April 18, 2013 - BOCH

April 18, 2013 - Day 12

“I know God won't give me anything I can't handle. I just wish he didn't trust me so much.” - Mother Teresa.

My friend Debra shared this with me and it rings so true for me right now.
However, even with all that has been turned upside down in my life, in watching the terror in Boston and the sadness in West I'm somehow grateful for the burden that has been cast upon me. I felt this way in the hospital too. Grateful that Bella will recover from this diagnosis...someday

Bella is having a good day today so far. She slept really well last night – even with the storm and worked with OT this morning on dressing. She’s able to do 50-75% of her own “self-care”. Bella then wheeled herself all the way down the hall to the elevator and downstairs to the therapy gym. She worked with the speech therapist on breathing and vocal strength (Bella’s voice has been weaker than ...usual at times with this disease). She worked with OT again and practiced standing up (nose over toes – they taught her to lean forward when standing rather than trying to pop straight up from her chair). Bella was able to stand with a little assistance and place bean bags on the OT’s head. She repeated that 5 times. With the PT today, she practiced standing and was able to stand and balance for 30 seconds and then a minute. She worked with the walker and by the 2nd PT session, she walked 5 steps with the walker and a little PT assistance. Major improvements!

After lunch, Bella worked with the NeuroPsychocologist on understanding what is going on with her body. The doc brought in a video that explained blood cells and how sometimes a few can turn bad so the good cells have to work harder to fight the bad ones. It was great to hear that I had been right with my green army men explanation (maybe I have another calling…). The Child Life Specialist came in and played with Bella for about 45 minutes and then the hospital teacher came in and worked with her on time and measurement. She has scheduled appointments with both the teacher and child life for tomorrow – those are the best parts of her day. And now, I’m trying to get Bella to take a little nap before dinner (5:15 is just around the corner). She’s had a very busy but successful day.

The best news of all is that the therapists and doctors seem to agree with me that Bella can benefit from intensive outpatient therapy. I’m still pushing for a weekend discharge and then we would start IOP Monday. Praying hard that insurance will cover enough OP visits to allow this.

Some victory shots from earlier today. With the tongue sticking out, you can tell how hard she's working.

Standing without holding on. This is EXTREMELY difficult for Bella. She made it 30 seconds at first and then a minute.