February 28, 2017: Day +101

Today is Shrove Tuesday, often called Fat Tuesday. Traditionally it is a day we live it up and eat all the things in our pantry that may be considered a treat or a luxury or perhaps on a more spiritual level we begin to prepare our hearts for the journey of lent.

Today Doug and I both participated to some degree or another in Fat Tuesday.  We ate the foods and treats we enjoy.  Our friend Leanne brought Doug a King's cake today that he enjoyed and shared with some of the staff at the hospital.  I had a Mexican lunch with my friends from work and enjoyed some apple pie for dinner. It is a great day too, to remind ourselves of the bounty with which we live and all we have to be grateful for.

I have thought a lot about what I will do for Lent this year and have decided that I will commit to reducing calories, eliminate sweets and to exercise daily.  For the past few months I have eaten only what was easily available.  I did not have the energy to worry about my diet and with my knee injury I have not exercised regularly.  I have concluded that I need to be sure to set some time aside to take care of myself which also includes nurturing my spiritual life as well.  And in preparation for Doug coming home, I need to be healthy to care for him.

When I left Doug tonight, he did not have a plan for taking on anything for lent.  I think continuing to live into his current condition and remaining positive is about all he can do right now and it is quite enough.  Tonight when the staff was changing, his CNA came in and said that she was excited to be able to care for Doug tonight because the other CNAs said that he was the sweetest man and that they all love working with him.  The Vibra staff said the same thing.  It made me smile.  I told him that he sure had them fooled!  But truly, he is so good about thanking them and appreciating each of them.  I am sure it is easier to care for people who are grateful. And he has been grateful.  Being grateful is a wonderful spiritual discipline

He had a busy day of therapies this afternoon.  He said he was pretty worn out this afternoon.  They are continuing to work on him sitting independently and improving his strength in his arms, neck and back.

Doug also enjoyed the companionship today of friends Leanne and Joanne and Fr. Koji and Bishop Brian visited.  These visits brightened his day and made it so much more enjoyable.

It is late and time for sleep and so we pray.

Ever present God, thank you for dear friends that travel with us and encourage us along the way. They lighten our spirits and ease our fears.  Be with us as we approach this season of Lent.  May all our disciplines draw us closer to you. May our capacity to love grow. And as we approach Easter may we be transformed to reflect you in all that we say and all that we do.  Amen

February 27, 2017: Day +100

Help me to journey beyond the familiar
and into the unknown.
Give me the faith to leave old ways and
break fresh ground with You.
Christ of the mysteries, I trust You to be
stronger than each storm within me.
I will trust in the darkness and know that
my times, even now are in Your hand.
Tune my spirit to the music of heaven and
make my obedience count for You.
Amen   - A prayer inspired by St. Brendan of Clonfert


I feel a little guilty calling these times darkness, when Doug continues to make small gains.  But I have decided that in this blog I will only share what is on my heart.  These past few days Doug's progress has not been as obvious and I am concerned about the near future with Doug wanting to come home while he can't sit by himself, walk, still needs help eating and has no bladder or bowel control.  I have asked the nurse to ask the doctor to have a family meeting to talk about goals for Doug.  I know that the team met last Thursday to set goals and a discharge date, but I think it is important that they include us in that meeting.  For Doug to come home I need to get our bathroom doors widened for a wheelchair to easily get through.  I need to have a seat put in the shower and I need to have the bed I ordered arrive. Or ... Doug needs to stay at the Elks until he can sit on his own and has some control over his bowels, be able to stand and pivot from chair to chair.

His disabilities are real.  This is a darkness that threatens us. Our call is to trust in the darkness and so we pray that the light will continue to lighten our path so that the darkness does not overwhelm us.

When Angie and I were walking the Camino in Spain, each day we heard our fellow pilgrims' stories. Many stories of darkness in each person's life were shared and with each step our fellow pilgrims were seeking light, wisdom and hope. I know that while Doug and I have many challenges right now, we are not alone.  Many who travel with us are seeking the light and looking for an epiphany. It is the human experience.  And so we pray this night that all seekers tune their spirit to the music of heaven and trust that our God is stronger than each storm within us.

Holy God, as we walk this pilgrimage, help us to journey beyond the familiar and into the unknown. Give us the faith to leave old ways and break fresh ground with You. Help us to trust in the darkness, knowing that you are at hand.  Help us to always give thanks for that which we can see and give thanks for what is yet unseen. Sustain our hope and guard our faith. In your name we ask it. Amen

February 26, 2017: Day +99

"The disciple simply burns his boats and goes ahead.  He is called out ... The old life is left behind, and completly surrendered.  The disciple is dragged out of his relative security into a life of absolute insecurity...our of the realm of the finite...into the realm of infinite possibilities."   ---Dietrick Bonhoeffer, Cost of Disciplehip

These past couple of days as I have sat with Doug, I have had a little time to read more about pilgrimage and reflect on some wise words written by others.  With the date that Doug will be coming home looming and with him still being far from rehabilitated, worries and concerns are keeping me awake and a little anxious.  My anxiety of how I will care for him, lead me to prayer and reflection and led me to read.  Knowing that worry and faith are juxtaposed to each other,  I needed to find my center, to  remember to have faith that all will be well no matter what.   These words from Dietrict Bonhoeffer struck a cord with me. "The old life is left behind and completely surrendered".  In order to move into our life that will be, I must surrender the old life.  I must let go of what was and what was hoped for. We were indeed dragged out of the life we thought we were preparing for and brought to this moment.

We can't know how these next weeks and months will play out.  All I really know is that we have to surrender the life left behind.  But at the same time wait with hope and expectation and continue to believe in the slow work of God.

Today I was reflecting on some of the struggles that friends of ours are going through.  I am reminded that in this life we all struggle, we all confront our own fears and brokenness.  We all are brought to our knees at one time or another.  We are all being called out of places of security and given the opportunity to make different decisions and to place our trust in a benevelent and loving God. In "The Soul of a Pilgrim" by Christine Valters Painter she writes:

"On a deeper level, the call is to not run away when things become challenging.  Stability  demands that we stay with difficult experiences and stay present to the discomfort they create in us."

To be on a pilgrimage we are called into discomfort.  When we started this Mexican Camino we had no idea where it would lead.  Our hope and the destination we seek is wholeness and healing. To reach this destination we are certainly being called out of what is comfortable for us.  And so it is that with prayer and faith, we will continue to walk this path. I am thankful that I have a place to share these fears with others and that I will find comfort from those who journey with us.  I am thankful that we have companions who will encourage us when we become afraid.

Today we were thankful for the visits from Kelsey, John and Steven and Fr. Dave.  We are thankful for these moments of shared friendship and respite. Companionship gives us strength to journey on.

And so we pray:

God of Compassion, we give you thanks for the wise words of those who have gone before us and those who travel with us.  We give you thanks for companions on The Way.  Today we begin to prepare our hearts for the journey of Lent.  We feel the calling or perhaps the dragging of us out of what is comfortable and pushing us to surrender all that is holding us back. Be with us in our fears and insecurities as we look for you on uncharted paths and move into the realm of infinite possibilities.  In your name we ask it.  Amen

February 25, 2017: Day +98

Yesterday, Doug had a busy day of therapies and friends who came by to see him in the afternoon.  And in the afternoon my sister Kate, daughter Angie and I went to "The Springs"  in Idaho City. I had invited Kate to go last year for her birthday and we had not been able to find a time.  The stars aligned and we were able to go.  It was wonderful to have an afternoon off and be able rest in the warm pools with the beautiful forest all around us.  We loved it.

I dd not get home until a little after 10:00 p.m. from the hospital last night.  I sat down on the couch to watch the news and fell sound to asleep.  It must have been that hot water. I was very relaxed. When I woke, I was too tired to type the blog. And so I missed posting yesterday.

Today was quiet. Doug was able to take a shower today.  This is only the second shower he has had in months. He loved it.  He did not have any therapies today.  That is good and bad.  It makes for a long day to stay in bed.  I asked if they would let me take Doug for a walk in the wheelchair, but I couldn't because it had not been approved through the physical therapists. So we broke the day up a little. Doug was having a craving for tacos and so I went and found him tacos for lunch. Then in the afternoon our friends Desi, Nancy and John came by.  That was delightful.  And in the evening I took a trip to Whole Foods and got some things for dinner and we spent the evening watching TV and doing some of Doug's exercies in bed.

