Wednesday

We visited the orthonic clinic because Emily was uncomfortable in her brace all of last week. Several pressure sores appeared on her foot so it was time for a new one. Alan fitted her for a new one which involves wrapping Emily's leg and foot with the same bandage you would use if you were putting on a cast. Once it's on he moves her foot into the correct position and holds it for 5 minutes until the cast is dry and hardened. We had the choice of several different color designs (dinosaurs, swirls, butterflies, trains) but this time the choice was clear LOL it's going to be camo! It's really cool that they give kids different designs but they need to get more. Sculls or something black would be great because most teenagers love that. The old brace was heated and stretched to make room for Emily's new calf muscle! For about 10 months her left leg was withered and had no muscle tone but now we have a teeny tiny bit. If you saw her legs side by side you'd see quite a difference just like when you have a cast taken from a broken leg. The left (Sarah) is skinny and the right (Laura) is normal. We named her legs after the first month, it helped to add humor to an otherwise horrific situation.

Several phone calls followed the trip to Alan. One to the neurologist to get new doctors orders and one to the insurance company to beg them to cover some of the cost.

Monday

Trouble makers!

Monday

I'm teaching myself photography. Not point and shoot pics but pictures taken with a proper camera. This is my first attempt :)

Monday

The Jonus Brothers

Emily's dream came true when we went to the State fair and saw the Jonus brothers. Because she's still unable to walk miles I took her in her wheelchair and managed to get to the very front. I'm sorry to all those with squashed toes but a girls gotta do what a girls gotta do! It was FAB!

Saturday

Cat attack!

Tom

Last night one of our cats snuck into Toms room. Tom was asleep on his bed on the floor (we had out of town visitors) and the cat climbed onto the bookshelf over him. When she knocked his drink over she was frightened and jumped down. Unfortunately she landed on Tom's face seconds after the cup hit and she cut him really badly. I heard the band but no blood curdled scream followed so I thought all was well. oh my goodness how wrong could I be. Poor Tom had a gash 3 inches long running along his eyelid. I stopped the bleeding and rushed him to cooks where he had 12! stitches!! He also has a half circle cut on his head where the plastic cup hit and a scratch across his forehead. He looks like he's been in a car accident. We arrived home at 4:30 am sore but so happy that Tom didn't damage his actual eye. Today his eye is bright purple and swollen, he's going to have a shiner. We were told that the police would need to interview us and animal control would come, add that to the new medical bill and whoop Dee Doo we have a party LOL My son didn't lose his eye, bring it on!

Gigantism

I watched a show tonight with Pete, it was about gigantism. This lovely family had a little girl with gigantism and it was localized to her head. She had eye tumors and bone growth in her ear. Her head was huge and threatened to cut off the optic nerve causing her to go blind. This time last year I would have watched such a show with a definite degree of separation. Not my child... Obviously I would have been horrified and most likely shed a few tears, I hate seeing people suffer. This lovely Mom described how one day she does well and other days she just finds "it all to much". She fears what the future holds for her daughter and grieves the loss of the dreams that she once had for her child. I watched in silence, I can relate. I've met many people now with RSD and all have spreading. Some have this disease all over including internal organs and many find everyday life a challenge and others get by each day with the help of many medications. With Emily will it spread? Will this rob her of college, a husband, a family of her own? Actually, who knows. None of us know what's round the corner so I'll continue to do my best to support my child the best I can. I know I'm going to have days that will make me panic but they pass pretty quickly because it doesn't help anyone especially Emily.

Emily before

Some things in life just aren't fair ...

Just a little outburst ...

Wow, where do I start?

Tomorrow is Friday and our garage sale. Due to our current financial "issues" we're selling as much as we can. This unfortunately means Pete's pride and joy, his boat. He bought it a few years ago and we finally finished paying it off this year, it sucks that it has to go, I feel so guilty. He bought me a kayak last year for my Birthday and even though I waited years to get one I think I need to sell it too.

