Website Update

In just under 20 days, we’ll be launching a new website for Zach. The website is appropriately entitled: www.runningforzach.ca. Stay tuned for a new look and new updates! As mentioned last week, there may be an update or two yet on this blog, so feel free to check in. Thank you all for running alongside us this far. God bless you all.

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Today’s devotional is one I wrote on April 11, 2024. It’s always good to be reminded to be still and know our God.

The theme for today is rapha and yada.

Just can’t quite leave Psalm 46. How can you without touching on “Be still and know that I am God?”

So, I learned some Hebrew. And I want you to as well. Trust me, it’ll be worth it. And easy. Two words: rapha and yada.

Rapha. Be still. Rapha means to let go, be weak, be feeble, be vulnerable. In short, it means to surrender.

Not exactly the be still we think it means. Rapha is much more than sitting quietly, meditating, and napping. It’s much more than a quiet walk in nature. It’s more than getting away from the noise, clamour, and busyness.

Rapha is surrender. Rapha takes humility. Rapha takes courage and trust to be weak. It jolts us into admitting (and being OK with!) the fact we don’t have it together. We’re not as strong as we think we are. We’re not in control. We’re not OK. We’re not fine. Stop pretending. Start surrendering. Rapha! So liberating!

Rapha is freedom. The more you get the ‘rapha’ part down pat, you’ll receive ‘yada.’ Rapha takes you to yada.

Yada. Not ‘yada yada yada.’ But yada. To know. Yada is to know God personally, closely, and intimately. No time to get into the birds and bees here, but it’s the same word you read in Genesis – Adam ‘knew’ Eve.

To know (yada) God is like a marriage. A bonded unity. A deep relationship. More than just a general acquaintance. More than just the odd check in. To know God is to share with God. Every longing, every fear, every tear, every hope, every failure, every sin, every joy is to be shared. Shared with our loving father. He wants us to know Him deeper, to know Him in the same way He knows us. Yada is relational. Yada is personal.

Rapha and yada will help Zach, and all of us, to run the race. Rapha leads to yada leads to Jesus.

Today’s Updates:

Now that Zach is settled into what will be his home for the foreseeable future, his situation is no longer changing like before. Although every brain injury and recovery is different, most neurological recovery happens within the first three to six months after the injury takes place. This means that Zach’s cognitive abilities and level of functioning will likely remain in a similar place to where they are, now that eleven months have passed since his original brain injury. Zach’s doctors say that he may still make some minor gains within the next year, but no changes that would significantly change his level of functioning. Zach has come incredibly far since he was in the ICU this spring, but he still has many challenges in his everyday life. For our final regular blog, we have written a more comprehensive account of Zach’s abilities and obstacles, including things to pray for. It’s quite a long read, so you might want to grab a snack if you’re planning to read it all in one sitting!

Physical Mobility:

Zach’s amputations on his right hand and below both knees have caused a few obvious limitations on his physical mobility. Zach relies on a wheelchair to move around. He is not able to roll his own wheelchair, and has not been successful in driving a power chair, so he relies on others to push his wheelchair around. Zach needs to be transferred between his bed and his chair with a sling and a ceiling lift, which requires two staff members to ensure that he is safe during the transfer. 

We help Zach with leg and arm stretches to try to retain his flexibility and strength, especially in case he ever receives prosthetics. For now, prosthetics are a “maybe” that would be far in the future, depending on if Zach can reliably communicate when and where he is in pain.

Since Zach was released from the ICU in the summer, his physiotherapy teams have worked on improving Zach’s core, arm, and neck strength. In contrast to July, when Zach even lacked the strength to hold up his own head, Zach is able to hold his head up and sit up for up to twenty minutes at a time, with some help with balance. Zach has the core strength to lean forward by reaching his arms out at something, and he is able to roll himself to either side with great effort and with a target to reach for. He was able to regain a significant amount of muscle in his arms and legs and makes a challenging opponent for a right arm wrestle any day.

Zach’s brain injury has made it difficult for him to understand and control his body movements. He has re-learned how to catch large objects like pillows and big balls, but struggles to throw these objects, and to throw and catch smaller objects. It is hard for Zach to follow commands like “lean forward,” and he instead relies on target-based movements where he will reach out for an object or a high-five, and while doing so, lean his body forward. Zach still enjoys lots of games and activities like balloon volleyball, placing bean bags in a target, whacking pillows or stuffies onto the ground, and playing ping pong with his modified paddle.

Please join us in thanking God for all the ways that Zach’s physical abilities have improved since the summer. Please pray that Zach will be able to retain his mobility, flexibility, and strength. Pray also that he will be patient with the things that limit his independence, like relying on others to push his wheelchair and to transfer him to and from his bed. Pray that Zach will continue to play games suited to his physical abilities and find fun each day.

Physical Dexterity:

Zach’s occupational therapy team has been working hard since the summer to increase the strength and range of motion in Zach’s left wrist and hand. Since he was first hospitalized, he has gone through many splints, and just received a custom orthotic splint for his wrist this week that stretches his wrist a bit while leaving his fingers and thumb free for use. Zach uses his left arm for many things ever since his left shoulder subluxation resolved, and now prefers his left hand over his right arm for many activities.

Zach is able to pick up small objects with his left hand, usually from something the size of a grape to an orange. He struggles to pick them up if they are heavy, and he lacks the ability to straighten his wrist on his own, especially when he is holding an object. Zach uses a modified grip to pick up objects, where his wrist is turned down at about 90 degrees and he will pinch objects between his straightened fingers. Zach is also able to curl his fingers, but struggles to pick up objects using this grip. 

