Get Emily Walking

Emily

2009-07-31T02:33:00.002-06:00

Today Emily's RSD is galloping ahead but we don't let it beat us. I have developed just the right blend of compassion mixed with forceful positivity that gets Emily going in the morning. Structure and discpline have remained in place together with NO! drugs of any kind. It's been 18 months since I took her off vicodin and lyrica and the miriad of other medication that anyone and everyone threw at us. No more! It's all great giving RSD kids medication but have they really researched the long term effects?? Nope! The medication doesn't really work anyway it just sends your child into an unrelenting fog. That's not something I ever wanted for my child and I simply wont have it. Her pain level I hear you ask?? Emily is still in chronic pain. her RSD is now in her feet and legs, hands and arms and new "feelings" develop often. Recently a new patch on numbness arrived on Laura her "good" leg, I show no fear as I'm careful not to cause alarm.

Emily's pain level is around a 9 out of 10 which is obviously very high, Her stamina is low but she's high functioning. School has been disasterous but I've found her a way to graduate to high school this next year and i'm ever hopeful that each year will be better.

My daughter is an amazing young woman, an inspiration to everyone she meets. You would never know that she lives with this chronic disease because her face is rarely without a smile that lights up the world. I couldn't be prouder of her :)

We take the on 2 off 1 approach. 2 days filled with activity then 1 day to recover, it's been this way for quite sometime. I made a point of making her responsible for her own disease, I backed way off. I have to make her ready for adult life so wrapping her up in a fleece blanket for the rest of her life just isnt practical (although I often want to do it). We've come a long way.

I don't know or care what the future holds because only today counts, I can't control RSD so it will do as it pleases without our focus. We live purely for today.

Emily Age 14

2009-07-31T02:30:00.000-06:00

What happened?

2009-07-31T01:48:00.002-06:00

I have been bound by my attorney up to this point but it's time to set the record straight. I am unable to sue the doctor that injured my child because she falls under the protection of a Dallas teaching hospital but that will no longer stop me from telling Emily's story.

In November 2006 Emily was wheeled down to surgery, 6 hours later her life changed forever. Apparently Emily's surgeon placed her in a frog legged position and bound her to the bed. The straps binding her were to tight and cut off circulation to her lower limbs from the knees down resulting in severe nerve damage and RSD. I suspect the surgeon stood to the left and leaned across my daughter because the left side was way worse. Torture followed ...

The surgical team closed ranks and "lost" the surgical notes. Efforts by 2 wonderful attorneys to seek justice was useless because trying to find a doctor to testify was impossible and in January of this year I was forced to drop the case. My medical bills grow and the surgeon sleeps soundly in her bed.

The day of Emily's injury rarely leaves my head even today. In my gut I felt that the surgery should have been stopped but I didn't stop it and I live with that guilt. What if ...

Children's Medical center in Dallas treated Emily horrendously and I would strongly advise NOT taking a child there. My anger has never gone, writing this post brings back the feeling of desperation and sadness, I guess it's never far away.

Am I still positive? You bet!! Scratch the surface and you'll find a stew of feelings and none of them good but they stay in a padlocked box in my head. One day when Emily is older and we've found a comfortable pace i'll empty the box on the floor of my mind and put it all to rest, I'm not ready yet ...

Time to begin again ...

2009-07-31T01:31:00.002-06:00

I recieved several emails recently from people who read my blog. I've been told that in some small way I inspire people and they want me to carry on writing. Ok people, get ready because here comes the update LOL

Last post

2008-04-30T08:11:00.008-06:00

Please email me at Hellenlostinftw@aol.com for my new blog address.

Stained glass

2008-04-25T22:55:00.000-06:00

Storms, balls and the circus

2008-04-25T22:21:00.003-06:00

The weather here in Fort Worth has been so erratic. Some days it's bright and sunny and others it's black and stormy. Recently we've has severe thunder storms and tornadoes pass through very close to us and this is causing huge pressure changes. Emily missed 2 days of school this week because her legs and hand hurt so much. Her RSD is on the move, her right arm hurt all the way to the top. We're coping ...

It'll be interesting to see how Emily does with our pool this year. She hated last summer, she had to learn to swim again because she had limited use of her leg. This year Emily's leg has almost all of its range of motion so that should help. I'm looking forward to school being out so that my children can be children. I don't know how it'll be with me working this year, we'll have to make the best of it. I would love to take the children away for a week but I doubt I'll be able to pull it off financially.

I took Tom to buy some new shoes this week. His old shoes were about ready to walk off without him so it was way past time. He hates shopping so I was greeted with the usual pout when I told him where we were going but he soon perked up when he pulled on his really cool new sneakers. Tom's routine has been the same since he was tiny LOL. He picks the shoes he loves and pulls them on then he bounces up and down along one isle of the store. He does a lap of honor round the shoe section just to make sure they make him run faster and finally he arrives back to me with a massive smile and says "yessssss these are the ones" LOL. I always let him wear them home, he bounces to the car like Tigger. The only slightly scary thing about our shoe shopping outing? His feet are now the same size as mine and he's only 10!! My baby is getting older, what size will his feet be when he's 18??? LOL

My week was hard but I have only tomorrow left and I get Sunday off. I had more energy this week and things were way more organised in the house. Working full time and juggling the 20 balls that I have in the air at one time is a challenge. Tonight as I type I feel like dropping all but 2 balls(Emily and Tom) and running away to the circus. Since I'm such a good juggler there must be a place for me.

Although this week was hard I count myself lucky that I have such wonderful friends. This week Karen put Flamingo's in my front garden which made me laugh so hard. Jody found a hula Flamingo which is fun just like she is and Tammi surprised me with my favorite drink, Diet Dr Pepper with vanilla from Sonic twice not to mention the many chocolaty treats that she bought to my work LOL They provided hugs and smiles and they made me feel like I can actually do this. I'm so VERY lucky to have such amazing people in my life, I feel really blessed to know each and every one of you.

Maybe I can keep these balls in the air after all ...

Update

2008-04-12T08:40:00.002-06:00

Emily has been back in school for a few weeks now. Roy, her home bound teacher has been trying to plough through the many pieces of outstanding work. He's such a nice man, he really tries so hard to help Emily. Emily returned to school for Math only but next week I'm putting her back for English too (although she doesn't know this yet) LOL

Kelly our PT made me laugh so much on Wednesday that it really helped carry me through the week. Physically Emily is doing fairly well although the constant weather changes have caused several flair ups. I've learned not to fuss to much and to drag her back up after a couple of days so that the flair doesn't go on for weeks. On Wednesday she fell ... she fell straight down from a standing position into a sitting position and really landed hard on her bottom. Thursday I went to wake her and she was asleep but her face had this look of agony on it so I opted not to wake her. Thursday was a rough day. RDS still hovers silently all around us no matter how much we try to ignore it.

Tom tried out for band and he will now be playing Trumpet next year LOL I plan to build a shed in my back garden so that he can practice LOL His last report card showed straight A's and yesterday he painted a friends hallway for $15 so for Tom life is good. I've been playing Frisbee golf with Tom everyday after school to give him some special time and this is paying off, he doesn't feel left out anymore.

My life continues to be a constant juggle. Every day's different but as always I strive to keep going and make the most of every second.

Zachs driving lesson

2008-03-23T21:56:00.000-06:00

This was the first time Zach actually got the car in the parking space LOL

Tom loves chalking

2008-03-23T21:55:00.001-06:00

We played with chalk

2008-03-23T21:49:00.002-06:00

Stop, I want to get off

2008-03-23T21:33:00.001-06:00

I can honestly say that I've hit some sort of wall LOL I've had it. I've had it with everything and I'm ready to get off this ride. Can someone please let me off???

Steve, I wish you were here ...

2008-03-11T02:31:00.001-06:00

My life ...

