water…so it must be dissolved well in plenty of liquid or it can swell in your throat and choke you. Remember that fabulous freshly squeezed veggie juice I make? I put 2 quarts of fresh juice in the blender with 1 teaspoon of glucomannan powder (sprinkled slowly in, not dumped, so as to avoid clumping)… and voila! Nectar thick!

While cool clear, crisp and clean thickener-free water isn’t on Randy’s menu for a while (and that makes me thirsty), I’m still ever so grateful for his life, and all the ways the Lord has preserved him and is daily restoring his life. Remember to stay hydrated, both physically and spiritually. Jesus is The Living Water. He will refresh, revive and restore your soul. Thickened or not..Bottoms up, and ‘cheers’ to life and to all of you!

Had a rough day?

This is not written in a spirit of complaint (I already did that earlier today…), but I need to record this so we can laugh more genuinely someday, as we look back on this debacle.

If you think you’re having a rough day…this might make you feel better:) Or, if your day was rougher, as I know that is possible, please know that I truly want to commiserate with you. You’re not alone or invisible. You are loved, and valued, and Life gets better. I know life’s going to get better…it HAS to😂. Nowhere to go but UP!! (Please know, I say that in jest.)

I have laughed a lot with Randy about this, but then I’ve done some crying (alone), as well. Imagine me telling you this story in my laughing and smiling voice, not my whiny one.

I’ve been looking forward to a Saturday outing this weekend, because there isn’t much time for fun during the week, and the daily list of things that MUST be done, is very mundane and each step is difficult. I was hoping to go to the movies today, and had decided that “Call of the Wild” appeared to be an adventure movie Randy would enjoy. Needing to leave an hour early, factoring the loading and unloading, we were ready to go. Once in the chair, we’ve got maybe 3 hours till he’s going to need to get out of the chair again due to pressure on his sitting bones, or because he needs to use the restroom.

Randy decided he needed to use the restroom (which, with transfers from chair to bed, any needed clothing changes, urinal, etc, takes at least half an hour, and maybe longer), which made us late to the movie by a couple of minutes. No big deal…we would miss all the ads and previews.

BUT…When I finally arrived at the theater, not a single handicap spot was available anywhere at that entire mall. Much less, a van spot with room for the ramp to come out. I decided maybe we weren’t meant to go to the movie and maybe we should try the park. Change of plans!

I picked up Whataburger for our picnic lunch, and got Randy a vanilla shake because I thought he would enjoy that more than a soda. I found a park not far from there and paid the five dollar entry fee, after being promised there were wheelchair accessible pavilions. I drove around that park 2 times, seeing seemingly happy families, all together, playing in the sun and fishing in the water. The weather was perfect! I’m telling you, as a 2 legged capable walking person, I would have never even thought about someone with a wheelchair needing access to that beautiful park…but I could not find a single place where I could possibly get my husband out of the van and through these narrow spaces in the fencing that are wide enough to step through but not wide enough for a wheelchair. The pavilions, lining the edge of the lake, had no paths to them, and were on raised concrete pads that his wheelchair could not traverse. Oh, how I wanted him to see this water, get some warm sunshine on his face and feel the wind in his hair.

I went back to the entrance, explained my predicament, and they were kind enough to give me my five dollars back. I found another park nearby, with pretty much same situation …but at least I didn’t have to pay five dollars to get in there. I did see 1 picnic table out in a relatively smooth grassy area, not too far from an opening in the fence, that I felt like I could probably push him through…but we would have to go over that grass to get to the table and it was downhill. It was my last chance to have some sort of outing-like experience, because the clock was ticking on how long he could stand the chair, and would need to be moved to a lying down position. We decided to try it!