Doug has several exercies that he can now do on his own in bed.  He is working on stregthening his neck, core and legs.  Most of the exercies are isometric. He also has some exercies to continue to stregthen his hands and arms.  We did these excercies several  times throughout the day.

Doug is anxious to come home.  He has the discharge date of March 16 on his white board.  He is getting tired of being in the hospital but realizes he still has quite a ways to go to be able to have any independence at home.  And so he is working at being as independent as he can and willingly does his exercies.

Let us pray for continued progress.

Holy God, the season of Epiphany is coming to an end.  These past days, we have been praying for your light to come into the world.  We have prayed that your light would bring healing and we have prayed that Doug would regain movement. We are so grateful for all that Doug has regained.  We are so grateful for his return to health. And we are grateful for the courage to continue to work hard to recover.  Be with him now and give him patience and sustain this faith and hope in your healing power.  In your name we ask it. Amen

February 23, 2017: Day +96

Today, I was delighted to see a post from Doug's first O.T. at St. Al's.  His name is Knox.  When Doug was at St. Al's and they took him off the ventilator, St Al's was contracting with Knox to provide Occupational Therapy services. I was so thankful to have Knox provide therapy because he was such  a skilled professional.  He got right to work with Doug, establishing a relationship with him and finding activities that would get him moving.  In his post yesterday, he reminded me how excited we both were when Doug moved his wrist on his right arm by himself.  That was the first week of January.  Now he is eating, brushing his teeth and reaching for items.  It was so good to have such a skilled professional work with Doug and to share the journey with me when Doug had lost so many skills. Knox taught me the things I could do to help Doug and I continued to do those things weeks after we left St. Al's.

I am so thankful for the staff that we have had like Knox that have brought their best to the therapy sessions and to Doug's medical care. It is wonderful when we have the support of a great team. Doug had a lot of therapies today.  I am glad that I have the opportunity to watch some of his therapies.  I am also glad that that this facility is goal oriented.  That is why we selected it.  Today in there team meeting they set March 16 as a tentative discharge date.  We knew they would set a goal for him to leave the Elks, but were really surprised it would be only 3 weeks from now.  He has a long way to go in the next 3 weeks but it will be wonderful if he could be walking by then.

We give thanks for the great therapists who make a significant difference in people's lives everyday.

Holy and Life Giving God: We give you thanks for the professionals who dedicate their lives to the health and well being of others.  We give you thanks for the dedication of therapists who bring new life to those they serve.  We give you thanks for so many who have entered into our lives these past weeks who given us hope and joy. We pray that in the weeks to come that the therapists that Doug will work with will have a clear vision of what he needs to recover and regain his skills and his life. In your name we ask it.  Amen

February 22, 2017: Day +95

As the evening is coming to an end, I am feeling happy about Doug's progress.  Sometimes it seems like the progress is up and down and so uneven.  Honestly though, I am delighted and happy that Doug continues to progress.  Right now he seems like he gets a little more frustrated even though he is doing more than he has done in the days previous.  Last night he had a pasta dish for dinner and he was able to eat all of his dinner by himself.  Tonight he had a chicken pot pie and needed me to help him with it.  He was unhappy he could not do everything by himself.  The wonderful thing is that he is trying to do everything.  He opened the butter by himself and was trying to butter on his roll.  He asked for a toothpick after dinner and was able to use it. He reached for a glass of water and was able to bring it to his mouth and drink from a straw, all on his own.  It was so nice to see him doing things he has always done.

He is also moving his body more.  When he started leaning to the right, he was able to push his hand down on the mattress and straighten himself.  When laying down he was able to reach across his body and grab the side of the bed and pull himself to his side.  He is able to watch full TV shows, enjoy them and laugh at the comedies.  He has come a long ways.

Last weekend I bought Doug an electric toothbrush.  I have helped him to turn it on and to brush his teeth.  He has not been able to move it around his mouth and maintain the brush against his teeth. Tonight he turned on the toothbrush and brushed his teeth by himself.  Whoohoo!

Before being able to walk he will need to be able to sit independently and maintain a standing position. He needs to increase his trunk strength and his leg strength.  He will continue to work on these things. He seems to be handling the 3 hours of therapy very well.

I also want to thank our friends who have visited and been companions to Doug yesterday and today. Thank you LeAnn, Thelma, Henry, Jerry Sitton and Jerry Korn. Doug caught me up on the conversations you all had and was so glad for the company.

Tonight we have much to be thankful for.  Doug says he wants to pray for patience, and so we will.

Holy God, we give you thanks for hearing our prayers and for each day of continued healing.  We thank you for dear friends who walk this journey with us.  We thank you for all who offer us encouragment and support along the way.  We see you in so many faces. Be with us when we become frustrated and give us patience and hope as we walk this path. This path often feels long, winding and slow. Help us to trust and have faith in your slow work. In your name we ask it.  Amen

February 21, 2017: Day +94

Tonight before writing this post, I was scanning through Facebook while sitting with Doug.  There were several posts from our new friends that we met in Mexico who went through HSCT with us. Everyone is celebrating 3 months post transplant.  This is a big milestone as by now the new stem cells have had the time to engraph, to develop in the new immune system.  Every one's immune system is now stronger and those who went through  treatment can now go out to eat and get out of the house a little more.  Of course everyone is looking for signs that the progression of their MS has stopped and also hopeful for some signs of improvement.

MS is such an unpredictable disease that robs people of the lives they hoped for and is such a challenge to live with. I find my heart  feeling so tender towards these wonderful new friends and their families.  To have MS you have to be brave.  You have to live with uncertainty.  You have to be willing to find hope and joy even when your own body seems like it is working against you.  And you have to renegotiate your relationships with your family and friends when your body leaves you with fatigued, pain, motor problems,  bladder and bowl problems.

Today  a friend from Nampa popped into my office.  She is doing some consulting work for us.  I learned that her husband has MS.  She said what her husband is going through is nothing compared to what Doug is going through.  He only has MS she said.  I did not know we would be hoping and praying that Doug will return to being able to do the things he could do before going to the hospital. Our hope was that with HSCT it would stop the progression and hopefully improve his symptoms. But for now we don't know how Doug is responding to HSCT.  We don't know if the progression has stopped. He has to recover from the Critical Care Neuropathy.  It will be a while before we know if everything Doug has gone through was worth it.

But there is something I do know. It was worth it to meet our new friends in Mexico who have MS and their families.  I feel grateful and proud to be friends with such strong people.  People who found joy, love and friendship in the midst of adversity.  People who were not willing just to sit back and let the disease progress.  People who stepped out and decided to take action. I am grateful for the continued support and love of these new friends.  And we are cheering for each of them.  Praying that each of them have stopped the progression of this disease and will begin to heal.

I pray for healing for wholeness for all who suffer from MS and their families.

Most merciful God, be with all that suffer from MS and other diseases.  Give them hope and courage in their challenges.  When discouraged  lift them up.  Give them a vision of your healing power and let them not become discouraged.  Be with their families as they love and care for their family member.  Give them hope when fearful.  Help them to be a support to their loved one and help them to care for themselves. Help us all to know the power of Christ and believe in God's healing power in our lives. In your name we ask it.  Amen

February 20, 2017: Day +93

Today was Doug's first day of therapies at St. Lukes's. We had the weekend to settle in and get ready for what will be the pattern of his days for the next few weeks.  He had 3 different therapies today which included speech therapy, physical therapy and occupational therapy. Each morning he will get a schedule of the therapies for the day and the therpists that he will be working with.

Doug seemed to feel pretty good about his therapies today. He wa able to do the full 3 hours and he does not seem to worn out tonight. He also ate lunch in the dining room, which means he was able to get out of the room for a little while.  Yesterday they had a regular wheelchair for him that did not tilt back at all and tried taking him to the dining room.  He was a little upset by it because he nearly fell out. Today they brought him a chair that allows him to tilt back just a little bit.  It worked much better for him.

He is working on feeding himself. He is doing very well with bringing the food to his mouth but is having difficulty scooping it.  They brought him a plate with a lip that he can push against and it is helpful but he still is struggling with enough hand control to scoop items that do not stick to the fork or spoon.

