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

This entry was written by the man himself- Steve Parsley!

Well here I am, nineteen months after I first went into the hospital with GBS.  I think I am getting better incrementally, day by day, at least that is what everybody around me tells me. The real thing I'm doing is laying in bed waiting for my nerves to reconnect.  I am experiencing several hours a week of therapy to keep my muscles limber and ready for when the nerves do reconnect.

However I am well entertained by the many visitors and those who communicate with me via email.

I am grateful to all those who have prayed for me.  Prayer works! I have gone from not even being able to lift an eyelid and having dozens of hoses running in and out of me to being almost normal and waiting to go home anxiously.

I hope that the prayers will continue.  I need it.  I also need prayers that  will reach the people serving me with my message of Christ and what he has done for me. 

Thank you so much for reading.  I will try to add more later.

Steve

Little birdie here

Steve's birthday is Oct 16th.

Cards can be sent to:
4250 Glenn Avenue
Covington KY 41015

Millimeter

Sorry its been a stretch between blog entries.  To be honest, I haven't posted in part due to my emotions and energy being so up and down.  As the Bible says, the battle is in the spiritual realm as we fight against discouragement and impatience. Our faith is being strengthened as we persevere, each day calling for a new supply as we trust God to see us through.

We are literally waiting for nerves to grow one millimeter at a time, yet the growth is invisible, UNTIL it shows up in another muscle movement that is new.  And there are!  Steve's therapists notice the most as they feel new muscles firing.  Lately, with the aid of a brace they found and holding Steve's arm up at the elbow, he is able to feed himself.  

Steve has mastered the ipad and mouth-guided stylus so he can use the internet to do things like prep for our Bible study that he leads there at Rosedale, and visit his train sites.  He has cleaned out his inbox of about 6,000 emails....imagine the patience:)  Steve would love to get emails from you and his address is: slparsley@gmail.com.  He can answer them, slowly, picking out one letter at a time with the stylus!

Steve will be guest author at this site soon so do check back!  Thank you for your continued support.

Nancy

Man Around Town

Hello blog followers!

As you may have been in the blog pictures, Steve has "flown the coop" twice and got to do normal guy stuff!  First, Sam Sladen took him for a convertible ride....they stopped at a car show, drove through McDonalds and said they just drove through the countryside the rest of the time:)  I waited for them for a while, but after an hour I thought, "Might as well go home!"  They were out 2.5 hours!  Steve was moved from a wheelchair into the convertible with a small crane-like thing called a Hoyer lift.  Staff said it was easier than transferring him into a wheelchair:)  They were wonderful and were as excited as we were over this opportunity.  Thank you, Sam!

Then, Thursday, Rosedale therapy staff took Steve and a few others to the Bengals training camp practice in downtown Cincinnati. I went along! We rode the van, which accommodates wheelchairs. We had a great time and a beautiful day. Steve sported a Bengals shirt he asked me to pick up on the way to Rosedale:)  Afterwards, some players came around to us and gave autographs.  We are so grateful to the therapy team that made this possible.

We are at the year and half mark in our journey.  I thought I'd give a short recap of where Steve's recovery is at this point.

Thanking God for recovery of eyesight, swallowing, speech, breathing and lung recovery from several pneumonias, trunk movement, ability to sit up for long periods, ability to stand with support frame, movement of lower legs, arm movement and more that we can't see yet!

We expectantly wait and pray for Steve's ability to transfer from a chair to another chair or bed, continued strength to be able to take a step and movement of his hands.  Thank you for traveling along with us.

Nancy

Early August update

Hi, Everyone,

Thank you for checking back with us! Steve is improving weekly with the therapy he is getting at Rosedale. We are feeling as "at home" there as you can without being, well, at home! He is standing in a frame, leaning on his forearms, at least once a week and is up to 27 minutes. His arms increase in strength and range of motion each week as well. Steve's hands are still not "pulling their weight", otherwise he would have just about full use of his arms. Keep praying, please!

I have been busy with the financial and insurance end of this journey, visiting Steve several times a week, and taking a few days to go visit Tim's and Becky's families.

We keep taking one day at a time and now there are more good days than discouraging ones. Thank you to all who continue to stand by with prayer, visits, and notes. It means so much!

Nancy

Widening the lens a bit

One year ago we were so pleased with the picture on the left of Dad sitting outside in a wheelchair. He was on the ventilator, needed full head support, was attached to an array of tubes and wires and was accompanied by a small army of support staff. What a difference a year makes!! Keep looking forward, Mom and Dad!

