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.