He is aquiring new skills everyday.  He will suddenly reach out and do something unprompted.  He is able to reach out now and move the tray, adjust his blankets, and hold his cup.  He was able to push the wheelchair for about 2 feet.  Today he was able to call me on his telephone. I am so relieved he can call me.   He wishes he could do more, but last week he could not do any of these things. He has taken many steps forward.

Between his therapies and his friends the day went by quickly.  Heidi and Jan came and kept Doug company today while I was at work, which he enjoyed so much.  One of the nice things about being at St. Luke's is that I can order a meal while I am here and then Doug and I can eat togther.  I don't have to leave him to go find something to eat.  He was not too thrilled with lunch today, however dinner was very tasty.   Doug had stuffed peppers and I had baked cod.  We both had cherry pie for dessert. We finished the evening with watching some TV.  It seems we are settling in to this new place.

And so we pray:

Holy most Gracious God, we give you thanks and praise for Doug's continued progress and for the people who care for him in so many ways.  We give you thanks for the opportunity to enjoy simple things like a meal together and watching television.  Watch over Doug and all who are ill or separated from their family members.  Give us hope in our troubles and confidence in your continued presence in our lives. And now as evening has come, may we rest in peace, and wake restored and refreshed to start a new day.  Amen

February 19, 2017: Day +92

Today was a very quiet Sunday.  I stopped at Flying M on the way to St. Luke's and picked up a latte and scone for Doug and I.  He was able to feed himself the scone and the latte from a straw while I read the Sunday paper to us.   After that we watched Meet the Press.  Then I rearranged things in the room and put some more things away that I had brought from home.  Fr. David came over this afternoon and brought us communion,

Then this afternoon while Doug napped I went shopping to get him an electric toothbrush so that he can begin to brush his own teeth.  I also went  shopping for a new mattress with adjustable base so that Doug will be able to sleep in a bed when he gets home.  Beds were all on sale for President's Day weekend and so this seems like a good time to look around.  I should have shopped for one for the past couple of years, because he has slept mostly in the recliner because it is easier for him to get in and out of it,  and because of his acid reflux.  While we were in Mexico he was sleeping in a regular bed and did fairly well and now after a couple months in the hospital bed that allows him to change the positions of the bed, it seems like the right time or past time to get him a bed he can be comfortable in at home. 

As I am writing this, I am thinking about the changes that have occurred.  I am making plans for the future and plans for Doug to come home. I am not living only in this moment.  It is nice to be on this side of the journey, where we can begin to plan for his homecoming and for our future.  Today he reminded me that he still wants to take that trip to China.  And yesterday when the therapists each asked him what his goals are, he told them his goals are to walk.  So that is our vision;  he will walk again, he will come home and we will take that trip to China.

                                       

February 18, 2017: Day +91

Last night was hard leaving Doug in a new facility.  I did not sleep well and woke early.  He was nervous when I left.  We left Vibra, knowing the staff and them knowing Doug.  They had become like friends.  Even knowing Doug's needs before asking and coming in just to visit. Last night at St. Luke's it was all business, getting Doug settled in.

I awoke early, and got some work done around the house.  I packed clothes for Doug because he is now allowed to wear his own clothes.  He has been wearing a hospital gown for the past two and half months.  I also picked up some personal items I thought he might like.  Patients are encouraged to make their rooms comfortable for them.  When I walked into Doug's room, he was laying in bed with scrubs on and looked pretty happy.  It had been a good night and he was ready for the day.  I was much relieved.

He had a busy day being evaluated by the internal medicine doctor, physical therapist, occupational therapist and speech therapist.  They were all really friendly and very welcoming.  We also had the same daytime nurse and CNA and the same nighttime nurse and CNA.  We learned that if possible St. Luke's tries to keep the nursing staff consistent for patients.  We so appreciate this and so do the staff.

Today, Doug and I finally got to have that Valentine's Dinner.  He has been craving Red Lobster because he watches their commercials everyday.  We ordered take-out Lobster dinners from Red Lobster and Doug was in heaven.  I have rarely eaten out since Christmas and so it was really nice for me too.  You can never go wrong with Lobster.   We  celebrated Valentine's Day, 90 days post stem cell transplant and arrival in the rehabilitation facility.  That is a lot to be thankful for.

Valentine's Dinner from Red Lobster

And so we pray:

God of Promise: We thank you for all those who walk with us, uphold us and give us strength when we falter.  We thank you for Patient, Doug's CNA who prayed with him this morning over breakfast.  We thank you for the therapists interested in Doug's stem cell transplant.  We thank you for caring people.  Be with Doug as he settles in to this new place.  Help us to remember that God goes before us always and all we have to do is follow.  Help us to continue to say Yes to each new challenge and to allow fear to pass through us on our way to hope for healing and wellness. In your name we ask it. Amen.

Feb 17, 2017: Day +90

I got a  phone call from Vibra at 8:30 this morning.  The transition coordinator Kodi, let me know that Doug would be transitioning this morning.  I finished getting ready and left for the hospital.  After some conversations with the staff regarding transition we essentially spent the rest of the day waiting. Around 3:15 Kodi said that she and the person from St. Luke's had been unable to get an approval response from our insurance and wondered if I would try calling and so I did.  It was an ordeal, with finally me basically asked them to expedite the transfer and being told that it ususally takes between 24 to 72 hours. By then it was around 3:30 and Doug and I decided we had better settle in because it looked like the transfer would not happen before Monday or Tuesday.  Kodi came down and asked about the conversation.  She said she still thought we would transfer.  She was going to go to her office and finish her paperwork and pray that the transfer would happen.  She said God always hears our prayers.  I said ok, but prepared to stay.

At 4:00 Kodi walked in the room and said that the transfer had been approved and that we will receive a transport from St. Luke's soon.  We were amazed.  I really thought that there was no way they were going to do the approval this late on Friday afternoon. Sure enough, 30 minutes later, the drivers came to our room and loaded Doug on to a gurney and off they went. Kodi reminded us that God answers prayers. Good bye Vibra and hello St. Luke's.  We were in Doug's new room at St. Luke's (Elks) by 5:00.

We spent the evening with the nurses evaluating Doug and completing paperwork.  Doug was doing even better today with eating, but the things he cannot do are more glaring with the questions and expectations of the new staff. We are definitely leaving the nurturing environment of Vibra which h feels very safe to a new place with the focus on rehabilitation and new people.  Doug has so many personal care needs and he is nervous about how he will get the care he needs.  The  staff have been very nice, but it is a change.  Hopefully we will begin to feel more secure soon.

It is after 10:00 now and we are still waiting for them to bring in a new air bed for him, bring his medication and settle him into bed.  It is raining outside and I have a long drive home.  Hopefully it won't be too much longer.  I need to be back in the morning by 8:30.  He has his first evaluation at that time.

God of Mercy and God of Hope, give us confidence  in our fears and hope in uncertainty.  Be with us during this time of change.  Be with all that will care for Doug.  Help this new staff to see his needs and support him as he struggles with his limitations.  Give them patience and compassion.  And tonight watch over Doug as he sleeps and give him peace. All this we ask in your name.  Amen

February 16, 2017: Day +89

When I got to the hospital this morning, Doug was in a wheelchair and getting ready to go to group therapy.  His attitude coming back from group therapy was much better this time than a few weeks ago.  He was actually fairly positive about it.  One of the PT aides was telling him he did very well and didn't he have fun playing Bingo.  Doug was very polite and said it was fine.  I am thinking this had to make him nuts!  He hates doing things like group games and Bingo.  Where have they taken my husband?  He was very compliant with the activities, but this is not Doug!  All I can say is WOW.  Good for him!  What a sport!

They brought lunch when he got back.  Doug is now easily bringing his right hand to his mouth and so I cut up his chicken and asked if he wanted to try feeding himself.  He did great!  He had garlic bread that he ate on his own with no help or support from me and was able to each the chicken, after I go it and put it on the fork. He has made such progress in the last week, I wanted to cry.  I was so excited.

Then his physical therapist came in and was going to help him back into bed.  He used a device that allowed Doug to help pull to a stand and then the therapist could help him pivot to move to the bed. Again, Doug's progress was amazing.  He was fully participating. He was able to use both arms to help him pull up. Then he was able to use his own core muscles to help him lay down.  In the past weeks he has been totally dependent on the staff.  He also was able to grab the handrails and help to move himself on his side.  It is so good to see this progress and so hopeful.