4th of July

Hi everyone,

We are again writing from a new place! Steve is at Rosedale Green in Latonia, KY room 117. As he wasn't going to be released to home from Gateway (not yet, anyway!), he needs to continue recovery at this skilled nursing facility. He moved July 2. We are already impressed with the rehabilitation therapy team and their enthusiasm to work with Steve, seeing so much potential and that he is, in their words, "young!" We were so warmly welcomed by staff continually going in and out checking on this and that, finding the best fit wheelchair, etc.  

We're so grateful to have had Becky, Flora, and Tim, and most of their children here last week. They helped us research facilities and choose Rosedale. Being with the grandchildren was just the pick-me-up we needed. Blessed!

Steve continues to have an amazing positive attitude and I'm so proud of his fight and trust in God. It inspires me. One comment when he left Gateway shows his sense of humor intact....when they gave him a "graduation" pin with a graduation cap on it, he announced that he would wear it proudly, but "I'm not going to walk!" (in the "commencement ceremony")

Today, Charlie and I will head over and a happy reunion will take place. There are beautiful grounds at Rosedale and hopefully we can spend time outside. Steve's room is very nice, big and has comfortable chairs. Do visit when you can! (4250 Glenn Avenue, Covington, KY 41015)

Love,

Nancy 

Update from Gateway

Hi All,

Steve is getting a therapy workout of about 4 hours per day at Gateway Rehabilitation Hospital in Florence, KY. We find this place to be top notch and pray he can be there as long as possible. Right now, discharge is scheduled for July 2 and we don't know where he would go after Gateway. All depends on the progress he is making according to Medicare. Of course, he only wants to go home.

And he is progressing :) As you know, he got his trach out June 6. A huge milestone and we must again mention the amazing Drake Hospital respiratory team who patiently and frequently adjusted his ventilator settings and gave him so much daily assistance with breathing.  

Last week, his feeding tube to his stomach was removed and he gets all his nourishment by mouth.  He also passed the swallowing test that allows him to drink thin liquids -- bring on the Grape Nehi Soda, his favorite! Speech therapy signed off, satisfied with his improvement. Occupational and physical therapists say he is making progress on their front.

Thank you so much to the many who sent cards, brought food, and visited Steve during my first two weeks post-op from foot surgery. Your faithfulness is a blessing beyond words. Also, the "card shower" launched by daughter-in-love, Flora, brought so many cards to Steve and they decorate his room so he can see the love every day.

Thanking God for you,

Nancy and Steve

Happy Father's Day!

Dad-
We are so proud of how you are doing. Keep pushing forward. We love you! - Tim and Becky

New location!

The past two weeks have been the busiest and most constantly changing in a long while! I thought that scheduling my foot surgery for June 5 would be a time of relative stability in Steve's recovery.  Not so fast.....

Two weeks ago Steve experienced a urethra tear from the catheter and was rushed to the ER and then admitted to St. Elizabeth Hospital. He was then checked out with multiple Xrays, CT scan, MRI, bone scan, etc. to check on not only the original problem but possibilities of pneumonia, broken arm, trach infection, cancer, etc. While we are waiting for one more test to come back, all the others came back with great news of NOTHING.  He was given several heavy antibiotics and will finish off the last of them tomorrow.

I believe he still wouldn't have his trach out if he hadn't taken the "side trip" to the hospital! It is so good to see him without a collar of some kind around his neck! It was also good to have a new set of eyes on him checking him out from head to toe. St. Elizabeth Hospital in Edgewood, KY, is high in my book! Everything was top notch.

It was great to have a visit from Steve's cousin John and his wife Carol while Steve was at St. E. They were here for 4 days and uplifted us both. Good timing, Cousins!

Then, Tim's and Becky's families came to town in shifts for my foot surgery and to help with my recovery and Steve's care. They had their hands full! I'm doing fine, though still confined to keeping my foot elevated and being in a chair most of the time. Thanks so much to those who came by to visit both of us and brought food too, even though I don't remember some of your visits:)

Great news!, Steve moved from the hospital to Gateway Rehabilitation Hospital in Florence, KY, June 10, for intensive therapy. The therapists at Provident Pavillion did good work in 5 weeks and got him ready for this next step. He will be working hard! Thanks to Tim and Becky who researched places, talked with case managers, and kept things moving along toward Steve's release from the hospital straight to intensive rehab!

Prayers would be so appreciated for Steve's ability to keep progressing in meeting therapy goals as insurance will be watching even more closely and progress is a requirement for staying. Also for peace and perseverance for both of us.

Thank you, Friends!

