June Update

Hi blog followers,

May and half of June flew by, as it probably did for most of you!  We had a family wedding on a riverboat, our oldest grandson's high school graduation, a foot surgery for me and Steve's aunt and uncle visiting from California for a week.  Becky came down for the weekend with daughter Diksha, and is visiting Steve as I write this.

Tim is living here during the week for eight weeks this summer, going home occasionally on weekends to Ft. Wayne.  He is working on another mural for ArtWorks Cincinnati. (Main Street! Check it out!) 

Steve and I are striving to move more into the realm of "what life used to be" before GBS.  He continues to work hard in therapy and they often have to tell him to rest in between sets.  With two therapists help, he stood up in the parallel bars this week, for six times, a minute each time.  A new record.  They are using pulleys to help him manage utensils for feeding, with his hands tied to pulley grips. I am amazed by his humility and patience as he learns to feed himself again.

The van is fixed again and I've been able to take Steve to church several times and with the help of friends he has gone to two picnics.  Tim and boys carried him in his wheelchair into the house for Father's Day and we had a cookout.  He stayed about 7.5  hours and thoroughly enjoyed just a quiet Sunday afternoon with family. Since he was also able to attend church that morning he was gone from Rosedale about 10.5 hours! A new record for stamina! 

As you can imagine, Steve longs to come home for good, but the cost of enough help to meet his current needs is prohibitive.  We are close to settling on an interim living arrangement where we both can live in a kind of assisted living apartment with Steve receiving the highest level of care the facility offers.  We hope that arrangement can carry us over into more of the kind of life we used to live, until we can return home to our condo once he is further healed.

We so appreciate your faithful reading of the blog and your prayers.

Love, 

Nancy and Steve

May update by Nancy

Hi blog readers!  The last month, we've been amazed at the inventiveness and determination of Steve's therapists to find ways to help him reach next milestones. They have rigged up a pulley system which supports his arms in the right movements to begin to feed himself, even down to getting a magnet for the bottom of the plate so it will help pull the fork down to do the scooping motion.  They have supported (two people) him in standing between the parallel bars and he has stood for up to 2 minutes at a time.  

You may remember that about a year ago, sitting on his bed for that amount of time was a victory.  His wheelchair use at that time was also rare.  He now stays most of every day in his motorized chair and you can often find him kicked back in the recline position, taking a little snooze almost anywhere in the halls or outside:)

We are two steps forward a half a step back in getting independent in the van we bought.  We have enjoyed going out to church several times, eating out (in the van) and taking drives.  We still needed help getting him up the ramp that pulls out of the van.  Recently, Sam Slayden installed a winch system in the van, which pulls the wheelchair up, requiring less muscle power.  (I have none!)The goal is to be able to go out by ourselves and broaden our travels around town!  Currently the van, we call her old Bessie because she creaks around, has a broken ramp/door and must go back to MC Mobility this week for repair.

I continue to research where Steve can go when he leaves Rosedale.  There have been a few disappointments and a possibility. One facility we liked can't take him as long as he needs two people and a transfer board to be moved from chair to bed, etc.  The other facility we thought was the one told me that he must be able to feed himself....even if I live with him.  State of Kentucky laws.   Even in the midst of all the calls and visits I make, I know God will lead us to an answer, just as He did when we found Rosedale..

I've recovered from my fall in March:)  Next on my agenda is surgery on my toe that didn't heal correctly during last June's surgery for all toes on my left foot. That's scheduled for this Friday, May 20th. Ugh.

Your support and prayers are crucial as we stay the course.  There are quite a few hours of discouragement, more for me than Steve it seems.  He continues to amaze me and many others with faith that is bearing fruit of peace, patience and perseverance.

Thanks so much!

Nancy and Steve

Timely encouragement

The last couple of weeks have been eventful. As I look back on things, the Lord has revealed a lot of encouragement that I did notice, at the time, but didn't always put them together as a continuous presence of our Lord like I see them now.

First, there has been all of the care, concern, and prayers from our family, church, caregivers, friends and people that havecome to me from crossing my path or here in this blog. Even some friends from Mowreystown, OH, where my son preached for a while, stopped to see me, adding that they, and many others at the church, were following this blog and praying for me.