2008-03-11T01:39:00.002-06:00

My day to day life has changed so much over the last 3 months. I now work close to 60 hours a week. I work round the corner from my house at a business we own so Emily and Tom can come with me. The financial stresses for the house and business fall firmly on my shoulders and this is so overwhelming. I have so many people screaming at me for large sums of money right now it just makes my head spin. This situation is just getting worse and worse and I see no end.

Emily's RSD hangs over my head like a huge concrete block. The pressure and hopelessness makes me feel panicked but those feelings have to stay locked inside.

Keeping Tom involved, happy and thriving is a challenge that takes time, energy and planning.

Emily can't stay focused on school work so she's slipping further and further behind, this is very worrying to me especially since I cant get the school to return my calls.

I need to prepare some legal papers but I just don't have time!!! This is really dumb!

Cooking healthy meals for my family has become difficult because I have no time and when I do get time I'm busy trying to organise and cope with the world. This bothers me.

I have a laundry mountain taller than my son and my floor looks like a barnyard. My garage is so full of junk you couldn't park a toy car in there let alone my focus and this makes me feel even more out of control.

My diet sucks and I can't organise myself well enough to make those changes that I need to make to stay healthy. This is also really dumb!

One of my dearest friends is struggling with her fathers illness and I wish I could split a very large bottle of wine with her. Unfortunately the ocean separates us.

Working full time would be fine if I were paid but right now I can't be so I work all these hours and still have to scrape for the bills to be paid. I really hate this. I hate the money issue in general, if that was off my head I'd feel 100lbs lighter.

Pete made an error with his home inspection business and I'm left to clear up the mess. If he'd listened to me in the beginning instead of being so freaking stubborn this error wouldn't have happened and this makes me feel angry.

A friend of a friend is threatening me with legal action because I did as she asked and re-homed a dog she'd found. She handed me the leash in front of a police officer so she's really insane but it's stress I don't need. I took the time to help her when as you can tell I really have no time and still I get shot in the foot. This makes me not trust people or want to be around anyone.

I feel angry towards Pete's family and my family for their lack of support, I'm fed up with always having to be the bigger person. I don't want to be the bigger person anymore, they should know better and I shouldn't have to feel bad about myself.

I have packages to get off to my dear friends in the UK as well as Birthday presents that remain unwrapped and undelivered to my little friends here, man I'm a failure!

Finally, it's 3:30 am and I'm sitting in my office typing this. I have to get up to get Tom off to school in less than 3 hours LOL On a positive note I have cleaned my kitchen, washed some clothes and updated my blog. I've unloaded my brain for a change so maybe now I'll sleep.

My urge to run away screaming is pretty high right now but hey, what can a girl do?

Long time no blog ...

2008-03-11T01:02:00.002-06:00

It's really hard when you take a small blog break because as fast as my life is it's hard to catch up in the short time I get to actually sit down and type. I will however give it a go :)

I'm trying to get Emily back to school but it's just not happening. I called and asked for a letter to be written by Emily's doctor but he was away on vacation, finally it was faxed across to the school last Friday (3 weeks after I requested it) They truly do their best, I'm not complaining. I have now left 3 messages with the school and not had my call returned which is very frustrating. Again these guys have tried really hard to help Emily but I need to get her back to school!!

Physically we have good days and bad. Today has been bad but we'll just celebrate the several good days that she's had recently. I bought her some skinny jeans she thinks as a cool gift but they are actually to tight for her brace LOL Ahhhhh those sneaky Physical therapy tricks!! She loves wearing them because they make her feel attractive and we've found some DC shoes that she can wear that she says feel comfortable. She's quite a beautiful young lady.

Tom struggles daily with Emily. We have normal sibling rivalry mixed in with jealousy that everyone pays attention to Emily before him and added to that is a healthy does of guilt that he feels jealous. Emily can be snappy when she hurts but imagine her hurt and hormonal!! Quite a combination I can tell you and the other day Tom had just had enough. A small altercation ended in the remote control leaving Toms hand rather rapidly and finding it's resting place on Emily's right eye socket. I'm not sure who was the most devastated, Tom or Emily but lets just say that since then things have changed.

I can't imagine what it must be like to be Tom but I try. He was so ashamed of hurting Emily I didn't yell or punish because seeing her black eye each day was enough. Instead I'm setting him up with a support network and spending more time talking to him and teaching him ways to control his frustration. I'm also working with Emily to help her understand how Tom feels, this includes letting her know that this isn't her fault because that's all she kept saying after "if I hadn't got RSD this wouldn't have happened".

Several weeks have passed and Emily and Tom are getting along better. Tom's being much more open about how he feels and I feel slightly more in control.

This accident has changed so much of our lives, it's really hard. You shouldn't question why this happened because looking back is a waste of valuable time but I do hope things improve.

School

2008-02-15T16:52:00.003-06:00

I had a meeting with Emily's vice Principal, Bronwyn. She's such a nice person and I'm so grateful to her for everything she's done to help Emily this school year. It's clear that not enough work's getting done here at home for Emily to go forward so I had to come home and crack the whip. Emily has a lovely home bound teacher who is already overwhelmed with her many other students but she tries so hard to get Emily through her work. Usually after she leaves Emily crashes so not much more gets done. I set some higher goals for Emily and now she'll have to work harder to pass this grade. I know she can do it because she's totally awesome!

During my meeting it was decided that Emily would begin her return to school starting this Monday with 5 days of just Math. This will continue for a few weeks before we add another subject. We'll combine those subjects with Jan and myself home schooling and this way she should do much better.

On Monday Emily goes back at 10:00am until just after 12:00. She wont have to cath during this time and she'll have uninterupted class with her peers followed by lunch with Andy in the cafeteria which will do her good because I feel that she needs to mix with kids her own age not to mention that this is going to make her return to fulltime school easier.

Yesterday

2008-02-12T08:24:00.002-06:00

The cold weather has been difficult for Emily. Unable to get her legs warm, her pain has increased. I really don't enjoy watching Emily struggle, I would swap places with her in a heartbeat.

There's nothing I can do other than do my best to keep Emily as positive as I can. I sometimes don't feel that positive myself but I hide it well.

Emily's medication remains the same. Vicodin, motrin and tylenol all PRN or as needed but for the most part Emily tries to go without. We've been down that road before and we know that medication isn't the answer. This time last year she was taking so many medications that she had no standard of living, she wanted to die. Since coming off her medication she's struggled with controlling her pain but that struggle was there even ON medication so we'll stick to the plan we're on.

I took Emily to a meeting yesterday where we had to explain about her condition and it was deeply upsetting for both of us. She puts a brave face on but it's hard for her to go into in any depth. When people ask us how we are what do we say to avoid showing the cracks? "I'm fine". Because it's much easier to say that than admit that you wake up everyday with a feeling of dread deep down in the pit of your stomach.

Yesterday I was forced to relive the beginning, the despair, the hopelessness and the horror. I listened to my child describe her life and what she wants for the future and for the first time in ages I couldn't stop the tears from rolling down my face. It does me no good to look back, the focus must be the future.

Windy!

2008-01-20T00:15:00.000-06:00

It's been so windy that every leaf has fallen from the tree in our front garden. Emily, Tom and I decided to bury my car LOL

Christmas Lunch with Emily

2008-01-19T01:16:00.000-06:00

Choices

2008-01-19T00:51:00.000-06:00

I always have to make decisions, how do we know which way to go? When you have a chronically ill child you have so many choices to make each day. Your choices directly effect your child so which choices do you make. It's exhausting!!

In the beginning we trusted the doctors, what else were we to do? You grow up learning that doctors know best but something RSD has taught me is that this assumption is so very wrong. Doctors are not super human and some actually have no clue what their doing so a choice I made early on was to become my daughters medical expert.