Nancy and Steve

It's out!!!!

Mom went to the hospital to visit Dad this morning and he greeted her with these wonderful words "Look, my trach is out!" He had been discussing it with his pulmonologist and after reviewing his level of secretions, breathing treatments, etc., it was determined that he didn't need it anymore. Since he already had the smallest diameter trach, they decided that they could go ahead and simply remove it. Dad didn't feel anything. Everyone take a big cleansing sigh of relief! Feels good!! ;)

End of May Update (by Nancy)

As you know, Steve was transferred to St. Elizabeth Hospital Tuesday to check out problems from his catheter, UTI, and possible pneumonia. Good news is he has no pneumonia and infections are being chased away with "big guns" antibiotics. He does have a urethra tear but is expected to heal. He should be heading back to Providence Pavillion on Monday, June 1. They were very quick to evaluate this new problem and send Steve to the ER. Grateful for their quick reaction and also for the excellent care at the St Elizabeth ER and hospital. 

So the work of recovery continues... As always, we appreciate the many prayers, cards and visits, and for staying with us on this long journey.

Nancy and Seve

Detour

Dad has been transferred to St Elizabeth in Edgewood for treatment of a UTI and possible pneumonia. Prayers requested.

Thank you to all who have already sent cards! Your love is felt and appreciated! Cards can continue to be sent to the Providence Pavilion address as we expect him to return there shortly. Thank you!

Card campaign

Hi all! The Jr. Parsleys had a chance to visit with Mom and Dad this weekend at Providence Pavilion. We are grateful that Dad needs a lower level of care but find ourselves wishing we could move the old Drake staff to this new facility. So many relationships were developed during his year at Drake. Yes, he needed constant suctioning, but that suctioning was provided by RTs that grew to know him well and talk to him as a friend. Yes, he was on the call light a lot, but it was answered by friendly receptionists and helpful PCTs. Yes, he was in an awful state at Drake but there were nurses and therapists that knew him and could remark, "He is so much better today!" (than, say, 2-6 months ago!) We are confident that those relationships will develop at the new facility but right now we definitely feel the lack of familiar company to provide encouragement.

Here is where you can help...we are asking you to blast their new room with cards!! In the next 2 weeks let's throw so many cards at Steve and Nancy that they can't help but fill the new room from top to bottom with love and encouragement. Let's warm the place up and remind Steve that he is not alone! Jokes, photos, memories, funny stories, scriptures, encouraging quotes all welcome! Whether you are a close friend or just a casual reader of the blog, we would love to hear from you!! Thank you in advance! I can't wait to post pictures of his walls covered in cards!

Cards can be sent to:

Steve Parsley

C/O  Providence Pavilion Rm 448

401 East 20th Street

Covington, Kentucky 41014 

P.S. Not only will your card send a message of hope to Steve and Nancy, it will also demonstrate to the staff that this man is a valuable member of a community and more than just "the patient in room 448"

May update (by Nancy)

Sorry its been a few weeks since I wrote. We've been learning how to navigate the new facility and there is quite a lot to learn! The emphasis of Providence Pavilion is to give Steve rehabilitation services while getting the supportive and nursing care he still needs. Drake's emphasis was to keep him alive and get him stable medically and they achieved it! Thank you again, Drake and Christ Hospital staff!

A great team of occupational, physical, and speech therapists are working diligently to coax Steve's nerves to find their way to the muscles. And while the nerves return in their own way (and time), the brain is also important in continuing to send the signals to dormant muscles. While we wait and pray for forearms, hands, and legs to "come back" we have seen much new ability in Steve's sitting up and being able to move his upper body in the wheelchair for hours each day, and muscles are getting stronger. He was given a new wheelchair type because he is able to hold himself erectly now and adjust his body.

Big news this week....he no longer needs for food to be supplemented by a feeding tube! One less pole stand and equipment in the room :) The speech therapist is monitoring his swallowing. (We did have an episode where choking resulted in a quick trip to St. Elizabeth ER. He went back on pureed foods for a few days but now is back to a normal diet :) She also is helping him get his "old" voice back and says that when the trach comes out it likely will return completely.

When Steve has visitors, they are able to "sign him out" (ask at nurses station) and wheel him down to the lst floor courtyard if they wish. We have done that several times and it is a wonderful shaded and sunny place where he can feel sun, hear birds, and see the sky. Feel free to come any time.  Therapy may happen late morning or any time from 1:30-4:00. You don't have to call but if you want to know when it is scheduled on a given day, you can call 859.283.6634.  

Thanks for checking in!

