My 100th post is a picture of Sophie, Tom's new Birthday Rat. She's a great little companion for Tom, she sits on his shoulder.Saturday, June 30, 2007
Sophie
My 100th post is a picture of Sophie, Tom's new Birthday Rat. She's a great little companion for Tom, she sits on his shoulder.
Holy cow!
I got the bill today from Cooks Childrens Hospital for Emily's stay in Rehab, $63,153.89! Insurance paid $12,000 and this is what remains. It took a minute for my brain to register what my eyes were seeing I must admit LOL Sixty Three thousand dollars, HOLY COW!
Friday, June 29, 2007
Paula Abdul
OK, so I watched the new Paula Abdul show tonight. I watched it because she claims that she has RSD and that the medication causes her to be erratic. I've often wondered why she doesn't stand up and be a great spokesperson for the condition and now I know why. She doesn't have it LOL She was behaving just like Anna Nicole Smith did when she was popping vicodin and other scary drugs, it was pretty hard to watch. She was seen working non stop and not sleeping. I can understand that from an RSD standpoint other than that if she really worked her body that hard she wouldn't be able to move. She didn't talk about RSD at all and I feel that if she really had it she would have used it to explain her drunken interview disaster. Although I spent the whole time horribly embarrassed I couldn't help but watch LOL It was a lot like a car accident. We'll see, maybe it'll get better. (I'm not holding my breath)
Thursday, June 28, 2007
Judy and Emily
On Tuesday Emily met Judy in our make shift living room. Comfy chairs and lovely drinks what more can a girl want. Judy has been living with systemic RSD for 17 years so can relate to Emily on so many levels. We share a sense of humor and a positive attitude so the 3 of us got on like a house on fire. Judy has an amazing spirit just like Emily, just look at the picture!Monday, June 25, 2007
A busy week
This week we have doctors visits each day. Neurology, Urology, Pain management, play therapy, PT and orthonic clinic. Thursday my Tom turns 10!! Hopefully Emily will be able to join in with the Birthday fun. Like everything in our lives these days we've modified the day slightly. Last year the kids enjoyed an action packed day, they ran and ran all day long until they finally collapsed at midnight. This year the trick is modifying the day without Emily and Tom noticing that it's different! As much as possible I like Emily to join in so I have to make sure we do something that she can do with a brace. The last thing I want is for her to feel restricted in any way because I can only imagine how that would make her feel. She has to lead as normal a life as possible despite having RSD because if you give into it RSD will own everything that you do. This year I'll let Emily and Tom sleep in for a while then at lunchtime friends will arrive and we'll zoom over to a play centre. Financially this year is difficult due to medical bills but we'll stay at the play centre until we run out of tokens. The kids will go home for an hour or 2 so that we can re-group then I'm having a pool party in the evening. Pizza, pool and play followed by a sleepover. I know that Emily will suffer for several days after Tom's Birthday, I'm getting all doctors visits out of the way so that she can take it easy for a day or 3 after BUT a very wise friend told me that the pain she earns is way easier to cope with than pain she did nothing to deserve and I know Emily agrees. We'll just continue to take each day as it comes ...
Friday, June 22, 2007
A deep breath ...
We spent 6 hours in Cooks Children's hospital. Emily was weighed and had her blood pressure taken then taken through to a cubicle in the far back of the ER. A very abrupt nurse made small talk for a moment or two then hurried way. A doctor saw us after about an hour and talked about her lack of knowledge where RSD was concerned and that she didn't really know what she could do. Both anesthesia and Neurology were paged. The anesthesiologist that had asked us to come to the ER decided that this wasn't his problem and therefore he was "unable to offer help at this time" and Neurology scratched their head and said "up the gabapentin 100 mg per day". Despite Emily's uncontrolled chronic pain our discharge papers were given and Emily was lifted back into her wheelchair ready to leave. The abrupt nurse now sat at the nurses station outside our room. She was totally unfriendly and clearly not suited for a job in a children's hospital. She never said a word when Emily said thank you as we were leaving ...
