Bella had a bit of an emotional letdown over the weekend. She was extremely fatigued all weekend but maintained her physical strength when she needed to move. I live in constant fear of another relapse. Since she's shown continued improvement for the last month, I want to believe that I don't have to fear a relapse again. Nonetheless the fear is there always nagging at me. This morning didn't help. Bella was still sleepy this morning and had a little more trouble walking. That was not as alarming but on the way to the bathroom, her legs gave out on her completely. Fortunately, I had my hands under her arms and was able to grab her before she collapsed all the way to the ground. It scared both of us though.
On Friday, Bella's OT told me that Dr. Nelson (the physical movement and rehab doctor) had instructed her multiple times not to overtire Bella. The doctor says that pushing a GBS patient too far can encourage a relapse. I had not heard that before but now feel I have something else to fear. Ugh!
I was not able to attend therapy with Bella this morning but got a full report when she got home. Once again, her therapists said this was her best day yet! In the gym at Dell, they have a short set of stairs – 3 smaller steps on one side of a platform and two more normal height steps on the other side. Friday she scooted up the steps on her behind. In PT today, she walked up the steps with a little support from her therapist! I’m so sorry I missed it! She also sat on a yoga ball and did punches. She walked about 80 feet and practiced standing a lot. She graduated from the yellow stretchy band (in picture above - used for chest flies and other upper body exercises) to the blue band – skipping a resistance band in the middle. That’s an awesome demonstration of how her upper body strength has improved! Bella was very happy when she got home! Tomorrow she has another 2 hours of therapy and will have her last PT visit. I've not yet won the fight with insurance for more PT. We have one physical therapy student who is coming by 3 days a week to help Bella with her therapy “homework”. We are trying to line up another student to cover 3 more days but haven’t had success with that yet.
Bella's yellow stretchy therapy band - she's now too strong for this one!
Bella weighs 6 pounds less than her hospital admission weight. I tried very hard to feed her a Paleo diet since she was discharged because I believe all the research behind the benefits of that diet. However, Bella just wouldn't eat enough. She fills up very quickly and often doesn't realize she should be hungry or thirsty. I’ve allowed pasta, protein bars and shakes back into her diet. I’ve gotten to the point where I don’t care what she eats if she will just eat enough! I give her goals every day – to drink 2 large glasses of water, finish 2 cups of milk, etc. She did well today. I must admit it is very hard to remember to feed a 10 year old with the type of routine and encouragement you would feed a baby.
We are having more good days to bad days now. For a long time we had one good day, one bad day but now it seems to be 3 or so good days and then a bad day. Things are moving in the right direction and still achingly slowly improving. Although we all get impatient, we thank God for each new accomplishment and every small step forward!
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