Nancy

Directions to Providence Pavilion (written by Kristy Rickert)

Steve's new digs are now at the Providence Pavilion located at 401 E 20th St, Covington, KY 41014 - Room 446. 

He would love his friends to stop by to see the new place and chat a spell. In fact, if you would like, you may join him for a meal in the dining room at noon or at 5:00 PM simply by calling ahead to 859-283-6634. This number is also available should you wish to call to check how Steve is doing on a particular day. More information regarding his regular therapy schedule will be shared as it is made available. 

Steve and Nancy look forward to seeing you soon! Few things brighten up a new place more than the faces of dear friends and family!

Here are directions:
From Scott Street heading South in Covington, turn left on E. 20th street and follow to the old St. E North Hospital (Providence Pavillion) on the right, all the way down to where you would "T" into the parking garage. Park in the hospital parking lot and enter under the large canopy. In the lobby, go to the receptionist and sign in. After 5 you'll need to hit the button outside and there may not be anyone at the desk.

Proceed straight down the hall and take the first left. Then look for the East elevator (just a few feet away). Go to the 4th floor and there is a nursing station there. Ask for directions to room 446. You will be passing through the nursing home unit to the rehab unit where Steve is staying.

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Visit our community site: Steve and Nancy's Helping Hands

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Powered by Lotsa Helping Hands

 

What a difference a year makes! April 2014-April 2015

Pass the Fritos! (Update from Nancy)

What an exciting and emotional week we've had! After I spent four wonderful days being rejuvenated by a visit to my dad, brother, and sister, I came back to a party on Drake 3 West. For Steve! As he likes to put it, the "tenured patient."

Steve was cleared to have thin liquids (no more need to thicken!) since I wrote last and nurse Erin brought him his favorite soft drink: Grape Nehi Soda. He got to pick the menu for the party and we had fried chicken, home made green beans, potato salad, Hawaiian rolls, and four desserts, including a "Best Wishes Steve and Nancy" cake. There was a poster with pictures from his long journey and many wishes from staff penned on it, including several with "thank you for the privilege of caring for you!" Erin had also brought many helium balloons "We will miss you!" which bobbed around the party.

Staff stopped by individually to say goodbye in the room and several commented on what Steve's faith and courage spoke to them. Brenda, unit manager, told Steve his time there had helped shape the spirit and teamwork of the staff. (We did come when the unit was only 5 months old). One comment in particular stands out: "I've watched you and seen such a peaceful glow on your face, especially since the baptism." I have also and we know from Whom it comes.

After the buzz of the party, we were scheduled to leave for the new rehab/skilled nursing facility the next day (Tuesday), and also Wednesday, and also Thursday! High fives and gratefulness to Chantale, case manager, who persistently kept the connection going and provided all they needed and then some! We moved on Thursday, April 23.

Steve is already settled in at Providence Pavillion in Covington, Kentucky, and therapy began in earnest yesterday in the PT/OT room. He is to receive it 5 days a week. He is expected to be dressed and spend most of the day out of the bed and eat most meals in the dining room. Of course he needs help with all of this and it is provided happily and quickly :) It was so great when I arrived yesterday evening to see him in golf shirt and pants, sitting at the table waiting for his meal to be brought! I can't wait to pack a picnic and wheel him down to the courtyard :)

It is weirdly wonderful to give him any food he wants....I keep looking for someone to give permission (but of course that happened before we left the Drake speech therapy team). Shout out to Lindsay and others - many many thanks for taking him from no swallow reflex and no speech to where he is today. So on Steve's tray was a bag of Fritos. We just looked at it. I asked, "Can you have these?" and he said, "Guess so!"  so he ate a Frito :) Sometimes the little things speak so much!

We know you share our joy in this milestone on the journey to recovery. Thank you!

Nancy and Steve

(Flora here- I talked to mom after the move and she was telling me about the party. She was so touched by the kindness of the Drake staff and all of the food that was brought in or  homemade- especially Denise's "wonderful!" green beans, Sue's lemon squares, Erin's potato salad, and  Tasha's peach cobbler. Tasha stayed up until one in the morning the night before the party making the cobbler, and was then floated to Main Drake the day of the party so she wasn't able to be there,  but they were able to warm it up and enjoy it the next day. What a treat!

She was also very touched that Dr. Krause had called to check on him since the transfer to Providence. Thank you for continuing to care for our family) 

Off to work...

