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.
Friday, July 31, 2009
What happened?
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 ...
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 ...
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
Wednesday, April 30, 2008
Friday, April 25, 2008
Storms, balls and the circus
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 ...
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 ...
Saturday, April 12, 2008
Update
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.
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.
Sunday, March 23, 2008
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