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

Merry Christmas!

Hi everyone,

We write from the other side of Christmas and hope yours was full of hope and blessings.  

What a difference from last year, which Steve doesn't even remember!  From the struggle to breathe on his own and once in a while sit in a wheelchair to being able to attend church on Christmas Eve this year! Though he came in his wheelchair, it seemed like a miracle to sit beside him again at Lakeside Christian Church.  

We had Dave Giegler help us get him into the multi-lift and the car, along with stationing the wheelchair on the trailer hitch. We have found that, at least for now, we need two people to help this happen. I could not help (more on that later), so one of our therapists, Christy, offered to meet us at Rosedale and go to our church with us, bringing along her family.  She was there with Dave for loading, unloading, loading, unloading.  Amazing!! Thank you for making this happen for us, Christy and Dave!  It means so much.

After church, Sue and Dave G. brought over a Christmas dinner to Rosedale.  We ate downstairs by the tree and Sue served us prime rib and fixings!  I brought sweet potato casserole and a pumpkin pie that suffered from riding around in the car to church, etc. before it "set."   These friends made a Christmas Eve one we will remember fondly always.

This last month has been eventful.....both celebratory and stressful.  I'll bet you can relate.  Two groups of friends came to sing carols and bring goodies to the residents in our wing.  It was heartwarming to see people sing that looked like they were going back in time and others who could barely speak mouth the words.  

Thank you, dear friends!

Also this past month, we had our trials with the multi-lift for the car.  We had just received it back from the manufacturer (made an adaptation) the day before we had an MRI appointment at the nearby hospital.   We confidently (Steve) and uncertainly (me) put it into the car, loaded and swung Steve into it and loaded the wheelchair into the trailer hitch.  35 minute operation.  Here's where I believe God stepped in, knowing we were in over our heads.  My friend, Sandy, called that morning and said she wanted to come to meet us at the hospital, saying she felt a "nudge" to offer.  I said "thanks and do come if you wish but you probably won't

have anything to do."  Wrong.

When we arrived at the hospital, Sandy got another wheelchair as I couldn't dislodge ours from the hitch.  Then she held it while I swung Steve out and....the multi-lift came off the door hinge and he dropped!  Half into the wheelchair and the rest suspended between chair and door.  While I held his legs and tried to stop his slide out of the chair, Sandy summoned help and three men helped get him enough into the chair to make it to the MRI station.  You can imagine the helplessness of Steve (who stayed calm) and me (who didn't).

Once he was in the MRI, I began worrying about how to get him back to Rosedale.  I wasn't about to use the lift again and the local handicapped bus, RAMP, has told me they weren't available for us that day.  I called Rosedale and no one could come.  I decided to try again (5 times) to at least get his wheelchair off the hitch and finally succeeded.  The angle I have to be at and the force to pull the lever was too much.  So I got his chair to MRI in time for him to get off the table onto it instead of the loaned one.  Then, God sent a bus!  You may or may not believe this is possible, but we know He can and does. I looked out the hospital window and saw a  RAMP bus.  They don't just park all over Northern Kentucky.  They were there to pick up another person.  I ran out and asked if Steve could ride also.  After some calls, they said yes!  The lady that was being picked up was late showing up and Steve appeared just as she did.  I was so relieved.  Thank you, God!  You knew in advance that we needed help.  

"Before they call, I will answer." -Isaiah 65:24

We are looking forward to 2016 and Steve coming home ..... date TBA.

Happy New Year!

Love, 

Steve and Nancy

Thanksgiving

Hi, everyone,

Thanksgiving for us was one to always remember, and we hope yours was full of blessings also. We gathered at Kristy and Patrick Rickerts (Flora's sister). Steve got to come to the family dinner and traditional talent show!  His talent was doing well on a long car ride and being able to sit in his wheelchair for about 7 hours.  We all were celebrating this milestone, as last year he was still getting the hang of swallowing and still tied to a ventilator.

We had the manpower to get the wheelchair lifted out of the trunk and into their house with Steve in it, thanks to Patrick, Tim, Alex, Joshua, Finn and Aidan.  Then the reverse process as we headed back to Rosedale.  We recently bought a multi-lift piece of equipment that transfers Steve into our car from a wheelchair.  I am learning to operate it myself (see picture on sidebar of Steve ready for our first trip out alone together:)  We just ordered a wheelchair lift to attach to a trailer hitch, as I can't lift the chair by myself.

The day after Thanksgiving, we got to take a long-awaited trip to the condo with the same family manpower.  Steve had never been to the condo after we were moved in and has still never spent a night there.  It was such a sweet time of family, home and pizza!  See all the pictures Flora took of this happy event on the sidebar.

Prayers, please, for the permanent move home for Steve.  He needs to be able to transfer from wheelchair and use his hands and stand for a few seconds first. Thanking God for how far he has come and trying to be patient and trusting for the next steps.

Love,

Nancy and Steve

Lots to be thankful for!

Happy Thanksgiving from our family to yours!