Dad has been transferred to Providence Pavilion in Covington, KY. Mom is working on a blog with all of the heartwarming stories of saying goodbye to the wonderful staff at Drake, but I wanted our beautiful blog readers to know of his location change. We are celebrating this momentous graduation from battling illness to growing in wellness. Please contact Mom prior to visiting as he will now have a schedule to keep: therapy, meals in the dining room, etc. Today he will be undergoing assessments and given his wheelchair. All he needs now is his briefcase...

Thoughts about Easter Weekend- by Flora

I waited a year, but I finally got the picture I wanted, a picture of Dad wearing the Easter bunny ears! Last year we took the ears to the hospital but it just wasn't a "put the bunny ears on Poppa kinda day." He was too out of it and just returning to Drake after a long ICU stay. We packed them away with hope and a prayer that next Easter would be different. This year, he was a good sport and wore the ears for us all afternoon. 

When Becky Facetimed in from California she said "Dad, you've got the bunny ears on!!" He dryly replied, "I can't move my hands to take them off!" ;)

Saturday night was such a sweetly emotional night -- seeing the chapel filled with friends and family that have carried us through this last year was very heart-filling. And hearing them sing acapella "There's a sweet sweet spirit in this place" was just about enough to do us all in. So true. 

I was a bit worried that when it was Dad's time to talk that no one would be able to hear him. Tim scurried around asking about a microphone but the chaplain didn't have access to it. Turns out we didn't need it -- Dad's voice was so strong it could even be heard by those in the very back! 

Here is a transcript of what he shared:

"My voice has changed some...but I'm thanking all of you for coming to this today. I really had thoughts about doing this...I've been thinking about re-baptism for many years but I never really thought about it like I have in the last 6 months. I was baptized when I was in the 4th grade. In our church we had a class, at the end of the class you were baptized...and I remember it was also in alphabetical order that we were baptized. The need to be baptized again has come to me as I've meditated and thought about this. And in the last 6 months I've never felt the devil working harder to talk me out of it. He bridges questions like "You've already been baptized, why do you need to do this again?" He raises questions like  "Are you going to really be baptized or just sprinkled? What's the difference?"  And I've faced so many questions and doubts but all of them I just took to God in prayer and the thing that God told me was "Don't be afraid to ask Jesus to be close to you". That's why I'm here today. I encourage all of you to think about this if you have any thoughts at all about doing it. Don't let the devil back you out. It's not a requirement [since he has already been baptized] but it's something that was brought to me through prayer and 6 months meditation on the whole issue. Thank you again for coming."

Last night at dinner we were talking to our boys about the fact that even playing baseball that they can do it for the glory of God (1 Corinthians 10:31) and it struck us that that is exactly what Poppa is doing -- he is lying in bed for the glory of God. Any action can become an act of worship if you do it enthusiastically for God. And, Poppa, we see that you are doing just that! Thank you for setting that example for all of us! 

Click on this link to see Dad move his forearm!!

https://www.facebook.com/video.php?v=10206465340697638

Easter Weekend - blog update by Nancy

Hi, blog followers,

Since I last posted, Steve's progress has been so encouraging to witness!

He left the ventilator behind about 5 weeks ago and recently was able to give up the low level of oxygen he was receiving through his nose. His spelling board is a thing of the past and they took his laser light back to inventory. Steve sounds like himself when he talks (here he will shrug at me and indicate, "Who else would I sound like?") He talks with everyone now and doesn't get winded. I am even enjoying his "tutoring" once again as I try to make his computer behave! Steve passed the last swallowing test and now is only one level down from "normal" food. We still thicken liquids like lemonade and hot tea and he can't have straight water. He calls these his "mixed drinks":)

The last few days leading up to and including Easter have been such a time of celebration. First, Thursday night, our small fellowship group from church had their weekly Bible study in Steve's room. At his turn around the circle, Steve read from the Gospel of John, with his Bible propped up against his computer. He was very much a part of the whole conversation.  

Saturday night Steve was wheeled down to the chapel by nurse Chelsea for his baptism service. As you may recall he has been pondering this for quite a while. He felt the baptism he had in 4th grade was before he really understood what it meant. His testimony of why he is re-consecrating his life now was so beautiful to hear -- inspiring, and touching every person in attendance. Our son, Tim, performed the ceremony and his words about the last year brought many tears to the surface. About 30 friends and family were there and sang several hymns acapella, led by Connie Salyers. The last one was accompanied on guitar by family member Chris Taylor, "Take my Life and Let it Be Consecrated Lord to Thee." This was only the 6th time in the last year that Steve was out of the unit! We are so grateful to Chelsea, Brenda, and Sandy from the Drake LTAC unit for making this service in the chapel possible.  