I slung the Whataburger bag over the push-handles, but I didn’t have any way to push him and carry that vanilla shake, so I set the shake next to him. It fit just right, until he squeezed down on it with his elbow, crushed the foam cup against his side, and the ice cream came shooting out, all over his side and his lap. We laughed, and I apologized for not choosing a better storage spot, while I wiped him off with the only thing I’d brought…a blanket. I shoved the dry part of the blanket under his arm and across the wet clothing, so he wouldn’t be cold and pushed him across the grass (not as level as I had imagined), to the pavilion that we couldn’t manage to get ON to, but we’re able to sit NEXT to, in the shade. The sunshine on the water was a beautiful sight. I unwrapped our cold french fries and slightly soggy burgers, and we laughed some more, as we enjoyed the wind in our hair (that was more like gale force, and had just blown one of our food wrappers into the grass and quickly out of my reach). I was beginning to realize there was a giant chasm between my imagined picnic in the warm sun and gentle breeze, and the reality of these elements…surely you’ve been there, and know what I mean. Lovely as the day was, it wasn’t tranquil picnic weather.

I asked Randy if he saw the beautiful lake, and all the sail boats. He answered, “yeah”. I’m like, “You’re not even looking at the lake, you’re looking at your lap, honey…are you just lying to me?” He laughed and said, “yeah”.🙄

Razzing him a little, I said, “Randy do you just blow smoke all the time, and just placate me, saying ‘yeah’ to everything I say?” He said “yeah.”

Well, Ok! Glad we had this conversation!😂

In trying to secure the paper wrappers from flying away, I had set Randy’s french fries in his lap…bad idea. They toppled over onto the ground, and we laughed at the absurdity. “No big deal, Randy! I will share MY soggy french fries with you. Let’s not let anything ruin our 5 minute picnic!”

Then Randy got this huge sheepish grin on his face and said, “I have to poop.”

“Nuh-uh. You’re kidding, right?”

He laughed his contagious laugh, as an apology.

“Oh, boy. Randy that’s the only thing I don’t have any way for you to do here.” He continued to laugh, and I told him it was no big deal…we could leave and go back to the apartment…but it was going to take some time so I hoped he could hold it and be patient with me.

I packed up his uneaten meal, the part that wasn’t on the ground yet, and started trying to push him back up-hill in that dirt. I gotta say… I did NOT look that steep, when we were headed down! (There is a spiritual lesson for us, here.) I pushed him forward. I drug him backward. Every few inches I’d encounter an obstacle that kept us from gaining any ground. This was an ordeal, people! It took everything I had, not to let go of him and let him roll down that hill, as I was trying to find a way to get his wheelchair to inch forward across that uneven ground. At the bottom of that hill was a rocky cliff and a lake! Heaving with my might, I did actually manage to get him back through that tiny opening in the fence, and up to the concrete parking lot by myself. I was so proud of my accomplishment, and so relieved that I didn’t have to call 911 to come rescue me…as that was becoming my plan B.

About the last 10 yards of that literal uphill battle, an older (can I say, kinda rough looking?) gentleman on a Harley, with his wife (or maybe girlfriend) on the back, had seen me struggling (I must have looked pretty pathetic), circled back around, and pulled over to offer me a hand. It felt like God was saying, “You’re not alone”. By the time they reached me, I had accomplished the task, but I was so touched by their gesture, the Heavenly message it brought me, and the relief that we were finally on concrete, that I started to cry. They probably thought I was such a weirdo. Randy cracked up at the sheer ridiculousness of what had just occurred… and I suddenly realized he had been laughing the entire time I was pushing him up that hill.

We got loaded up in the van…which is easy for me, now. It used to be hard. That was a comforting thought. Maybe someday, pushing Randy’s chair uphill will be easy for me, too. Maybe carrying drinks and pushing his chair will be easy. I tried to laugh and sing to Merle Haggard songs with Randy all the way home, so he wouldn’t know that I was crying silently in the front seat.

I told him we’re should to try to go to the movies again this evening, so as to not let this experience defeat us. He agreed. I figured, since we had such a rough time, I bet we will appreciate it the next time that we go out, and don’t have so many problems. Our next date has to be better than this one, right? It can’t get a whole lot worse. 😂

As I’ve reflected on our experience, I have a few take aways that I believe will enrich my life:

*I am not entitled to have everything work out just because I have a good idea, and good intentions. God is not my genie in a bottle.

*Be more flexible. Choose joy while bending.

*Whataburger, though a yummy Texas (and other state) treat, has no picnic staying power.