I have an amazing primary care physician but no RSD specialist and no pain manager. I manage Emily's pain 100% every day. Texas doesn't really have anyone that can do the job because pediatric RSD is rare. Not wanting to have Emily used as a Guinea pig I withdrew her from mainstream doctoring. The results? Better I think :)

The medication Emily was put on made her vanish inside herself and regress back to a young child. I hated seeing this especially as her pain level was still extremely high. I'm glad I made the choice to remove all medication, it was a hard decision but the best one. Today Emily isn't "foggy". Her memory isn't what it used to be but hell mines pretty bad too LOL

Tom suddenly realized that Emily wasn't going to get well just before Christmas. I have always been open and honest with my son about Emily and answered his many questions as best I can but still he hung onto the dream that his sister would one day soon be "normal". Just like when you get divorced and children hang onto that dream that their parents will one day reunite. This realization hit him hard. He became angry then guilty because he felt angry LOL and just generally acted out. Throughout this last 14 months I have continued my Mom and Son date nights and my daily chats and I think this has helped. Open communication is the only way forward because the feelings Tom has is normal. He's only 10 and this is hard.

RSD means that you have to take each day at a time. Some days just stink, others are just ok and when a good day comes we dance and sing and live it to the full. What an education this has been.

2008

2008-01-19T00:02:00.001-06:00

We spent 2007 reeling from the shock of Emily's "accident" and dealing with issues such as finding a good doctor and financial strain. We also dealt with alienation from both of our families. Catastrophic illnesses effect families in different ways. Some pull closer and become super supportive, others pull away and fail to comprehend the magnitude of what's happening. Sadly our families are the latter. I'm not bitter. While I understand that RSD is somewhat invisible to the eye and I understand that they don't truly get it, I wont forget their lack of compassion. At the same time I wont allow it consume me. 2008 See's me walking on without them. I will not carry the baggage that is our families dysfunction so to them I shrug my shoulders.

2008 brings a different mentality here. Last year RSD ruled so many aspects of our lives, this year we must push it to the side. We've lived with the horrific shock of what happened and we've mourned the loss of the old Emily and now it's time to push forward into maintenance mode. It's not easy but I make the mental decision each day before my foot hits the floor in the morning that the day will be the best we can make it.

This year I go forward without my friend Steve. I miss him everyday. Knowing him made me a better person and I will continue to be the person he knew and loved. He taught me so much, he's my guardian angel. His body may be gone but he stands behind me everyday and gives me the courage to keep going.

Financially we're ruined LOL January bought all negative bank accounts and to many bills but I'm trying not to stress out. If I don't have it and I can't get it what's the point of stressing about it LOL I'm just going to end up broke and sick myself so I'm just trying to be relaxed. If I vanish for a while again you know they cut my power off LOL

Emily was pulled from school before Christmas because she just doesn't have the stamina to stay for a full day. Removing her from school is not the best option especially as home bound services offer only 4 hours of tuition per week. With everything Emily's education has now fallen into my hands. I'm learning algebra again LOL I hated it the first time!! Her RSD pain has been slightly better than before Christmas and I'm very thankful for that. I've learned to take the good days and cherish them.

Update

2008-01-14T09:03:00.000-06:00

It's been a long time since my last update. Christmas has come and gone and I'm trying to settle down into 2008.

Before Christmas Emily stared to decline so I stopped blogging to allow myself to take a breath during my only rest times. I can't live and breathe this 24 hours a day it's just to hard so I focus on the things that I can deal with and let the rest take care of itself, hope this makes sense.

Christmas was just wonderful. A special friend donated enough money to Emily's fund to allow me to create the Christmas that my children deserved. I was so down during the run up to Christmas because we're just so drained of money right now and I didn't know how I was going to pull off any kind of anything. My children would have made do with what I could provide and never said a word but I wanted so much for this year to be special because last year was just horrible. I can remember locking myself in the bathroom and sobbing after our scary Christmas lunch in the hospital last year, our world had fallen apart. I was so down about it this year and then along came a magic envelope with the promise of a real Christmas and again I sobbed but this time with relief. I'll never be able to thank Leaman enough for that gift, he really has no idea what an impact he had. Other friends also helped make Christmas special for us this year, we are so very lucky to have such amazing people in our lives. Thank you so much to all of you!

Christmas day was fun! I blubbed pathetically as the kids opened presents LOL It's hard not to be emotional! We bought Emily the present of her dreams, a cell phone! We called it as she unwrapped the present, she screamed! Tom got his dream present which was a PSP with Darth Vader on the back :)

New traditions were made this year and resolutions set. 2008 is going to be a much better year for us, a year in which we'll do what we can to give back to our community.

Time to freshen up

2007-12-12T07:43:00.000-06:00

Emily finds it really hard to tolerate water against her foot, even the air from the ceiling fan sends her through the roof so between baths I wash her hair in the kitchen. She doesn't like it but it makes her feel really fresh after.

Why?

2007-12-12T07:39:00.000-06:00

I'm frightened

2007-12-11T23:23:00.000-06:00

I checked on Emily throughout the night, she finally woke around lunchtime. It's been a while since I've seen her that pale but she smiled at me when I stuck my head round the door.

I did my best not to smother her today, I want to, I want to wrap her in soft fleece and hold her on my lap all day but instead I asked her to wash, cath and dress. She ate a small breakfast and took her antibiotics and we discussed our plan for the day. She moved slow today but I don't care as long as we have movement. We cant go back to last year where she had contractures in her leg and foot.

I was fragile today, no sleep and the thought of my child hurting so badly makes me really tearful. I tell myself that everything will be ok, I do my best not to focus on past events, I try my hardest not to be negative but oh my god when you've seen what I've seen what are you supposed to do? When you've held your child for 18 hours straight without a break and they're in total agony what do you do?? I hate myself myself for having a feeling of dread, I know it doesn't help and I punish myself for it.

I'm frightened that Emily will go back to that total agony everyday and I'm frightened that her RSD is going to spread further. I'm scared that my family will fall apart and I'll lose control of everything again. That Tom will be pushed to the side and that the financial pit that we continue to find ourselves in will swallow us because of the medical bills. I just want everything to be ok. There, I said it. I just want Emily and Tom to lead a normal happy life. Is that so wrong?

Agony

2007-12-11T01:36:00.000-06:00

Just a really difficult day.

I met with Emily's VP at school today for a chat about how we can help Emily go forward. It's been decided that she needs to go onto home bound schooling. Keeping the routine of daily life is very important for RSD patients so I'm not thrilled that Emily will no longer get the stimulation of her wonderful school but I know it's by far the best thing for now. I feel that Emily puts pressure on herself and that unknowingly so do the teachers. Of course they do, it's their job and Emily's teachers are just concerned that she's falling behind. Being home schooled for a while will actually catch Emily up but without the stress. We checked Em's grades and she's actually doing great on the work she can get in.

Emily's pain level has been up at a 9 for the last week and she's reaching the end of the line. I've been watching the barometric pressure change and the temperature fall and this has triggered a flare. I can only imagine how she feels with a constant throbbing, burning pain in her legs day and night. Tonight she reached panic mode. I could tell it was coming. Back were the tell tail signs, the rocking, the fidgeting the rubbing of the leg constantly, the pale face and the look of sheer panic in her eyes all sign I dread seeing. At 8 o clock she finally came to me and asked me to admit her to Cooks. Knowing what I know about Emily's fear of hospitals I took this as a massive cry for help and took action. I had been trying various things thought the day but nothing worked.

It's almost 2 am and the last 4 hours have been spent trying to find a comfortable place for Emily to lay. A position that she can maybe catch a little sleep possibly with reduced pain. We've medicated, creamed her legs for hours because sometimes FIRM massage helps, we wrapped her legs in fleece then covered them with a heated blanket. I distracted with TV, singing, chatting, guided imagery, hand massage, reading, music and hair stroking until a highly medicated Emily fell into a drug induced sleep.

