“A ray of hope there still may be…” (Sleeping Beauty)

The last couple days have been relatively peaceful.   Bernadette showed interest in more things than just her iPad and watching movies.  Her dear friend Wilma gave her a sticker craft for Christmas and on New Years Eve there were all four of us (Johanna, Catherine, Bernadette, and myself) each doing one of them but all together.  We pulled out the folding table and put it right across her bed.  It was a lot of fun.  Bernadette and I finished the last three together New Year’s day.  They now grace the wall above the fireplace with glittering bright colors.    Marc said he liked the shooting star the best – even before finding out Bernadette did that one.  Naturally she was happy he liked hers best.   We also worked on a puzzle and checked out the Barbie accessories she got in her stocking.  Oh, and you’ll be happy to know there is hope for me yet when it comes to her electronic games.  Today I was able to defeat the red-eyed snakes in the Mythology Island Poptropica game – with no problem I might add!  I was also able to help her figure out which Greek gods and goddesses she needed to know.  Don’t worry though, Johanna, you have all the job security when it comes to being her electronic rescuer.  I’m NOT gunning for your job.

The other night Bernadette kept Joseph company from 2:00am all the way to about 6:00am.  Gave Joseph enough time to build a second Lego castle for her.  🙂   She was awake again for a few hours in the late morning (New Years day) but then proceeded to sleep again until almost 8:00pm I think it was.  I was getting worried I wouldn’t get any time with her yesterday and that she’d keep Joseph extra hopping last night.  But she didn’t, she slept most of the night too.  Which brings us to today which was a busy day.  She had a bit of a rougher day and had a hard time finding a comfortable position as she’s all skin and bones right now with no padding what so ever.   But she continues to snack on Rice Krispies while watching movies and drinking the PediaSures, so we’re happy with that.

One bit of good news I’m happy to share.  Dr. Weicker called this afternoon with the results of the blood work done on Wednesday.  Her hemoglobin was at 89 which is great.  At the time of her transfusion on Christmas Eve it was down to something like 64.   He also said the results of the other tests they do for liver function all continue to remain stable.  There has been no real change since mid-November, just little ups and downs (hope I got that right, Dr. Weicker.  🙂 🙂 🙂  )  We were thrilled with the news of course.  It means she’s holding her own and her liver is holding its own – I think.    Rays of hope are always most welcome, especially after the internal hurricane of the last two days.

And to top our day off with even more sunshine, Joseph has decided not to return to school at this time. He’s able to pick up his course again next January.  So he’s got job security when it comes to the 2:00am night shift. It’s just too bad the pay is so poor.  Actually that’s not true, his pay is ‘out of this world’ and held in trust where thieves (and governments) can not break in and steal it (or demand it by law).  Sounds like a good deal as far as I’m concerned.  And there is the added bonus of not having to cook for himself. I wonder how much that factored into his decision.  🙂  No matter, we’re just happy he’s sticking around.  Yea