*When you see something fun “not-too-far-downhill” in life, it might be an optical illusion, and much more difficult to get back on solid ground than you think. It turns out, the “something fun” may also be an illusion.

*Contrary winds may blow your food on the ground, but don’t fret…someone will share theirs with you.

*Randy needs an all-terrain-tank wheelchair to do and see the things that boy likes to do and see.

*In the last stretch of your struggle, God will send relief, often in the form you do NOT expect.

I’ve given a lot of thought to this “last stretch” timing, that the Lord seems to use. I see it in almost every one of my struggles…be it physical, emotional or spiritual. Why, I’ve wondered, does He wait SO LONG to rescue me? Why, in the darkest part? Why, in the hardest part? In Matthew 14, and Mark 6, it’s called the “fourth watch”. This is the time of night Jesus came walking on water to the disciples who were stuck out at sea in their fishing boat, after rowing against the gale all night long, in that horrendous wind-storm on the Sea of Galilee. We are told that he had watched them toil and row, and fight and work. Surely by 3am they were trembling with exhaustion, and about ready to collapse, and let the wind just carry their boat wherever it will.

I think I’m beginning to see. At the beginning of the battle, I don’t need God quite so much. I think I’ve got it. I still think there’s a way for me to muscle through. If He rescued me right then, I’d never really know what He saved me from, would I? I’d never really know the magnitude of His power…or mine. It isn’t until near the end of the battle, that I realize how hard the fight is, how hard I’ve worked (and a tinge of how completely incapable I am to finish or conquer)…It isn’t till I’m totally in it, that I can see how huge the giant actually is. Even then, He lets me keep fighting…for this is where I’m stretched, and toned for bigger, badder monsters down the road. And THEN, just when I’ve exhausted all my strength, and I’m about to give up, He shows Himself. And He shows Himself in a way that says, “ I’ve been here all along. You were never alone. I was just watching quietly. I was spotting you, letting you do all you could, but I’ve been here all along. And here I am, still. And everything is going to be OK. You did a good job. See? You’re stronger than you thought you were.”

When Jesus saves me that way, 2 things happen in me. One, is that my confidence and trust in myself is actually enhanced by the struggle. I surprise myself. Turns out, I haven’t suprised God, at all. He already knew what I was capable of. He just needed me to see it. The other thing that happens, is that, now that I know how big the giant was, and how hard the fight was, and how easily He swept it away, my confidence and trust in my God is enhanced in a powerful, indelible, unforgettable way. He’s BIG. He’s AWESOME. He’s UNSTOPPABLE.

So, since He’s there spotting me…I can try again. Yoked with Him, I’m unstoppable, too.

*

To add insult to injury, and make you chuckle even harder, this is the ONLY picture I got of our adventure.🤦‍♀️ Have a Great Day!😘

Heaven on Earth…if Only For a Moment

Today we were surrounded by family as my youngest chose to be baptized and take upon her the name of Jesus Christ. She is 8 now, and has been anxiously and excitedly waiting for this day for years!

We chose to have her baptismal service at one of our church buildings close to the rehab center in Dallas, so that Randy could attend. That meant that it was VERY FAR from all the people we love back home. I knew that my parents, grown kiddos and my Texas sister and her family would join us…they’ve always been my biggest cheerleaders. The event was tender, intimate, and relatively short, considering the planning it took to coordinate. It was bitter-and-sweet as Randy, (who had planned for years to be the one baptizing our little girl), watched our youngest son take his place in the water beside her. I’m so grateful to be married to a godly man…and possibly even more grateful that he and I were blessed with godly sons to follow in his footsteps. I thought my momma heart would burst.

In a very short time, the most important part of the day was done! That made for a full day of food, and family time. It’s just what this doctor ordered, and exactly what Randy needed. My whole family does a great job making Randy feel a part of everything, and as normal as possible. Our boys are super strong, and did all the heavy lifting…hallelujah…my back needed a break! I haven’t seen Randy laugh so much since he was the one cracking the jokes, back before his heart stopped. He sure loves these kiddos of ours, and I thank the Lord daily for all this family he perfectly placed me in.

