Another week full of ups and downs.

This week has been like most of the others since Emily was injured. Up one day down the next. Early in the week we had a special visitor that made our day and Emily had a blast. Our visitor stayed the night so Emily stayed in Tom's room overnight, she always finds this comforting but I have to limit it to Friday and Saturday because Tom needs his sleep and as I have already said Ms Emily burns the midnight oil. The following day Emily woke up groggy and stiff.

Wednesday was my Birthday and our monthly DFWMAS meeting. For the first hour Emily did wonderfully. She walked around happily delighted to show everyone that she was out of her wheelchair. At the half way point I could see her face change from happy to serious, I could tell she was in pain so we slipped off her brace and shoe. This week a small pressure mark has appeared on her heel so we have to take the AFO off more often and for most if the week she's had it off completely. I can tell her disappointment at not being able to wear it because with that sore came the reality that her mobility is dependant on a large plastic brace. By the end of the meeting Emily had to be carried to the car and by midnight you could tell she was in full flare up. Her foot was on fire and it has filled with fluid again.

Today I planned a quiet day. I wrapped her in a blanket and we watched little Miss Sunshine again. She loves this movie and I know she enjoyed the change of pace. I cooked fresh pizza for lunch and she sat curled up next to me for several hours.

Tonight was her school talent show and Emily wanted to attend. She was very pale and serious looking but never the less felt like she wanted to go. Several of her friends were performing (they were fantastic!) so she wanted to show support. I could tell the noise was to much for her but she never complained. I helped cover her ears discreetly so's not to make the performers think that she was drowning their singing and made a mental note to carry earplugs next time.

I'm proud that she gets herself up when sometimes she feels like laying down and letting this disease absorb her and I'm proud that she tries to stay positive no matter what. Mostly I'm proud because no matter how much she hurts, no matter how bad she feels, she always has room in her heart for others. That's what makes her so totally wonderful and a blessing to have around.

Tonight she's still awake. We've chased the pain all day and it hit hard at about 10 pm. It's 2 am now and she's sitting in her bed doing a sponge bob crossword puzzle. We gave up on sleep a while ago because she was getting distressed. I can't be in there all the time because physically I can't always be with her 24 hours a day and in order to give her back her old life I have to teach her how to push that pain to the side. I go in every 30 minutes or so to make sure she hasn't gone over a 10 on the pain scale and that my help isn't required. I just peep in without her seeing me and I can tell just by her sound, position and movement what number she's on. I try to stay out for as long as possible even though it means that I have a very tight chest while I wait. Some nights she can settle herself down by 2 am and others it takes until about 4 to calm her enough to sleep.