Hover Girls

Things are very quiet in the villa today with only Ron and me here. I didn't have much energy and couldn't bring myself to finish putting the legos and other toys away. We have had a great time the past few days with Lisa (Andrew), Abby, and sweet baby Lily visiting from Germany. Kate, William, Anna, and Sarah have also made a return trip to Ohio and Michigan after their move from Tampa to Springfield, Virginia. Cale and his family live here in BG. (Jessica, Joey, Jack, and Allison) 8 of the 9 grandchildren together is a special treat for us! Niccole and Cole visited earlier this summer.

Lily Hover Baptism

Lily Hover is a sweet, happy baby; it is hard to believe that she is 7 months old already! The group picture is of the Wojo grandchildren and grandparents. I have no idea why I didn't suggest a Hover picture! Cale, Jess, Joey, Jack, and Allison were there too! For those of you who might not know, Andrew is deployed to Kuwait, so Lisa and the girls are here for a visit before school starts. A party at Lisa's parents' home followed the baptism. It was enjoyable to get together with family and family friends.

A Busy 7 Days

Ron had his bloodwork done, had an appointment with his bone marrow transplant doc and PA, had two ECP treatments, had a CT chest scan, pulmonary function test, and appointment with his pulmonary doctor. Tomorrow he will have his immunity infusion. His health issues are pretty much stable at this point, so a decision was made to taper his prednisone slightly. He has been on steroids for almost 3 years now.
His pulmonary tests show that his lungs work about one-third of what would be expected for his age. He always has some congestion, so he is going to have a new device for at home treatment to help him clear his lungs more effectively. The pulmonary doctors were also concerned about his teeth which at this time are mostly broken off and decayed. They wanted him to see a dentist-doctor specialist, but Ron told them no at this time. When she looked at his teeth, he had a Jolly Rancher in his mouth. He still loves his candy!
I am glad that we are trying to taper the steroids. Ron's skin is very thin and tears easily. I am almost an expert at treating and bandaging skin tears. So we are cruising at the same level right now. Ron continues with his physical therapy but will probably continue to depend on his walker for stability.
I am trying to feel content that we are not in a crisis.

Summer Vacation

I guess I have been on vacation from the blog! We are back in BG for an Ann Arbor week. Things have been stable, so it is probably about time to make another meds decision. Ron has been on the same dose of prednisone since February. We will see Dr.Mag on Wednesday and the pulmonary doc on Monday, so we may or may not have new information. Ron also will have his next two ECP treatments. He has PT this week in BG. He walks mostly with the walker but some with the cane; we are being cautious.
Had a great time reconnecting with some of my cousins at a breakfast on Sunday. We shared stories and pictures, and I can hardly wait for more of that. I have 26 first cousins on my Dad's side of the family, but many of my cousins' children are closer to my age. There are several sets of twins on that branch of the family tree. The next set of twins is due to arrive in September.
Things have been quite hectic since May, so a good rule of thumb for me is if I can concentrate to read a book. Finally! I read a good book last week: Saving CeeCee Honeycutt. Parts were funny, but the message to me was more of freeing and lifting yourself out of a situation where you have no control. That book was one of those that can be many different things to different people. I recommend it!
The black cloud of deployment is back with me. Andrew has deployed as a member of an airborne Forward Surgical Team. As I recently read, "For those who have been there, no explanation is necessary. For those who have not, no explanation is possible." A friend told me that that is true not only of soldiers but also parents of soldiers. It truly is like a lingering cloud that can shade everything else.
Ron and I will soon be meeting our 9th grandchild, Lily Hover, who was born New Year's Day in Germany. Lisa, Abby 7 years old, and Lily almost 7 months old are flying home for 3 weeks to BG. Lisa's parents live in BG too. Kudos to Lisa for being an amazing Army wife! There are many sacrifices that go hand in hand with the extraordinary life experiences of military family members.
Love to all,
Ron & Jan