As I reflected on this special day, what touched me the most, was the surprise attendance of dear friends who traveled HOURS to be with us for that 30 minutes of our life, at the church, for our little girl’s baptism. As each family trickled into the baptismal room, I was stunned at their sacrifice, and what it said about their love for our family. What did we ever do to deserve that kind of love and loyal friendship? I can’t recall a thing. Each family there, are friends that we have grown to love as we have worshiped and served side by side over the years, in our congregation. Each was dressed in their Sunday best on a Saturday morning, hours from their homes and to-do lists. The significance of their presence was not wasted on me. Not a one of them could come back to the apartment with us, so our visit with them was ridiculously short, but the impact they made on my heart will be eternal. Their presence was a precious gift, because it came with substantial sacrifice of their TIME. At 45, I’m still learning to be a “grown up”…and this was indelible lesson about true love, and true giving…a Jesus kind-of-love. The kind that changes lives.

I still tear up thinking of the palpable presence of the Holy Spirit, and the feeling of love so thick that it filled the air with sweetness. I don’t know why it still surprises me that these tough days (and months and likely years) of sorrow and trial are sprinkled with joy and light and happiness…but they are. I’ve come to recognize them as little love letters from heaven.

I testify that God lives, and that He is a God of love, and we can have a genuine and meaningful relationship with Him. He often answers our prayers by inclining the heart of someone we know, to come to our aid, or to show compassion, love, interest, encouragement, support, or friendship to us in our times of need. I’m so thankful for all the ways I see and feel His love through the kindness of others. This day is one I’ll never forget.

Frustrated! Terrible! Sucks!

Today was intense.

Today was also a relief.

This morning, Randy was really trying to say something important. I could tell by the look on his face. As hard as he tried, the only word that would come out was, “Steve”. He said that word with intense ferocity, like an explicative. Over and over again, with his face so angry, and his arms and hands beginning to tense up even more (I had no idea that was possible). It was obvious he had no intention of saying the word “Steve”, but wanted a different word to come out. Try as I may, I could not guess what that word might be. We had just finished a nice relaxed breakfast, and it was about time to go to clinic. I had just told him how wonderful I thought he was. I tried guessing: Was he trying to say I was wonderful too?… Or maybe he was trying to say that he loved me? Was he asking me to stop touching his hand? Did he need to use the restroom? I still don’t know.

Looking back over our last 24 years of marriage, I think I’ve only seen Randy’s mad face a couple of times… and it was directed toward a teenage boy in my house, not toward me. I have to admit, it’s pretty scary…and must be pretty effective since he didn’t have to use it too often. I had to remind myself he wasn’t angry at me. He was angry at his inability to express himself. That, combined with his inability to do anything for himself must be incredibly frustrating.

Later in the day, at lunch, Randy wanted to communicate something else, very specific. This time he repeated the word, “fish”, over and over again. As he got more upset it started coming out, “fish food”. I’ve heard this word from him many times over the course of the last three months, but it had never made Randy so mad. “Would you like to eat some fish? I can make you fish. Fried fish?” No…that wasn’t it.

Finally I said, “Randy, the angry look on your face makes me wonder if you’re mad at me. But I don’t think you’d be mad at me. Can I hold your hand?” He said yes.

“Are you frustrated?” He latched onto that word with intensity… “frustrated frustrated frustrated!!“, he yelled.

“I bet you are frustrated. This is frustrating. This whole situation is terrible.”

“Terrible, terrible, terrible!”, he yelled.

“Yes. It’s terrible. It just sucks.”

“Sucks! Sucks!” He repeated over and over again.

“I’m so sorry, honey. I wish I could take it from you.” His eyes stayed dry, but mine begin to swell with tears. I just sat and held his hand.

His contorted face began to soften, and the anger eventually left his voice, and we finished lunch like we do every day.

I think Randy felt a little better, once he found some words to describe how he was feeling.

I’m so relieved. That was rough…but we connected. I felt like I was able to sit with him in his feelings, and that felt good.