The drive home was tough, Emily struggled to keep it together and when I lifted her into bed she broke down. The fact that they refused to help wasn't lost on my 11 year old. The fact that because they don't know what they're dealing with intimidates them into behaving badly also isn't lost. Emily can see them treat me like I'm making all of this up despite the physical attributes that Emily has and the chronic pain that she's in and it makes her feel horrible. I am aware that pediatric RSD is rare and that maybe 10 cases per year float into Cooks Children's hospital. 10 kids, that's 10 children treated like they don't matter. 10 parents who are put down by ignorant doctors and snooty nurses. 10 ...
As a medical professional you would think that even if 1 rare case came through the hospital that they would do what they can to LEARN about the condition. A simple call to Harvard or another pediatric RSD specialist would result in knowledge that could be used to help these kids. Hellooooo!!! Common sense!!!
It took until about 9:20 am to settle Emily down because being sent away from a children's hospital after we asked for help was extremely upsetting. Many people have asked me this week how I feel and what's my plan. My answer is simple, I'm just going to take a deep breath and start each new day with a fresh attitude and I so very proud to say that Emily does the same everyday as best as she can. As long as I have breath left in my body RSD will not take my child. Emily has RSD, RSD does not have Emily ...
The drive home was tough, Emily struggled to keep it together and when I lifted her into bed she broke down. The fact that they refused to help wasn't lost on my 11 year old. The fact that because they don't know what they're dealing with intimidates them into behaving badly also isn't lost. Emily can see them treat me like I'm making all of this up despite the physical attributes that Emily has and the chronic pain that she's in and it makes her feel horrible. I am aware that pediatric RSD is rare and that maybe 10 cases per year float into Cooks Children's hospital. 10 kids, that's 10 children treated like they don't matter. 10 parents who are put down by ignorant doctors and snooty nurses. 10 ...
As a medical professional you would think that even if 1 rare case came through the hospital that they would do what they can to LEARN about the condition. A simple call to Harvard or another pediatric RSD specialist would result in knowledge that could be used to help these kids. Hellooooo!!! Common sense!!!
It took until about 9:20 am to settle Emily down because being sent away from a children's hospital after we asked for help was extremely upsetting. Many people have asked me this week how I feel and what's my plan. My answer is simple, I'm just going to take a deep breath and start each new day with a fresh attitude and I so very proud to say that Emily does the same everyday as best as she can. As long as I have breath left in my body RSD will not take my child. Emily has RSD, RSD does not have Emily ...
Wednesday, June 20, 2007
Tuesday, June 19, 2007
A massive flair up ...
Unfortunately yesterday was a terrible day. After such a positive weekend full of highs came the lowest of the low. Emily spent the day in agony ...
For a few days Emily has complained of neck pain and yesterday her pain was all over. After PT at 3:00 pm yesterday Emily just never recovered. Last night I blew up the air bed and put it onto my king size bed, with pillows under it for support she floated on a cushion of air tiny in the very centre. Finally, after Emily had a complete meltdown I went and got Emily's best friend Andy, I don't know what I would have done without her because after 10 hours of not being able to take the chronic pain away I was very emotional and fit for nothing. Andy sat with Emily and Pete sat with me talking me through my fears.
Emily told me last night that she feels robbed of her childhood because she watches other children play carefree and she has to many responsibilities. She has to cath 4 times a day which is already a lot of someone who's 11 and she has to work hard to keep mobile and push through a wall of pain each day. Every morning she wakes up with new pain and she has to deal with the feeling of panic because she's afraid that the RSD has spread. It's been a while since she questioned why she was alive but last night she told me that she didn't feel that she could carry on like this forever.
My own fears surface when Emily melts down. I fear for Emily's future. It's unlikely that she'll ever lead a normal life. From what I've seen her future is in real jeopardy. From as early as I can remember Emily has wanted a little boy who she's going to call Dillon. She wants lots of children, she wants me to be a grandma and to live next door. She wants to work with special needs kids but will she ever be able to keep to a schedule. I don't know what the future holds and I try so hard to be positive but from what I've seen the future looks very scary.
