9:36 AM:
I forgot to post this yesterday. Bella got a visit from 2 of the hospital clowns (these guys are doctors who dress up when they're not on rotation & cheer up the kids). Plex #3 starting right now
4:30 PM:
I used to think I was busy. I used to think I was stressed. If I had the ability to laugh, I would be laughing at the old me. She didn't have a clue what stress was. She was blissfully ignorant.
10:16 PM:
The pivotal 3rd plex treatment happened this morning. Bella is a pro at this now. She doesn't get scared, and she doesn't have to hold Brian's hand. She only got a little nauseous during the last 10 minutes of treatment. She doesn't like the smell of her blood though. (She must be like a certain vampire girl who stole her name.)
Brian learned that they wash about 65% of her blood each time they do a plex treatment.The PMNR doc told Bella that she would have to wear the SCDs (leg sleeves) again. Bella got really grumpy about that news but they haven't brought them in yet so tonight will be free.
She was weak and tired throughout much of the day. OT didn't go so well. Just like yesterday, Bella had trouble sitting upright so simply balancing and strengthening her core with the OT holding her upright consumed all of her OT session. PT came by during plex but then didn't come again. I was told they would try to put her on a regular OT/PT schedule so they wouldn't interfere with plex but that hasn't happened yet.
I'm disappointed that school services has not come by yet even though we've requested them more than once. I'm planning to be more vocal about that tomorrow. Bella really needs that mental stimulation and needs to do something besides art projects and watching TV.
Brian took her for a walk in the courtyard around 5:30. A little fresh air tends to do wonders. She was upright in her wheelchair for an hour and did very well. She even wheeled herself down the hall for a little bit. I brought Pappasito's for dinner so we finally fuflilled our tex-mex craving. It was excellent!
I hesitate to speak it out loud but I think Bella is a teensy bit stronger tonight. She's able to brush her hair (though she can't quite get the back) and she can reach up a little higher to hold onto me during transfers. I am crying hopeful tears of joy and praying, praying, praying we've turned the corner and will see improvements with no more relapses! Here's hoping for more happy tears tomorrow
She looks pretty happy to be able to wheel herself. Her cath site is much less sore now
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