A Little Disney Magic…

Spoiler alert: We are not taking a trip to Disney World… but something magical happened today at Disney. And I’m so grateful.

OK, so most of you know Randy had his heart attack on August 22. Just one week later, he was scheduled to go to Colorado to hunt elk, mule deer, and bear with my teenaged son and our cousin, who’s more like a son to us.

I will be forever grateful that God allowed my husband to have a heart attack a few miles from Temple Texas (and the Scott & White ECMO and Cardiac team), instead of in the mountains of Colorado with my 15-year-old. My sweet boy would’ve carried the guilt of his daddy dying in his arms, the rest of his life. And Randy would have died in those woods. They could not have made it out.

What most of you don’t know is that I had planned a “tit-for-tat” trip to Disney World the following month, with my sister Amber and my brother Doug. Seven days, my friends. And no kiddos.❤️ I had already bought our tickets.

When this whole thing went down, I was too out of my mind to do much in the way of rearranging the plans in an intelligible way. $1200 of park tickets were at risk, as they expire when you’ve chosen a date, and they go unused. To make matters more difficult, I had purchased them from a third party vendor. I did manage to make a phone call to WDW back then, but I didn’t get anyone’s name, and I didn’t write down what they promised me…which was something about how they could be worth their face value toward another ticket when I was ready to take the trip later.

Fast forward to this month. Anyone who knows my sweet brother, and his Autism-Aspergers, knows that it’s hard for him to plan a trip to Walt Disney World and not get to take it. (Shoot..that’s hard on ME!) I’ve been joking with Randy ever since his injury that I’m going to take him with me to Disney World (his least favorite place on earth), because since he’s in a wheelchair I would have automatic fast passes to every ride.😉

My mom and dad have been planning to finally take the promised trip soon, to make it up to the poor guy. I gave dad the three tickets in hopes they’d be worth something, even though said tickets had already been assigned to my sister and me, and they are generally not transferrable. After a lot of effort on Dad’s part, he was told they were unusable. Expired. It was as if the tickets were non-existent to both the vendor (Undercover Tourist), and to Disney. Their $1200 value vaporized.

Now, in case you don’t know my dad, he’s always courteous and kind. Never rude, even on the phone, and even to strangers or under duress. You can be certain that even though no-one seemed to be able to help, he would have kept his cool and shown respect and cordiality. This is key to what happened next.

In a last ditch effort, Dad shared the backstory of our tragedy, and why we had missed the September Disney trip we’d been so excited to take. A fabulous cast member at WDW ticketing (in a specialist department) named Camilynn spent an hour on the phone with my dad. After pulling a lot of strings, she was able to change the expiration date of the tickets, reassign/ transfer them into my parent’s names, and re-activate them!

Before parting, dad explained that now he could pay ME for the tickets, and that Camilynn had helped put groceries on my table for a couple of months. There was silence on the other end of the line. And maybe a sniffle.

I am thankful to God, who continues to look out for and provide for my family. Thank you, Camilynn, for making some Disney magic for me today! Maybe it’s still true that all you need is faith, trust, pixie dust, (and some hard work from my Dad) to make dreams come true!

Blessings, y’all! And, Doug, kiss Mickey for me!

So good…

Today was Saturday, which means no clinic…and we had to get out of this apartment! Bryson and the High School Ag-Mechanics team were showing their projects at the Fort Worth Youth Fair, so we headed over to show our support.

I was a little nervous for Randy because I thought he might be uncomfortable being around friends from home, who haven’t seen him since his injury. I thought it might be a little awkward for them, too…not knowing how to act around their long-time friend, who seems so different now.

When we first got there, I shared something with them, that I’ll share with you. For each of you who know and love Randy, and are gonna get a chance to visit with him someday soon, this will make it easier…

Randy remembers every one of you. He remembers your face, your name, and his special nickname for you. He remembers all the things that you’ve done together. He remembers everything he’s ever known. He still has a hilarious sense of humor. He understands everything you say, and will likely crack up laughing at the same things he used to laugh about with you.