Soon Steve will be leaving this unit. The staff have become our second family. You kind of get to feel that way when you've seen them save Steve's life several times and cheer him on for a whole year to swallow, talk, and breathe on his own. Steve has been asking for a badge with "Tenured Patient" on it! We may leave within the next two weeks. I've visited several skilled nursing facilities and we are close to making a decision, with the expert help of Chantelle, our case manager. Here the emphasis will be to get Steve frequent rehabilitation services as he works to move his arms, hands, and legs. 

Please keep praying!

Love to all,

Nancy and Steve

Blog post from Becky

We finally got a chance to go back down and visit Mom and Dad last weekend. It had been too long. Alex and the kids helped Mom at the condo, preparing for spring  - which has finally come - and I got in some quality time with Dad.

It is so wonderful how much Dad has improved recently. I cannot help but sit and stare at him when I am visiting. I wonder what he's thinking, I reflect on our past together, and I ... just stare. I watched him as he slept, talking a bit in his sleep, and wonder what he is dreaming. Is he having another dream about Heaven? Is he dreaming of times spent with Tim and me as kids? Is he dreaming of trains? Dreaming of Mom?

As I was leaving, he told me how proud he was of me and how I am raising my kids, how I am doing in school, etc. I tried not to, but I cried. It is SO GOOD to hear my dad's voice again and especially to hear such loving words. He apologized for not being more "entertaining" while I was visiting, but I told him I enjoyed my time with him immensely. It was as if we were just sitting at home, relaxing and watching TV - doing our own thing. It's what we do. And I love it.

Thank you for continuing to pray for our family. It means so very much.

- Becky ;)

The Frontporch in our thunderstorm

We have often referenced this GBS journey as feeling like we are in a boat rowing against a storm. This sermon from our college friend, Shawn Spradling, helps flesh out that image even better. (Reposted with permission) Thank you for straining against the oars with us.


Click here to listen The Water Walker 3/22/15

New Accomplishments! (Blog update from Nancy)

As we head past the first year of this illness, we have some new accomplishments of Steve to celebrate!

He has achieved almost two weeks without the ventilator, just receiving oxygen through his trach.  Today, they “capped” the trach and he now wears a nasal cannula to receive oxygen and he receives just a little higher percentage than what we all breathe! He has worked up to four hours a day with this new process.

Steve is also enjoying more choices in his diet, due to passing a swallow test a couple of weeks ago.  He is on the middle level diet, allowing soft pieces of food. No steak yet! Because of his increased oral feedings he will now only be on the feeding tube at night! He thoroughly relished a milkshake brought in by his former boss, Mitch☺

So, as Steve reaches these milestones, it is time to start researching places for him to move for continuing his recovery. A daunting task, representing the real progress we’ve all been praying to see!  Longtime blog readers will remember when we were praying to hear a word and for him to be able to swallow.

As we mark a year fighting this disease, we want to share with you a picture that represents what each of you means to us. The image came to me of a blanket, woven from brightly colored ribbons.  Each ribbon represents a person or persons who have come around us and provided prayer, visits, cards, yard work, moving an entire houseful of contents, putting those contents into a new house, yardwork, meals, help with water pipe burst and repairs, installing dishwasher, fixing dryer, building storage shelves, fixing cars and/or taking them to garages, care for Charlie (dog), haircuts (thank you, Lisa, our hairdresser!), creating the blog (dear Flora), fixing computer issues and setting up Steve’s access to  the internet, overseeing the Helping Hands calendar for visits (thank you, Kristy) AND the constant vigilance and care of the teams of medical personnel at Drake LTAC at Christ.

Whenever we have felt alone, fearful, or weary, we have wrapped up in this blanket.  We believe that God prompted each act of compassion, empathy, kindness, skill and generosity in those who became our blanket. These scriptures say it best:

 Isaiah 65:24 “Before they call, I will answer and while they are still speaking, I will hear.”

 James 1:17 “Every good and perfect gift is from above, coming down from the Father of heavenly lights, who does not change like shifting shadows.”

Thank you all so very much for being with us in this.

Steve and Nancy

365 Days of GBS... (Blog update from Tim)

One year ago today I was visiting my parents on the eve of their big move from their house of 20 years to their condo. More than just a change of address, this move signified their transition to mutual retirement. Their months of down-sizing and their well-stocked camper, "Cubbie," testified to the fancy-free spirit with which they were approaching this next chapter of their lives. 

