Christmas at Home and Normal Life

There's really nothing new to report, but I thought I would at least let you know that Allison is doing just fine!  We spent Christmas at home, since it is challenging to travel and hang around family groups without exchanging germs.  We felt a little lonely once in a while, but for the most part we relaxed and enjoyed some slow, quiet days together without the schedule of work and school and program practice.  Alli is completely off of Prednisone now, as of November 29, 2018! That was a day to celebrate!  When she could stop Prednisone, she also was able to stop taking Nystatin and Zantac (or Prilosec) so we dropped down to 6 medicines a day (including her prescribed multi-vitamin.)  Valgancyclovir was stopped sometime in October.  Her Tacro levels have bounced around some so labs were still pretty frequent (once a week) until they leveled out.  Finally, finally, after some micro adjustments, they are looking good, so they gave us a two week break.  We took her in this morning to get a Tacro level, as well as a complete liver panel since she just recently went off Prednisone.  Labs have not been getting easier as we had hoped, but rather they've actually been harder, taking at least 2 and sometimes 3 or 4 tries before they can get a good stick.  She (and we) are so tired of it but we keep holding onto hope that soon soon they will space the orders out and start giving her veins a break.  When we got in there, Austin and I looked at each other and said, "What are we doing today?  Shall we call it if they can't get it on the second try?"  Agreed and done.  Our "favorites" weren't there (not to slam the others but the experts on tough veins already know their place with us) and we weren't willing to let them keep digging around to try to catch a little blood.  They were very nice about it and we told them it was our decision to call Children's and let them know it was happening this week and if they felt it was necessary to have labs immediately we would drive to Denver for it.  It is a bit defeating to walk out after being poked twice and not having success, but since they had already skipped trying in her arms and had gone straight to her hand, where they always end up after digging around in her arms a couple times first, we said no more!  I called Lauren after we got home and she said it was completely fine to wait until Alli's appointment on January 28 for labs again, unless something comes up to make us concerned.  We were all delighted with that plan!  Over the weeks since she quit taking Prednisone, she has really slimmed down and her face has narrowed a lot.  Chubby cheeks are cute and everything, but you can have too much of a good thing!  She looks so much more natural now...and dresses and jackets fit so much better! Bactrim is expected to be taken out of her diet at that appointment, along with Aspirin so she will be down to only Tacro, Cellcept, and Ursodiol (until the stent passes or can be removed.) Cellcept can be stopped one year post-transplant. So...for now we get "normal" again for a while.  But really, life is very normal for us...just a new normal, I guess.  We have so much to be thankful for and we have adjusted to living a germophobic lifestyle.  Some of us will probably never look at food and cooking and social events the same again, but maybe that's not all bad either. ???? Wishing you all a year of contentment and quiet joys in 2019.  We wish for a year of not much excitement...only simple joys and pleasures and quiet happiness. ???? But...we'll try to accept whatever comes our way...for after all, God knows best.


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