This afternoon I was finally able to talk to the transition person.  Doug has been approved to go to the Elks.Yea!  She thought it was likely that he will transfer tomorrow.  I went to work for a few hours this afternoon.  While I was gone a representative from the Elk's came to meet Doug.  She told Doug she had met me when I went to the Elks to observe.  She said they were waiting on insurance approval and that he might be moved tomorrow or it could be on Monday.  So we shall see.

Maybe the one good thing of being sick and away from the hospital is that Doug's progress seems more dramatic than when you see him everyday.So many changes in a short amount of time.

Gracious God, we thank you for all the blessings of this week.  We thank you for all of Doug's caregivers who have contributed to his progress and the compassionate care he has received at Vibra. We are grateful for the hope that comes from the possibility of more progress in his next facility. Be with us now as we prepare for more changes and  help us with the concerns  that come with the unknown.  We pray that the new facility will be a place of continued healing and our pathway to wholeness.  Amen

February 15, 2017" Day +88

Oddly, I did not see or talk to Doug today.  I don't remember the last time that happened.  My cold is still lingering.  The cough is all that remains with a little congestion, easily managed with over the counter medication. I am feeling really grateful that I have felt so much better the last couple days. However, it is not safe to be around Doug while I am still symptomatic. Ingrid was kind enough to arrange for people to be with Doug today and tonight. Thanks so much Vicki, Ryleen and Joanne.

I took advantage of having the time and had a physical therapy evaluation on my knee after work. That went very well.  The therapist said I was doing really greatl.  I told him that I preferred to have a home physical therapy program, that I can do within my own schedule.  He agreed with me.  We set up a tentative appointment to check my progress in 2 weeks.  He said that if am able to do the exercises independently and not having any more difficulties I don't need to come back.  It will be up to me.

I waited all day to hear back from the transition person at Vibra.  She was waiting on a call from the Elks regarding accepting and transferring him.  She said she thought it would happen this week.  So we are still up in the air on when and where he will be going.  Hopefully I will know in the morning.

Early this morning I was taking the garbage out before work.  It was very foggy outside and the driveway was somewhat damp.  After pushing the garbage to the end of the driveway I suddenly became aware that I was able to push the garbage without my knee hurting, without fear of slipping without having to navigate the snow and I was walking pretty normally!  I hurt my knee the first day it snowed after we returned from Mexico and I have been struggling with it and the brace for the last two and half months.  I am so glad to have it healing and at the same time the weather getting better. Now if we can get Doug walking, life will be wonderful and so much easier. In the meantime I better do my knee exercises and Doug his physical therapy.

I am really thankful for all the prayers offered by everyone for my healing and Doug's.  I am so pleased my knee is doing so well and my cold is coming to an end.

And so we pray:

God of Hope, God of Mercy: Thank you for your continual presence in our lives. Thank you for hearing and prayers.  Thank you for sustaining us during difficult times. We are especially grateful for the gift of healing and for the healers in our lives.  Be with Doug as he sleeps this night.  Give him peace and comfort in  knowing that he is loved and cared for. Help him to wake in the morning refreshed and ready for new beginnings and continued healing.  In your name we ask it.  Amen.

February 14, 2017: Day +87

It is the middle of February and it is Valentine's Day.  A day to celebrate love.  How much better does that get?  Granted we should celebrate love everyday, but like everything else, sometimes we need special reminders of what is important.

I went to work today, feeling much better than yesterday.  The fever left me yesterday afternoon and with some decongestant and cough suppressant I am doing pretty well. At noon, I got a call from Doug, wishing me a Happy Valentine's Day.  Pretty sweet considering he had to get someone to call me and hold the phone for him.  That is enough of a Valentine's present. Perfect. On the way home from work I stopped and picked up Doug a Valentine balloon and a box of chocolates.  I could not let the day go without a little remembrance.  I also bought chocolates and brownies for the Vibra staff for the care they have provided Doug with me not being there.  I stopped by the hospital, sanitized and put on my mask and took Doug the gifts.  I have not seen him since Friday.  He was really glad to see me.  I hope and pray my mask kept all my germs contained.  It was good to have a few minutes to enjoy  a little Valentine's celebration.

Upon entering Doug's room, I saw that he had Valentine cookies  and Valentine cards from friends who stayed with him today.  It was so sweet to know that Doug had been able to celebrate the day with others.  Thank you so much Jane, Jerry and Jan!

More good news, Doug was able to bring his right hand to his mouth.  Jerry said that he tried to pick up the cookie and eat it.  He is not quite there yet, but almost.  It won't be long.  He can now bring his left hand to his chest.  I was just thrilled.

Since I am still trying to recover, I am going to keep this short. I hope that all who read this blog, took some time to celebrate Valentine's Day.  Please know that Doug and I both wish all who follow our blog a very Happy and blessed Valentine's Day.

And so we pray;

God, source of all that is good; God, from whom all love comes; open our hearts, stretch our imaginations, and guard us from our fear so we may catch a glimpse of the power of your love. Teach us to rest in that love and be recreated in it.  And as we are filled, help us to carry that love to others.   In your name we ask it.  Amen.

February 13, 2017: Day +86

It is the eve before Valentine's Day.  Doug has been asking about Valentine's Day for over a week and wondering if we can have a dinner delivered.It is really very sweet.  Here he is, laying in a hospital bed, but wanting to do something to celebrate Valentine's Day.  It would be so easy to just ignore it this year.  In fact, he is not suppose to be eating out until Day +90 according to directions that many of us were given after transplant.  There are a variety of opinions about this.  According to the doctors we have right now he is OK to eat restaurant food if his blood counts are in the average range.  Honestly,  this does not seem like the riskiest thing for us to do right now, because being in a hospital with all that he has gone through seems much riskier.  Still, I have been very cautious.  If we can tip the scale of wellness in Doug's direction I certainly want to do that. With me being sick, I think we will celebrate with a nice dinner from a nice restaurant on Day +90 where I can give them special directions to assure his safety.  And hopefully on Day +90 I will be over my illness.

I stayed home again today.  I continued to run a fever through the night and could not sleep, waking often with coughing.  By this afternoon my temperature came down and I could finally sleep.  A number of times over the last few months I would really have liked to have had a couple of days off with nothing to do; but being sick was not how I imagined that working out.  It is not quite the same.  Still I am grateful to be home. I have not spent any real time here since last October, other than to sleep.  And it was nice to have Stryder here with me, constantly at my side. And thanks to Jerry, Ingrid and Penny, Doug was not alone. He is so thankful for this company.

This Camino has lots of twists and turns.  My friend Jodee left a funny comment on the blog today. She said I  being ill was like we stayed at a bad hostel on the journey. l will have to be careful not to stay there again!  She made me laugh.  Another woman Alli, who has been following the blog left a comment a few days ago. She said that she is recovering from HSCT for MS in Traverse City, Michigan her childhood home.  She is a friend of Jackie's, who had treatment with Doug in Mexico. Jackie had asked her to pray for Doug and I.  It turns out she is an Episcopalian, like us and grew up attending Grace Church in Traverse City.   Doug and I served at Grace Church in Nampa.  But there is another connection as well.  I had never heard of Traverse City, until Angie and I walked the Camino de Santiago a couple of years ago.  We spent the last week with a woman named Jill.  Our intention has been to get back together with Jill again and we have not made that happen yet.  We shared some important parts of our Camino, both of the heart and of the commitment to complete this Camino, with Jill.  Jill had two other friends she was walking with, and I have forgotten their names for now, but not them.  They had both recently retired, she from being a teacher and he, as a hospital chaplain.  During those last days we shared much from our hearts and lives.  We spoke of books we had read and where our life journeys' would now lead.

Now, on my fourth pilgrimage for healing, I find it ever  so interesting to be connected to Traverse City again.  I wrote a few quotes from my friends that I wanted to remember.  This one stands out for me. I believe it came from a book, but I don't have the authors name.

"Hope is a good thing. Maybe the best thing.  And no good thing ever dies."

