Day 57 Clinic Report

I can hardly keep the feeder outside our window stocked.  The little guys eat more than Roger does!

Finally, it seems we've turned the corner on the weight loss.  I'm happy to report 1/3 of a pound weight gain!

Roger's diet includes enough variety now that I am less inclined to worry about his nutritional needs.  He still finds many foods unappealing, so cooking for him is a pain in the neck.  I spend several hours a day in pursuit of edibles.  We experiment with different foods and we end up throwing out a lot of uneaten leftovers.  Every day, though, we get better at figuring out what he can tolerate and he is more able to tolerate more foods.

He still relies on magnesium delivered via IV, along with 1500 mls of water every day.  He can't eat enough and drink enough to sustain himself, so it was always a tough choice to make.  The IV fluids will keep him hydrated until he can do both.  Now that we've broadened our minds to the idea of having an IV pole in our living room, and we've mastered the cursed thing, it's a strategy that works. We've been told this lovely item is ours to keep -- as a consolation prize for this misadventure?  Imagine how thrilled I was to hear that.  An IV pole of our very own!  Perhaps when he's finishing with it, we can add an umbrella to the top and use it as a portable shade tree for the summer months.

Roger's blood counts remain strong and his energy is increasing daily.  He's able to help out with small household chores a bit now.  He unloads the dishwasher and folds laundry and sometimes even helps bring in groceries from the car.  Although I still make him carry his cell phone when he goes out for a walk, I don't worry too much. He walks with a more confident step and is able to walk for 30-40 minutes before needing a rest.  His vision is gradually clearing.  Although it may not come all the way back to the excellent vision he had before the transplant, corrective lenses should solve any lasting problems.  He still naps occasionally, but is not prone to doze off many times a day as he was just two weeks ago.

Although I feel more confident when I'm out running an errand that he'll be okay for an hour or so until I can get home again, I would not leave him on his own for an entire day. But I can see it in our future.  The day will surely come when I realize I don't need to be with him 24/7.

Roger is happy about his increased energy, certainly, but he's disappointed that his hair doesn't show any signs of growing back!  I tell him that his body is smarter than he is.  It prioritizes how to spend it's limited energy.  Hair is low on the list, as it's optional and purely decorative.

Despite all the good news, the medical appointments are on the increase.  Roger has developed a growth on a lymph node in his neck.  It could be any one of a dozen things, so we're not wasting much energy speculating about what caused it just now.  Whatever it is, it will need to be surgically removed.  So we're busy seeing other specialists, having CT scans and who knows what all.

You can NOT believe how many times I've filled out essentially the same forms and answered all the same questions.  Even though the specialists are within the same system, they don't seem to share information.

My complaining is purely recreational.  When I can relax enough to use the words "Roger" and "pain in the neck" in the same sentence, you know things are going pretty well.  Life slowly, ever so slowly, returns to normal.

--Candi