Everything's up.

The results from Monday's EBV test and Thursday's regular prograf-dose-changed draw weren't so hot, but I don't know enough to understand the implications.  The 3 liver numbers we watch all jumped from Monday to Thursday indicating she's gone back into rejection and the EBV was slightly up too.  With Monday's prograf increase we're now dumping on a Prednisone increase.  No IV but we are going from 2.5mg/day to 10mg.  I've got a lot of questions for the doc on Monday.  Does this delay going home?  Do we have to start the Prednisone weaning process from the top?  When do the EBV levels get concerning enough to risk rejection by lowering the anti-rejection meds?  How long might we be on this teeter-tauter?  Luckily we've got an awesome doc at home who used to be the head of transplant in Atlanta so we probably can deal with a lot of this at home.  But do the local labs have the ability to run the tests Childrens run (they're pretty specialized tests)?  As Kate just pointed out, at least the prednisone will make her eat more (steroids increase your appetite).

Shayna's still being incredible.  She pulls herself up like a pro when you grab her hands.  In fact people have so much fun with that that she doesn't get as much tummy time as she should.  I was working on some tt yesterday and she can slither across the floor a few inches.  I set my cell phone about a foot from her so she spent some time with her head raise contemplating it.  She then lays her head down gives a push with one of her feet, lifts her head and reaches for the phone to see if she can get it yet.  She did this a few times, mixed with rolling to her back for a perspective change and to check out another toy within reach a couple times, before she finally reached the phone.  She reached a strength milestone yesterday too.  She can now be on her hands and knees at the same time; before, if one end was up the other went down.

Update: I just talked with Shayna's nurse coordinator and  she said we'll still be able to go home in 2 weeks because they can monitor everything from Roanoke.  Yay!!  (As long as things don't get worse that is.)

No tears!

Today's lab and clinic morning was monumental.  Shayna didn't scream, cry or protest when I laid her on the lab-draw bench, when the nurse put the tourniquet on, when Shayna watched the needle go in, or anytime during the whole 4-vial blood draw experience.  As her usual routine is to scream like a banshee the moment I set her down, this was phenomenal.  The meeting with the doctor and nurses was informative.  We were told we could go home in two weeks as long as Shayna gains weight and her liver numbers stay down.  Then I had a great talk with the dietitian who has instructed me to put butter or olive oil on just about everything Shayna eats to make sure every mouthful is packed with calories.  Now all I have to do is actually get her to eat the food.  Her belly continues to shrink and her legs and arms get bigger and stronger but they don't measure those things, only the number on the scale.  That number is getting bigger slowly, but they'd like to see more (and so would we); however, I think the bigger picture needs to be looked at with actual fat measurements being taken on legs, arms, etc since she's still working on getting rid of and not producing any more belly fluid.

The results of last Tuesday's EBV blood draw was good and bad.  Her EBV numbers went down but her liver numbers when up.  It's quite a delicate dance they have to do, giving Shayna's immune system enough leeway to keep the EBV in check but not too much to avoid rejection of Aba's liver.  The tentative good news this week is that, without any med manipulation last week, her liver numbers went back down.  We have to wait until Wed/Thur for the EBV results, but as they had dropped significantly last week and now changes were made, should be down still.

Carole (my birth mom) got to the apartment at 3:30am from Vegas (she lives in Death Valley).  She'll be staying for the week, helping out and just keeping us company.  Shayna is loving the extra person to dote on her and Carole inspired me to go for my first outdoor run today (I found a cool trail too; wish I were in better shape so I could explore more).  While I jogged, Carole walked so we both got out during the 1 hour of sunshine we got today (more snow for the rest of the week).   We went to Trader Joe's today.  A nice tourist destination but not a place I will shop frequently as there is much more prepared food than I need and not enough plain food.  (The cheese/dairy section was great though.)

 

Plans for the week include an adult dinner with Carole, Nahum, and I at a Thai place, walks with Grandma Carole and more jogs for me, begin collecting tax paper work (new baby and medical stuff this year), and make arrangements for getting us and all our gear back to Blacksburg the weekend of February 14th.