Check, check, check

Washer, dryer, refrigerator, dishwasher, miscellaneous household items--check! Things are quite well set up in our Bowling Green condo, and we have made Ann Arbor trips on four days from here. The plan is working well. The trip is consistently 65 minutes. Ron is doing pretty well in his recovery from May's flu, pneumonia, and fall. He is walking some without the walker but does use his cane. He has PT at the hospital here in BG during the weeks we are here. He has a chronic cough due to permanent lung issues, and because he has been on steroids so long, he has deconditioning of muscles and frequent bruising.
Mentally his deficit is in executive functioning....the mental task related to help planning, organizing, paying attention to and remembering details, and managing time and space. This is a permanent change in addition to some quirky behaviors and personality change...yet much is the same too. He continues to be a complex man.
Ron's immunity was checked this week with an IGG bloodtest, and he does not need his next IVIG infusion yet. That was a change in his trend, so we are hopeful that he might be starting to get more immune support from his bone marrow.
It has been quite awhile since I have felt like we are back to just "grinding". I will take that!
The caregiving service is working out well. She comes on Monday and Friday afternoons, and I run errands and have time to do some socializing too. Looking forward to more of that!

Happy 4th of July

Thanks to all who have come before us to make the American life style possible! And thanks to all serving now who sustain our way of life. We are so very grateful.

Peaceful Gilead Shores Drive...

What is it about being by the water? When we first arrived Saturday, all I could see was yard work that I needed to do! Trimming mostly, but I enjoy that, and it felt really good to ride the yard tractor and break a sweat doing some outside work. Good for the soul; my mood went from bittersweetness to peaceful. Matt is here at Wee Cottage, and the rest of the family returns tomorrow. Niccole and Cole will travel tomorrow…hoping they will arrive to watch part of the World Cup game with us. Go USA!!
Today I am doing some indoor work, too, and have promised myself an afternoon nap. Ron's eye is improving. The swelling is gone, and the redness is fading. It was a doozie. Both of us are settling in to enjoy what the next few days bring.
Love, Ron & Jan

Our Plan

I think our plan is coming together! It looks like our weeks in BG will also be our timeframe for all appointments. Hopefully, I won't need more orthopedic appointments, but any physical therapy for Ron and me will be scheduled here in Bowling Green. My future dentist appointments, car servicing, etc. will be done here in Ohio. Then when we are at the lake, it will be a vacation from all of that driving and appointments.
Ron has speech evaluation tomorrow to help with thought processing. I am on the fence about doing that until I see what that means and what his needs are. Then I have caregiving time in the afternoon and our new dishwasher is supposed to be installed.
ECP light treatments had a glitch this week. Ron bruises easily due to being on steroids so long. His skin is thin and tears easily. Along the same line, coughing can cause eye bleeds which happens occasionally. He developed an eye bleed in his right eye..the one that has vision, so after being seen by 2 at Mott, instead of ECP on Wednesday we spent two hours in Kellogg Eye Center in AA. We did not get back to the condo until 8:30 last night and had to leave at 6:45 this morning for a treatment as he had been cleared to do so. He did see his regular eye doc, and of course, ECP nurse and PA did not want to make the final call because risking vision in that eye too would be horrible. Along the way in Kellogg he bumped his hand, and we had a new skin tear to deal with. All is under control now. It felt wonderful to get back to BG; it is a 65 minute trip. I loved not having to pack but learned to always carry at least a day's worth of meds with us and his first aid kit..beyond just bandaids. We probably would have bought tooth brushes and stayed at the Hampton and just slept in our clothes, but I didn't bring meds. Some of the things I've done I could not have imagined before...like going to the orthopedic doc last week in my bedclothes!
Rambling,
Jan

Abby's Sunflower: Summer 2013

I have planted seeds from Abby's sunflower at Gilead Lake and will plant some here in BG tomorrow.

