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October
2
2020

October 02, 2020

Good morning to all of you around the world!!! 
I have heard that people have been praying for Stephen from all over EARTH!! 


I wanted to let you all know that TODAY is the day Stephen goes home!!!! 

20 weeks of recovery!!! 

Thank you for all of your prayers and thoughts!!! 

We thank God above for allowing us to witness this miracle. Remember the song Wonder by Natalie Merchant I posted from the beginning? 

“Doctors have come from distant cities, just to see me. Standing over my bed, disbelieving what they’re seeing- 

They say I must be one of the wonders of God’s own creation.”

Indeed!! Stephen is!!! 

Pics to follow!!! 


Much love, Cynthia and Family

(Ps- out of curiosity- if you are in another country- could you please in the comments tell us where you are from? It would be cool to know!)

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September
11
2020

September 10, 2020

Dear everyone- 

I have been waiting for the right update to give you all! Take a seat, grab a cup of tea and enjoy the long read.

 

Tomorrow will be 18 weeks- 18 weeks since Stephen was admitted for Covid 19. 

He has gone through respiratory failure on a ventilator, pneumonia, sepsis, shock, renal failure, bacteremia, serious pressure ulcers, seizures, numerous transfusions, a tracheotomy, a feeding tube and countless IVs. A human with a normal immune system most likely would not have survived. And because of his Down Syndrome, his immune system is sooooo NOT normal...But he did survive, and he has been inspiring us all along the way to be strong, to carry on. 

 

Today I am so happy to report that he is free of his trach, finally free of his G-tube; no more catheters, his ulcers have all healed and his kidneys have recovered! He is eating well on his own, and breathing completely without any support. Thank you God. 

 

For those of you who know Stephen, you know he is a man of few words. And most of the time, he cannot be understood very well. But there are times where he is very clear. 

 

Just 3 days ago, he rubbed his chest, and took a deep breath, and clearly said, “I feel better.” And then he took another deep breath, followed by a looooong exhalation and said, “See? I’m better.” Unbelievable that he could verbalize that. I felt so good for him- and thought, finally! Finally he’ll get even stronger now. And he did- that day he walked! With much assistance, but he did. 

 

He now belongs to a group of Covid “Long Haulers.” These extraordinary people survived Covid but have residual symptoms-weakness, fatigue, body aches, skin discomfort, hair loss. All of these things he has. Besides his inability to walk, his hair loss is most perplexing to me, and sad. He always had thick, thick hair. Hopefully his hair and strength will come back to what they used to be! But hey- he’s smiling! 

 

We have listened to music- so much music! A mix of genres- from Mozart to The Beatles; Elvis to Justin Timberlake; and Bruno Mars! Sometimes nothing would wake him up except music. 

 

Rehab has been tough. Stephen is difficult to motivate- he knows it is hard work! He doesn’t start physical therapy when the therapist wants to start. He starts physical therapy when HE wants to start, and so we have to take advantage of it when he’s in the mood. Being in the gym at the rehab facility allows him to see others also working towards the same goal to get stronger; to get back to where they used to be. I love it when he sees a tiny, frail, elderly woman trying her best to walk- he looks at her, and then he stands. 

 

 

His personality and kindness is there; today I witnessed something very, very touching, and I’d like to share it with you because I find it incredible what we learn from people with disabilities. Lessons that I have gotten from Stephen from when we were children and continue until now, as a grown adult who seemingly has seen so much. 

 

Stephen finally enjoys being on the bike. And next to him today was a man who had an amputated leg. I could tell that it was a new condition, and I was trying to block Stephen from seeing him, fearing he would say something that would make him  (and me) uncomfortable. Well, he sure did see him- and noticed it right away. He said to me, “Aw Ceetya (his way of saying my name), look at his leg.” I tried to distract him, but I couldn’t! And he turned to make sure he could see the man, and said, “Sir? Are you alright?” “Yes, I’m alright,” the man responded kindly. “Sir, be careful,” Stephen told him. To my relief, the gentleman didn’t seem hurt, or uncomfortable. He chuckled a little bit, and said, “Sounds like you know me!” 

 

Well, we continued with therapy, and had to continue to cheer and encourage Stephen to stand, and to try, hopefully, to walk. This nice man, was in his wheelchair, and joined in the encouraging. And he wheeled himself along side the parallel bars, cheering on, while Stephen worked so hard to walk. 

 

What can I say? There were so many lessons, but they are all captured by kindness. Kindness counts always.

 

So, what now? We are on the launching pad to go home! We are waiting to hear exactly when that day is. Hopefully he can walk a little bit with a walker before he is discharged. 

 

We are thankful for his medical teams, the doctors, nurses, aides, and therapists who have made his recovery possible. The care and dignity they showed in day to day tasks, easy or hard- have not gone unnoticed. We are grateful for the humor, the perseverance, and compassion. 

