Jump to content

Prayer request


Sledgehammer

Recommended Posts

March 2, 2023

Journal Entry by Emily Leinenbach  53 minutes ago

Still working on weaning. We have hit some stalls in this but it still seems we are gaining some ground. I believe the cough will be key to this final push. 

We had a different neurologist come in and review Zach’s case at the request of our internist. His comment “it’s the worst case I’ve seen in 20 years”. “Truly catastrophic”. But- The only other case he had this bad did walk into his office for his one year follow up. His comments remind us it’s a long road but a road that leads to recovery. 

The next day our internist told us “this (being at kindred) will be the hardest part for Emily and the easiest part for Zach because at rehab it will feel like they are trying to kick your ass”. It was what Zach needed to hear because in all honesty I think he is looking forward to the challenge. 

and to be fair I would say this is not “easy” for Zach and not what our doc meant in a literal sense. I’ve said before and will reiterate- I have no clue how he is holding it together. He asks all the time about the farm, his work, general life. I know he is itching to be back in it, to just be outside… 

But his strength is definitely gaining, although slow.
 

We are thankful for his willpower, for the gains, and for technology that will help us in rehab. We are thankful for safe travel and for those helping us in so many ways. 

we continue to pray for complete healing. We pray specifically for diaphragm strength, cough, facial movement. We pray for independent breathing and return of normal
communication. 

We pray for gains in strength in his core, arms, legs. We pray for physical and mental strength and safe travel. 

thank you. 

  • Thanks 7
Link to comment
Share on other sites

Thank the Lord for strong character(s) and community, I see continual strength, faith, and grace, what a wonderful example you are to us all, I'm betting Zach can't wait and will more than meet the challenge 

  • Like 6
Link to comment
Share on other sites

49 minutes ago, hardtail said:

Thank the Lord for strong character(s) and community, I see continual strength, faith, and grace, what a wonderful example you are to us all, I'm betting Zach can't wait and will more than meet the challenge 

Can't say it enough. 

What an inspiration Zach and Emily are to the rest of us!

  • Like 5
Link to comment
Share on other sites

9 hours ago, sandhiller said:

We had a different neurologist come in and review Zach’s case at the request of our internist. His comment “it’s the worst case I’ve seen in 20 years”. “Truly catastrophic”. But- The only other case he had this bad did walk into his office for his one year follow up. His comments remind us it’s a long road but a road that leads to recovery.

The last couple posts from Emily seemed a little short. I wonder if the situation was starting to wear on her but this seems like a pickup. It gives a light at the end of the tunnel. 
Continuing to pray from NY 

  • Like 6
Link to comment
Share on other sites

I can't imagine how hard this is for them both. I don't always comment but think about them daily and read the updates. Looking forward to Zach getting to the place he can start to do a few small normal things for himself.  I'm sure that's a long road yet but he will get there.

 

 

 

 

  • Like 8
Link to comment
Share on other sites

2 hours ago, 1256pickett said:

The last couple posts from Emily seemed a little short. I wonder if the situation was starting to wear on her but this seems like a pickup. It gives a light at the end of the tunnel. 
Continuing to pray from NY 

It has to. 

The mental wear and tear of being there for Zach, watching the ups and downs, managing the family without his help and then coming on the site to report on the days progress or lack of. IHMO takes superhuman strength. 

 

1 hour ago, iowaboy1965 said:

I can't imagine how hard this is for them both. I don't always comment but think about them daily and read the updates. Looking forward to Zach getting to the place he can start to do a few small normal things for himself.  I'm sure that's a long road yet but he will get there.

 

 

 

 

Absolutely, and following along, I have nothing but confidence it will end well. 

Pray they to see steady and quickening improvement. 

And, I don't often enough but uplifting comments can be left on the Caring Bridge site to. 

I don't know how often Emily comes to the RPF and shows Zach comments here (think she does) but imagine she sees all on the CB site maybe more regularly. 

  • Like 7
Link to comment
Share on other sites

A little bit at a time.

March 3, 2023

Journal Entry by Emily Leinenbach  55 minutes ago

Still working on weaning. 

Still praying for stronger cough and facial movement. 

Muscle strength in areas of movement seems to be stronger today again. 

We are thankful for gains we see. We are thankful for safe travel. 

We continue to pray for complete healing. We pray for cough, facial movement, and independent breathing. 
We pray for continued strength in arms and legs and for continued gains in therapy in the coming week. 
We pray for return of normal communication. 

Thank you. 

  • Thanks 9
Link to comment
Share on other sites

March 4, 2023

Journal Entry by Emily Leinenbach  4 minutes ago

Still working on weaning down from breathing support. We are at a wall where more forward movement depends on stronger diaphragm and cough. 

For the past couple days we are seeing small facial movement and we can now see when Zach is smiling. That has been great. 

Looking forward to Monday and some steps up in therapy regimen. 

