April 11, 2013
It’s amazing how busy the days are here. We had a rough start to the morning. Part of the concern with progression of GBS is loss of bladder function so the nurses do an ultrasound on Bella’s abdomen a few times a day and they did one at 6:15 this morning. Of course, that woke us up and our day started from there. Bella was very weak first thing this morning and was unable to hold down her breakfast. I feel that was due to the 3 meds they gave her on an empty stomach - even though none of them are supposed to cause nausea (I’m just the mom, but I trust my gut instinct on this one). Another concern with GBS is weakening of the diaphragm so a respiratory therapist comes in a few times a day to check her oxygen levels. So far her levels are excellent and they don’t expect it to deteriorate at this point.
I’ve lost track of the number of doctors she’s seen today. The neuro team has come by twice – once she was being examined by a physical health and movement doctor (something like that) and the 2nd time Bella was in the art studio. They made an appointment for 3:30. :)
The occupational therapist worked with Bella this morning. Her left arm strength was significantly better than yesterday. The therapist, a student nurse, and Bella played a game of This or That and at the end of each round of questions, Bella threw 3 bean bag bunnies at the therapist – attempting to aim and test her strength. She did well. We also had her pull a cap off of a marker (something she couldn’t do yesterday) and she was able to do it. Very good to finally see some improvement – no matter how small.
Uncle Mike and Aunt Mary visited for lunch and then Gammer ( Brian 's mom) came by and took Bella to the art studio (her favorite place). Today she painted her clay dog, made 2 colored sand weights and colored a flower. That exertion tired her out quite a bit so she had a short rest before the physical therapist came by to get her at 2:20. She is currently in the “gym” working on some small strengthening moves. They started with toe taps, progressed to seated leg raises (raising the bottom half of her leg), and are now playing seated beach ball soccer.
The psychologist is scheduled to come by around 3 to see how she’s coping.
Right now, they are suggesting a move to inpatient rehab once the IVIg treatments are complete. They’ll know more tomorrow or Saturday.
- Bella's Mom (Nicole)
Thought you'd like to see where we're spending all our time. The nurses say Bella has the happiest room in the hospital with all the balloons. She got really sad this afternoon. Doctors are recommending IP rehab and Bella just wants to go home & back to school. The psychologist missed Bella again though I think she could have used her today. I just woke Bella up from a much needed nap & am going to push her out to the courtyard area for some fresh air. I think that will help her a little.
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