Do I take her to the ER only to have them keep us waiting and not know what to do. Would our Neurologist be on call because if not it'll be a waste of time. Should I watch her all night in case she reacts badly to the medication that she's been off for a while. Will she wake up screaming, will she wake up? Can anyone ever truly help us ...

Back to that sick in the pit of your stomach feeling, back to the desperation and despair and back to the worst feeling of helplessness that you'll ever know. Am I supposed to sleep now? How can I sleep knowing what I know? Instead I write here in the hope that typing my thoughts will empty my head enough for me to keep going.

Tomorrow I start making calls to try to get Emily into Dr Shelly's hospital in Pennsylvania. I know the waiting list is long and the expense is high but I think we need to go.

A long week

2007-12-09T14:14:00.000-06:00

The whole family has been in major upheaval this week with the start of Pete's new business venture. My life was stressful before that this week it's reached a kind of lunar stress that almost blew my head off.

Emily's flare has been tough to deal with this week. A doctors appointment showed a bladder infection as predicted and more antibiotics were started. Time was spent with Nick (hip hop teacher) and his lovely family yesterday when they took Emily to a show where Nick dances. She had such a wonderful time meeting everyone and hanging out, how luck we are to have this great family. Emily's pain level has been at a 9 out of 10 all week and she's been on edge and crabby. The antibiotics have made her bladder more comfortable she tells me so hopefully her pain level will reduce in her feet.

Tom has become a money earner this week. He worked with Karen's husband packing and unpacking stuff for his casino parties, he very proudly came home waving a check for $60 that he's earned all by himself. He says he's looking forward to buying Christmas presents for his family with money that I didn't give him. I'm pretty proud of him right now. We did have to have a chat about honestly today because I'm finding that he's bending the truth on stuff like homework and general things that he really doesn't want to do LOL He's going to start fresh tomorrow and try as hard as he can hot to tell fibs. It's very much his age but I just don't want him to get out of control, he's not perfect just like anyone and I'm OK with the fact that he's only human. "Hellen, did you eat that twinkie??? Nooooo the dog ate it" LOL

Pete went from super wonderful to a complete butt hole and back again in a 15 minute period this week. The stress of the opening just about pushed him over the edge. Last week he was lucky if he got 8 hours sleep for the whole week so was totally exhausted so I'm trying to be understanding. I do have a tolerance level which is set pretty high, he's almost surpassed it so better start checking his food for foreign objects LOL

Me? I'm tired and I think I'm getting a cold. I know I'm run down because I've been working with Pete each evening until at least 2 am then getting up at 6 am and carrying on a normal day. I've been worried about Emily's flare up and all that entails and concerned that Tom's getting left out again. Stressed about money and frustrated with people who just don't understand what's going on in our lives. I wanted to cook and do crafts with my children this weekend but had to work instead and although I'm delighted to help I'm aware that the time with my children is limited and precious and I want to make the most of every second. All in all I've found this week totally draining.

I really wish I could call Steve and talk to him, his voice was always so calming. He went golfing in Hawaii this year and bought me back some spices. I've been drinking lattes with Steve's nutmeg on it so make myself feel better. He loved the smell of nutmeg. Wish he was here ...

Christmas

2007-12-07T01:47:00.001-06:00

I really want Christmas to be special this year for my family because last year was so upsetting but I'm stressed beyond belief because I don't know how We're going to afford to provide anything let alone the Christmas that they deserve. My children left me a little note tonight saying that as long as we're together as a family this year they'll be happy with nothing. Happy with nothing, wow ... What an amazing statement, I find it really distressing ...

RSD ... Really Stupid Disease

2007-12-07T01:35:00.000-06:00

http://www.youtube.com/watch?v=JOTUzQWbmYw This is a video about RSD made by a little girl Emily's age. The video covers many of the things that we've been though including PT, rehab and medication, it also gives a really good overview of RSD itself. What it doesn't show is how much pain she's in now and how much medication she still takes. It doesn't show the effects of the medication and how a simple virus can knock her off her feet. Maybe she hasn't got that far yet. I like this video, Emily and I have watched it many times including tonight at 1:30 am. I think it reminds Emily how far she's come and gives her hope.

We've decided to make a video this weekend ourselves just for fun and also to record this time in our lives.

The results of Emily's doctors visit? She has a bladder infection. The same one that she's had for months now and we just don't seem to be able to get rid of it. This infection is causing Emily to flare so I'm hoping the antibiotics will help us lose the cane. Emily's doctor and his staff are just so nice, it's like going home to family when we visit. We are so blessed to have them, they make me feel like I'm not dealing with this alone because all I have to do is call and they do what they can to help.

Hayden doesn't like the cold either

2007-12-04T23:25:00.000-06:00

It snowed on Thanksgiving day

2007-12-04T23:23:00.000-06:00

Slipping

2007-12-04T23:13:00.000-06:00

As each day goes by Emily is in more pain and my feeling of helplessness grows. She did really well today because she made it through her first day of school in over a week. I'm going to take her to the doctors tomorrow to get her looked at just in case somethings going. I feel that maybe she has one of the many virus's that we have going around and that's what triggered this flare up. I would rather not think about the fact that this could be round 2 and that the RSD is spreading instead I'm going to stay cautiously positive.

Tonight I spent 2 hours cleaning Emily's room. Like any other teenager Ms Emily lives in a mess most of the time. I know her energy is very much sapped right now so as a treat I decided to make it look amazing in there. Anything to put a smile on her face.

Karen and I went to the courthouse today to get Emily's disabled tag for my car. I was handed a permanent tag when I was really expecting a temporary one and I had to stop myself from bursting into tears in front of the lady behind the counter. I made it to the parking lot before I let it go. My daughter is registered as permanently disabled ...

Watch out!

2007-12-01T19:44:00.000-06:00

With the cold weather came intense pain for Emily. Her RSD is clearly in both feet now and walking is really hard for her. As I look at her strained expression I cant help but feel panic in the pit of my stomach but I fight it back as much as possible. With her pain comes questions. Should we start back on medication or work through it? Can we work through it this time? Do Emily and I have what it tales to go another round with this crippling disease.

My Plan of action.

It seems that warmth and sunshine helps this disease so I'm going to take up a friends offer and take a trip to their hotel heated pool so that Emily can float and have fun.

Our Christmas activities started today and I'm doing something christmassy with my children everyday for the month of December. Tom's in charge of food and Emily decorations :)

I started gentle pain relief in the form of children's Motrin. I know that she may revert back to vicodin but as long as I can I'm going to find other options.

I'm keeping the movement up, we start Yoga in the morning. I bought brightly colored Frisbees, we're off to play Frisbee golf! Despite being back on her cane Emily will continue dancing lessons with Nick. How I hear you ask LOL if you'd met either myself or my daughter you'd know. With total strength and determination that's how!

Lots of friends will be invited to my home this December to keep Emily's focus away from pain.

I'm going to look into vitamin D and other supplements for her. I read recently that 95% of illnesses are due to a mineral deficiency so I'm going to study this more and create a diet rich in the foods that she needs to keep going. She has to keep going ...

For me, I'm going to wax LOL I'm going to dye the newly grey strands out of my hair and pluck my eyebrows. Today I spent an hour in my front garden trimming my hedges and planting winter pansies. I'm going to continue the good fight because that's what I do best. Look out RSD, I'm comin to get ya!

Elvis

2007-11-29T19:42:00.000-06:00

My thoughts tonight are for my dear friend Karen and her family. Elvis (the cute guy in the middle) passed away today. I know he was 12, I know he was sick but I also know that of all the dogs I've ever met he was the coolest. He was a gentleman of vast proportions sometimes stinky but always loyal and loving. He was a lover of cat food stealing and coffee beans which he liked to scatter randomly around Karen's dining room filling the house with a starbucksy aroma, he liked to rise in the morning in his own good time and he always looked at you with wise eyes that told me that he'd been here before. He liked to use the restroom in private either hiding behind the wall in his garden or with his back to you, he'd look over his shoulder at me as if to say "hey, can't you see I'm peeing here" He enjoyed trash especially the stinky kind and the occasional cookie that was left just in his reach. (He was a great Dane so just about everything was in his reach!!)To me it's like losing a buddy so I can only imagine how my friends feels tonight. My thoughts are with you guys. Sleep amongst the clouds sweet Elvis, I love you ...