Then, I think about Bob & Sue from North Carolina, who have continued to encourage me. Bob is a GBS survivor as well, who has visited me, routinely emails and has a story very similar to mine. 

Last week, I had a visit from DEBBIE, a former GBS patient that lives in Covington and was here visiting a friend. The She had waist down paralysis, and took nearly two years to recover. To listen to her is like telling my own story. She had the flu (didn't mention a flu shot), didn't fully recover, was diagnosed with MRSA in her sinuses, had steroids, then went into GBS. Took her 4 months in ICU, and the balance of two years in a nursing/rehab facility . When she finally went home, she wasn't fully recovered, but continued to heal. Today, three years after starting her trek, she walked into my room, totally normal with no after effects. 

Last Thursday, Nancy picked me up in our van, and we went to the north side of Cincy to meetings with two medical product suppliers. We learned A LOT in a very short time. And, we ended our trip with a visit to a Taco Bell. (Chalupa Time!!!)

Then, we connected, by phone, with Doug, also from North Carolina. He, too, is a recovering GBS survivor, who had a brief infection, after a flu shot, was put on steroids, and the rest is history. It sounds like he was as far gone as I was, including total paralysis. Doug was under direct rehab care, until his insurance helped him to decide to return home where he continued his therapy – and self funded outpatient therapy. He continues to recover through gym exercise 3 – 4 times per week. He is, by his appraisal, 80% - 90% back to normal after three years. He can type, drive, travel and work.

Yesterday, Nancy picked me up and we went for a long ride through the country, but not before stopping at one of my old haunts – Harbor Freight. I was happy that they survived the drop in revenue that must have occurred two years ago when I got sick. Even Nancy said it was fun to push me through the aisles.

These stories of patience and recovery have been an encouragement that I needed, and an answer to one of my prayers. Thank you, Lord, for knowing what I need, and then providing it – continuously!

Steve

Steve was here!

I believe you all know about the power chair that I have been asked to consider by my therapists. It is a behemoth device that casually moves me from A to B with only a few head motions.At the safest speed, it moves at just over 12’ per minute. In travel mode, however, it goes at nearly 0.7 mph! That is the speed they allow now, after slowing it down from a much faster 1.1 mph. It seemed I was terrorizing the halls with my hot rod. When it beeps, meaning it is powering up, everyone within earshot immediately goes on alert and clears all possible paths until I have passed.

When you live in a rehab and long-term care facility, you look for fun and humor where you can find it!

The past two weeks have been eventful. Not only did I get to try standing for the first time in over two years, but I also was tied to an exercise bike a couple of times. Forgot what a “treat” that was! I also went out to lunch with Nancy, at the Greyhound. In the course of all this, I was careful to leave my mark here at our gym (see photo)

Nancy and I have been part of a  small group Bible study for almost 3 years now. They choose to meet at Rosedale weekly so I can be a part. The week before last we finished the study of Luke, and last week we did a short study of Philemon. Next week we intend to start studying Titus, but also being a very short letter, will probably complete it in a night, as well. We plan to do a four week study on benevolence and generosity in April, so we are looking for short studies between now and then.

All in all, I seem to be improving, albeit, slowly. I am still waiting on hand and foot control, but there's really faint signs that it will happen, eventually. We are still talking about the next steps, but I am now anticipating being here through Spring and possibly into Summer. We still go at this one prayer at a time.

And speaking of that, Nancy and I have really treasured the church family that has prayed for us, and stepped in to help when we needed it – often without even being asked. As some of you know, she tripped over a pavement crack and got a black eye and a bruised rib cage. The outpouring of help has been tremendous, leaving me only able to tell everyone “thanks”, and“ I have an alibi this time!”

-Steve

Approaching the 2 year mark

Hi, everyone,

We are at the two year mark of Steve's GBS journey.  There are so many mixed feelings at this juncture- including thankfulness as God returns us from the fluctuation of low points, frustration and even anger.  Most of the improvements lately are improvements in strength and stamina.  We know that Steve’s nerves continue to regenerate, but right now it isn't translating into much movement that we can see on the outside.  Sometimes I stare at his hands so long, I imagine them moving (was that a new muscle twitch??)  

