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Sledgehammer

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10 hours ago, vtfireman85 said:

He's a real fighter, and gives perspective , a reminder whenever I think i have had a rough day, i need to remember what they are going through.
This is serious progress! 

Absolutely right.

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March 15, 2023

Journal Entry by Emily Leinenbach  12 minutes ago

No major changes to update today. 

Continue to refine our plan for weaning and strength building. 

Thank you for your support, comments, prayers. They make the heavy days a little lighter. 

We continue to pray for complete healing- specifically for diaphragm strength, accessory muscle strength, facial movement, and independent breathing. We pray for continued gains in strength in arms, legs, and core muscles as well. 

We pray for a restful night, patience, and reassurances/daily progress. We pray for safe travel. 

Thank you. 

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March 16, 2023

Journal Entry by Emily Leinenbach  21 minutes ago

Still working on the weaning from vent process. We have slowed this down as we wait for certain movement to fire strip bc enough to completely liberate from vent. 
 

Still working with PT. Sat on side of bed again today and do exercises while sitting. I think he gets a lot out of this particular regimen  because he can initiate some of the movements on his own. I think his legs seem to be showing more movement and strength although the PT does not reciprocate that, she also has not done a re-evaluation of that this week so I’m still counting that as progress. 

We are grateful for daily progress. And so grateful for the gains of the last month collectively. 

We continue to pray for independent breathing, return of normal communication, and complete healing. 
We pray specifically for diaphragm strength, strong cough reflex to protect the airway, facial movement. We pray for continued building of strength in legs, arms, core, and for movement and function in hands and feet. 
We pray for patience, strength, and continued daily reassurances. 
 

Thank you. 

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March 17, 2023

Journal Entry by Emily Leinenbach  7 minutes ago

Time marches on… 

Continuing to keep priority on vent weaning but still working on fostering gains anywhere they come.

Please continue to pray with us for diaphragm strength, cough and reflexes to ensure airway protection, facial movement and vent liberation/independent breathing.

We also pray for continued strength building in legs, arms, core, feet, hands. We pray for patience, strength, and continued daily assurances/progress. 


Thank you. 

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March 18, 2023

Journal Entry by Emily Leinenbach  8 hours ago

Continuing to work through secondary issues affecting vent weaning. Still pushing to exercise that and build up every day. 

Please continue to pray for strong diaphragm and cough, abdominal muscle strength, facial movement, and independent breathing. 

Please pray for continued gains in strength and function in arms, legs, core and movement in feet and hands. 

We pray for safe travel, daily reassurances and progress, and physical and mental strength. 

Thank you. 

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March 19, 2023

Journal Entry by Emily Leinenbach  27 minutes ago

We met all goals with the current step of weaning from vent today. Tomorrow we work to the next goal. Hoping for a restful night and continued progress. 

We are thankful for the gains we have seen. It is a challenge to focus on how far we have come and not how far to go. but looking back over the last couple weeks it is obvious strength is building. Still a lot of work to do but good to see things starting to connect. 


We continue to pray for complete healing, patience, and strength. We pray for diaphragm strength, cough, accessory muscle/core strength, facial movement and vent liberation. 
We pray for continued daily gains and assurances. We pray for strength building in legs and arms and movement in hands and feet. We pray for safe travel. 


Thank you 

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March 20, 2023

Journal Entry by Emily Leinenbach  1 hour ago

We are about 2 hours away from hitting todays goal with weaning. Still going strong so appears today will be a successful day too. 

We pray hard for strength mentally and in diaphragm and core/accessory muscles as we get ready for the next steps of weaning from vent. 

We continue to pray for cough and more facial movement as well. 

We pray for continued strength building in legs and arms- and return of functional movement. We pray for movement in hands/fingers and feet/toes and for continued daily gains and assurances. 

We pray for physical and mental strength, safe travel, and patience as we continue on.

Thank you. 

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March 21, 2023

Journal Entry by Emily Leinenbach  3 minutes ago

We are pulling hard to cross a hurdle with weaning and hoping for a good night and the green light to get to next phase tomorrow. 

Today was day 1 of this round of IVIG. 

Continuing to work with PT daily too and we are seeing improved strength. It is very hard to quantify or describe the progress because as expected with GBS recovery- it’s slow and minute but string together to bring back function. Because of this I feel like a lot of the latest posts are pretty redundant. I am going to post a least a few times a week and anytime there is notable news, but there may be days without a post/update. 

Our daily prayer continues to be for complete healing, continued gains, and daily progress/reassurances. 
We are praying specifically for diaphragm strength, cough, facial movement, and vent liberation. 
We pray for strengthening of core muscles, arms, and legs. 
We pray for movement through feet, hands, and return of functional movement. 
We pray for physical and mental strength, safe travel, and in thanks for progress we have seen and this supporting us. 

Thank you. 

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March 21, 2023

Journal Entry by Emily Leinenbach  3 minutes ago

We are pulling hard to cross a hurdle with weaning and hoping for a good night and the green light to get to next phase tomorrow. 

Today was day 1 of this round of IVIG. 

Continuing to work with PT daily too and we are seeing improved strength. It is very hard to quantify or describe the progress because as expected with GBS recovery- it’s slow and minute but string together to bring back function. Because of this I feel like a lot of the latest posts are pretty redundant. I am going to post a least a few times a week and anytime there is notable news, but there may be days without a post/update. 

Our daily prayer continues to be for complete healing, continued gains, and daily progress/reassurances. 
We are praying specifically for diaphragm strength, cough, facial movement, and vent liberation. 
We pray for strengthening of core muscles, arms, and legs. 
We pray for movement through feet, hands, and return of functional movement. 
We pray for physical and mental strength, safe travel, and in thanks for progress we have seen and this supporting us. 