My Confusion

2007-11-28T00:15:00.000-06:00

This has been a tough year. For me it's taken it's toll on many areas of my life, the relationship with "friends" and family, financially, mentally and physically. It's no secret that I now carry a few extra stress pounds but a diet will have to wait until I feel able to commit to it 100% and now definitely is not that time. I look old and tired in fact I hardly recognise myself these days but again when the time's right this to will change. Financially it nearly ruined us. At times I've wondered if we'll keep the house until Christmas, if we'll have enough money to buy school supplies, fruit and vegetables and things Emily and Tom need for basic living.

Mentally this year I've been pushed to the limit. In the beginning, the thought of jumping off the hospital roof holding my daughter didn't seem as scary and ridiculous as it does today but you have to understand the extreme stress I was under. For 3 1/2 weeks I lived off black coffee and food from a vending machine, very little sleep especially as I had only a wooden rocking chair. Thanksgiving flew by in a blur. I missed our normal Christmas traditions starting with my children on Christmas eve and this made me really sad. I didn't wake to happy squealing children on Christmas morning, I woke to beeping, to "sorry, just let me take your vitals", to crying and to acute disappointment and despair.

Ask any mother with a chronically ill child and they will tell you that during this time you keep your head down and focused on keeping everything together. You can't look up for a second because if you do you'll lose it. If you start to cry you'll never stop so just keep your nose down and push to the end. Mom's with sick kids need gentle help. You have no idea what it's like to be a parent in control of everything one minute and the next you're free falling through the air not knowing where you're going to land. If you're like me you'll try to do it all alone until one day you're so sick you fear you might collapse and you finally admit to your friends that you need a little help. If you're lucky like me you'll have a group of special people who try to catch you. I'm very bad at asking for help, always have been and actually I've very unlikely too LOL but really good friends know what you need and just do it.

The people who you would think would jump in with both feet are our parents but sadly both have fallen by the wayside this year because they don't get it. I write in this diary each week to keep them updated, this is as close as I can get to actually screaming HELP US! Help me feed my children, help me play with Tom, help me pay a bill, do laundry, cook. Help me do the things I'm failing at because I can't be everywhere at once. Tell me it's going to be OK, that I'm doing well, that you're proud, hold me ... Don't sit in silent judgement because you're just not getting the attention that you think you deserve, jump in, do something. Don't make me beg. How dare you ...

Today Emily is back to using a cane. Can you imagine how that makes me feel? How Emily feels? I'll pull strength from somewhere to stay positive and get Emily back from her flare up because that's what I do best but please don't expect me to "be there" for you because my nose is to the floor and I'm pushing to the end. Don't tell me that my silence is " no way to ask for help and it's about time I learned that" don't tell me that "No Christmas presents for you until you come here (5 hours away) and get them". Don't you people realize that you can't come first? That my fight is a tough one and that I need to stay focused to be everywhere and do everything that needs to be done. Why is it so hard for our families to understand? Why?

I don't know why it's so hard for our parents to understand because we are their children and we're struggling. What parent wouldn't want to be there? I won't forget but I can live with it, I just hope they can ...

November

2007-11-23T01:39:00.000-06:00

October

2007-11-23T01:37:00.001-06:00

September

2007-11-23T01:36:00.001-06:00

August

2007-11-23T01:35:00.001-06:00

July

2007-11-23T01:31:00.001-06:00

Medication and brace

June

2007-11-23T01:27:00.000-06:00

May

2007-11-23T01:24:00.001-06:00

April

2007-11-21T02:27:00.001-06:00

Physical therapy and pain

March

2007-11-21T02:25:00.000-06:00

Wiped out on medication.

February

2007-11-21T02:20:00.000-06:00

Diagnosed with RSD and peripheral nerve damage in both legs.

January

2007-11-21T02:17:00.000-06:00

Total agony

December

2007-11-21T02:14:00.000-06:00

3 steps with her walker and in yet another rehab

The beginning

2007-11-21T02:13:00.001-06:00

Lets jump!!

2007-11-21T01:24:00.000-06:00

It's been 1 whole year since Emily was injured so we had a party!! Just over 1 year ago my dear friend Karen invited my children to a giant inflatable adventure playground but sadly Emily felt under the weather so wasn't able to go. When we realized the extent of her injuries Emily looked at me and told me that if only she'd have been able to go because now she never would again because she'd lost the use of her legs. This broke my heart.

I decided then and there that Emily would have goals. Each month I would set her a task until one day she would be able to function medication free and go jumping with her close friends. Today she achieved her dream. Stage one back 1 year ago was to get her to sit up just for a few seconds. From there she had to sit without help or support. Next came sitting on the edge of the bed for 1 full minute. 5 minutes followed that then time out of the room in her wheelchair. Slowly she achieved her goals and we progressed. Our main objective was to get her feet on the floor so we used animal weights. Emily had to put a mouses pressure on her foot followed by a rat, a cat, a dog, a monkey, sheep, horse and finally full weight, the elephant. By Christmas last year she reached Horse.

January bought elephant and a new challenge. The walker!! "Just 3 steps Emily, you can do it!" First 3, then 5, 10, 15, 20, 30, 50 and finally one lap round the house. All the time Emily's leg was up like a flamingo and locked in that position. We did extensive PT until April when she had botox in the back of her leg, an epidural was placed in her back to help with the pain from the massive PT that had to be done to "break" the hold on her hamstring. Another month long hospital stay.

In May her AFO was fitted and a Cane introduced. Again 5 steps then 10, 20 then once round the unit until 1 day she could walk with no Cane just a gain belt for support. We pushed on until 1 day she took steps alone, pride burst from her like beautiful fireworks and she danced again for the first time. Humble isn't even close to how this journey has made me feel. With each scared step I've been there for her holding her hand and willing her on at that time we were almost an extension of each other as my energy drained into her.

More goals were set for her and I set them high. To get her back to anything like a normal life she had to see a flicker of hope, progression was the key. She had until the end of June to teach herself to swim with 1 good leg in our pool, she did it! She had until July (her Birthday) to jump on our trampoline. A simple task to most but to someone with RSD in one foot this is extremely hard.

August's goal was to play beginners tennis and guess what? She made the final! In September she had to do 4 full days at school per week, October her goal was to take Hip hop classes and to kick all medication.

What was Novembers task??? To get back to lets jump with her friends and participate just like everyone else. With great pride I can confirm that a fun time was had by all tonight and as she's settling down for bed a huge feeling of achievement lays firmly on my daughters shoulders and rightly so.

Our next goal? To be at lets jump this time next year but with no brace and with more stamina. Congratulations Emily, this day was yours and I'm so very proud of you.

Wii sims after the show

2007-11-20T11:21:00.000-06:00

Emily and Andy

2007-11-20T11:19:00.000-06:00

Alice in Wonderland

2007-11-20T11:15:00.000-06:00

Props!!

2007-11-15T22:02:00.000-06:00

It's been a while since I posted because it's been insane here. Emily was one of 3 prop masters in her school play and that pretty much turned me into a taxi. With Tom's school time being different from Emily, play practice and doctors visits I've been zooming around all over the place.

Alice in wonderland was amazing. Watching Emily slide about on her stomach under a small rectangle of wood handing props to the actors took some getting used to. As you know I'm all about shoving her out there to live her life but this pushed me a little far outside my comfort zone. She told me it was OK, that only 2 people had stepped on her so far!! then proudly showed me a perfect footprint on her side. She's smiling and enjoying herself so what more could I ask. The play has filled her with a sense of normalcy so I'm looking for something to replace it now that it's over. I think I'm going to enrol her in a babysitting training course so that she can learn CPR.

