Our Mexican Camino: Ending MS and Finding New Life: April 6, 2017: Day 136

Thursday, April 6, 2017

April 6, 2017: Day 136

Jared, Doug's RN from Multicare, signing papers to begin services.

Okay, first full day home and it was a full day. Maybe you remember when you first brought home your new baby and everything in your life changes. You are trying to figure out a schedule, how to use the baby's stuff, equipment, etc. That is how it felt today. Using the Hoyer on carpet was really hard. I did not know that until I had Doug in it. Things people did in the hospital with two people I am trying to figure out how to do myself. Oh boy....

Jared our new case manager and RN from Multicare came at 10:00 this morning. He reviewed all of Doug's medical information, took vitals, set-up a plan and had us sign lots of paperwork. We liked him. I think he will be a good fit for us. He will be out weekly. He left about 12:30.

At 1:00 Jenny from Allegiant Home Care came with provider De. De will be coming in 2 mornings a week to get Doug up, get him dressed and get him breakfast. Like Jared, I showed them around the house, showed them our equipment and showed them where everything is located. We did all the paperwork and they got to know Doug a little bit. Everything went very well and I feel good about them serving Doug.

While they were here, Loretta, Mark and their friend showed up to do some spring yard clean-up. It finally feels like we are making some progress and that things are coming together in everyway. It was really nice to walk out the front door and have the grass mowed and the old branches and dead plants cleaned up. It is nice to be home and have the time to look around.

Unlike a regular schedule at the hospital, nothing happened in a regular fashion today. The morning routine took us so long that we were just getting ready to have breakfast at 10:00 when Jared got here. Doug had asked for cinnamon or orange rolls. The rolls were not ready at 10:00, but at least we had something to serve our guest! Because Jenny arrived shortly after Jared we did not get lunch until 2:30. Doug was more than happy to eat the left overs (fried chicken) that Tom brought us last night. Which means dinner did not happen until 7:30. I will try to do better tomorrow!

Best of all, we both got a nap this afternoon; a long nap. This is the first real nap I have had in so long and it was a nap that I was not worrying about getting back to the hospital to see Doug. Guilt free. I laid down on the bed and fell sound to sleep. I have a feeling I have been so sleep deprived over the last few months that it may take a while to catch-up.

Reviewing the day, after all the difficulties of the last few months, I am thankful that all the pieces are falling into place for Doug's caregivers. One way or another we will figure out a routine. His new OT and PT will be here tomorrow to evaluate him and come up with a plan for home. My big worry is that he will not get enough therapy to continue to make progress. Our friend Will said that he will be able to come out and help on the days that the therapists are not here. This is reassuring! The therapists will start with 3 days a week and may drop back to 2 days a week. We will see.

Finally, thank you to everyone who has commented on the blog and sent us your well wishes. You all bring us hope and strength as we travel on this journey. We are so pleased to be able to celebrate coming home with all who are journeying with us.

Time to pray:

God of New Beginnings, so much of our lives, both Doug and I have thrived on change and new starts. Somehow the changes and new beginnings have become much harder. Give us patience in the face of so much change. Help us to lean in

to these changes. Help us to trust in our capacity to meet these new challenges. Sustain our trust in your goodness and in Doug's continued healing. In your name we ask it. Amen

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About Doug

Fr. Doug Yarbrough was diagnosed with Multiple Sclerosis in 2008. Although judging from his MRI scans he probably had it for many years prior to his diagnosis. Since the diagnosis he has experienced continuous progression of the disease resulting in more and more disability.

Today he is dependent on an electric wheelchair to get around outside of his home. At home he uses a walker to walk short distances. His eyes loose focus easily and he cannot read. This is difficult for someone who has always been a voracious reader and life long learner. He experiences extreme fatigue. Most days it is all he can do to just take care of his own personal needs. We are grateful he can do that and fear the day that he will loose these skills. But with the progression of this disease that day may not be far off.

This is not the person Fr. Doug has always been. Many will remember him as an active member of his family, church, community and state. He is an ordained priest in the Episcopal Church. As a priest and community leader he has been a passionate crusader working on behalf of the poor, the abused, the homeless and minorities. He has been a husband, a father and a grandfather. He has always been the person who helps others.

Fr. Doug is a learner and believes in education to serve the common good. He has a B.A. in Education and Philosophy, a Master's in Counseling and a Master's in Religion. He has a doctorate in Educational Psychology. His education nurtured his thirst for learning, to make God known to the world and to serve others in the example of Christ. His favorite Bible passage is from Micah 6:8. In the New English Language Version of the Bible it reads "He has told you, O man, what is good; and what does the LORD require of you but to do justice, and to love kindness, and to walk humbly with your God?" These words have framed his work in the church and the world.

In 2005 he was awarded the Canyon County Humanitarian Award for his contributions, care and concern for the most needy and marginalized people in Canyon County. He chaired the Nampa Shelter Coalition board and was on this board for many years. He also served for many years on the Nampa Family Justice Center and the Idaho State Domestic Violence Boards. He founded the Open Arms Baby Boutique in Nampa. This is a resource center for low-income women. The women earn points for prenatal and postnatal check-ups. They may then trade the points in for diapers, baby clothes, furniture, etc. He was on the "Success by Six" Treasure Valley committee. Fr. Doug served on the Mercy Hospital Ethics Board. All this he did while pastoring a church and serving on many church boards and committees.

After many years of service, Fr. Doug is now in need of your help. He is in the fight of his life to stop the progression of this horribly debilitating disease. Up until now, there has been little hope, but upon returning from a pilgrimage of prayer for healing we learned of a new stem cell treatment that some are calling a cure. This treatment is HSCT (Hematopoietic Stem Cell Transplant). Using this treatment the patient's own stem cells are harvested, then the patient's immune system is killed using chemotherapy and then the patient's own stem cells are transplanted back into their body. It works similarly to a reboot of a computer. The immune system is being rebooted. This treatment is in Clinical Trials in the United States, but in other places in the world it is being used as a treatment for MS. Worldwide data shows that more than 80% of MS patients receiving this treatment see an end to the progression of the disease and many see a reversal in disability. The brain is able to heal from the bodies own attacks on the myelin insulating sheath around that surrounds nerve fibers

Unfortunately HSCT treatment is expensive and not yet covered by insurance. To get this treatment he will have to travel outside of the country. To help pay for this treatment family and friends of Father Doug are raising money to help pay for uninsured medical expenses associated with HSCT (HEMATOPOIETIC STEM CELL TRANSPLANT) to halt the progression of his Multiple Sclerosis. We don’t have time to wait for Clinical Trials in the US. Fr. Doug is rapidly progressing in disability from this disease. We have to act now if we are to save and hopefully improve the quality of Fr. Doug’s life. We have a goal of October 15, 2016 to raise all the money needed. This is the earliest possible date that the treatment may be available.

Fr. Doug has chosen to fund-raise with HelpHOPELive in part because HelpHOPELive assures fiscal accountability of funds raised and tax deductibility for donors. Donors can be sure that funds donated will be used only to pay for unreimbursed medically related expenses. To make a tax-deductible donation to this fundraising campaign, click on the Donate Now button.

For more information, please contact HelpHOPELive at 800.642.8399.

Thank you and God Bless you for your help!

Thursday, April 6, 2017

April 6, 2017: Day 136

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