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February 10, 2023

Journal Entry by Emily Leinenbach  6 minutes ago

Today Zach made 13 hours in breathing trial!

Movements from yesterday are still there today. Hoping to see those continue to strengthen and lead to other things. 
 

I was in town today and ran into several people who asked “how are you” and not just in the passing kind of way. And out of typical reflex I said “good. You?”. One person looked at me and said- “really? You are ok?”

And the true answer to that is yes. Most of the time. This situation is far from ideal. I would choose many circumstances over these. But I can still honestly say I am ok, even almost good some days because Zach is good. Not in the way I want him to be. And it is still agonizing to wait for the movement that we need. Terrible to watch him have to endure. But also- kind of amazing to think of what he is going through and still see the fight in him. The sense of humor. 

To know how upsetting this all is for his friends and still watch them come together to do anything they can to help him. 

To know our kids lives/routines have been vastly changed but still see them genuinely laugh. To see them succeed at school, etc.  despite their underlying stress/unrest. 

To know we have asked for huge sacrifice from family staying on days I’m home in terms of time but also the work it takes to be bedside in this situation and to have them do it graciously. 

It is a testament to the depth and character of “our people”, our community. And so it’s a terrible situation but I really mean it most of the time when I say out of habit “good, and you?” 

I have always loved the serenity prayer and even had a friend give me a keychain with it on it in high school that I kept for years. The older I get and the more that happens the more depth those words take on.

God grant me the serenity to accept the things I can not change 
the courage to change the things I can
and the wisdom to know the difference. 

fine lines between these words… 
How do you accept where you are without accepting what is current as the final destination?
How do you change what you can while also accepting what you have?
I guess that’s where the wisdom comes in 😉 

We are so grateful for our faith, our community, our family. 


We pray for continued and complete healing for Zach. 
We pray for strengthening of accessory muscles and facial nerves needed for independent breathing and return of normal communication. 

We pray for continued strengthen of movement we have seen starting.
We pray for new movement and nerve awakening in other areas leading to full functional recovery and optimized time in rehab. 

We pray for physical and mental strength. 

We pray for safety and a smooth day for those helping with a project at the farm. 

thank you. 

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17 minutes ago, hardtail said:

This is a wonderful example for us all ♥️

I'm drawing strength from their fight.

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February 11, 2023

Journal Entry by Emily Leinenbach  4 minutes ago

6 hours today in breathing trial. This seems to be a pattern for Zach and we are told this is expected and actually likely better in the end - long runs/days and follow with shorter periods on trial and more rest. 

Zach has continued to be up in chair nearly daily. This is mostly to help work some core strength as well as get his body used to position changes to avoid later positional fluctuations in blood pressure/heart rate. 

He also kept busy today with videos I was sending of his friends tearing a building down for us that had damage and needed to come down. 

There was also a prayer service tonight and it was genuinely touching to see the number of people there to support Zach and our family. The prayers are priceless and we appreciate everyone’s support and encouragement so much. Thank you to all those unable to be there in person but praying along with us. 

We are so grateful to our community, thankful for the progress Zach had made up to this point, and thankful for the great weather today for the project. 

We continue to pray for complete healing. We pray for strengthening and progression of movements we have seen so far. We pray for awakening of facial nerve and strengthening of accessory muscles needed for independent breathing. We pray for continued healing and awakening of nerves in all areas and functional movement return.
We pray for physical and mental strength.


Thank you.  

 

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February 12, 2023

Journal Entry by Emily Leinenbach  5 minutes ago

13  1/2 hours and counting for breathing trial! 
 

We are so grateful for each progressive step. We are grateful for family, friends, community and the weather today. 
 

We continue to pray for complete healing. We pray for strengthening of reflexes and muscles needed to support breathing and normal communication. We pray for awakening of facial nerve. 
We pray for strengthening of other movements, continued progress, and new movement that will allow optimized time at rehab. We pray for physical and mental strength and safe travel. 

Thank you. 

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Way to go, Zach!

February 13, 2023

Journal Entry by Emily Leinenbach  4 minutes ago

Total from the last run in breathing trial was 29 hours!! 

To go to next phase of weaning he would go from this setting to a more difficult one and then start slow and work up to more and more time. They wanted him to rest before they transition to that step- so hoping for a restful night and a good day tomorrow again. 
 

We are so thankful for progress. 
We are thankful for the days of nice weather although it does make me wish Zach could be out in it. 
 

