I hope everybody had a good weekend! We did! It was a little low key for the first time in months. On Sunday we took the kids to the movies and saw "Rango". They really liked it! It was Lucy's very first time at the movies and she keeps asking to go back!

I haven't made much progress on finding a new DME. I have one more company to try but just haven't had the time to spare so that I can get on the phone for a few hours and get it sorted out. I am hoping to handle it today or tomorrow sometime. It would really be great if we could find a more helpful company and heck, if that company happens to charge less for her supplies that would be nice too!

Yesterday Lucy had an appointment for a physical therapy evaluation. Lucy has steadily lost her endurance over the last year or two and struggles to keep up with other children her age sometimes. Initially our doctors thought this would improve once she got a tube and her hydration and nutrition was brought up to par, however, things only got worse after the tube despite her taking in more calories than previously. She also complains pretty much daily that her "legs are breaking" and is asking for shoulder massages because her neck hurts. The whole thing is a mystery.

Our pediatrician, Dr B, wanted us to go in for a PT evaluation just to sort through and see if there was any sort of muscle weakness or anything like that going on. I didn't think so, because Lucy doesn't seem weak in the least, shes just not as active as she once was and often tires out very quickly.  Shes fine to bounce around the house and play but we are still completely dependent on a stroller because the walk from the car to a store is more than she is willing to take on.

The evaluation revealed that she did have some muscle weakness, primarily in her core but her arms and legs are strong enough that she compensates fine for it. She started off the test full of energy but got more and more tired. By the end she was showing some weakness as she got tired, but was still passing.

We elected not to get physical therapy because it seemed doubtful she would gain anything more from it than she would by getting out and engaging in an organized activity like ballet.

Our appointment with the GI is set for the 22nd and I plan to talk with him about her pain issues. There may be something that can be done, there may not, but its one issue I'd like to see get worked out for her sake.

Thanks for checking in on Lucy!!
I opened up the blog for comments. I've had several people ask why it wasn't and I really couldn't come up with a good reason why. So there it is. :)