I know you’ve all been following and praying for Ella, (and thank you again that you have!) so I’m keeping you in the loop about what’s been going on. A week ago Wednesday, Ella had her regular quarterly appointment at Scottish Rite hospital’s rheumatology department. They checked her out, ran some blood tests, and had no new ideas about the continuing weakness in her legs. After a little pushing, they agreed to refer her for a neurology consult at their... Read more

“Is there anything that can be done to help Ella?” My eldest son asked me last night. “We’re doing everything we know to do. What did you have in mind?” He took a deep breath and then let it out. “Like a donation – stem cells, bone marrow, nerve grafts. That kind of thing.” I’ll admit that I was intrigued by such a question from a 14 year old boy…almost a man, really. What did he really know about such... Read more

(Yes, I’m bringing back Homeschool Mondays! I needed a hiatus, but I’m ready to hit the ground running with them again. As always, if there’s a homeschooling topic you’d like to see me tackle, please let me know!) History is one of those subjects that can be hard…mostly because it’s booooooringggg. Every year, I listen to the complaints and mutterings about ‘how does this have anything to do with me’ and ‘this was all so long ago that the people... Read more

It’s a surreal moment when you watch someone strap your child into a wheelchair, and it gives you hope. Read more

Last weekend, I went to San Antonio for what I hoped would be two days of fun, CrossFit competitions, girl time, and handstands in front of the Alamo. (What? Isn’t that on everyone’s bucket list?) It was absolutely living up to the hype when, on Sunday afternoon, I took a wrong turn at the competition venue and walked into My-Reason-For-Being-There. Two steps through the wrong doorway, and I was staring at the back of a very buff gentleman. A very... Read more

Over the past month I’ve come to hate political correctness. This neutering of speech in the name of tolerance does nothing to help us at all. I wonder if it really helps anyone else either. The insistence on non-offensive terminology has complicated our efforts to find support groups and help. Ella keeps asking for friends who can’t walk either. She often gets left out when playing with her local friends, and they get impatient with a playmate whose disabilities limit... Read more

I’ll admit it, I was sitting here this afternoon feeling a little down on myself and trying not to cry. I just don’t feel like I know enough. I don’t know the questions to ask or the tests to push for. The doctors don’t seem to be motivated to help, and are more interested in giving me the run-around than in looking for solutions. At least 20 times a day I wonder (often out loud) why I’m the only one... Read more

I enrolled my eldest son in school today. That is to say, he and I went down and signed him up for the fall. He’ll be a freshman at a local charter school beginning in August. For all of the praying and worrying that we did over this decision, I am at peace and know that it was absolutely the right one for him. While I have loved homeschooling him, I knew that there would come a time when he would... Read more

Ella’s dance recital was on Saturday night. She was determined to try to dance in spite of the weakness of her legs. We told her that it was okay if she couldn’t do it, but she just shook her head at us and said, “This may be the only chance I get in my whole life to be a ballerina on a stage. I’m not going to miss it.” If she was game, I was. On Thursday, she had her... Read more

We saw the pediatric neuro-muscular therapist yesterday. While his bedside manner left much to be desired (he was an a**), he was also the first person we’ve seen who seemed to have an idea about what is going on with Ella’s legs.  The long and the short of it is, he thinks that her immune system is attacking the nerves inside of her thigh muscles. He has seen it in other children with JRA. He said that rarely when a... Read more