An Eventful Week

I hardly know where to begin. I went back and read my last blog entry to see where I had left off. Cale had set up some services to help us, and Dr. Mag had given us the required referrals at Ron's last appointment. We now have a "helper" from Home Instead two afternoons a week 1-5 PM. We also have a case study nurse locally for palliative care as needed-- a good resource when issues change or arise.
My good knee became my bad knee as the week progressed due to overdoing during the move and condo set up. By Tuesday evening, I could not bear weight on it so texted friend Jim in the middle of the night requesting his crutches Wednesday morning. He dropped them off early, so I could get around. Doc Wojo made arrangements for me to see an orthopedic doctor that morning. Ron and I are quite the pair! He used his walker, and I crutched into the doc office. After RICE rest, ice, compression, elevation, and a shot of cortisone in my knee, both knees are pretty much normal again. Neighbors and friends have helped us with various things, and when our refrigerator, washer, and dryer are delivered tomorrow, things will definitely be under control. I continued to shop for things we needed but went mostly to Meijer where I could drive a cart and continue to rest my knee. Today I am crutch and cane-free. New appreciation for Ron and others who have to use any device to help walk.
Having help a couple afternoons a week is liberating. Primarily she makes sure Ron stays safe and does light housework. On Wednesday after my doc appointment for my knee, I went to bed to ice and elevate, and she fixed me lunch in bed and cleaned while I napped! On Friday when she was here, I set up PT for BOTH of us at the local hospital, ran errands, and ran into Liz, the teacher who taught next door to me at Kenwood. It was wonderful to visit with her...in the McDonalds parking lot where we both had gone to pick up coffee! This weekend has gone by quickly as I have had time to sleep more (guess that is why I am still awake tonight) and do little things around the home. I am looking forward to spending some time pulling weeds in the landscaping that is beautifully done. I hope it is not too late to plant sunflower seeds from the big sunflower that Abby gave me to grow last year. It grew from 6 inches to way over six or seven feet high!
I am content here and looking forward to connecting with more friends during the weeks we live in BG. It is okay to visit us! --in fact, the WELCOME mat is out!
Love, Ron & Jan

"Our Pond" - View from Kitchen Nook

In the picture below of the entrance to Cogan's Crossing, our home-villa-condo is in the background.

Home Sweet Home BG - A Good Move

We spent our first night back in Bowling Green! The move went smoothly; Gary and Vicki arrived at the Villa before we did in case Directv came at noon, and they also brought a carload of belongings which they had put away. The movers started to unload about 12:30, and we arrived 15 minutes later. Perfect! Ron was soon resting in his recliner, and I watched Vicki work on the kitchen from my chair. Anne and George are bringing our wall pictures and a few other things on Thursday. By then I hope to have a washer, dryer, and refrigerator!
It is a peaceful setting here. There is a large pond with fountain outside our slider in the kitchen nook.

Crazy Busy

May has been true to form as an extremely busy time, even in retirement! We are looking forward to spending time in BG in our new condo, but it has been a challenge to make all arrangements and pack, etc. The plan is coming together. My sibs and spouses have helped with packing and are helping with the move at both houses.

Condo Pictures from Early May

June, oh, my!!

I have been on information overload this week. We have realized that we are at a transition point in Ron's care, so Cale met us in Ann Arbor on Wednesday and Friday to help with Ron's appointments with his transplant doctor, Dr. Mag, and a new Physical Medicine and Rehab doc, Dr. Smith. (Cale was surprised how young both of them look.) Ron will have another head MRI June 9, and then we may or may not have new information from his neurologist. Ron also has a pulmonary doc and an eye doc in Ann Arbor. As has been the case in the past, after a hospitalization for pneumonia, he loses some ground physically and cognitively. He doesn't seem to go back to where he was before the hospital stay. The difference this time though is that he is breathing much better and says he feels better than he has in weeks. The parainfluenza type 3 was hard on him. The non-Ron behaviors continue with new ones occurring.
During the last two weeks at the lake before heading to our condo, Ron will have at-home PT and check ups by a nurse. Dr. Smith wrote scripts for out patient PT and speech (to work on thought process) which we will start in BG if Ron wants to. He has started to show some displeasure with all of the many appointments and doctors.
May was very busy with looking at and buying a condo, selling Ron's truck, starting to pack things to move to the condo, 6 days in the hospital, appointments for Ron on 5 other days, yardwork begging me to get outside, arrangements for dock and pontoon and movers, etc. lots of mental exercise for me!! Thank heaven for email of documents and electronic signatures!
I have planted some flowers by the house as well as 5 tomato plants. We are mowing over my garden area behind the garage, except for the flowers that I have out there. I have known all winter and spring that a garden would not be possible and can accept that change.
Love to all of you,
Jan