We continue to pray for complete healing. Specifically- we pray to strengthen muscles that support breathing so he can continue to advance. We pray for restoration  of facial nerve and movement. 
We pray for simultaneous strengthening of areas starting to move and new areas to “wake up” and movements to synchronize into functional movement. 
We pray for well timed recovery of function so we can optimize our time in rehab once we get off the breathing support. 
We pray for physical and mental strength as well as avoidance of any secondary problems (pneumonia, etc.) 

Thank you. 

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More progress:

February 14, 2023

Journal Entry by Emily Leinenbach  16 minutes ago

Zach was back on full support (ventilation) yesterday mid morning until earlier this morning for a break. We are now over 14 hours into this run. 
If he continues to do well with this the plan will be to turn down the pressure support further tomorrow and let him continue to go as long as he can. 
 

Movements are getting stronger. Head and neck movement is much more “normal”. Shoulder movement is stronger. There are some signs/sensations he is getting that make us optimistic for more facial movement to come. 
 

We are thankful for the progress. We are so thankful for the support. 

We continue to pray for complete healing and for return of reflexes needed to move to independent breathing. We pray for facial nerve awakening and return of movement. We pray for continued success weaning down pressure support. We pray for movement gains body wide so that we may optimize our access to PT resources. We pray to avoid secondary complications like pneumonia. We pray for physical and mental strength,

Thank you. 

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5 minutes ago, hardtail said:

I'm thinking Zach would want to pass on Happy Valentines Day for him, he's obviously blessed with the love of a wonderful woman

You got that right.

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Emily's positive outlook always gives my day a boost. I had health problem back in 16 and know it strengthened my faith in God.  What a way to develop greater faith. As others have said God never gives us to much to bare. But sure take a big growth of faith sometimes. 

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February 15, 2023

Journal Entry by Emily Leinenbach  1 hour ago

They stopped the trial/switched back to more supportive mode around midnight Tuesday BUT turned the actual pressure support down. 
 

Restarted pressure support mode (but at the lower setting) around 11 today (Wednesday) and still going strong now. 

The movements through neck, shoulders are stronger. 
There was some leg movement in both legs today that seems to be driven from his low back but pretty awesome to see things progressing to a strength where they can impact/help other areas! 
 

We are thankful for the progress. 
We are grateful to the support and prayer of/from community, friends, and family that helps keep us going strong. 
 

We continue to pray for complete healing. We pray for strengthening of muscles/reflexes that will support and ultimately lead to independent breathing. We pray for awakening of and normal function of facial nerve. 
We pray for continued strengthening of muscles/movements we have seen. We pray for more functional movement in arms/legs that will allow optimization of rehab time. 
We pray for physical and mental strength and safe travel. 
 

Thank you. 

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February 16, 2023

Journal Entry by Emily Leinenbach  1 hour ago

Still on CPAP/ in weaning trial! 

At the 24 hour mark they decreased his pressure support further and we are now 12 hours into that (if you are counting- that’s 36 hours so far- beating his record 🙌🏻 😉

The plan is for him to rest if he gets tired but if he doesn’t, to decrease to less support tomorrow and keep going. 

He seems to have more strength in his back/shoulder muscles. It is still very difficult even to overcome gravity but is a welcome sign of nerves connecting. 

We are so grateful for the progress. 

We are thankful for those supporting us. 

We continue to pray for complete healing. We pray for facial nerve recovery. We pray to continue to see strength in accessory muscles supporting breathing and for weaning progress and independent breathing, return of normal communication. 
We pray for simultaneous return of nerves/movement in arms and legs, core muscles so that he can optimize time in therapy/rehab. 
We pray for physical and mental strength and safe travel. 

Thank you. 

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February 17, 2023

Journal Entry by Emily Leinenbach  5 minutes ago

60 hours on cpap/trial.  Pressure support turned down again this morning.  This will continued to be decreased through weekend as long as things look good. 
 

We are so thankful for this progress. 
We are grateful for the people supporting us. 
 

We continue to pray for complete healing. 
we pray for rejuvenation of the facial nerve. We pray for strengthening of accessory muscles and reflexes to help us continue- and ultimately completely- wean. we pray for return of normal communication. We pray for continued strengthening of movement and areas we’ve seen so far. We pray for continued, simultaneous healing/rejuvenation of nerves in the rest of his body, particularly in arms and legs so we can continue to progress as well as make the most of rehab time. 
We pray for avoidance of any secondary problems. We pray for physical and mental strength. We pray for safe travel.

thank you.

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