Thank you. 

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March 25, 2023

Journal Entry by Emily Leinenbach  18 minutes ago

The last few days have been focusing on adding in something called airvo. This is a way to transition off the vent. The airvo is intended to deliver high flow oxygen and is being used to help as an “in-between” step to fully off vent. Nevertheless- when on airvo he is not using vent support and we made an hour today. We will continue to build muscle and tolerance to this as the next phase of weaning. 

We are still working on building strength with physical therapy as well. GBS progress is expected to be slow and hoped to be steady. We are thankful to be seeing improvements in strength and for Zach’s ability to work through discomfort to continue to build up. 

This part of the journey (particularly in regard to transitions with weaning/vent) is taking a lot of mental strength and patience and we absolutely appreciate prayers and support/encouragement. 


We continue to pray for complete healing. We pray specifically for diaphragm strength/cough, facial movement, vent liberation. We pray for patience and strength through and success with transitions. 
We pray for continued daily progress and strength building in arms, legs, and core. We pray for movement in hands and feet. We pray for physical and mental strength, avoidance of secondary issues, safe travel, and continued daily assurances. 

We are thankful for the blessings of family/friends/community, for invested staff, and faith/hope. 

Thank you. 

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It becomes easy to get wrapped up in my own life.

But Zach and Emily are doing battle all day every day. A fight for life.

It only takes a few short minutes to remember them in our prayers and send positive thoughts their way.

I pray for mental and physical strength.

Patience and an unwavering belief that the Lord has more in store for Zach.

And that we will see improvement happening on a larger and quicker scale.

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6 hours ago, sandhiller said:

It becomes easy to get wrapped up in my own life.

But Zach and Emily are doing battle all day every day. A fight for life.

It only takes a few short minutes to remember them in our prayers and send positive thoughts their way.

I pray for mental and physical strength.

Patience and an unwavering belief that the Lord has more in store for Zach.

And that we will see improvement happening on a larger and quicker scale.

Amen to that.

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3 minutes ago, Rawleigh99 said:

He's still moving in the right direction, no matter how slowly! These things take time unfortunately

Right you are sir. I worry about the bills once he pulls out of this. Even with gold-plated insurance there is going to be a day of reckoning. A fundraiser of some sort will be nesaceary.

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1 hour ago, DT Fan said:

Right you are sir. I worry about the bills once he pulls out of this. Even with gold-plated insurance there is going to be a day of reckoning. A fundraiser of some sort will be nesaceary.

When our younger son was so sick with E. Coli I’m sure there was a huge hospital bill incurred from his 23 day stay, in and out of the ICU.  What it was I will probably never know as we never saw a thing from it, save for a $1,300 bill for the lab test that diagnosed what he had.  That probably was courtesy of the local ER doc who apparently was a little pissy that my wife insisted for a stool test for E. Coli O157 as he didn’t think that’s what it was.  

If nothing else there will probably be some pretty substantial costs just for traveling for Leinenbachs.  

 

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March 29, 2023

Journal Entry by Emily Leinenbach  44 minutes ago

Work on weaning from the vent continues- Zach did 5 hours of Airvo today! His cough seems to be stronger as well which is a very important part of being able to successfully wean. 


We are grateful to see continued gains in strength otherwise as well. He has continued to work with therapy Monday to Friday. Everyday he seems a little stronger. We just have to remember that in his case he lost everything so it will take time to gain that back but if we keep making gains, even small gains, daily- we will get there. Every day is one day closer. 

We continue to pray for complete healing. We pray in thanks for support from friends, family, community. 

We pray for diaphragm strength, cough, facial movement. We pray for continued progress with weaning and ultimately vent liberation. We pray for continued gains and progress with physical therapy- particularly leg strength, hand and feet movement. 

We pray for safe travel, daily assurances, and patience. 


thank you. 

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11 minutes ago, Wes806 said:

So glad to hear that he making small but forward gains.  Prayers for healing and safe travels

Going on four months now, and a strong cough is good progress.  Makes my troubles seem minor.

What strong, tough people.

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1 hour ago, Steve C. said:

What strong, tough people.

That they are for sure. It sure has made me think about what things that have or has gone wrong and it is nothing to what they have gone thru or  that they face thru the fays ahead.

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Glad to see a report from Emily after going a few days without one 

She has earned a few days off.

Keep praying for steady improvement 

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April 1, 2023

Journal Entry by Emily Leinenbach  54 minutes ago

Focus and goal is vent liberation. 

Zach did 8 hours off the vent today. To help work but also rest effectively we have been splitting that into two runs, each 4 hours. We will keep extending those run times to build endurance. The respiratory team here wanted him to transition from vent to airvo then off. The airvo gives a higher flow of air that feel different than what completely off will feel. 

This has been the saga- each “step” opens up to really being several steps to achieve the check off so to speak. He is doing well so we continue to follow the directive and just patiently (on most days, some not so patiently) wait for his body to build up and look forward to these days of the vent being behind us. 

He seems to be building strength. This is similar to the breathing and very hard to out into words. Even though he is getting stronger and has movement in arms and legs, he still can not work against gravity and lift or independently move arms or legs. We do range of motion and exercises and I can feel that he has more control and I assist a little less in some area nearly daily. 

We pray in thanks for progress we have seen, support of family and friends, and the hope and faith in recovery. 
We continue to pray for complete healing. 
We pray for independent breathing/vent liberation. We pray for cough, core, and diaphragm strength. 

We pray for continued returns of facial movement. We pray for building strength in arms and legs and formovement in hands and feet. 

We pray for physical and mental strength, patience, and safe travel. We pray for daily assurances and continued daily progress. 

Thank you. 

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