Back home at Gilead Lake

Ron needed oxygen for a few hours Saturday afternoon, so we couldn't come home until Monday afternoon. After reviewing everything, the doc thought the IV antibiotics were the best treatment, so I am giving him cefapime IVs every 8 hours. I have done this several times before, and I use his central line.
A nurse has come to our home twice and a PT once. The PT thinks that I should write a book. We will be back in AA 3 days next week. Physical Medicine is going to evaluate him for more intensive rehab.
It is exhausting to be in the hospital 6 days. Then you are hyped up to be home and do too much the first day. I am catching up some with naps and into the routine of new care for Ron. He has improved some the last two days.
Niccole surprised us by arriving on Thursday for the long weekend. I have put her right to work!
I am working on making the arrangements for a moving company to transport some of our belongings to the condo in BG in mid June. The condo will give us more options for where we go from here. Lots of unknowns.
Love,
Jan

Getting answers, making progress

Ron's lab cultures have grown a viral and bacterial "issue". He had parainfluenza type 3 which contributed to the pneumonia developing. The sputum sample has pseudomonas which is an antibiotic resistant bacteria. To treat the respiratory flu, he had an infusion of antibodies-- the one from 1000 donors. Thank you blood donors!! There is not a specific antiviral med for this type of flu.
For the pseudomonas, they have put him back on IV cefapime which is an antibiotic that must be given in the hospital. The bacteria culture is now being tested to see which antibiotic in pill form will best treat it; that result should be back today, so now they are saying he can probably go home Sunday afternoon. His coughing and breathing are much improved. The rapid heart rate, croupy cough, pneumonia and low oxygen saturation were complications of the type 3 flu. He has not needed oxygen the last 2 days.
We will need to come back to AA for ECP light treatments next week. He can't have them when sick because they alter the immune system. The balancing act continues. I will feel okay about going home Sunday, especially since he will be checked next week. He does not complain of rib pain but does take an oxy at night to make sleeping easier. He has not had a fever at all during this illness. Very stoic as you might imagine. Me, too; I guess or maybe getting somewhat numb to all of this.

Quick Update from AA

On Tuesday afternoon we arrived in AA after the closing on our condo in Bowling Green, Ohio. Within a half an hour, a storm blew in with 65 mph winds. That night breathing difficulties which had been escalating worsened. Early in the morning Ron fell off the curb in a parking lot; two men helped me get him up to a picnic table. He refused to go to the hospital until his scheduled appointment at noon. He was admitted because of the fall and his need for oxygen.
Ron has been undergoing testing, and he has pneumonia again and broke four ribs in the fall, so he is taking IV antibiotics and has responded quickly to treatment. He really does not complain of pain from the rib fractures even though there is some displacement. He rarely mentions any discomfort except for skin itching.
So we will be at Mott Hospital where the bone marrow transplant clinics and in-patient hospital for BMT patients - adult and pediatric- are located. Ron will be a patient here for a few more days.

Change

We have been making some changes. Today we sold Ron's truck because for some time he has not been able to drive. He did some "country driving" last summer which was questionable due to his poor vision and reaction time. Also, I know that we will continue to need more assistance with Ron's care and will continue to make trips to Ann Arbor for treatments every other week. I have adjusted to just letting some things go. Ron gets frustrated with my over-mothering. Usually, I let him choose his clothes, decide when to shave, give less comments and direction concerning clutter around his chair, food on his clothes, etc.
On Tuesday we will be closing on a condo in Bowling Green. We will be able to make day trips to his appointments and stay at the condo. It will be wonderful to see Cale's family much more and lean on our Bowling Green friends. We are keeping our lake house in Michigan; we are closer to our siblings here and are in the area where we grew up. Time wise, we will probably be at the lake more days during the warmer months. We will stay in BG during AA weeks and in the winter.
I had my first physical therapy session today, and my recovery is going very well. I expect my knee to be "totally normal" by the end of May.
Put grape jelly out today because I had seen an oriole. Amazing! They love it and such a special sight to see! I finally put out my hummingbird feeder and am waiting patiently. We have numerous yellow finches coming to our feeders, too. Loving nature's surprises...the two deer I have seen frequently were behind our garage today. Very pleased that the pump and well I had drained and winterized on the garage side of the road is working again. I held my breath as I turned it on!

To Honor Ron...

a Relay for Life photo sent by Gregg and Darlene