We are thankful for progress, safe travel, and support from family/friends. 

We continue to pray hard for complete healing. Specifically we pray for cough and diaphragm strength. We pray for facial movement. We pray for independent breathing and return of normal communication. 
We pray for continued gains in muscle strength and new areas of movement. 

thank you. 

  • Like 2
  • Thanks 6
Link to comment
Share on other sites

March 5, 2023

Journal Entry by Emily Leinenbach  2 minutes ago

Stepped down the support on breathing again today.  We have been up and down in this. We have continued on weaning modes but seems as we decrease we run into that “wall” and then go to a rest mode for a few hours then start back at a higher support. We will just keep working that system until cough and diaphragm finally respond and we can push through. 

We have been so focused on breathing but also celebrate gains in strength in any place we see them. 

Of course the emphasis on weaning is that until we wean Zach is connected to a machine keeping him from going outside, speaking, etc. So to move past that would be such a relief in so many ways. 

Having said that we are grateful to be moving to more steps in physical therapy and hoping this means we can engage more and ultimately get more from our time in intense rehab when we can transitio there. 

Thank you for your prayers and support. 

We are praying specifically for cough and diaphragm strength. We pray for facial movement, independent breathing, and normal communication. We also pray for continued strengthening in arms, legs, core muscles. We pray for physical and mental strength, and for safe travel. 

Thank you. 

  • Thanks 5
Link to comment
Share on other sites

Boy oh boy it's sure been some ups and downs.  Sure hope and pray that they the break thru that they are wanting soon..    Prayers for family and  Emily for stength and safe travels and for Zach.

  • Like 3
Link to comment
Share on other sites

March 6, 2023

Journal Entry by Emily Leinenbach  4 minutes ago

Continuing the back and forth with weaning protocol. Bring on the cough and string diaphragm!

Today PT got Zach up in a tilt table. Essentially what it sounds like- he is strapped for support and they slowly tilt table semi-upright to begin to reintroduce his body to his own weight through his legs. This is an exciting step because he had to have enough tone in his leg muscles to semi-support his weight to even begin this. Progress! 

We are thankful for all gains we see. We are grateful for support. 

We continue to pray for complete healing. We pray for strength in his diaphragm, strong cough reflex, and facial movement. 

We pray for continued gains in movement and function in arms, legs, hands, feet, and core muscles. 

We pray for physical and mental strength. We pray for safe travel. And- we pray in thanks for all of you praying along with us.

Thank you. 

  • Like 3
  • Thanks 5
Link to comment
Share on other sites

March 7, 2023

Journal Entry by Emily Leinenbach  24 minutes ago

Still working on weaning. 

The tilt table went well today too. We were able to advance to even a little more upright. 


We are thankful for gains and opportunities for progress to show. 


We continue to pray for complete healing. Specifically we pray for diaphragm strength, cough, and facial movement. 

We pray for strength and functional movement in arms, legs, core. 

We pray for physical and mental strength. 

thank you. 

  • Like 1
  • Thanks 7
Link to comment
Share on other sites

March 8, 2023

Journal Entry by Emily Leinenbach  19 minutes ago

Continuing to work on weaning from vent. 
 

Today was day 2 of 3 in this run of IVIG. 
 

The tilt table went well again today. 
 

We are certainly so grateful for the gains we have seen. It’s hard to describe or quantify the muscle movement or strength. 
The first step seems to be the beginning of a movement followed by a long road of building strength and then re-training each area to respond and to build up enough to be functional.  We are in the early stage of building strength.

We continue to pray for Zach’s complete healing and feel strongly he will get there. 
We are anxious to reach independent breathing and being liberated from vent.  So- we pray hard for diaphragm strength, cough, and facial movement. 
We also pray to continue strength building in arms, legs, core muscles. 
We pray for continued daily progress, physical and mental strength, and safe travel. 
 

thank you. 

  • Like 1
  • Thanks 7
Link to comment
Share on other sites

March 10, 2023

Journal Entry by Emily Leinenbach  1 hour ago

We finished IVIG round this week, completed 1 full week of PT with tilt table, and started speech therapy. Speech therapy is to help use a speaking valve with vent so there can be exercise to vocal cords and it’s also a good way to stimulate different parts of breathing. Because of all the pressure from vent and just the general process and problems caused by GBS he is still not able to speak with the valve at this point. 

We are in a much better place now than we were even 3 weeks ago. But it’s still hard to forget or ignore  how far we have to go. Bottom line is- challenge accepted. We will get there. Through all the tiny steps to get to the big things. 
 

We are so thankful for the progress we have had. We are thankful for the support. We are thankful to those helping us keep life at home moving. We couldn’t do it alone and I know that it is a big part of keeping Zach working to beat the odds of his “worst of the worst” scenario so he can get back to it all. 
 