Randy’s got two major deficits. One is that he can’t control his hands, feet or even head in very purposeful movements. The other is that he can’t clearly say all the things he remembers. So when you see him, talk to him like you always have. He will smile and laugh, and may even call you by your nickname.

It was so good to see friends from home! We smiled, laughed, shared some old memories, and made some new ones. We had lunch, looked at some amazing fair projects, and got to hear the whole run-down on Bryson and JC’s smoker. (They got a blue ribbon, I might add.) Randy had a good time, and his big grin made it obvious that he was so proud of our boy.

I managed to eat almost all of poor Randy’s sandwich (when I’m socializing I eat stuff I’m totally unaware that I’m putting in my mouth…it’s wierd, I know), so I promised him food on the way home. From a pool of choices, he selected Sonic. He chose to order a cheeseburger, and clearly asked for onion rings. This is a big deal, people!

Four months ago, I had a team of doctors at Scott & White tell me that based on his MRI, I needed to decide if Randy would want to continue life support. Three months ago, I hadn’t heard him speak a word, and wasn’t sure if he ever would again.

I thank the Lord every day, that Randy remembers me (and all of us), that he’s capable of experiencing joy and love, and that he can communicate that. It’s a miracle.

God is so good.

Today was so good.

And Randy said his onions rings were so good.

Two Roads Diverged in a Wood…

Man. Today is rough.

Every single thing that used to be automatic is SO HARD. Restroom duties. Getting him dressed. Moving to the wheelchair. Eating time. Meds. I need a nap, now. Oh, it’s 10 AM and time to go?

It is cold and raining, the vans that transport to the clinic are running late, and Randy has an appointment he can’t miss. I decide to take him to the clinic myself, to assure his timely arrival. I forget to take off the lap-tray so he can easily fit in the space provided for his chair in the van…the rain is drenching us both… ugh, this is so hard. Loading up in the cold wetness is miserable.

I am miserable.

WAIT.

STOP.

I choose.

I choose happiness, or misery. I don’t have a ton of control over my circumstances this morning. However, I get to choose my attitude about these circumstances. What’s really hard is remembering this. It seems that I must re-learn this every day. I feel as if I’m retaking the same class over and over again. Maybe if I get this down, I can move on to the next life lesson.

It’s easy to see what’s wrong in my world. What takes skill, is to find the fingerprints of God…to find what is right today. I’m alive, standing beside the one I love. He is still here. My children know the Lord, love each other, and are rallying together to carry-on what is important at home. We have many friends and family who love and support us. We still have a roof over our head, food to eat, and all our basic needs met…for this month anyway;) We are here at a Neuro rehab, surrounded by miraculous healing in the patients around us. I can believe and expect that we will see similar healing in Randy… it just takes time. God has provided everything I need when I need it most, and I trust in Him that He will continue to do so. There are miracles still waiting to happen, and I will get a front row seat to see them unfold.

So…let me change my mind. Lord, help me change and renew my mind. Let’s begin again.

Good morning, new life! Thank you, Lord that my husband is here to dress and feed and help to use the restroom. Thank you for his loaner wheelchair, and for his medicines, some of which are life saving right this very moment. Thank you for hoyer lifts to help me move him around. Thank you, that I can be here to support and stand beside him in this most trying and difficult time.

Thank you for sending me the opportunity to buy a mobility van so I can help get Randy around to all the places he needs to be. Thank you that it’s raining when it could be snowing or iced over. I know how to drive in rain.

And thank you, Lord, for the ability to choose how I will react. Help me to do it in a way that brings me joy, and honors you.

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Motion is Life!

We ARE going places on this stationary bike!

One of the most beneficial therapies for Randy, in my opinion, is the stationary bike. There is a law about brain activity…the more sensory information we can send UP to the brain (By way of touch, pressure, temperature, and mostly by movement of the joints) the more motor control the brain sends DOWN. It’s how God wired us.

For the time being, Randy can’t move his body intentionally; but he sure would like to… more than anything. If we can get his joints moving as often as possible, then he has a much better chance of controlling movement in his arms, legs and head at some point.

