May 31, 2013 - Perspective

May 31, 2013 - Day 55

Perspective. One thing I have gained over the last 2 months is perspective. I used to say "Man, the worst thing is..." or "It doesn't get much worse than...". I have learned not to say that. Yes, it can get worse but I pray it won't

Got some good news today. My knee is very badly bruised and I have only a minor strain. Could be much worse. 1-2 weeks in the monster brace and I should be good as new.
We allowed Faith and Brody to skip school today (their last day of school!). We've been such bad school parents since we made this move but it is just really hard to coordinate getting them to and from school sometimes. Today was one of those days. Faith did an amazing job with Bella, though. She spent a long time with Bella on music therapy. They practiced singing (Faith's absolute favorite thing to do) and Faith helped to cheer Bella up. She (Faith) really made us proud today.

Brian took Bella to see the PMnR (physical movement & rehab) doctor that we had seen at Dell and a new pediatric neurologist this afternoon. I had told the PMNR doc that Bella was weaker and I was very concerned. I had been telling her this over the last 10 days or so and she examined Bella first last Friday (post swim, which caused the ban from the pool) and then again today - this time with the neurologist. Both doctors agree that she is weaker but believe it is due to muscle atrophy and not further complications with GBS (though of course ALL of this is a result of the GBS). The neuro doc said that it typically takes kids Bella's age weeks to recover. Bella is about to hit the 2 month mark since her diagnosis. I'm a little skeptical about the suggestion that recovery happens in weeks. The Dallas neurologist set our expectations as many months to a year. Perhaps that is the difference in the number of GBS patients that the 2 different doctors have seen? Or perhaps the difference lies in the severity of the GBS attack? I really don't know. We were relieved that neither doctor felt that Bella needed to be admitted again.
Brian also spoke with one of Bella's favorite outpatient PTs (Joy) for a long time this morning. Joy said that Brian and I have to be tough with Bella. We cannot be parents, we have to be coaches. If she was able to do something in the hospital when she was released, she should be able to do it now. In the hospital, she could walk 67 feet with her walker and no assistance. Now, she needs about 50% assistance to transfer from chair to wheelchair. We have to make her get herself dressed, reach for things that are a little out of reach, etc. It's hard and it takes time but we will do it.
On the way home from the doctor, Brian and Bella decided that Bella needed to show 3% improvement every day and that would make her completely better by July 4th. We are getting a calendar and setting some specific goals and rewards. The therapist said that we have to be very strict with the rewards. Even if Bella works really hard but doesn't do what was set as the goal, she doesn't get the reward. We are also discussing booking a beach trip to Port A (can't go too far this summer) for mid-July (hopefully refundable). If Bella is not out of the wheelchair (or some other goal), we don't go. We'll see. And we're setting up a daily routine that will include very detailed notes about all that Bella needs to do. This all will take work from all of us but hopefully the end result will be a 100% healthy Bella!