Weekends are always Weird.

Rebel woke up on Easter Sunday morning with blurred vision. It freaked her out. Her speech was a little odd too. She couldn't find her words. They quickly had neurology assess her and didn't find anything. All seemed fine. They're not sure what the deal is with this. As the day progressed the blurriness and double vision got better but Rebel was really tired. The docs aren't sure if this is related to her hemoglobin count. Perplexing and disconcerting. They'll figure this out as we move into Monday. Weekends are always a weird time as the regular docs are all off and the staff doctors come in and try to assess things.

The VAD she is using was making peculiar noises too. SU seemed to think it might have been the compressor and/or the fan. The nurses had to call in a perfusionist. He changed the VAD and took the one she was using away for an overhaul. That is always a neat trick as he literally tries to change the wires on the machine between heart beats.

She was eating a little and enjoyed the food I brought from the blessed Easter basket - the traditional Ukrainian foods.. the special Easter bread I baked - the babka- some turkey kobasa - lower sodium than regular, low fat ham same thing, a cheesecake cupcake, and of course, a few chocolates.

And the nurses once again, treated her. A couple of little gifts from the special nurses.

So keep the thoughts and prayers coming. Rebel is at the top of transplant list. She is frustrated and upset with these down days. And who can blame her.

After this day at the hospital I came home to prepare a semblance of an Easter Dinner for the RebelTweeny... As I am cooking a few things to augment our traditional food, SU is grazing his way through the kitchen in his usual fashion. I knew he wouldn't eat supper with us. It seems that even after knowing that for me, and what should be a lesson for our children about the meaning of Easter in my and their lives, he chose to ignore it. Sure enough, As I had the table ready and RT and I sat down to eat - he said no thank you and stayed in the basement.
Interestingly, RT is starting to wonder about him now too, in spite of his Disneyland Dad ways. She shook her head and said she didn't understand what his *issues* were.

On Saturday the SU took RT and her friend to visit Rebel. SU made some disparaging remark about ordering doughnuts to the friend. "you're getting a doughnut? They're fattening you know... are you sure?" She was more than a little taken aback by it. RT was mortified that her father should say such a thing...and she told me. I suggested she let her dad know that it was rude and that he hurt her friend's feelings. That a polite conversation with her dad rather than a yelling match would be in order so her dad would understand how she and the friend felt when he said what he did.
She took my advice. And of course, as always, she told me at dinner on Sunday, he scoffed and didn't see the problem. She stood her ground though and told him to please be polite and not say negative things to her or her friends. Good for her. He did this often to Rebel, and she hated it. It's the way girls go anorexic and have other issues about their dads. Rebel seems to have patched things up with her dad. We'll see how things progress with the younger one.

Keep our Rebel in your prayers. I think her frustration and fear is growing. Keeping her positively focused through all these setbacks is tough. But this too... shall pass.

It's Easter Week. We now celebrate for 40 days after Easter.

God Bless you all.