Because of his constant spasticity, it’s like full body resistance training for anyone who is attempting to move any of Randy’s joint for him. He may have lost 50 pounds, but he is still super strong. Randy even gets those 20 something-year-old‘s in the PT clinic sweating. The way to get Randy’s joints moving for any length of time is to use a machine… and a special stationary bike is a great tool!

This one is especially equipped to fasten an immobile patient’s feet and hands onto the device. The machine can detect how much activity Randy is initiating on his own, and can provide a baseline level of activity by engaging a motor that move his feet for him. It takes his tightened arms and legs through a nice range of motion, with controlled movements that more rhythmic that we can manage by hand.

This piece of equipment also detects muscle spasm, and will stop movement, so as not to injure the patient. Because Randy spends his days in constant spasm, I sit right next to him and override the machine periodically, by assisting his movement, to quell any alarms that pop up when the machine detects his muscles misbehaving.

Randy has worked up to about 15 minutes of leg cycling and 15 minutes of arm cycling. The arm set up looks a little more involved, because until Randy can grip the handles intentionally for long periods of time, we have to wrap his hands to the handles using ace bandages.

It’s a fantastic range of motion exercise, and one that is refreshing to Randy, I can tell. He is definitely is working hard when he’s hooked up to the machine, and I’m not certain he enjoys it at the time; but when it’s over he takes a big sigh and relaxes a bit. When I ask him if he likes moving his body he always says, “yes”.

All of you who know Randy well, know that he loves to move his body. He always been so physically active and extremely competitive; pushing his body to do whatever he dreams up. You can imagine it’s extremely frustrating for him to be starting with such remedial movements, but we’ve got to start somewhere!

I keep telling him that this is practice for bike riding with the boys, tilling the garden, casting his line in the water, and throwing a baseball…so, come on, Randy, move it!

We’re gonna need one of these special bikes when we get home. If you know of anyone with something like this that isn’t in use, we’re very interested! **Visit the sponsorship page to find a simple way to assist our family in our continuing journey to get Randy back home.**

Let’s get Techy

Hypoxic brain injury is like a box of chocolates. You never know what you’re gonna get.

With a traumatic brain injury (like a car accident, or fall), it’s fairly easy to predict what type of deficits will present themselves, depending on what area of the brain was affected by the trauma. In Randy’s case, the whole brain was lacking oxygen, and the whole thing was damaged. He can have zero recovery, total recovery, and anything in between.

Randy’s flexor muscles are too tone. After several weeks without brain signals going to them, they began to fire off on their own. His fingers, wrists, elbows, shoulders, neck, hips, knees, ankles and toes are all in flexion. It’s worse on his left side. All day long, his muscles burn thousands of calories in constant spasm. It’s quite the workout and weight loss program.

There are prescription medicines that help to reduce tone, such as Baclofen, and others. Botox injections are also a common treatment, to locally inhibit part of the muscle’s ability to contract. Both have shown minimal benefit to Randy.

Often, a baclofen pump is surgically inserted into the abdomen, and a little drip hose (catheter) is run to the spine where very small amounts of the medicine drips on the cord, reducing the tone to the muscles associated with that level, (and often, all the levels lower than that one).

This kind of intervention has shown beneficial for those who have uncontrolled tone at multiple levels. The procedure is incredibly expensive, comes with lots of risk, and can fail to produce the desired effects, and need to be removed. It’s a big deal, and not something I’d like to do…if we have any other possible option for normalizing muscle tone.

Randy was scheduled for a trial of this treatment back in November, where, using a syringe, they would direct the medicine to the desired cord level and bathe the nerves there with baclofen, to see if it would reduce the tone enough to warrant the more permanent procedure of installing the pump.

It was discovered only days before the procedure, that Randy was on an anti-platelet therapy for his heart stents, that would make such a procedure too dangerous. The cardiologist who placed the stents said that removing Randy from the meds, even temporarily, would likely cause another heart attack very quickly. He also seems to feel that remains true for at least a year following the stent surgery. We’ve got to find another way to help Randy with these constant spasms, until at least August of 2020.