We continue to pray for complete healing. 
We pray specifically at this time for independent breathing/liberation from vent, normal speech, diaphragm strength, cough, and facial movement. 
We ask for continued gains in strength and ultimately movement and functional progress. 
We ask for protection from secondary problems. 
We pray for physical and mental strength, safe travel, and daily progress. 
 

Thank you. 

  • Like 1
  • Thanks 6
Link to comment
Share on other sites

Really sets in how fragile life is and the complexity of the human body.

The strength and willpower of Zach and Emily continue to be an inspiration to me.

The Lord is definitely working with them and the team attending his recovery.

My prayers that the improvements continue and solidify his full and complete recovery 

  • Like 7
Link to comment
Share on other sites

March 11, 2023

Journal Entry by Emily Leinenbach  2 hours ago

We are still working breathing trial. If Zach does well through night on this setting we will trial a different machine that still provides support but is actually “off vent” (but not yet independent breathing). We hope to try this a couple hours tomorrow and then continue to work through steps for weaning off vent. 

W appreciate the support. We are so thankful for progress. We are So grateful for those we have crossed paths with across the country to exchange stories and hear of their progress. 


We continue to pray hardest for independent breathing, diaphragm strength, cough, facial movement. We pray for complete healing. 

We pray for continued strength building in arms and legs, return of functional movement, normal communication. 

We pray for physical and mental strength, safe travel, and in thanks for the help and support we have received. 


Thank you. 

  • Like 4
  • Thanks 4
Link to comment
Share on other sites

March 12, 2023

Journal Entry by Emily Leinenbach  19 minutes ago

Unfortunately, blood gasses weren’t what we needed today. So we weren’t able to move to the next phase but we will try again tomorrow. 
As always- tomorrow brings hope for another chance for positive change. 

We are very thankful for the progress we have made so far. We look forward to our progress toward recovery. 
 

We pray hard for that complete healing. We pray specifically for diaphragm strength, cough, facial movement. We pray for building of strength in arms, legs, neck, and core. We pray for functional movement. 
We pray in thanks for those helping us juggle life with this illness and those prayer with and for us. 
 

thank you. 

  • Like 1
  • Thanks 5
Link to comment
Share on other sites

March 13, 2023

Journal Entry by Emily Leinenbach  1 hour ago

Continuing the work of weaning from vent. And that’s really what it is- work. Like every muscle we have seen start to show signs of recovery it takes continuous work and exercise to build to noticeable movement, then to strength, and to eventual full functional moving. 

The diaphragm seems to be behaving the same way. That really what makes Zach’s  case one of the “worst” (although no case is good by any means). His diaphragm was also affected- which is not typical. So we have to keep working that key area in order to get basic functions back that allow maintaining airway and independent breathing. It’s hard to even imagine the hundreds of process that happen for even the simplest things in our body to work. And now Zach’s body has to rebuild pathways for all of them. 

Recovery is in front of us- we just don’t yet know how far. 
 

So we pray for strength on this journey, Patience, and continued growth in faith. 
We pray for complete healing. Specifically we ask for diaphragm strength, cough, facial movement. We pray for progress daily to independent breathing, return of normal communication/speaking. We pray for continued gains in strength of arms, legs, hands, feet, core muscles. 
We pray for safe travel and daily wins- no matter how small. 

Thank you. 

  • Like 3
  • Thanks 6
Link to comment
Share on other sites

A good report:

 

March 14, 2023

Journal Entry by Emily Leinenbach  5 minutes ago

 Zach sat on the side of the bed with therapy today. 

After getting sat up on the side of bed- he was able to hold head up on his own and initiate some rocking motion back and forth. 

We are grateful for this success/progress. When we first transferred to Kindred and did evaluation where they sat him up on the side of bed it took 3 of us to hold him upright and nearly all I could do to keep his head supported midline. As slow as this feels some days we are reminded at times like this that we are still moving forward. 

And we know- this is guillian barre. We often say it’s “slow” but in fact- this is the expected course for guillian barre. His body is literally rebuilding its nervous system and then as connections are made he has to re-learn muscle movement and strengthen areas that haven been able to move now for months. All while still fighting off the original cause and still working to rebuild other areas. We know this recovery will be long because there was no outward movement/area not affected so there is a lot of rebuilding to be done. 


And so we continue to pray for that rebuilding and strength on the road to complete recovery. We pray for diaphragm strength, cough, return of normal communication (ability to speak). We pray for continued daily progress and for strength building in arms, legs, hands, and feet. We pray for safe travel, patience, and reassurances in our day. 


Thank you. 

  • Thanks 10
Link to comment
Share on other sites

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! 

  • Like 5
Link to comment
Share on other sites

Join the conversation

You can post now and register later. If you have an account, sign in now to post with your account.

Guest
Unfortunately, your content contains terms that we do not allow. Please edit your content to remove the highlighted words below.
Reply to this topic...

×   Pasted as rich text.   Paste as plain text instead

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.

×
×
  • Create New...