Crabby, Steroid Baby

We made it home safe and sound last Saturday.  Shayna is getting to be a much better road-tripper. She slept for a full hour in the car and didn't complain while falling asleep or waking up (a first for post-transplant trips).  We spent most of the drive home either playing "what's on your head" where Shayna puts various things on her head and hoots at me to wonder where they went (she can't see them) then show great enthusiasm when she pulls it off to show it to me in the review mirror or dancing to Lady Gaga or Miley Cyrus.  (We now listen to both daily as she likes to dance; though, I have order a couple new cds so we can have a little variety.)  She also chilled out and ate snacks I passed her.

We had labs in Pittsburgh last Friday that showed a slight decrease in liver numbers but they didn't change this week after 5 days of prednisone (steroid to suppress her immune system) and a slight Prograf in increase (normal/lifetime drug for suppressing the immune system) so we doubled the prednisone dose to 10mg a day.  She was already a bit crabby with the 5mg as she squawks in her high-pitched, ear-splitting screech much more readily these days.  We'll run labs again next Friday and start her prednisone wean too.  As long as the EBV doesn't skirocket, it'll probably be a 6-8 week weaning process.

Speaking of weaning, we're weaning from nursing.  Shayna is taking it much better than I am and we've only gone from 6 to 4 sessions a day so far (before and after each bed time).  She gets thawed breast milk in her sippy cup during the day so we might have room for food in the freezer again in a couple months.  (She also takes cow's milk and water.)

This week's milestones are first steps and climbing stairs.  She took her first unassisted steps on Tuesday April 20.  The most she's done to date is 3 before grabbing something or falling and she doesn't like walking on her own either.  She gets psyched out easily with both standing or walking alone so complains when we let go of her (unless she's playing "standing baby").  She finally figured out what to do with stairs so we use that for physical therapy.  Stair climbing combines coordination, balance and strength.

These are the back deck stairs and the rock works as motivation because she's climbing to reach a goal.

I've posted some new videos on youtube this week for Shayna's adoring fans.