Tom cooks baked Alaska

2007-11-04T00:10:00.000-06:00

While "cooking with Sam' takes a break from Thursday nights I'm taking him place. Today I taught Tom how to make the perfect baked Alaska. What a great job.

Emily and Andy

2007-11-04T00:09:00.000-06:00

Best friends since 2nd grade.

Scary!

2007-11-04T00:07:00.000-06:00

Carving her pumpkin!

2007-11-04T00:06:00.000-06:00

Free smiles

2007-11-03T23:25:00.000-06:00

I've added a new link to Emily's blog. You don't have to download a ring tone but I can't add "cuppycakes" without the link below. Click the play button, trust me it'll be so worth it!! Emily absolutely LOVES this little song it's guaranteed to put a smile on your face.

Babysitting

2007-10-28T01:10:00.000-06:00

Saturday was spent working at Emily's school. At the last minute it was decided that the stage was going to be sanded back to wood and stained. Emily had a wonderful time babysitting a 2 year old. I'm going to have her attend a babysitting course at the YMCA but I can tell already she'll be wonderful.

We hate the vacumn!!

2007-10-27T02:41:00.000-06:00

Almost a year

2007-10-27T02:29:00.000-06:00

I can't believe that November is almost here. Next week will be fun because we have Halloween!!! The 8th of November marks the day that changed Emily's life and I'm not sure what to do on that day. The temptation is to avoid it. Not bring it up to Emily and blast through it in denial. I however as most of my friends will tell you, I'm different, I'm going to have a party LOL

When I think back to November the 8th last year, I remember the second that I knew something had gone terribly wrong and the frustration that followed. On the 8th we'll celebrate getting through a tough year with our sanity intact. We'll celebrate Emily learning to walk again and Tom being such a supportive little guy. We'll celebrate Pete's love and support, my strength to carry my family through this and we'll count our blessings for the many friends that have helped to catch us when we were falling.

We achieved so much this year just think what next year holds :)

Check ups

2007-10-27T02:20:00.000-06:00

We several doctors on Wednesday.

Neurology first at Cooks. Emily's doctor here is realistic but kind and was shocked to see how far Emily had come in the 5 months since we last visited. He diagnosed Emily back in March I remember the day well. Emily fell asleep in the car and I cried all the way home. 2 conditions were diagnosed, RSD and peripheral nerve damage. I was told that the future was cloudy and unknown. Seeing his face as Emily walked in was pure bliss for me and I almost burst with pride!

Pain Management was next. Dr F. also delighted with Emily told me that somehow I have to get Emily to Arkansas to the RSD specialist there. She may need nerve blocks to help slow the spread and they can't do them here. Right now money is so tight that I can't even entertain this but I'll do my best to get her there after Christmas.

Both doctors were happy to see her medication free and impressed with her strength and determination. Yayyyyy Emily!

Ha!!

2007-10-27T02:14:00.000-06:00

Medication? I laugh in the face of medication!

Day 7

2007-10-27T02:12:00.001-06:00

Still no medication. Today Emily's pale with flushed cheeks so it looks like she may be getting sick. Her pain is increasing in her foot but she asked not to be given medication. Right now she's curled up in a tiny ball fast asleep.

For Steve

2007-10-25T20:04:00.000-06:00

Why I do this blog?

2007-10-25T18:54:00.000-06:00

Why do I take the time to write this blog? This question was bought to my attention today while I talked with a family member. Why? What's it for? Why do I sit here tapping away around 20 times every month sometimes in tears. Why?

Emily's illness is hard for me to talk about. In the beginning I had many people who would call me several times a day for an update. With each phone call came emotional distress and I became unable to cope with things everyday because the calls drained me. How's Emily? Tell me, how are things going? Oh my god, what happened? My friends, colleagues, family, teachers, people in Starbucks, all well meaning. The words "what can I do" followed in some cases "how can I help". So kind but so very draining. Each call made this nightmare real to me. Sure you can live in denial all you like but sooner or later the sh*t hits the fan and BANG there it is, my child is changed forever.

So I started this blog. People had a right to know what was happening to us as a family, to Emily. I felt bad because I just stopped taking calls because to get Emily through this I have to be strong. I carry a huge burden each day, HUGE, unimaginable to most people I'm sure but there it is. In order to get Emily where she is today I have to be a master of distraction. Counselor and nurse. I have to greet each day new and fresh and encourage Emily to do the same. Over time this have become easier and my hard work has been rewarded over and over again. I just have to stand back and watch Tom and see how great he's doing in school and how happy he is now. Looking at Emily I see a strong and wonderful pre-teen who's funny and compassionate. I see bright colors in my home and dashes of art here and there which I have created either with my children or alone. I see thousands of dollars worth of medical debt which I juggle each day and funnily enough make work. I'm doing what needs to be done.

This blog helps me to decompress. It helps organize my thoughts. It is my counselor and my therapy. It clears my mind enough for me to greet each day and it informs friends and family how our life is and why if I don't return a call it's not personal it's just my life.

Amazingly from time to time I run into people that really don't get it. They can't grasp that talking on the phone and answering questions about what happened to my child drains the life from me and makes me very upset and for the most part those people have fallen by the wayside over this year. Today my only focus is to lift my family from this horror and keep going, other peoples feelings are hard to take on board at this point especially when this blog exists to keep them informed.

In the beginning a rift was formed between me and my family in England. They just don't get it despite actually visiting here in the beginning when Emily was seriously ill. What's not to get? Either roll up your sleeves and do something or back off. Come here and help with Tom, help my husband and reduce the stress, run my home while I'm in hospital with my chronically ill child, pay a bill, something, anything. Now is not the time for me to beg for help from anyone and I will not, ever. I have no time to focus on anything else other than all I have going on here and I make no apology for that because anyone in this situation would do the same. Today I found out that even though this blog has been sent to my family, they don't follow it. It blew my mind.

RSD has been like a giant sieve. It sifted people who are truly real and wonderful out from people who are just along for the ride. The people who care enough to read my posts and comment with words of wisdom, My angel Steve, those who have donated to Emily's fund no matter how much, the fundraisers like Cheryl and the British emporium, my "I'll be right there" friend, the lumberjacks and viking, my "don't move I'm calling right now" friend, my computer genius, the special people at Emily's school who give her the confidence to walk in each day and keep on walking, our PT, our chocolate store friends, Emily's rat supplier, hip hop Nick, those who send little notes, other RSD sufferers (Renee and Judy) that laugh through the pain and show me a way forward and those who just come to me with rolled up sleeves ready for action are just amazing. You know who you are :) To you I say THANK YOU so very much. WE have got Emily this far, we as a team and together we'll keep Emily walking ...

Medication across the nation

2007-10-25T14:55:00.000-06:00

It's been almost a week since I posted last because it's been crazy here.

This picture was taken a few weeks ago and shows the vast amount of medication Emily took in a week. The side effects were disturbing. Bizarre behaviour and mood swings, rocking, hair loss, severe fatigue, dizziness, memory loss, confusion, regression, dry mouth, loss of balance. One of the toughest things for me as a parent of a child with nerve damage and RSD has been watching my child in constant pain and making her take all of these pills. The side effects were nasty but without them Emily couldn't function because the scalding feeling in her foot was so severe. I've watched my daughter vanish into a foggy cloud for almost a year and I truly hate it.

Finding someone to manage the pain proved to be impossible because just when I found someone Cooks children's hospital pulled the pain management team. Our first pain management guy made me feel like I'm the one making my child sick which really didn't help at a time when we were in acute distress. Who deals with Emily's pain management now? ME!!