I tried to make an appointment with Emily's pain management doctor (Dr F) on Wednesday only to be told that they are withdrawing this service at Cooks. Pain management will now be for post surgical kids. It took me 6 months to find a doctor who knew anything about pediatric RSD and this news quite simply made me cry. Doctor F called me later that day and said that my choice was to take her back to our previous PM specialist (totally out of the question) or go to Cincinnati to his friend and pediatric RSD specialist. Did he have to be so far away???? Dr F has a niece with RSD so I thought I'd struck gold when he agreed to take Emily, this is a bit of a blow.

I've had no patience with anyone this week. I'm trying hard to get healthy by going to the gym and eating well but it's just kicking my butt. It's been almost 2 weeks since I started the eating well portion and 3 weeks since I started at the gym and I feel better physically. Mentally I feel annoyed most of the time and rude people such as DR F's nurse have felt the sharp edge of my tongue. I think eating bad food dulls things for me and makes things easier to cope with. I've taken that away now and I feel panic struck and totally frantic to get things done. People are pulling me every which way and I feel like my body will break into thousands of pieces if they don't stop. Currently when I'm not dealing with Emily I'm working with the school. I'm trying to compile everything for Pete's CPA as well as run the back office for his business. He's doing a new business venture and although it's a good thing Its added to my workload. Keeping the house clean and organised is important to me and I get stressed if things are out of control. I'm finding that relating to Tom is hard sometimes because he's a boy and I feel guilty that I'm so over stretched I'm unable to spend the time I want with him. I run all of the finances in this house and I can never get away from this mess. I spend evenings trying to rob Peter to pay Paul and each day it weakens my soul. The medical stuff, ignorant people, people who want to add just one more thing to my already overflowing plate load, it all adds up.

Emily got turned down for the make a wish foundation today. I applied so that maybe she could do something wonderful. I know others who have been excepted without a "terminal" label so I hoped she'd get a wish. She really does deserve it and god knows Pete and I can't afford to do anything for her other than feed and clothe her.

Screw being positive, I HATE watching my child go through this day after day and I HATE that my son gets left out. I HATE having a massive job list before I get up each day. I hate needing charity to survive! I HATE that inside I feel so overwhelmingly angry, I can barely control it. I HATE that Pete has to sell his boat!I HATE people who are rude to me because they don't understand how truly fragile I am. I HATE dealing with the school. It's not the people it's the fact that I feel like an idiot each time I walk in there and that I have to constantly fill in paperwork to make Emily "special needs". I HATE that she has to be made special needs! I don't want her to be special needs, I want her to have her life back and I want her pain to STOP! Why did this have to happen? Why did Steve have to die? Stop this Merry-go-round, I want to get off. Someone please pass me a twinkie...

One step ...

They say that anything less that 5 hours sleep a night is harmful to the body yet here I am at 3 am with less than 3 hours before I have to wake Tom, doing paperwork.

Some nights I just can't sleep. Emily's situation is all consuming and it's hard to switch off. Every day is a huge juggling act in which everything must be planned to the letter to give Emily the chance to have a successful day. Most days, I would say 19 out of 20 I breeze through any situation gracefully just like all is well. Keeping 15 balls in the air is my speciality but every so often it becomes a little much and it hits me that my child will never be the same. That my carefree Emily is gone forever. Don't get me wrong, I adore the new Emily and embrace her passion for life but I'm only human, this is hard!

This new week holds many challenges. How can I make ends meet this week? How do I get Emily through another week of school and keep her up to date? How do I keep Tom on track and give him the time he deserves and craves? How can I stay on my diet when all I feel like doing is eating to comfort myself? How do I keep Pete from losing his mind with worry because the housing market has slumped and he has no work? How can I pay the house note and bills? How do I keep a cool head when everything around me is falling? How can I get Emily to her hospitals appointments and still keep her up to date in school? How do I give my friends the time they deserve? How can I work on Wednesday when I can hardly keep my own house running?

The answer? By doing it all one step at a time ...