Sometimes I find it helpful to turn to the journal I kept and still keep that is part medical history and part my feelings.  Thought I'd share an example of this journal that I use as my "wide angle lens" that helps me. Two years ago we were in a fog of crisis in the ICU, just trying to keep Steve alive.   The following is from my journal  from one year ago:.

March 4:  A day I have longed for!  Pulmonologist said Steve should try for 18 hours off the vent, adding "you have beat the odds;  you are a fighter!" Commented on my strength and endurance also.  PT agreed to hoyer lift Steve into a wheelchair and I pushed him down the halls.  March 6::  Steve was released for the next level of diet...soft foods.  Praise you for his continued healing!  March 16:  Steve off the vent completely and just needing oxygen.  March 19:  Thank you, God, that Steve can swallow, talk and breathe without the vent!.

These were very "visual pictures" that gave us proof of improvements, and kept our hopes fresh. The improvements now sometimes seem "out of focus." We know they are there, but when we try to "zoom in", we discover the picture becomes a little more blurred. What we WANT and what IS sometimes gets mixed up in the processing of the picture. We are striving to trust God all the while, and we know He is able to do immeasurably more than we could ever ask or imagine.

Meanwhile, we are finding ways to get some “normal life” activities.  We bought a manual wheelchair for Steve, as the power one won't fit in the van.  I can't get the manual up the ramp, so staff help me and help fasten him in.  Thus we were able to take a sunny day ride last Monday, drove to the condo and picked up Charlie.  Steve stayed in the car.  Then we went to Snappy pizza and picnicked in the car.  We are working with a mobility company on what we need to outfit the van so I can get him in and out by myself in his wheelchair.  

The power chair gives Steve welcome freedom and more comfort. Charlie watches him with great interest as Steve "paces" back and forth or travels around the courtyard. He is careful to keep his paws out of the way! It is wonderful to see Steve have this new mode of transport, but since he navigates it with his head, it comes with some problems.  It is very touchy and he just this last weekend hurt two fingers when it lunged and pinned him between chair and bed. More needs to be done with this.  Each improvement comes with a learning curve for Steve and everyone else.

One of the two therapists who work with Steve consistently, moved to another company and yet has  made a way to come back  3X a week just to work with Steve after 10 hours at her new job!  Emily and Christy are tireless and extraordinary in skill working with Steve. We are so grateful for them!    Thank you, Emily, for keeping Steve as a client!

Even though I don't post as often, please keep checking back.  In some ways, we need the support now more than before! Maybe you can help us see things that we may have missed or forgotten, and shed some welcomed light on the "big picture." 

Love,

Nancy and Steve

February

Hi blog friends
This will be short though my broken arm is healing well....4 weeks into it.  Thanks to thoughtful friends, I have been able to visit Steve 3 times a week since I can't drive yet.

We have begun checking out assisted living facilities for temporary living until we can both live in the condo.  The important thing is to once again be under the same roof and we believe Steve needs more support than I can hire or provide.  We are just doing research as Steve has to be able to pivot on one leg and transfer from chair to bed with only one person assisting before he can go to assisted living.  We both visited one we like here in Northern Kentucky and they sent a wheelchair van for Steve.  He motored his chair right up the ramp:)

Therapy is rigorous and he is always ready to give it all he has.  Though hands and standing aren't back yet, Strength is returning steadily throughout his body.  Thank you for your prayers!
Love
Nancy and Steve

New wheels

Well, last week, I was loaned a very fancy electric wheelchair,  and have been learning to drive it with head motions. Right temple tap makes it turn right, left temple tap - left, etc.

Those of you that know me remember that I used a lot of arm motions for emphasis when I talked. Now, without hand control, I use my head a lot, making for some interesting chases of me and this new chair through these tight hallways.

I am not officially cleared to drive on my own, yet, but have been practicing a lot. They tell me that I'll be tested as soon as I go for a week without demolishing something, or hitting someone. Seriously, the only person I've hit was the Director of the Therapy department, and then only because all the therapists told me he was worth 20 points. Sorry, Dustin.

