To summarize ...

Emily has several conditions. Epispadius, a bladder condition which lead to surgery which lead to RSD. She has peripheral nerve damage in her lower limbs which triggered RSD. The nerve damage together with the RSD caused Emily to lose her mobility. Months ago I was told that Emily would most likely never get her foot to lift up on it's own (foot drop) so we fitted her with her AFO or brace. This kept her foot from flopping around when she walked and gave her a new level of mobility. Before her botox she was confined to a wheelchair which was pretty tough all round but she worked through the pain and can now walk upright.

Several weeks ago we had the AFO filed down at her heel so that Emily could bend it just a little, our hopes are to put in a hinge eventually so that her foot has to work a little harder. The AFO causes skin breakdown and it's sweaty and uncomfortable not only that Emily can only wear huge white hospital AFO shoes that are ugly and I've been told "very uncool". Never the less for now it is our new way of life and our link to mobility.

Emily can't feel all of her lower limbs. The back of Emily's left leg is numb and so are areas of her left foot. It took 6 weeks for her to be able to move her toes. After that she was able to move her left foot to the right but not left and not up. Despite her numb leg and foot she feel deep pain throughout constantly.

Emily's left leg has grown abnormal hair as has her foot and her nails are thick and yellow and are more often that not infected. Cutting her nails is excruciating and something neither Emily or I look forward to. I often feel like I need a stiff drink after because it's very traumatic for everyone. Thankfully I don't drink LOL She also has a deep pressure sore on the back of her leg which is beginning to heal finally.

Constant medication and hospital stays are playing havoc with Emily's teeth, I noticed yesterday that despite my constant care they are suffering badly and she is in need of dental treatment. I am actively looking for a dentist that can deal with pediatric RSD patients. One that understands that currently I am very, very overstretched with medical bills. Yes, I'm looking for a needle in a haystack and a miracle.

Mentally I feel like right now we're doing better. I almost can't say it for fear that something will happen! Frank from Franks Tanks donated a Nintendo Wii a few weeks ago and it's helped not only Emily but Tom and Pete also. Most evenings we play as a family which is a great stress reliever and also helps us keep together. Its PT for Emily and exercise for Tom it's also FUN!

Currently Emily has a nasty cough but only at night other than that she's doing fantastically. Zach came to visit tonight and he has it to so at least I know it's just a cough. I was beginning to think something bad was going on. We dyed Zach's hair bright pink, Emily got a little pink stripe under her hair so despite her massive hospital shoes she feels a little more trendy.

I'm trying to make time for myself a little more. Things got crazy there for a while and I let myself go a bit so I'm trying to make time to give myself a break. This doesn't come easy to me and is in fact my own little challenge but I know that if I don't take care of myself I can't take care of anyone else so I try very hard. It's almost 5 am so as you can see sleep is still a problem but I'm working on it!