For 5 months I've been weening Emily from her medication. First went the gabapentin. I reduced it from 1500 mg per day down to 400 and then we hit the burning pain again so we had to stop. Next was the narcotic medication. I changed her dose just slightly week by week until we could switch to a different (lower) narcotic. Once there we reduced further week by week. Some days we had to abandon our plan and go back to heavy medication because the pain was to hard to deal with for Emily. My aim has never been to distress my child so it's OK to go back back if she has a flare up. Once we got the flare up to pass down we went again until she only had medication when she asked for it. Anyone who knows Emily understands that she just wants to be like everyone else so no one strives harder to be medication free. Her average dose was half of a 5/325 narcotic twice daily. 3 weeks ago we dropped to once daily. 2 weeks ago I dropped the gabapentin to 200 Mg's a day then by the end of the week down to NOTHING!!

Today (this makes me cry) Emily takes 1 pill daily, it's small and brown and called a............................MULTIVITAMIN! No medication. No more narcotics and no more brain bending gabapentin. Today is day 6!

We'll take this each day at a time. Some days Emily will have to take something to help with the pain. Flare ups are common and I know we could go backwards fast at any moment but I choose not to dwell. Is she in remission? No. Emily still has pain and it's chronic but we've changed her lifestyle dramatically and also found ways to work through it. For me it's a major win against this terrible disease and a time to reflect on this bumpy journey. For Emily it's a time to dance and sing and just be 12.

My Tom

2007-10-19T19:16:00.000-06:00

Sometimes you just have to grin and bare it!

2007-10-19T19:02:00.000-06:00

Our hairy situation

2007-10-19T17:29:00.000-06:00

It's been almost a week since Emily started losing patches of hair and so far so good. She has a patch on top of her head that sticks up on end like a parrots flume feathers! I'm looking into getting a single hair extension to bond to these "trouble" hairs the same color as hers because these hairs are distressing her.I'll figure something out!

Cooking with Sam

2007-10-19T17:02:00.000-06:00

Tom missed 2 days of choir practice this week because he had a virus so yesterday he got kicked out. Are you getting the feeling that they don't want him there by any chance?? I called and left a message for his choir teacher and spookily she didn't call me back. My message asked since when did we penalize people who are sick? Since when was it OK to treat people this way? Tom's OK and that's the main thing. Taking choir meant that he'd miss his club day once a month and since he made young chef and is so excited about it I'm having him go there instead. I'm very proud that Tom made choir and that he did so well to put himself out there. If he chooses to take his singing further I'll do what I can to get him in a different singing group but for now he wants to concentrate on his cooking.

As many of you know Tom has really struggled this year. It's not easy when you have a disabled sister. Once when things were different, Tom and Emily used to skip to the park and play. They played basketball outside and bounced on the trampoline. I was always here, meals were good and nutritious and always eaten together. When Emily became sick Tom had to learn to cope alone and that was so heartbreaking for me. In total I spent over 3 months in hospital with Emily leaving poor Tom without his Mom. He was lucky because many people love him and my great friends did there best to take care of him but at the end of the day he needed his Mom.

Things are getting better day by day and Tom has settled back down to straight A's at school and his happy go lucky self. "The big protector" the girls call him at school LOL What an awesome little guy! In the beginning Tom's grades dropped from A's to low C's in 1 month but now he's loving school again and bring home great grades.

As you can see from past posts Tom and I watch "Sam the cooking guy" on a Thursday evening and then race to the store on Saturday to buy ingredients to make one of his Fab recipes! Last night we missed it so I logged on to Sam's website to see if I could find a recipe for this weekend and there it was, Sam's contact info! I decided to email him on the off chance that someone would reply and they did!! Tom really deserves something wonderful to happen to him for a change and Sam's assistant is going to get Tom a signed picture :) I'm really excited!

Take a look http://www.thecookingguy.com/ buy his book, it's worth it. His cooking style is what Tom would describe as crazy, messy and fun. He's health conscious and cuts fat when he can. His dogs sleep on the floor while he cooks and he keeps his dishes on his dining room table. Bottom line, he makes my son happy! Thanks Sam!

Hair

2007-10-15T10:28:00.000-06:00

Emily's hair has started coming out in clumps. Today when I went to put her hair in a ponytail I noticed a big clump of her hair missing and small strands are sticking up. Last week I noticed that her hair was uneven on one side. Emily has shoulder length hair and it's all one length so I'm confused as to why she has a patch by her ear that's very short. I took Emily in to have her hair trimmed last Wednesday and it looked wonderful. The hairdresser never commented on short areas and I sort of wondered if she'd messed up and cut it by accident. Today this patch is new and unmissable. I've hunted in her bedroom and I haven't found any hair or haircutting implements and I know that it's the last thing she'd do because she loves her hair.

I do know that hair is a direct window into the central nervous system and when that's not healthy nor is your hair. Through bouts of severe stress my hair has often been dead straight, scary straight so I know this first hand and I can also see a difference in the texture of Emily's hair. This disease has taken so much from Emily, it needs to leave her hair alone. If she loses her hair I'll cut all of mine off too and we'll have a baldathon to raise money to buy us matching Dolly Parton wigs. Back off RSD, BACK OFF!

Goofy

2007-10-14T16:49:00.000-06:00

Emily's sense of humor has carried her a long way.

Garage sale

2007-10-14T16:45:00.000-06:00

Last week we held a 2 day garage sale. We made just over $300 and cleared a whole load of blended family junk. When the children and I moved here both Pete and I had things that we felt were to important to part with but as it turns out we were wrong. Both of us cleared tons of old possessions, put some money back in the bank and created a fresh start.

Wednesday

2007-10-13T09:04:00.000-06:00

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

2007-10-12T17:37:00.000-06:00

Trouble makers!

Monday

2007-10-12T17:35:00.000-06:00

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

Monday

2007-10-12T15:12:00.001-06:00

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

2007-10-12T15:02:00.000-06:00

Cat attack!

Tom

2007-10-07T23:57:00.001-06:00

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

2007-10-07T23:23:00.000-06:00

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

2007-10-05T00:24:00.000-06:00

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

Just a little outburst ...

2007-10-04T23:30:00.000-06:00

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 ...

2007-10-01T01:37:00.000-06:00

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 ...

Taxi!

2007-09-29T23:19:00.000-06:00

Wow, what a day!

Today was spent shuttling kids to and from various activities, at one point I had 6 kids in my house! LOL

Emily, Andy and another friend are in the school play, Alice and Wonderland! Andy is singing in the choir and Em plus friend are doing props. Today I led a large group of kids (Emily included) in painting the stage black with all of its platforms. The kids worked really well and I actually had a lot of fun! Emily volunteered me to do everything art involved with this play! LOL

Karen took Tom to get a free download for his Nintendo DS, he had lots of fun and even got to eat ChikFilA. Then he came home for a play then went back to Karen's for even more fun.

Emily came home from the play with Andy and they had a break. Sam (Andy's sister) arrived with her friend Mary to complete my 6 kids. Tom, A, Emily, Andy, Mary and Sam all played Wii before returning to Andy's house for the evening.

It turned out that I had several hours alone, very rare and totally ruined by my headache LOL

Emily came home exhausted but happy that to have a great day. Tomorrow will be very slow for her but as Judy always says, pain urned is better than just having pain for no reason.

Tomorrow Tom cooks lunch again :)

Lost treasure

2007-09-27T20:46:00.000-06:00

I was driving home tonight when I suddenly remembered Steve had a blog. He only posted on it 4 times and he posted several messages on my old blog so tonight I found them and printed them off. I miss him. I miss him alot ...

Wednesday

2007-09-26T23:00:00.000-06:00

I was pretty concerned about Emily after her visit to the play therapist. When we got home she looked terrible so when I put her to bed I made the decision to let her sleep in. I know from experience that if you push Emily to hard she'll flare up so sometimes I just have to be the parent and make the call to keep her home. At 1 pm she finally woke up and was pretty much out of it all day.