We had a Care Conference this week, and for the first time that I remember, started the discussion about how I can go home. I have some of the things I will need, but modifications to our home to make it more handicap friendly is on our horizon. Recovery from this is very slow, but happening. I hope to be home by Summer.

I bought a ramp van on eBay - inadvertently. I made an offer that was rejected by other sellers of similar vans, but this one accepted it. The Carfax and Autocheck all checked out excellent, so we are now awaiting delivery of it from Florida. Since Nancy can't drive for at least 4 - 6 weeks (nor can I), I guess it will decorate our drive until we are ready for it.

Thanks to everyone that has risen to help us after Nancy's fall and broken arm. She is still experiencing pain, but is much better now. We couldn't have managed all of this without you.

Steve

Sent from my iPad

We need 4 but are down to 1!

Nancy fell yesterday and broke her right humerus (upper arm). Please pray for swift healing and pain relief. Her arms are our most precious commodity these days!

New year...new goals! (Written by Steve)

Well, today I was introduced to the sliding board as a means of transferring from bed to my wheelchair and back. It is much more comfortable to sit in my chair without the Hoyer pad, but it does need three people instead of two to conduct the transfer. My therapists have assured me that the number of aides will go down as time goes on, but I like not being plucked from bed by a machine (Hoyer Lift) several times a day.

I have moved to a double room, and have a veterinarian as my roommate. He is on his computer a lot, but always has time for our Charlie - who immediately adopted him. Chris had his practice on Hands Pike and 3L highway, so some of you may have used him in the past. 

I was able to attend Lakeside's Christmas Ève service, as well as go home again, to the condo on New Year's Day for dinner with Tim and Flora, Alex and Becky, and all the grandkids. It was great, and the dinner was good too!

On the 2nd, the  the family took me to what has become an annual tradition, the extended family's Cootie tournament. As you can imagine, when 24 family members get together- it was loud and quite a party! But suffice to say I learned that amplifier ear buds I wear of late, work well as earplugs when the amplifier is turned off. ;)

The state of my recovery seems very slow, from this side, but everyone that sees me infrequently claims I am progressing well. Christy ( my OT therapist ) says the sliding board was a huge step. Emily ( my PT therapist ) was totally surprised last week when I was able to fully pedal a floor bike. Her reaction was "...where did that come from?"

Feeling that Christy had been left out, I proclaimed that someday soon, I'd reach out and grab her, thus sharing the surprise. She immediately replied "...that would make her day!" Following that conversation, all the therapists wanted to know "...what, on earth, we were talking about..." - all quite innocent, I assure you.

I still have little or no movement in my hands or feet, but the Lord answered my prayers with regard to starting to see some muscle inflection when I try to move. He also gave me a way to fight off the various itches that I can't scratch. When I get an itch, I stop whatever I am doing and sing to myself a verse of "Jesus loves me" and the itch goes away. Try it yourself.

Well, posting a blog entry takes a while, especially with a mouth stylus.

So long, for now.

Steve

Sent from my iPad

Happy New Year (From Nancy)

Hi, everyone,

Happy New Year!  I am looking forward to this year as I expect Steve to continue his progress get home!

We had our family Christmas this last weekend and enjoyed all our family in town, Becky and Alex and their kids, Josh and Diksha.  Also, Tim and Flora and their kids Emma, Aidan, Finn and Evy.  Yes, Steve got to come home again, thanks to this family manpower.  They carried him across the threshold:)  We enjoyed a late Christmas dinner and opened presents.  

The next night, the process was repeated as Steve journeyed up to the family "cootie" party, where 67 gag and real presents were "won" by rolling dice and drawing cooties. There were were 13 adults and 12 teenagers/children whooping it up and strategizing to pick the presents that might hold something they actually want:)  Steve made it the whole four hours and then returned to Rosedale.

There are improvements in Steve every week and his therapists see a rate of increasing return of strength and ability to do more and more.  He has practiced on a transfer board a few times, even without  the use of his hands.  He bicycled full rotations for over a hundred revolutions several times.  He can sit up erectly without support for up to a half hour.  He uses the iPad a great deal for email, research and Netflix.  He enjoys having new mail in his inbox:)

Please stay tuned....more victory to come!

Love

Nancy and Steve