 

We are so thankful for your prayers and good thoughts. We are all connected in one way or another. Thank you all so much. 

 

I wish that families were allowed in to see their loved ones during these times. Although it is has been so hard to see Stephen go through this, I am so privileged to have witnessed the miracle of his survival. He truly has strength like no other person I know. I’m so glad that you have been able to follow his story.

 

We’ll let you know when he is going home!! Be on the lookout! 

With much love to all, 

Cynthia

July
23
2020

July 22, 2020

Hello friends and family!! 
Today Stephen was finally moved from the long term care acute facility (basically a convalescent hospital) to a skilled nursing facility for rehab! And it’s so close to home!! 

What a great day! We can now REALLY move on his physical therapy. 

He has been through so much at the last hospital-including  a new pneumonia, a blood infection from his central line, and dehydration with high sodium. He definitely had some low moments... I have never seen my brother sob, but one day he did. And all I could do was hold him. I understood how tired he is of all this. I wish I could have taken all of it away. 

BUT! He is so much better. He has recovered from his kidney failure and is now urinating a normal amount. The kidney specialist thinks he will mostly recover, not fully, but well enough. So no more IVs! No more dialysis catheters!! 

He is off the vent, but still with a trach. The pulmonologist wants to keep it until he loses more weight and gets to a healthy BMI of 30 or less (!) and until he can walk 3 miles. Those are tough goals. It seems his weight is really what did him in with this infection. So, if you have been needing some motivation to get more healthy- let Stephen inspire you  to get to where you need to be! 

He is still primarily tube fed. The most he has gotten by mouth is about 4 ounces of apple sauce. He needs speech therapy as well to make sure he can safely swallow foods. 

He has been talking more, letting us know he wants a shower! Wouldn’t we all after over 2 months? Hopefully at the rehab place they can help him to get to do those things we all take for granted, like getting from the bed to a sitting position, taking a shower, drinking liquids, moving around.  He is determined—so we know he’ll get there. 

We know that Stephen wouldn’t be here without all your prayers. And we don’t want them to stop-
But you know how people cheer runners at a marathon?? Let’s cheer Stephen to his finish line!! 

His youngest niece, my daughter, has heard me talking A LOT about Stephen.... and she asked me just yesterday: “Is Uncle Stevie still having some bad things happen to him, or he just being brave now and getting better?”

Of course I answered- He’s been brave all along, and YES! He is getting better. No more bad things.

Thank you , thank you all!! 

I’ll update you as he makes more progress. 

June
29
2020

June 28, 2020

Hello everyone! 
Today is day #51 (yes, it’s been over 7 weeks!!!) since Stephen was hospitalized. And he finally made it over 24 hours without the vent!!! And today his kidneys finally show that they are recovering!!! It has been a great weekend for him. 

He is much, much stronger, and is expressing himself very well- the trick is to be patient, since he cannot vocalize, you have to work to understand his hand motions. But he gets his messages across. 

His smile is amazing! And he gives fist bumps to the medical team, and thumbs up when they have helped him out. You can tell that he is thankful. 

He desperately needs a shave and a haircut- who knew his mustache would have red highlights??? And is it possible that he could have so much grey in his beard without one grey hair on his head?! We would never have known- he was always quite meticulous about shaving. 

Now we should get him started on his rehab. He certainly has the stamina for it now. He was trying to sit up on the side of the bed, but without the physical therapist there, the nurse wasn’t able to let him.  So he is showing signs that he is ready to move on to the next step. And hopefully, once he is off the vent, and done with dialysis,   he can be transferred closer to home. 

Please keep up those prayers- they are working. Thank you everyone, and thank you,  Lord, he is getting better! 

Cynthia 

June
26
2020

June 26, 2020

Hi everyone-thank to everyone who has reached out to ask how Stephen is doing. He is continuing to show progress. This tunnel is a long one for sure, but there is a nice warm glowing light at the end of it. I can feel it. He still has his Trach, but yesterday was on the absolute lowest setting of support-the machine no longer provides the breaths for him, he is breathing spontaneously. It is giving him the lowest amount of oxygen, and it is giving him the lowest setting of CPAP. So.... now for the team to decide when they will go to completely testing him on his own. He doesn’t like the trach-and has pulled it out twice. But it was easily replaced.

Do you know what that defiance means though? He has gotten his spunk back! Off all sedation, his personality is coming out again. He smiles, laughs, and asks to say his prayers!!!! (And also lets the nurses know what he doesn’t like.)

Yesterday, I noticed for the first time that his hand shake was STRONG. For those of you who know Stephen, you remember, he had a REAL HAND SHAKE. Not that weak one people make fun of. His is impressive! So that was good to feel. I kind of used that hand shake as a gauge for how he was doing. And it was fun to to do our little playful hand shake too. He was able to hold a magazine (Road and Track-one of his faves), clap to music—(thank you Justin Timberlake!)—things he couldn’t do before. He is moving his legs a bit more, but he is still too weak to get to a sitting position, so he remains on his back, which isn’t good. He desperately needs good occupational and physical therapy, but I think he is a challenge to the team- he is more childlike in this respect, and needs a kind of play-based therapy to get him to do exercises. 

