June 11, 2013 - Day 66

June 11, 2013 - Day 66

I've been doing a lot of GBS reading the last few days. There's a forum at gbs-cidp.org and I've been trying to find some relevant information. I'll post my own questions there soon and see what kind of responses I get. 
Brian and I have been just completely at a loss for how to help Bella. She's had so much regression and such a lack of motivation. It's really hard to get inside the mind of a 10 year old who is facing such struggles. The last few days were not great. There were moments of good. Like Monday afternoon when Bella sat on the couch and sang loudly while trying to move her body as much as possible. I watched Brody watch her and felt such joy. He was looking at her with such love and fascination. I imagine that he was thinking that this was the Bella he knows and loves. The big sister who played school with him ALL the time and helped him to run restaurants in our Mabank kitchen (when Mom just wanted to get dinner on the table!). There are some good moments but the last few days were not great. Until tonight. Brian and I were both out of the house at work today so Brian's mom cared for Bella. She didn't have a great day. She cried with Gammer and missed us a lot but perhaps it was a good thing. From the time I got home at 7, she had so much energy and perkiness. She was strong and motivated. She took a bath and was moving and kicking her legs in the tub. She had several really good stands. We feel hopeful right now but know that the reality is there is a very long road ahead.
I spoke with a woman yesterday whose son battled GBS when he was 5. He had a very severe case - much worse than Bella's. He is now 8 and she said he's about 99% back to normal. Her (admittedly non-medical) opinion when I explained Bella's case was that Bella needed more time in rehab. She even encouraged me to get her readmitted. I'm not ready to go that far but I am ready to start paying out of pocket for in-home therapy. Insurance will only pay for outpatient at a facility or in-home but not both at the same time. Bella needs both.
After all the reading I've done in the last 48 hours, I'm coming to realize that there does not appear to be a textbook GBS recovery. The degree of weakness and time to return to normal vary widely from person to person. One thing I read today stuck with me. A poster said that his PT had taught him to crawl before you walk. It makes perfect sense - that's what babies do - but we've been pushing Bella to walk with her walker. Maybe she needs to start on the floor and learn how to crawl again - where there is no fear of falling - before we push her to take steps.
I'm still trying to locate a counselor. I've been pursuing recommendations but have not yet connected with one who works with Bella's age and is available right now. I have a few more leads to reach out to tomorrow.
Side note about my work: last week I had a meeting with my company's CEO. It was the first time in 4 years that I've had a meeting with him. He very sincerely asked about Bella and seemed to genuinely want to know details. Then he asked if there was anything the company could do to accommodate my situation. When I told him I didn't know what to ask for, he offered me a 4 day work week. I was about to start taking a vacation day every week to allow me to work with Bella one day so this was quite a revelation. I started this week working 4 10 hour days. I am grateful for this new schedule, though the long days are hard.