You might have noticed in the Little Feet Meet photos that Alex is wearing a brace. Two weeks ago she came home from physical therapy and she was upset - very grumpy and biting her arm a lot (the way she lets us know she's frustrated or hurting). She had a bath that night, a routine she LOVES, and even that didn't make her happy. I thought maybe she was just sore from PT, but after a few days she was still really grumpy. On top of that she would NOT let us put her in a sitting position on the floor. She was completely fine sitting in her wheel chair or her other supported types of chair, but she absolutely refused to sit independently (Indian style or propped sitting) - and when I mean refused, she would completely hyper extend herself so it was nearly impossible to get her to bend. Talk about frustrating - for both me and her! If I did manage to get her in a sitting position she would hold her arms very close to herself with a pained look and then she would bite her arm. I really thought she had something wrong with her hips so after a week of her obviously not getting any better I took her to the pediatrician; who, just as I knew he would, referred us to her orthopedist.
We went to the ortho the next day and spent FIVE and a HALF hours at the appointment. How fun.
She was largely entertained in the beginning by the sound of the paper on the exam tables, which is always a favorite for her.
We had a bunch of hip x-rays done and they were normal. The doctor came in and rolled her on her side and started pushing on her lower back - WHOA! - she did NOT like that. Back to x-rays we went and the doctor said she has inflammation in her lower spine. When she's sitting supported in her chair it puts no pressure on her lower back, but when she has to sit independently and use her hands on the floor to keep herself upright it puts a ton of pressure on her lower back. So off he sent us to another specialist for a 'corset' type back brace and also sent us home with a prescription for an anti-inflammatory, which we had to stop after 2 days because it was tearing up her stomach.
Since Alex is on a blenderized diet she eats every 3-4 hours. We obviously did not think we were going to be gone for over five hours so she was starving half way through the appointment. Not to mention I had to pick her up from school early for the appointment so she had no nap. I have to say she she was so well behaved despite being hungry and tired and did much better than I thought she would. Unfortunately, because I think she was over tired, she had a seizure that night. Her first one since I took her off the Miralax. Boo.
Anyway, here's her new get up for the next three weeks.
I will say she is MUCH happier in the brace. If we have the brace off and she is lying on the floor she starts complaining but as long as it's on she's happy.
We go back in three weeks to see if she's any better. If not, we may have to look into seeing if she has a disc problem, which wouldn't show up on an typical x-ray.
Never a dull! :)