Unfortunately, he still needs dialysis, but his kidney function tests were improved. 

I saw a review the other day of another medication that improved outcomes in people with severe COVID, which Stephen received early on. I was telling my mom, for everything that Stephen’s body was doing wrong during this infection, at least there was medicine that was helping him get through it. 

We are so thankful that he is getting better and better. One of my good friends tells me all the time, inch by inch, life’s a cinch. We are definitely inching along. 

Thank you again for your thoughts and prayers. They are definitely working.Keep them up!! 

June
13
2020

June 12, 2020

BIG NEWS EVERYONE! 
Stephen was transferred JUST NOW to a long term care facility- he was stable on his vent settings , sometimes even tolerating CPAP.

Hopefully he will be able to wean of the trach- something they couldn’t do before because he was  STILL Covid positive. (It’s been 5 weeks!!!!)

He gave the drivers a thumbs up when he arrived at the new hospital. 

He will have to go through rehab, to gain his strength and mobility back. 

The transfer happened pretty quickly; we were notified that there  was a bed available today, and had to make the decision to accept- since we want him to wean off the trach as soon as possible, we decided to take it! 

I spoke to one of the first doctors who cared for Stephen- he hadn’t seen him in about 3 weeks and said he was so pleased to see him doing as well as he is! Aren’t we all! It has been a very slow and long road so far, and certainly we have a long way to go, but we will keep on going with Stephen. 

His nurses told me that we he was smiling a lot these last few days. No doubt he was showing them he trusted them, and he knew he was being cared for. That has always been something Stephen did- he showed gratitude when someone did something nice. He would shake hands, give a thumbs up, give a fist bump, or say “good job.”  The one I loved the most- was his  LOOOOOONNNNGGG BEAR HUGS! 

Thank you for your prayers. Let’s keep them coming. God is good! And we are grateful. 

June
7
2020

June 06, 2020

Hello everyone! 
Prayer works!!! Stephen is doing better than I know ANYONE expected!!!!!
( Warning- Get ready for lots of exclamation points because we are happy!)

He is off ALL sedation and being nice and calm. He nods and shakes his head and smiles. 
We listened to music and watched Scoobie Doo! 

Today he is trialing being on CPAP- yes the same thing many of you know is used for sleep- with his trach. So far the nurse said he is tolerating it, and on lower oxygen settings, too.

He still needs dialysis, but the nephrologist said he expects this to last less than 3 months... so we will be counting down. 

He is sooooo weak, he doesn’t move more than just his hands. He’s keeping his arms and legs completely still. The occupational and physical therapists came by today to see him, so hopefully with some exercises he will get stronger little by little. 

He cannot swallow, so until he’s off the trach altogether, he cannot eat by mouth. He’ll be getting fed by G-tube. We CERTAINLY do still have a long way to go, but I know we’ll get there. 

Like always, Stephen has been an inspiration and motivation for others. One of his doctors said, “As a medical team, we needed this.” No doubt they have been seeing a lot of sad endings. I don’t think they imagined he would have recovered. But here we are!! I’m glad that he could be the one to give them hope. We are grateful for his continued progress and looking ahead to Stephen’s recovery. 

Thank you all!!! Keep on praying- it will be great to see Stephen dance again with his friends and family! 

June
2
2020

June 2, 2020

Hello everyone-
Thank you so much for all your thoughts and prayers. Stephen’s trach placement went very well and smoothly according to the surgeon. I spoke the nurse a few hours later- if you are a nurse or medical provider, you can imagine how much time it must have taken to get things back on track after a major procedure. Nurses are amazing people!! 

He is more comfortable, he is less sedated, he has thinner secretions, and his blood pressure held up great. 

They removed another tube today! His arterial line- it was measuring his blood pressure in real time. Now that his blood pressure has been stable, they don’t need to measure it so aggressively. Good for Stevie. Another thing out. 

And he is tolerating lower oxygen support too! 
This is all good everyone!!!! 

I got a call from the hospital on Sunday, from a nurse who had him early on and she said, “He looks so much better than before!” And another last night from a nurse who took care of him on May 11, and he too said, he is doing so much better! My goodness. He is still vented, and on dialysis due to renal failure and is heavily sedated. And yet, “he is so much better.” It’s all about perspective. We are thankful that Stephen has come this far. And that he IS indeed doing as well as he is. 

Keep those prayers coming everyone! They are working. 

We are looking forward to him coming home. I cannot wait for the party we will have for him!!!!!

His favorite car is a Mustang. I think for his trip home, we should get a rental and give him the ride of his life!!! (It will be thoroughly disinfected before we get in-haha!)

Thank you all