This seems like a very good quote to ponder this night.  This night before Valentine's Day. I continue to hope in the healing power of love and in our God who is love. Look at the chance of meeting these fellow perigrinos from Traverse City who were seeking healing. Many say, there are no chances.

God of Possibilities, thank you for showing us what is possible that some might consider only chance. Thank you for bringing people into our lives to walk this journey with us and people who bring light to the path.  "Help us to remember that "Hope is a good thing.  Maybe the best thing. And no good thing ever dies." Amen

February 12, 2017: Day +85

I have been home now for 2 days because of the cold or flu.  I am not sure which it is.  I have been running a fairly high temperature and coughing.  I have not coughed as much today, but now my chest and stomach muscles hurt from all  the coughing yesterday.  I talked to Doug today and told him that I felt even more compassion for him when he entered the hospital and they could not control his coughing, that went on for days.  He must have really hurt. He said the good part is that he does not remember it.  Now that is a blessing!

Speaking of blessings, my friend Ingrid called me around noon today and got after me for not calling her yesterday for her to arrange for people to be with Doug.  I guess I kept hoping this illness would just go away and I could wear a mask, gown up and go in.  Well,l that did not happen.  Being the sweet person Ingrid is, she immediately arranged for people to be with Doug today.  When I talked to Doug tonight he was so grateful for the visitors.  Saturday was an awfully long day for him.  So thank you so much Jan, Fr. David and Gina.  Your visits meant a lot to both of us.

I am still debating on whether to go to work tomorrow.  According to the Internet you are suppose to wait 24 hours after a fever.  I still have a fever tonight, so we will see how the night goes and what I feel like when I wake up in the morning.  I have not been this sick for a very long time and I am still praying that Doug does not get this.

While I have been laying in bed these last couple of days, when  I have not been sleeping, I have been reading a book written by the retired Bishop John Thornton.  Bishop John ordained Doug and I.  He is very special in our lives.  Just before leaving for Mexico he gave Doug a special blessing and gave us 3 of his books. The books are made-up of sermons that he has given.  He is a wonderful preacher and story teller. In his book "Good Seed and Zizania"  he wrote a  kind of poem  or maybe it is an admonishment in the first chapter. It is about Love.  In fact if you read his book you will find that many of his sermons are about Love.  Imagine that.  He has a way of teaching about the nature of God.  God is Love.

Over the last few months many people have mentioned the love Doug and I have for each other. Loving in the midst of challenging circumstances can be difficult.  I know this.  I know that my friends living in relationships where they themselves, their spouse, their parent or their child have M.S. may face significant struggles.  We struggle with disappoint, fear of the moment, fear of the future, confusing symptoms, fatigue, and frustration to name a few. But the question is how do we keep going, growing, perhaps even more fully develop? I suspect much of it comes from making the decision to love. To choose love. A few years ago I spent a full year reflecting on live, love, laugh.  I divided the year in thirds.  I spent 4 months reading and meditating on first living deeply, then loving bolding and finally laughing often. The practises that I adopted during that year have helped me during the more challenging days.

But back to Bishop John, this is what he wrote.

Love is the way.
Go that way!
Never go any other way!
Go that way even if no one else goes that way.
Never turn back.
Go, go, go, Christ-ward!
And don't be afraid.

Love is the way.  Some of love is chemistry and more of it is choice.  For me though, when I love deeply, I find God at the deepest, most lovely center. Each day I know, that love will or can find a way if I allow it.  And sometimes it is just Grace.  God breaks through.

God of Love, God of Laughter, God who lives in each of us:
Thank you for the outpouring of love we find in the simple gestures of kindness.  Thank you friendships, for strangers and for those who pass through our lives.  Thank you for our teachers of the Way.  Help us to not be afraid to love boldly, expecting nothing in return.  Help us to live deeply, enjoying every moment of our lives.  Help us to find joy and laughter in small things.  Help us to not be afraid. And so here we are opening ourselves and trusting in your goodness all the days of our lives. Amen

February 11, 2017: Day +84

Unfortunately I definitely have a cold.  I woke early running a fever, runny nose and coughing.  I have stayed home hoping to get over this quickly and praying I did not expose Doug to it.  I really have not felt well enough to go anywhere.  This hit me pretty hard pretty quickly.  I have spent the entire day in bed, with my faithful Stryder right next to me.

I was able to talk to Doug a couple of times at Vibra.  He of course was disappointed that I was not coming and that I would not be able to come tomorrow either.  He was worried about me too and wanted to make sure that I take care of myself. I talked to the aide Ben and he helped Doug with the phone.  He told me that he was assigned to Doug today and tomorrow and he would take good care of him.  He was so sweet, he knew I was worried about not being there.

This morning they took a new urine sample from Doug which also meant that they had to take out and put in a new catheter. This is a painful procedure and I was concerned for Doug.  He said it was not pleasant but he got through it okay.  They took more blood today.  They are testing for a yeast infection.  The good news is that Doug is not really symptomatic yet and so if it is still present they should be able to treat him before he experiences more problems.

Angie and Tom are in Cascade this weekend with the kids, enjoying a ski weekend. And so they can't stay with Doug.  My sister Kate is home too with a cold.  She has been sick all week.  I don't know if I picked my cold up from her or somewhere else.  There is so much going around.  I am really careful, but without being in isolation it is tough to guard against getting sick.  I will redouble my efforts.  

And so we pray:

Gracious and life giving God, thank you for the kindness of caregivers like Ben. We thank you for seasonable weather and sunshine. We thank you for the kindness of friends. We know that life can be difficult for many.  Be with all who suffer.  Give them hope in their troubles and peace in their hearts.  And we pray for healing and wholeness asking that Doug's tests will come back negative and that I get over this cold quickly, praying especially that Doug does not get this cold. In your name we ask it. Amen

February 10, 2017: Day +83

Doug asked me to bring Stryder again.  I picked him up at my sister's, then went to get a latte and a blueberry scone for Doug.  This is about his favorite breakfast.  Little things like this brighten his day.  He was so glad when I walked in the door with our dog and his special treats.

The occupational therapist worked with him through lunch time. He was looking for ways to strengthen Doug's arms and hands so that Doug can feed himself.  We tried several different things and I will continue to work with Doug throughout the weekend.  Doug got very tired near the end and was ready to rest.

Angie came over and had lunch with us.  She finished her jury duty yesterday.  It was a tough case and she was given the role as the lead juror.  She said it was a good experience, but difficult.  When you are making decisions about people's lives you really want to get it right.  She found she shifted her position as she listened to everyone and felt like the group decision was really a good decision. She and Tom took in a new 4 year old foster son this week.  She has been very busy and this will keep them all a little busier.

This afternoon they had "active shooter" drill at the hospital. The Meridian Police Department, partnered with Vibra to practice their response and improve their practises.  It was quite the buzz in the hospital.  As it turned out we were not impacted at all. The main doors to the hallways closed.  We could not get out and no one could get in.  So it was pretty uneventful for us.  I don't know how it turned out, but the lead-up to it was pretty exciting.

After the drill we were able to get Doug into a regular wheelchair and go for a walk with Stryder outside.  I am so glad my knee is doing well enough to take him out.  Doug has not been outside since December 8.  It was so nice for him to get some fresh air.  We took a walk around the building.  All three of us, enjoyed being able to participate in this very normal activity. Poor Stryder has had hardly any walks with all the snow and ice.  It was wonderful for him to get out and smell things.

I am not sure who enjoys having Stryder at the hospital the most. Certainly Doug and I like it, but so do all the nurses and many of the patients.  The patient across the hall asked if he could come and see her.  She loved being able to touch him. There are a couple of other patients on the other hall that call out to me when I walk by.  They too want to see Stryder.  Stryder is a sweet old guy.  He is 13 years old.  We are grateful for everyday we have him.  He is just happy to be with us. Happy to lay on his dog bed and sleep or eat and enjoys the pets of all the staff who come in and out.

Doug's energy was really low this afternoon and yesterday too.  I am a little concerned.  No new skills in the last couple of days.  We learned just before I left tonigh that they had found some yeast in a urine sample a couple of days ago.  They are going to change his catheter and do another sample in the morning.  Poor Doug is not happy about that. But we also don't want anything to get started. With his compromised immune system we need to be careful.

