A quick update on the last several days. Saturday morning was very rough. Bella was very grumpy. She had one of her little tantrums and got so upset that she moved herself to the couch and then knocked over her wheelchair. Side note: prior to GBS, Bella never exhibited this kind of behavior. These occasional tantrums and frequent moodiness are a direct result of GBS and of losing her ability to walk and dance. Perfectly understandable but difficult to deal with nonetheless. She cried about hating GBS and hating her wheelchair. Brian and I each spent some time talking with her. I then pulled out the iPad and showed Bella all of her Facebook comments from the days before. All that love and support turned her mood around! We're so grateful to have this community of people to turn to to lift all of our spirits!
On Sunday we went to mass and then to see Despicable Me 2. Bella has gotten strong enough that we always leave the wheelchair leg rests at home. Just a month ago, her legs would have tired too much being out of the house that long - especially without the leg rests. During mass Bella pulled herself up to stand several times. While I know she's so much stronger, I still get very concerned when I see her upright without someone right next to her.
We're still waiting on insurance to approve additional physical therapy visits. This week Bella is down to 3 OT visits at Dell and next week she goes down to 2. I'm so uncomfortable with this but there is little I can do to change it at this time. Bella thrives off of these appointments and off of the daily therapy she is getting with the PT students. In fact last Friday evening when one of those students was working with her, I heard a knock of the door of my upstairs office. Bella had walked all the way up the stairs with her therapist! She was so excited about getting up and down the stairs one time that she insisted on doing it again. The 2nd time was a bit too much and possibly contributed to her exhaustion and moodiness on Saturday.
Today Bella and I had our first appointment with a psychiatrist. Although Bella has had many more good days than bad days lately, I still think she will benefit from the counseling. The doctor was impressed that Bella has already figured out several coping mechanisms on her own. For example, a few weeks ago she started reading avidly again. And every night she escapes in a book, which helps to calm her fears and allow her to sleep better. We'll go back to the counselor once a week for a while.
School registration is next Monday so we'll begin to find out quite a bit more about all that will be available to her after we get her registered in her new school.
Came out of bathroom where I was supervising Brody's bath to check on Bella only to find an empty wheelchair next to the stairs. Crazy girl had wheeled to her walker and then walked herself to her (downstairs) bedroom and gotten in bed. Amazing (and momentarily frightening)!
Bella received so many cool gifts while in the hospital but she was too sick to make use of most of them. They serve as excellent OT projects now!
After getting herself in bed, Bella decided to show off
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