Unfortunately, this chapter would be preceded by another, unforeseen and unwelcome chapter. That night, at around 3:00 in the morning, I awoke to my mom knocking on the guest room door and found her and my dad in the hallway. Dad was struggling to keep his balance and Mom explained that his eyes had locked cross-eyed and his arm had lost sensation. We quickly drove to the hospital for what we feared was a stroke. Over the next few hours, we watched helplessly as Dad continued to lose the use of his arms, then his legs, then the rest of his body until only a slight twitch of his eyebrow remained. With Dad now on a ventilator and completely paralyzed, but still able to hear and feel everything around him, our family too felt paralyzed as we stood there, confused and horrified by what we were witnessing. Up to that point, most of us had never even heard of Guillain-Barre Syndrome (GBS), the diagnosis doctors determined as to what was happening to Dad. Since then, we have become reluctant experts on this inexplicable and torturous medical condition. 

It is hard to believe this blog now represents a year of this unwelcome chapter. Flora has so diligently captured the challenges, questions, fears, and celebrations that our family has experienced – and continues to experience – as Dad makes his way forward through his recovery. And while Dad IS recovering, he is still functionally paralyzed and has now lain in a bed for 1 entire year of his life. As I write these words, and try to reflect on this past year, I find myself pausing… getting stuck… simply unable to find the words to describe this journey and do it justice. There is no summary for something so overwhelming. 

I was able to spend this past weekend with Mom and Dad. Saturday night Mom and I went to dinner and reflected together. I said to her, “I feel like I should say something like ‘Happy Anniversary,’ but obviously that’s not right.” Congratulations? No. Still, something Herculean has been accomplished here. Despite the ups and downs of the past year, and multiple near-death encounters, Dad is still here. And for Mom, her steadfast presence by his side has not faltered, despite her own fears and exhaustion.

Mom said to me, “It is an accomplishment. But I wouldn't feel comfortable taking the credit. It really has only been by God’s strength and the help of our family and friends. I have truly learned what it means to walk by faith, being grateful for each day as it comes. All I can say that I've done is just show up, each day, and try to be present for what is right now.” 

I cannot express how incredibly proud I am of my mom. Her commitment and strength inspires me. The love she and my father share continues to be a blessing that pours down throughout our family. 

Dad is doing noticeably better. His voice is stronger. While still paralyzed, he continues to regain movement a little bit at a time. When I left on Sunday afternoon, he had been off the ventilator and on the trach collar for nearly 3 days straight! In fact, he now considers the ventilator to be an uncomfortable interference to his breathing! Considering where he has been this past year, this truly is something to celebrate. 

Before leaving, I asked Dad what thoughts he’d like to share for the blog. Mom was there too, and we both listened as he thoughtfully shared these reflections of this past year: 

“Well, I know more about how many alligators are on TV.” (This said after hours of History Channel reruns of Swamp People. A good sign that Dad’s dry sense of humor is still intact.)

“It’s still obvious I've got a long way to go, but I’m doing ok. I can really feel the prayers of all the people thinking of me. I really appreciate that. I am healing, although very slowly. Still, it is very comforting to know everyone is praying for me. 

I really appreciate the way family and friends have come by to visit me. It really helps break the monotony… but also gives me opportunity to hear the Word of God. Thank you especially to Rick Thomas for reading the Scriptures to me.

The staff here has been good. I’m thankful for the nurses, surgeons, and RT’s who have been caring for me – I wish I could name them all, but I’m afraid I will forget someone. Dr. Krause has been like a mother to me, always checking in to make sure I’m comfortable. 

Thank you to Flora for putting this blog together and keeping all of my friends and family up to date on my story. 

My grandkids have been most attentive. I have colorful cards and pictures hanging all over my room.

I couldn't have done this without Nancy. She has been the light of my existence. I am so lost without her. 

Then Dad’s thoughts turned to the future: 

I think about the things I can do when I get better. What will I be able to do? The things I CAN do give me strength. But I also remember that I've pledged my life to Christ to do whatever he calls me to do. So I believe he will only call me to things that I’ll be able to do. But still, I've committed the rest of my life to doing his work. This is the reason I want to be re-baptized. I want to mark this time in my life. 

When I first got this, I had a dream. I was brought to some kind of meeting where there were two doors: one leading to heaven and one leading to hell. Standing there was an angel. As I stood before the doors, I told the angel I wasn't ready. That I needed more time to be sure Nancy was taken care of.  Then after Nancy’s heart episode, she told me she was taken care of. I had the dream again and this time I said I still wasn't ready. The angel seemed to understand. I haven’t dreamed of that meeting since, and at first I worried that I had missed my chance. But now I believe it is because I still have work to do in this life. 