Then this evening my throat started getting scratchy.  Now I am worried I might be getting something, and hope I have not given anything to Doug without knowing it.  We will have to see what the morning brings. I am hoping it is nothing, but at this moment it feels like I might be getting a cold.

Please pray for healing for Doug and for me.  He really does not need a cold!

God of Mercy, we give thanks for all who work on your behalf, especially jurors who give their time to interpret the law and make just decisions.  Thank you for police officers, who work under difficult conditions and yet continue to be better prepared  to help our communities to be safe.   We give you thanks and praise for our pets; for the love and friendship they provide.  Lord, Doug has been through so much.  Mercifully grant him a good night sleep so that he will wake restored and well; protect him from catching any viruses or bacterial infections.  And Lord, we pray that you will take this cold from me so that I might keep Doug safe and well.  In your name we ask it.  Eileen

February 9, 2017: Day +82

Today Doug had the opportunity to participate in Group Therapy again.  This time he went  much more willingly than the last time.  The good news is that he was able to do more independently this week.  He is moving his arms and legs somewhat. Since I knew he would be busy with his therapies this morning, I took the opportunity to get some laundry done, change my sheets, pick-up things I had been laying on the dining room table each day and pay bills.  Not an exciting morning, but it was nice to have some time to do a few things around the house.  I also took the time to get the oil changed in our car and pick-up Doug's medical records from St. Al's.  Before Doug left St. Al's, I requested his records.  It took them several days to get them ready and today was the first day I had the time to go by and pick them up. He had a lot of records.  In fact, 900 pages of records that measured about 6 inches thick. I had no idea there were that many.

He was pretty tired this afternoon.  Therapy took a lot out of him and so this afternoon he spent most of the time resting.  Every other day, I have seen some improvement in him, but today he seemed about the same. The nurse practitioner said that Doug was a little discouraged from the slowness of his progress and the great effort it takes for him to move.  She said that she had given him a pep talk, reminding him that only a month ago he was hardly moving at  all.  The physical therapists are telling him the same thing.  I can't imagine how I would be if I had gone through what he has.  I think it is okay for him to feel discouragement sometimes.  We all have up days and down days.  I am impressed with how he has held up so far.

I slipped away for a break with two of my friends from work, Ludee and Kelly.  They both have been so supportive over the past months. I am so grateful for their friendships.  It was fun to have a glass of wine and to have some time away to just relax and talk education. Both of these beautiful women gave me flowers to welcome me back to work. These flowers are brightening my day and give me hope for spring!

Today felt like spring.  The snow is finally melting.  A friend posted some daffodils that are coming up through the snow.  Life finds a way.  And so we pray

God of Mystery, these past months we have been cocooned in the protection of the hospitals. All of Doug's needs have been cared for by others.  We give thanks for the continuous care of the hospital staff as documented in the huge stack of medical records.  We give You thanks for the time to catch-up on life and for the time to be with friends.  And we give You thanks for flowers; for they  remind us of the beauty of this world and the hope of new life.  Amen

February 8, 2017: Day +81

Our nurse stopped by and visited with us for a bit before going off shift tonight. He was in technology until the bottom fell out during the technology boom in the early 2000's.  He had a very successful career and then ended up having to mow lawns and do landscaping.  Oddly though, he lost weight and was in the best condition of his life.  Being physically fit, he felt good and found himself happy after what seemed like the lowest point in his life. He had just turned 50.   He then went back to school and decided to become a nurse.  He is finishing his working career helping people, not for the money, but because it is meaningful work.

I talked with the transition coordinator today.  She said she is leaving town tomorrow to go to Seattle. She has a medical condition and needs to see a specialist.  That means that Doug won't transfer now until next week.  She has not heard from St. Lukes yet to know if he will be accepted.  She too is a woman who has had to start over in her life too.  When she found her job at Vibra it was a new begining for her.  She loves helping people. She feels like she is making a difference. She has worked at Vibra only a few months, but they have been very supportive of her in her most recent illnessgiving her the time she needs to heal,

These last few days I have been in contact with some of the people we were in Mexico with.  We are quickly approaching 3 months since the stem cell transplant.  Everyone we were with in Mexico, had come to a place in their life with MS that they were willing to step out and get treatment in the hope of finding new life, new beginnings. For some it was the only hope to stop the disease.  For others, they wanted to stop it before it could do any damage.The diagnosis  of MS forced a change in their life and in the lives of those who love them.

Our transition coordinator, said to me tonight, we all want control of our lives, but life takes us places that we don't ask for and then we have to change.  We may resist, but eventually we have to meet life where it takes us.  These last 3 months have been a journey I would never have chosen.  Of course we would never have chosen a life with MS.  It is difficult to live with, it changes your path in life.  But here we are. Day upon day in the hospital, even with progress, even with caring people it is tiring. This afternoon, I was sitting in the chair next to Doug while he was sleeping I fell asleep.  I never fall asleep in a chair.  I think some of the constant vigilance of the last few months caught up with me.

Our whole life for several years has been constantly adapting to the changes in Doug's health.  Then these last two months have brought big changes. Work for me changed.  First not working and then upon returning to work my hours and programs have been changed.  And so we wait, waiting in the hope that life will turn and these changes will bring new life in new ways.  We pray that these new ways will be more than we can hope for or imagine.  My friend Cory sent me a text today saying she believes the new powerful stem cells, along with prayers and positive thoughts are giving Doug strength and healing. I thing that is true too

And so this night I am praying for all of our friends who went through stem cell transplant.  I pray they are finding new life and that their new stem cells are building a new immune system that is healthy and restorative.  I also pray for all who are going through change that they may find God in the midst of the change and have faith that new life is beginning.  That they will have faith that something new is begun and believe all will be well.  And I pray that Doug and I will find rest in the changes and chances of this life.  That we will see days getting brighter even though the clouds are present.  And I pray that all who are challenged by this life will reach out and find strength in others and in God. And finally, we give thanks for the people who came along, shared their stories and offered hope. And today we give thanks to Heide, who shared her light, spending the morning with Doug.  Amen

February 7, 2017: Day +80

So many of you responded to my post on why I write this blog.  Thank you so much for your encouragement and kind words.  Throughout this journey we have been bouyed up by the support of all of you.  Your continuous pouring out of love and prayers  have sustained  us during the darkest times and during the slow and sometimes frustrating journey back. My friend Barb, likened this group to the "communion of saints".  Surely you all have been saints to us. We did not start this journey knowing that we would rely on the prayers of this community, but certainly it was the prayers and the support of all of you that has gotten us this far. We are so grateful for the love you have wrapped around us, giving us strength to continue.  Bless you all. 

I have now worked two full days and spent the last 2 evenings with Doug.  Many have asked how is it to be back at work.  It feels very natural to be back at work.  Being in the hospital these past 2 months has really been the alternate reality.  I have been so grateful to have friends with Doug while I am away and he has so enjoyed their company.  Coming into the hospital tonight the nurses and the aides greeted me and let me know how Doug did today.  They are so supportive and thoughtful.

Upon my  arrival at the hospital, Doug was ready to have dinner.  His appetite is back and he is not complaining about the food.  Tonight he had a taco, fries, beets and a cookie.  Okay, he did complain a little bit.  He did not want to eat the beets.

Tonight Doug reported to me about the things he was able to do today. Usually it has been me telling him of his improvements.  Tonight our roles were reversed.  I am so glad he is noticing and happy with his improvement.  He is now able to turn the channel.  That really makes him happy.  He has had to ask someone to turn the TV on and to turn the channels.  I asked him if he could put his left hand on his belly and he moved his hand to his belly and back.  It is following the same pattern as the right side only serveral days later. . We feel reassured that everything is coming back.  He told me that the therapists had him sitting him on the side of the bed and he was able to sit on the side of  the bed for 30 seconds balancing himself.

And so we pray;

Surely the presence of the Lord is in this place.  We see your power in the miraculus improvements Doug makes each day.  We experience your presence in the staff that care for Doug throughout the day.  We experinece your deep love in the those who journey with us.  We see you in the servant ministry of Jane and Doug as they sat as companions to Doug today. And we give thanks.  We pray that you will guide our thinking and guide our actions as we continue on this journey toward healing and wholeness.  In your name we ask it.  Amen.