Zach has some special grip aids to help him hold smaller objects like utensils, but feeding himself is still a struggle. He is occasionally able to bring a bite of food to his mouth on a fork or spoon, but he cannot put more food on the utensil, and so he relies on us and his care team to feed him.

Please pray that Zach will be able to maintain and increase his dexterity in his left hand. Pray that he will continue to enjoy games like picking up small objects and bringing them to a target. Pray that his splints and other treatments for his wrist will be effective.

Daily Functions:

Zach is dependent on his family and care team for almost all his daily functions, including getting dressed, changing his brief, brushing his teeth, showering, transferring to and from his wheelchair, eating, and drinking. Since Zach still faces communication barriers, it can be difficult for us to understand his needs at times, which is frustrating for Zach. Please pray for patience for Zach as he relies on others for his basic needs.

Zach is cleared to receive soft foods, pureed textures, and thin fluids for his meals. He has difficulty coordinating chewing and swallowing, and he often needs reminders to swallow during meals. Zach also refuses thin fluids most of the time, possibly because he thinks he will choke while drinking them, so he receives juice with thickener for his meals for now, which he seems to enjoy. Zach’s nurses give him water through his PEG tube to ensure he remains hydrated even while he refuses thin liquids. Zach also really enjoys snacks from outside the care home like french fries, moist muffins, and ice cream!

Please pray for us and for Zach’s care team as we assist Zach in his daily functions. Pray that we will be able to understand Zach’s needs. Pray also that Zach will continue to enjoy eating and drinking, and that he will receive the nutrition he needs. 

Basic Cognitive Functions:

Zach’s brain injury is generalized and anoxic, meaning that tissue throughout his whole brain has been permanently damaged by the lack of oxygen during his septic shock and cardiac arrest. This has affected many of Zach’s cognitive functions, including planning, learning, and long-term and short-term memory. It is hard to determine what Zach remembers and understands due to his limited communication.

Any tasks that require focus, planning, motor coordination, or more than one step require a lot of cognitive effort from Zach. Zach is generally only able to do focused tasks for up to 20 minutes, depending on how much energy he has and how much he is invested in the task. Focusing for a sustained period of time can cause a lot of cognitive fatigue for Zach, which could explain why he is often so tired and sleeps late into the day.

Zach’s brain injury also comes with agitation, which we have mentioned in many blogs throughout the past months. When Zach is agitated, he often appears scared or angry and will flail or stomp with his arms and legs. It can take Zach a while to calm down from his episodes of agitation, which can make it difficult to deliver his daily care. Zach has experienced much less agitation in the last few weeks, including this past week, when his agitation has significantly decreased as he grew familiar with his new home and care team. Please join us in thanking God for Zach’s regulated mood and decreased agitation this week.

Please pray that Zach will feel safe and rest in God’s care. Pray that God will continue to keep Zach from significant agitation. Pray also for patience for Zach and his caregivers if his agitation does return. Pray for energy for Zach, especially as he works hard even to complete small cognitive tasks or communication. 

Communication:

Zach’s communication has also been impacted by his brain injury. The most significant barrier to his communication is that he is not able to talk. Zach struggles to make vocalizations, and to exhale at the same time that he is trying to speak. It is also a struggle for Zach to clearly form words with his lips and tongue, but he has established a consistent mouthed “yes” and “no,” which is his most frequent form of communication. Sometimes Zach has been able to mouth other words like “bed” and “piano,” but these are rare, and most of the time, it is hard for us to understand the words Zach is trying to form with his mouth. Please join us in thanking God that Zach is able to communicate with “yes” and “no.” Pray that he will continue to be able to mouth words and that we will understand him more.

Zach also has an erasable Boogie Board that we use to write two or three options at a time, like “chair” and “bed,” which he will point to with his right arm. Often, if there are more than three options or if Zach is feeling tired, he will not answer the question at all. Zach also has his custom eye tracking device for communication. With this device, Zach will look at an option and it will speak the words out loud. Zach is still learning how to use this device reliably, and so for now, it is difficult to tell what he intends to communicate, especially because he will often switch between two options like “More” and “Done.” Using his Boogie Board and his eye tracking device require a lot of cognitive effort for Zach. Please pray that Zach will grow in his ability to use his eye tracking device for communication so that he will be able to initiate more communication instead of waiting for us to ask him questions. Pray also that he will have the energy he needs to communicate with those around him.

Zach also uses his nonverbal communication like smiles, pointing, and silent laughter, which is how we know for sure that he still loves Sidney Crosby and the Pittsburgh Penguins. Zach loves to watch hockey games with his friends and he loves being silly, like by pointing at his reflection in the mirror and laughing. 

Please pray for Zach’s communication. Pray that we will understand what Zach is trying to say, and pray for patience for Zach. Pray also that Zach will know that God hears him, even when we cannot. Pray that Zach will know that God still listens to his prayers and cares deeply for him. 

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Please continue to keep Zach and his family in your regular prayers. Pray that Zach will feel God’s love, care, and nearness every day. Pray for strength, both physically and spiritually, as Zach walks the road that God has prepared for him. Thank you for your prayers and support over the many months of Zach’s hospital journey and recovery. May God bless you.

“Be still and know that I am God. I will be exalted among the nations, I will be exalted in the earth!” (Psalm 46:10)

“I am the good shepherd; I know my sheep and my sheep know me—just as the Father knows me and I know the Father—and I lay down my life for the sheep.” (John 10:14-15)