In Chiropractic, one of our main purposes is to facilitate the body’s natural mechanisms to speed healing and restore normal function. God wired our bodies in such a way that opposing muscles inhibit each other. For example, when you contract your bicep, your tricep is forced to relax, so that you can get movement into flexion at your elbow. Applying that principle, if I want Randy’s bicep to relax, I should stimulate contraction of the tricep. If I want the hamstring to relax so I can straighten out Randy’s knee, I should stimulate contraction of the quadriceps. But how?

Tune in next time for … some things we’re trying, to reduce Randy’s spasticity, improve his long-term outcome, and help him have more control over his own body.

2020, here we come!

On New Year’s day, Randy didn’t have clinic. That makes for super long days of waiting, and wishing we were at home so we could at least be with the kids, go out in the yard, head down to the pond, or something.

Anticipating that feeling, I had asked for permission to take Randy on an outing. If we leave the facility, it’s got to be pre-approved by his attending doctor, and any medications planned for.

Randy’s activity of choice has always involved being outdoors. If it’s daylight, he’d be found in the yard or in the woods. If the weather had been nice I would’ve taken him to a park or botanical gardens, but with the cold temperatures and the wind, we had to opt for a movie…though I can’t actually recall any movie that Randy has watched to the end. Since I’ve known him, he’s one who promptly naps when the lights go out.

I asked Randy if he’d rather see Little Women (my top choice), Star Wars, or Jumanji…trying to make my voice sound less enthusiastic with each additional option. I knew his answer before I asked. He wouldn’t choose a classic American novel turned chick flick. He wouldn’t choose Sci-Fi, even if it IS the most successful movie franchise in history. He would choose the adventure movie with animals in it. I was right. He wanted to see Jumanji. (Can you hear the faint party horn?) That’s ok. I’m just excited to go on our long overdue date:)

I LOVE my mobility van! I can load, secure, and unload Randy all by myself! Buying it has given us freedom that we hadn’t experienced in a long time. The outings add variety and mental stimulus to his weekends that he wouldn’t otherwise be getting. I’m so grateful.

We headed to the theater, and attempted to find a handicapped spot. I’d never noticed, in my non-handicapped life, that some spaces have special lanes for ramps that load and unload wheelchair bound passengers. It had never occurred to me, that if those spots were filled with handicapped (or *gasp* non-handicapped) vehicles that don’t necessarily need a ramp, then there’s not a single safe place anywhere in any parking lot, to lower the ramp. Someone can whip in (not seeing you…being in a wheelchair is akin to wearing Bilbo’s Ring), and run you over. Or worse, destroy the ramp.

Here’s another epiphany I had. Fully functional, weight bearing, 2-leg-walking landscape crews filled the nearby flowerbeds with oak trees and moderately sized pebbles. Again, nothing I would have blinked at 4 months ago. If you want to neutralize an army of hand-powered wheeled vehicles, toss a handful of acorns and pebbles in their path.

Oh, and I’ve likely been guilty of this a dozen times in my care-free past, but if you block the ramp to the sidewalk with your car while you meet someone, or run a quick errand…anyone in a wheelchair will be stranded, until Your Majesty returns. Hypothetically.

We completed the obstacle course just in time to catch the movie! I saw right away that the regular wheelchair accessible seating we chose tickets for, was too low for Randy to see the screen. He can’t lean his head back very far, and he won’t look up with his eyes (only down, side to side and straight ahead… we don’t know why, yet).

I admit, I started to cry. Seems silly, I’m sure. The thought crossed my mind, “Why does every single step of this have to be so difficult?” And then I remembered Randy. Maybe every single step of his day is difficult, too? Maybe more difficult than mine? He’s not complaining, or crying. Maybe I can suck it up, decide to smile, and find a solution.

Turns out, this theater in Grapevine has an elevator, and wheelchair accessible seats on the top row! That’s where we went, and we saw an action packed movie…till the climax, when Randy was visibly agitated, and communicated to me that needed to leave. 🙄 So…true to classic Randy form, we did NOT watch another movie to the end!

I wasn’t too disappointed. It was oddly comforting that some things haven’t changed.

**Visit the sponsorship page to find a simple way to assist our family in our continuing journey to get Randy back home.**