February 6, 2017: Day +79

It seems like everyday brings small amounts of joy.  Over the weekend Doug began moving his right arm and hand.  He was able to lift his hand to hold the tray table and reach out and shake Fr. Dave's hand.  Then last night he was able to move his left arm and hand off the bed by about 6 inches.  When he does these things he does not seem at all surprised.  I think he has been sending signals to his body all along and nothing moved.  Now when he sends signals something moves.

His respiratory  therapist was just in.  He has not seen Doug in a week.  He was very happy to see that he is breathing so much more deeply.  He had a chest x-ray yesterday and his lungs look good.  His oxygen levels are always above 95 now. He has come so far.

Yesterday his physical therapist came in to Vibra on his day off to get Doug into a regular wheelchair with only a couple of support pillows. Doug was able to sit in the regular wheel chair for more than hour. And yesterday he was able to sit 14 seconds by himself on the side of the bed.  A couple of days ago when they tried, he was able to sit for only 4 seconds.  His trunk and back muscles are getting stronger. So day by day it is coming.

Early last week when Doug got the feeding tube removed, we set a goal for Doug to be able to eat chicken wings for the Super Bowl.  Sure enough he ate chicken wings and loved them.  The aides were so excited for him and his progress they went and got him some little smokies to celebrate from the staff lounge where they were having a pot luck.  He was in heaven.

Our goal for this week is for Doug to be able to feed himself some finger food.  Last night he reached up and took two chips off his tray and tried to make it to his mouth.  He dropped them on his chest, but he was pretty close to making it happen.  I was so excited.  I was totally involved in the last few minutes of the game when he said darn! I looked over and there were the chips.  He just keeps trying to do more.

Today I went back to a regular schedule of work.  While I was gone, three of our friends kept Doug company.  He had a wonderful day with these kind and caring people.  Thank you so much Jan, Joanne and Jerry. You made my day easy.  We are both so grateful.

It is time to pray.

God of Beginnings, You go before us always. Give us eyes to see Your presence in all things and to trust in your goodness.  We are so grateful for each small step of progress.  It sustains our hope. There are challenges to be sure.  Help us to let go of fear, live fully into the mystery of the unknow and await the promise of new beginnings and new life.  In your name we ask it.  Amen.

February 5, 2017: Day +78

One of my colleagues asked me the other day why I continue to write the blog.  Others have asked me similar questions.  I can say I don't have an easy answer to this question. The answer is rather complex.

Several years ago, I learned of the Caminio de Santiago de Compostella, a 500 mile walking pilgrimage across northern Spain.  The minute I heard of it I knew I wanted to do it.  I had for many, many years wanted to go on pilgrimage.  Sadly though, Doug could not go with me, because he could not walk that far because of having multiple sclerosis.   And so I decided to walk it, praying for his healing and for the healing of my son-in-law who has lupus and all my friends suffering from auto-immune diseases. Prior to walking the Camino, I read over 15 books written by others who had walked the Caminio.  Reading their books I saw them reflecting on the journey and so I decided to blog the experience to document my own spiritual journey and to share with others who were interested in the pilgrimage or just interest in walking the Camino.

Then last year I decided to go on pilgrimage to Italy, Rome is another ancient pilgrimage,  and once again I prayed for healing for Doug.  On this pilgrimage it was important to me to to walk through the "Holy Doors" at St. Peters to ask for mercy, for Doug, that he might be healed from M.S. Every 25 years or so the pope opens the "Holy Doors" to offer special acts of forgiveness or mercy.

After making plans to go to Rome with my friend Scotti,  Doug told me that he had always wanted to go Rome.  I did not know this.  With Doug's disability progressing I knew that we needed to make this trip soon, before he would no longer be able to travel.  While attending a clergy retreat, I received an email about a cruise that began in Rome and traveled the Mediterranean, with a stop in Istanbul and Athens. More places I knew Doug wanted to go.  And so I booked the trip.  Again I blogged the experience and we traveled praying in holy sites for Doug to be restored to health.  And then the night before returning home, my son-in-law Tom sent information that had just been published on stem cell transplants with outstanding results.  This research is the closest thing to a cure for M.S. that we have found.

After a lot more  research we decided with the great odds of 80% or better of stopping the progression of Doug's M.S., this was treatment worth getting.  We began making plans for this Grand Camino of seeking wholeness and healing  by traveling to Puebla, Mexico.

And so why do I continue to write?  This pilgrimage is not over.  We continue to pray for healing and wholeness, with faith and expectation.  We have not yet reached the destination.  When a person is on pilgrimage it is a commitment to follow God.  When we left for Puebla we did not go just to receive treatment from an internationally renown clinic. We went, following a call to healing.

"Pilgrimage calls us to be attentive to the divine at work in our lives through deep listening, patience, opening ourselves to the gifts that arise in the midst of discomfort, and going out of our inner wild edges to explore new frontiers". ( A quote from The Soul of a Pilgrim, by Christine Balters Painter.

With this in mind, the reason I write each day, is to take the time to reflect on the journey, to look for the divine in our midst and to discern our next steps.  We travel this journey in expectation, in trust and in wonder. I sense that when we reach the end of this journey, we will find healing in unexpected places and wholeness will be redefined for us.

We pray,

God, who navigates us through life,  we thank you for your gentle, but persistent call.  We thank you for being with us at all times, through each twist and each turn.  We thank you for making your self known to all who seek you.  Today we thank you for the friends who share the journey and open themselves up, to reveal their own stories along the way.  As we continue this journey, help us to trust in your guidance and in your presence.  Help us to delight when progress is slow and when progress is fast.  And we give you thanks for the movement Doug has regained this day in his left arm, for sitting in his wheelchair and on the edge of the bed.  We are filled with awe and delight.  Amen, Amen.

February 4, 2017: Day +77

Today was a special day for Doug.  I was able to bring our dog Stryder to spend the day.  Doug has been longing to see him.  Initially I had to wait until Doug was out of Neutropenia and then I needed to wait until my knee was strong enough to handle him.  I brought his dog bed, dog bowls, food and lease. To bring him to the hospital I had to provide the supervisor with a copy of his immunizations and get her permission. Stryder got a lot of attention from the staff and a few patients before I even got to the room.  But when I walked in with Styder Doug was delighted.  All day, he was so happy to have in the room with us.  We both have missed him.  My sister Kate has been keeping him for us since I have not been home and he really needs company.  It felt good for the 3 of us to be together today.

Our friends, Ted and Ludee came by to visit.  They brought Doug a Coke which he just loved and brought both of us piece of lemon pound cake which was delicious.  It was great to have some time with them.  While there Ludee took a family picture of us.  So sweet...

I ran off with Angie, my daughter for a couple hours and we did some shopping at Whole Foods and had an early dinner together.  Angie took me over to see the house they are selling in Boise.  It was nice to do these things together.  I have not seen the house because I have been totally focused on Doug since we got back from Mexico.  It was nice to know I could be away from the hospital and know that Doug was in good hands and that he could call for help if he needed it.

The nurses and CNAs are telling me that they all want to care for Doug.  They think he is really nice and he is always appreciative of them.  We often have visits from the staff that are not assigned to his room. They come by just to see him.  Everyone is very attentive here.  Today we had extra visitors, because many of the staff wanted to meet Stryder.

Some more good news, Doug is having no pain in his back today.  It all resolved. Tonight I looked over and he had  reached up and had his hand on his serving tray.  He has not done anything like this for months. It was a simple thing but it was amazing to me.

And so we pray

God of Surprises,  we give you thanks for the healing of Doug's back. We thank you for all who care for Doug and provide him the support he needs.  We thank you for good friends who look after us in so many ways.  We ask you to bless Doug in his recovery and bless Stryder as he ministers to Doug in a very specific way.  While Stryder is an old dog, we giv you thanks for  him and the life he brings to us.  Amen

February 3, 2017: Day 76

We covered a lot of ground today, but let me start with some fun news.

When I arrived at the hospital physical therapy had been working with Doug.  He had a great session. He was able to sit on the edge of the bed with no supports for 4 seconds.  He balanced himself.  We were very excited.  He also stood today with just the support of the therapists.  That was another big accomplishment. His physical therapist wants to work toward transitioning him to a regular wheelchair this next week.