After a few moments of quiet, Mom said she probably should get going since she was headed to someplace she didn't know how to get to. Dad looked at the clock and said, “You still have 5 more minutes to hold my hand before you have to go.” So she did.

After that, I walked Mom to the elevators. We hugged and I said, “Let’s not give this thing another year. This year, let’s be done with it.” 

She agreed and said, “It’s hard not to feel like we've been robbed this year.” 

“We have been robbed,” I said. “We've had a year stolen from us. But thankfully, we haven’t been robbed of what’s most important.”

Returning to the room, I told this to Dad. To my surprise, he replied, “I don’t feel like I've been robbed. I feel like I've been drawn closer to the things that are most important to me.”

On Saturday, I noticed Dad had a bunch of lilies sitting in the window that had yet to open. On Sunday, at one point during Dad’s reflections, Mom drew our attention to the windowsill and said, “Oh look! Your lilies bloomed.” 

A good sign for the year to come… 

Tears of Joy

Very encouraging news to send along this week! Steve has regained the ground he lost during the hematoma setback of January into February.

He is off of most of the pain medicine and is much more alert and conversational. Visits with him are so much easier.

It has been determined by pulmonologists that he has the use of his diaphragm now and the breathing results he achieves are with the correct muscles, instead of secondary muscles which is all he had to use before. Yesterday, the pulmonologist said that he had “beat the odds” referring to his opinion of almost a year ago that Steve probably would not come off the vent.  He also praised Steve as a “fighter!” While he is still using the ventilator, his current goal is to be off it and on the Trach collar (just provides oxygen) 18 hours a day. They will raise it up as the daily numbers dictate. He has steadily climbed from 12 hours off the vent to 18 in the last week.

Yesterday, Steve got to get Hoyer-lifted into the wheelchair (last done in September) and we went rolling around the halls of the unit, carrying oxygen behind. It was so good for him to escape the room and the constant beeps of equipment.

Many thanks to friends who, over the past week, kept me able to visit the hospital by fixing our cars, loaning a car to me, and giving me rides. I also got to take that trip to refresh with family in Ft. Wayne. Thanks to those who visited Steve during those days.

Thank you all for prayers and other thoughtful help!

Nancy and Steve

February 16th update (by Nancy)

Picture a mountain range that you’ve been told levels out to a beautiful plain where you can rest and rescue the missing parts of your life.

But you can’t see all the mountains or the valleys between so you don’t know how long the journey is.  That is GBS.

So as we near a year into our journey, I thought it might be good to recap what we do know.

·         Steve has one of the most severe cases the neurologists we consult with have known.  This is often tied to the rapidity of onset (his was two days).  Most people recover from even the most severe cases, says the literature, though some are left with deficits.  Recovery can take up to 2-3 years to arrive at where it likely will remain.

·         God has reknit Steve’s nerves steadily through this time, that work is from the inside out……things like nerves that makes eyes open and work together, tongue, mouth and throat work together to swallow, diaphragm and other muscles to remember how to breathe, shoulders to shrug, head to turn, thigh to remember how to move and so on.  Imagine!  

·         Because this is an autoimmune disease, the body itself is the instigator and enemy to the body.  There is no outside invader that can be fought with outside measures, like cancer, for instance.  So, as we have been told, the task of the medical teams that have helped Steve and the amazing LTAC team still working is to keep his heart beating, support his lungs in returning to functioning fully, and to keep invaders like pneumonia at bay as much as possible.  In fact, he just experienced another “small” pneumonia and they were on it in a flash, sending the antibiotics before it was even fully confirmed.  

·         Within this journey, setbacks are expected, like pneumonias and infections.  The recent hematoma (bruise inside his thigh) is one that thankfully is rare and now Steve has a “screen” in him to protect against blood clots to the heart and lungs and won’t be taking blood thinner any more.  And then there are the strong medications that are regularly tweaked to help him function at his best, seesawing between being asleep or in discomfort….finding that middle zone.  

So at any given time, depending where we are on the current mountain, my response to “How’s Steve doing?” often vague or contradictory from the answer I gave just a day ago.  Thank you for understanding and standing with us in what can’t be understood.

Recent hopeful developments:  Steve can flex his forearm muscles, he asked for his train magazines, specific music he heard on the radio and Hogan’s Heros DVDs that we have.  He can now have ice cream as his swallowing is a tad better.  He is back to the Trach collar for a few hours a day, and his hematoma is abating fast. 

Thanks for following along,

Nancy and Steve