After a quick subway (where she spilled her whole sprite on her sub and all down herself) we met Renee for a chat.

Overall it's been a slow day for Emily which I think it good. Tomorrow after the gym I'm meeting with the vice Principal to talk about keeping Emily home every Wednesday and possibly having the home school teacher come that afternoon.

Frustration across the nation

2007-09-25T22:28:00.000-06:00

I'm not sure what's going on but Emily is back to how she was in the beginning when the medication started. Goofy and silly. Both her therapist tonight and Kelly PT noticed how much she has regressed. Right now she's around the mental age of 9 in the evenings. I'm hoping that this is just because school is very demanding and she's exhausted. Tonight she was delirious and fell asleep in her dinner. I'm seriously thinking of home schooling tomorrow so that I can observe her. Maybe it's the antibiotics for her bladder infection? When I woke Emily today I knew something wasn't right and I was shocked that she made the whole day at school. I spoke with one of her teachers early in the morning because when Emily got home last night she had forgotten where her homework was and what she was supposed to be doing so I called to ask for class notes. The teacher wasn't overly happy to be speaking with me really and wasn't sympathetic. It's the age old problem of Emily looking somewhat "normal" and people not taking the time to look at RSD closely. They assume that I'm making a big deal about nothing. This makes Emily so mad for several reasons but it's because she works so hard to overcome her pain. They make me feel like a psycho! These days I just try to except that some people will jump to this conclusion and it's mostly because I do my job well. People only except what they can physically see and with Emily other than her brace it's all inside. Both Judy and Renee who also have RSD have told me that they felt he same way and it frustrates them. You can't change this so for now we'll just deal with it, shame on them ...

Take a look

2007-09-25T12:53:00.000-06:00

http://www.affirmagy.com/Page.bok?template=about

I found this amazing website today, take a look and do something for Breast cancer awareness today. They have the most gorgeous blankets with affirmations on, I'm looking for one for Emily and Tom.

"RED"

2007-09-25T12:32:00.001-06:00

I'm nervous ...

Each day while Emily's at school she'll call several times from the nurses office to say that she's cathed or that she's taken medicine. I know that sometimes she just needs to hear my voice so I try to be a little goofy when we speak so it lightens her mood. It's hard.

Today the call was different. Emily was so hard to wake today I thought she was going to be late. I washed, dressed and cathed her in her bed then finally stood her up to do her hair. She looked pale and sickly. My first call came at 10:05 am "Mom, I found it hard to cath at school, something is in my tube". A little reassurance that all is OK, I crack an inside joke then it's back to class with her.

1:00 pm and she just called. "Mom, my arms hurt". My heart jumped and I felt sick. "My arms hurt and both of my legs have been aching all day". I detect panic in her voice but spoke softly so's not to show that I feel it to. The nurse told her that she had to wait 25 minutes until her next medication is due and she didn't know what to do. The nurse is correct she does have to wait, her medication is strong and can't be taken close together but Emily is beginning to lose it. I send her to her beloved Mrs S. and hope she's in her room, I'm waiting for her to call me and say our code word, "RED". If I hear it I have to go immediately and pick her up but she wants to stay, she wants to do well at school and in just over a month she's never used it. I want to go there, I want to drop everything and drive there at top speed and rescue her from this situation but this is my torment. Setting her free to find a way to cope alone is both humbling and scary but necessary if she's going to lead a "normal" life. As Moms we rescue our children from harm, or so we should, but in this case I have to allow her to go out into the big bad world and learn to survive.

I'm going to wash my kitchen floor and keep myself busy until schools out, I'm going to try to let my anxiety wash away instead of consume me.

Home schooling

2007-09-23T23:30:00.000-06:00

Sunday, since school started has become our school day. Both Pete and I have noticed that since this all began Emily has lost her short term memory and right now it's the worst it's been. Today she had to complete a project for American History and oh my goodness it was hard work. The project itself wasn't that much of a challenge but Emily just couldn't keep the information in her head. I find it distressing because she never used to be like this but I don't show her that I notice. Today I repeated the same information over and over and over again even thought it was written in front of her. She'd even forgotten that the information was written on the sheet in front of her and when I said "look, there it is" she'd look shocked and then happy to see it. This being said you can imagine how it feels to send her to school each day. I've been working tonight on tools to help her remember and I have a new note pad and pen waiting for her for the morning. Maybe writing notes to herself will help settle her in some way because I think some of this is just being totally overwhelmed with school. Fingers crossed. Emily's project was finished after 3 hours and it looks great. She got a great deal of satisfaction from completing her task even though it was frustrating in parts. Good job girlfriend!

Tom cooks dinner

2007-09-22T21:51:00.001-06:00

Guitar lessons with Zach

2007-09-22T21:47:00.000-06:00

2007-09-21T23:23:00.000-06:00

Well it turns out she couldn't refuse it. A quick phone call and the situation was corrected. You can't get someones hopes up like that then squash them especially not to my son and especially not now. I've not seen him that excited in a long time, he really tried hard.

Congratulations little boy, you're in :)

How can you refuse this face???

2007-09-20T14:32:00.000-06:00

Choir

2007-09-20T14:28:00.000-06:00

Tom was picked as one of 3 top singers in his class and got to try out for choir. He was so excited!! Everything went well until he was asked to sing an absurdly high song which he was unable to do. He was then asked to exit the room. :( Poor TOM

I'm fighting the urge to drive to Tom's school and ram the baton somewhere grossly inappropriate!!

Karen's Blog

2007-09-20T14:26:00.000-06:00

http://karenkraziness.blogspot.com/

My friend Karen started her own blog! I'm looking forward to reading it :)

Boundaries

2007-09-19T20:30:00.000-06:00

This is such a balancing act. I've found that discipline has slipped since Emily was injured and I'm having to enforce the boundaries with both Emily and Tom. It's easy to eat badly, relax bedtime and generally let things slide if you're not very careful. Manners have always been important to me and I've promoted a healthy relationship between my children because it's important to me that they get along. Some things have begun to slip so I've worked hard this week reestablishing those boundaries and things are getting back to a different kind of normal.

This week I've been back at the gym! It's time to take care of myself for a while because I've given so much to everyone else and now I look a little unhealthy to say the least LOL I've started scrap booking to help my stress and I'm loving sorting through my photographs. 6 months ago I would sit and cry when I looked at Emily before this happened knowing that she was changed forever but now I don't look at things so negatively and embrace the new Emily. Some days she's missing. Medication takes her far away from time to time but then on other days she's back and that cheeky grin reminds me that she's still in there. I look at the photo's and smile, I to have come a long way ...

What's bread without a little cat hair?

2007-09-19T20:26:00.000-06:00

Banjo

2007-09-19T20:14:00.000-06:00

My day was spent trying to figure out which bills to pay to get creditors off our back. I want to pay some bills then treat Emily and Tom to an adventure to Oklahoma zoo. I also hope to take the children to Arbuckle park. When I was a little girl we lived near woburn safari park, we could drive through the park and have monkeys hop (and steal car parts) all over your car. Since we've immigrated to Texas Woburn is a little far so Arbuckle is the next best thing.

http://www.arbucklewilderness.com/about.htm

It's a good feeling to be able to write checks to these people knowing that for a while at least they'll stop calling and giving me a hard time because I can't pay them. As good as I am at ignoring them I still hate getting the calls.

My office is a mess! I have papers all over every surface. I'm trying to keep Pete's business going as well as deal with my car accident paperwork from March. Medical bills from Emily plus some from Tom's broken foot last year. School paperwork for both children and bills for the house. So much to organise!! Luckily I'm good at this!!!

Tom's struggling a little to keep up with our fast pace and I don't want him to get left behind. I spent time with him tonight making bread. Pounding the dough is a great stress reliever for us both and I love spending time with him. It's amazing what you learn when making bread with your child plus you get a great end result. Tom made a banjo LOL Not sure why, lets not over think it LOL