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!

Community

Community..... only lately have we begun to understand that the fellow residents are now our community, however long we are at Rosedale.  And there is much to give and gain if we just notice and take the time to learn names, to smile and say good morning, to share our dog, Charlie.

The staff is easy for us to appreciate....they are so skilled at caring and responsive to unending needs.  But the residents are easy to look past.....the are also in wheelchairs,and eye contact takes an extra effort. Because they are usually "old" and some look "vacant" or depressed it is easy to not want to engage.  It might feel awkward or take too much time.  The conversations we have taken time to have remind us that "they" are us, just with more experience with life and physical challenges that would put anyone to the test.

Steve and I attended the Rosedale Veteran's Day program and it really brought home how much we stand to learn from our community.  Picture a row of mostly WW II veterans, all in wheelchairs, singing patriotic songs, listening intently to the program and saluting where they could.    It was the first time I had seen one of these men widely open his eyes and really "come alive."  It was very moving and we were proud that Steve was included in the program and the honor.

Many of us dread the possibility that we will be in one of "those places" when we get old.  It might help us fear less if we move toward those who have taken on that "assignment" and learn from them how to accept limitations with grace and dignity.

-Nancy and Steve

November update

Hello again!

In the past two weeks, Steve has been working hard on the machines in the therapy gym.  He has regained a good deal of strength in his upper arms and has progressed to over 175 rotations on the "arm bike" with his hands strapped on.  He also just yesterday got to use the leg pedals, and while he couldn't yet propel them all the way around, he rotated them back and forth quite a bit.  Trunk strength is continually improving and he can shift around more in the wheelchair.

We went to a new neurologist this week and he is assembling the picture of where Steve has come from and assessed him thoroughly.  It think he will be a good ally. Once again, no doctor can predict the length of time or extent of recovery for Steve and this doctor feels it could be up to a year or year and a half until we "see where we are."  Another chance for Steve to show another doctor how he can "beat the odds!"

Steve decided to purchase a piece of equipment that will allow him to enter our car using a sling and this metal mechanism called a multi-lift.  We are eagerly looking forward to its arrival somewhere around the 20th.  Then we should be able to go out together any time for just a drive or to a destination!  Stay tuned for more news of that development.

We appreciate so much each of you continuing to walk with us through the blog and your prayers.

Nancy and Steve

October update

Hi all,

Steve continues to progress physically and his mental/emotional outlook is, most days, resllient and strong.  His trust in God inspires me to keep on keeping on!

Latest achievements are more success in swinging his arm up on the wheelchair or bed and using the arm bicycle with hands strapped on.  This is with no therapist holding him erect!

We held a surprise birthday party for Steve here at Rosedale.  The activity staff was so thoughtful in setting up the room with fall decorations and tablecloths.  He was so happy to see everyone who came.  Thank you to so many others who sent cards....we enjoyed hearing from you:)  

We had a wonderful visit from one of his nurses from Drake, where he was for 13 months.  Erin had visited before and this time she brought us Panera dinner:)

She is one of the most compassionate nurses I have ever known.

Milwaukee friends Dave and Margo Hoffman were here for a couple of days and we had pizza outside in the courtyard.  They are like family to us.

We also had a visit from Bob and Sue Pinney.  Bob had a long ordeal with GBS also and now is recovered!  They were such an encouragement as they recounted stages in Bob's recovery and Steve nodded in recognition and asked a few questions.   

Our daughter Becky and granddaugher Diksha were here this past weekend.  Becky hadn't seen him since August and was so excited to see the difference in him!

Please keep checking back, we'll try to post more as we live life watching and waiting.

Nancy