His occupational therapist came in and did some new exercises with him.  Today not only was he moving his arm to his belly but also lifting his arm up on his right side.  His  left side is still slower to respond.  However he was able to turn his hand over on his left side and pull his whole arm back from the elbow and shoulder.  He is now able to move both shoulders back and forth and up and down. We did show and tell all day with everyone who came into his room.  Everyone is excited over his progress here.

More good news.  He was cleared by his SLPs to have a regular diet.  No more restrictions.  He has been asking for a hamberger for weeks.  So today, I went and got him a Smash Burger, fries and a Coke. He kept saying "This tastes so good" over and over and over.

With support from Marsha our SLP, Doug is now eating
Smash Burgers

I went and looked at 3 potential facilities to transfer to for rehabilitation and medical support.  The transition coordinator here at Vibra was in the hallway when I started to leave.  I told her about Doug's progress.  I told her how everyday he gets better. Who knows what will be happening by next week.  She thought I might want to check with the Elks, now owned by St. Lukes.  And so I did.  I think out of all the places I looked at, that St. Lukes may be our number one choice.  It is not very convienient for me.  They have a sub-acute floor and an acute floor. Doug can transition between the floors as appropriate to meet his needs. They also have a higher nurse to patient staffing and doctors on staff.  They have specialists in neuroligical disorders. St. Luke's comes highly recommended by one our favorite nurses here, and I have had a couple other people tell me very positive things. I feel hopeful about finding the right place and feel positive that Doug is making good progress and will be ready for the next stage in this grand Camino. I am thankful for some wise words today from my friend the Rev. Karen Hernandez.  She said that God always goes before us in our transitions. I am trusting in that.

Lastly, Doug is having substanial pain in his back tonight.  We are not sure why.  It is midnight and I am still with him here at the hospital.  We are not sure of the cause of the pain and hope it is neurological, related to the nerves in his back waking up or a possible strain from the work he did with the PT earlier today.  I just hope it is not a kidney infection.  The doctor has ordered some pain medication and so hopefully it will begin to reside.

Time to Pray:

God of Possibilities, God of Light, you go before us always, with the reminder to "be not afraid". Today had so many twists and turns and yet with every hill to climb, there was a glimpse of the vistas ahead. Thank you for the blessing of wonderful people, working so diligently to make a difference in peoples lives from our therapists and nurses to the staff I met in the many facilities I visited today. We are so grateful for the progress Doug is making each day. It fills us with hope for the days to come. Be with him this night.  Ease his pain and may he awaken in the morning rested and well.  In your name we ask it.  Amen

February 2, 2017: Day +75

As I went to bed last night and woke up this morning, I was feeling more relaxed then I have in a long time.  Doug is medically stable, he is receiving really good care, my leg is feeling better and I was rested.  Before heading to the hospital I decided to stop and pick up a latte and muffin for Doug from Flying M.  This is his first latte in a couple of months.  He has been longing for a latte and scone.  The scone is till too crusty, but the muffin was a great substitute,  He loved it.

When I arrived today he was in group therapy.  A few days ago they invited him to group therapy, but he declined.  He said that he had ran many group therapy sessions over the years and he was not going to one.  I inquired a little more about this and found out it had nothing to do with mental health, but rather physical and occupational therapy. We had a good laugh. With this new information he decided to go.  Coming back from it today, he was not too thrilled.  He said he hated to see so many pathetic people and there were people older than him that had more skills than he does.  He felt down. I am not sure he was ready for the group since he is still really limited.  I think individual therapy might be better for him for a while.  The good news is that he was up for about 3 hours in the wheelchair.  His ability to sit with limited supports has gotten so much better.

This afternoon the nurse came in and said the doctor had written the order to take out the pic line and that they are beginning to think about transition.  We knew it might be coming but still our jaws dropped a little.  Doug said that he did not want blood drawn with a needle.  I asked to please see the doctor.  The physicians assistant came to meet with us.  I think I am still a little shell shocked from St. Al's. There, when they made the decision for transition we would need to be ready to move the next day.  I was all prepared to fight it, because I want time to find a good placement and I want to assure that I can be with Doug during the transition and I had planned on returning to work on Monday.   The transition person came to meet with us.  She said we are only beginning the process. I will have tomorrow to go look at facilities and we can anticipate a move late next week. Having more time feels a lot better.

PIC Line

Doug is being referred to a sub-acute facility because physically he is not able to participate in 3 hours of rehabilitation therapy.  The number one facility on the transition list is River View on Americana in Boise, Sunny Ridge Rehab and Trinity Mission in Nampa. St. Luke's and St. Al's rehab usually require that you can do 3 hours of rehabilitation and so they are probably not an option yet.

So overall, we should be celebrating that.Doug is doing so well medically and he is improving very slowly physically.  But transition is scary.  We would both find this move so much easier if Doug could move on his own enough to press a button for help or care for himself.  We pray when he moves next week he will be closer to independence.

Here is some late breaking news. We were just getting Doug ready for bed and he moved his right arm from his side to his stomach and back again.  I was so excited and astounded.  I told him to do it again and he did, several times.  I was in tears.  It is real functional movement.  We are on our way!

And so we pray:

Most Merciful God, we give You thanks and praise for Doug's continued improvement.  We are so thankful for the many caregivers here at Vibra. We are thankful for their gentle care and concern. We are thankful for the medical treatment that is healing Doug.  Be with us now as we prepare for another change.  Fill us with hope and grant us peace as we anticipate this move.

February 1, 2017, Day +74

I guess I am back to counting the days.  Today was my first day back at work, Doug's 56th day in the hospital and it has been 74 days since Doug's stem cell transplant.  Each day means different things.
Going back to work today, means that Doug is well enough for me leave him some of the time.  It means he is healing.  Since this is Doug's 56th day in the hospital it also means that he still has some significant needs that can't be resolved at home. Counting the days since Doug's transplant is hope. We still believe that there is a very good chance that the progression of his MS has been stopped and that he will walk again.


Lots of people have asked about the other patients that went through the stem cell transplant with Doug.  I am happy to report that they are all doing well.  Most people never have the difficulties that Doug has been having.  From the research we have done, we have learned that from 1-3 percent of patients receiving HSCT may develop pre-engraphment syndrome.  When this happens, the body develops an inflammatory response to the new immune system.  Since Doug did not test positive for bacterial, viral or fungal infections, we are led to believe he had an inflammatory response.

He currently has been diagnosed with critical care neuropathy or poly myopathy .  It occurs in about 60% of patients who are on a ventilator for more than 7 days.  It is more likely when a patient has multiple organ failure and has an underlying disease or condition, like Doug's multiple sclerosis. He had multiple organ failure in the hospital, with the acute respiratory distress, heart attack and kidney failure. Also when he was most ill he had elevated blood sugar levels and was sometimes atrial fabrillation. He was very, very sick.  The doctors said if he survived it would take months to recover.  And so we are now 36 days since extubation and over a month into recovery.

So how can I return to work?  Because we are now into recovery. Doug will do well to have the stimulation of others in his life and I will do well to have some normalcy return to our life.  During these last few months I have been blessed to have a wonderful team holding things together in our Student Support Team.  I am so grateful for all who have come to our aid. I am especially grateful for Earnie Lewis who stepped in for me these past months and his willingness to help again if we need him. Thank you so much Earnie!  I should have taken pictures of the rest of our District team today, but I was not thinking.  They have all been a part of the journey.

Earnie Lewis

And tonight thank you to our friends Vicki and Rylene. They stayed with Doug today to keep him company and to help with the things he needed.  We are both so grateful for their generous support and kindness.  I was able to be at work today without having any worries about Doug.  I knew he was in good hands.  Bless you my friends.

And as for me, my knee continues to heal.  It is still a little swollen, stiff and sore but very manageable.  I go back to the doctor on Monday.  I suspect he will recommend physical therapy, but we will see.  I appreciate every one's thoughtfulness and prayers. I have been comforted by so many.

And so we pray:

Holy and gracious God, God of Light and Love, God of Hope and Expectation,  we give thanks for each of our days: for the days of struggle, for the days of hope and for the days of progress.  We give you thanks for the travelers on this journey with us who lighten our load and lessen our burdens. We give you thanks for true friends.  Be with us in the days to come as we live into the expectation of wholeness and healing.  Give us courage and hope in our struggles.  In your name we ask it.  Amen