Emily still has no plan for school in August. Her current school doesn't want to hold her back despite Emily completing less than 2 months of 6th grade. Her 7th grade school feels that it's not in Emily's best interest to put her up to a new grade because she has no Math foundation. Because Emily is the youngest in 6th grade I have no problem holding her back but I feel that the school has been so horribly unsupportive that I don't trust them to keep her safe and mentally healthy. Her teachers last year were lovely and they try to understand Emily's condition but I have to go through the principal and so much red tape BS that it adds so much stress. Why don't they understand that families like mine already have so much stress that just keeping it together is a challenge. Why add more??? Although I don't want to I think Pete's right and homeschooling may be the only option. I feel that home schooling will take away a huge component to Emily's recovery, her peers, her chance to have a normal life so I'll hold off on that until I've looked into more options.
Tom is struggling. Thankfully Karen took Tom at short notice last night and he slept over with Aaron. He really needs a break and some fun away from here because it's just way to intense when Emily has a flair up. Luckily for all of us I have several close friends who can step in if I need them. My family has been so unsupportive it's just sad and neither Emily, Tom or I will forget who helped and who chose to be absent.
For a few days Emily has complained of neck pain and yesterday her pain was all over. After PT at 3:00 pm yesterday Emily just never recovered. Last night I blew up the air bed and put it onto my king size bed, with pillows under it for support she floated on a cushion of air tiny in the very centre. Finally, after Emily had a complete meltdown I went and got Emily's best friend Andy, I don't know what I would have done without her because after 10 hours of not being able to take the chronic pain away I was very emotional and fit for nothing. Andy sat with Emily and Pete sat with me talking me through my fears.
Emily told me last night that she feels robbed of her childhood because she watches other children play carefree and she has to many responsibilities. She has to cath 4 times a day which is already a lot of someone who's 11 and she has to work hard to keep mobile and push through a wall of pain each day. Every morning she wakes up with new pain and she has to deal with the feeling of panic because she's afraid that the RSD has spread. It's been a while since she questioned why she was alive but last night she told me that she didn't feel that she could carry on like this forever.
My own fears surface when Emily melts down. I fear for Emily's future. It's unlikely that she'll ever lead a normal life. From what I've seen her future is in real jeopardy. From as early as I can remember Emily has wanted a little boy who she's going to call Dillon. She wants lots of children, she wants me to be a grandma and to live next door. She wants to work with special needs kids but will she ever be able to keep to a schedule. I don't know what the future holds and I try so hard to be positive but from what I've seen the future looks very scary.
Emily still has no plan for school in August. Her current school doesn't want to hold her back despite Emily completing less than 2 months of 6th grade. Her 7th grade school feels that it's not in Emily's best interest to put her up to a new grade because she has no Math foundation. Because Emily is the youngest in 6th grade I have no problem holding her back but I feel that the school has been so horribly unsupportive that I don't trust them to keep her safe and mentally healthy. Her teachers last year were lovely and they try to understand Emily's condition but I have to go through the principal and so much red tape BS that it adds so much stress. Why don't they understand that families like mine already have so much stress that just keeping it together is a challenge. Why add more??? Although I don't want to I think Pete's right and homeschooling may be the only option. I feel that home schooling will take away a huge component to Emily's recovery, her peers, her chance to have a normal life so I'll hold off on that until I've looked into more options.
Tom is struggling. Thankfully Karen took Tom at short notice last night and he slept over with Aaron. He really needs a break and some fun away from here because it's just way to intense when Emily has a flair up. Luckily for all of us I have several close friends who can step in if I need them. My family has been so unsupportive it's just sad and neither Emily, Tom or I will forget who helped and who chose to be absent.
Sunday, June 17, 2007
Quite a weekend!
Dressed as a Nun I joined the British Emporium team for the day to help raise money for Emily's fund. After a rainy start the shop filled with a constant stream of supporters. After having about 30 minutes of sleep on Friday night Emily was feeling unwell so was unable to attend on Saturday so she stayed home with her best friend Andy (Andrea).
Jimmy arrived and we made him a really cool Viking outfit!! He was totally AWESOME!! Jody and Beth were lumberjacks and spent the day playing, dancing and generally entertaining the delighted shoppers. Jody did a great Lumberjack dance and won a prize in the best costume competition.
During the day on Saturday I met a lovely Lady and her husband called Judy and John. Judy has been suffering from RSD for 17 years and was just beautiful. I look forward to meeting up with them in the future.
This weekend was amazing. Not only did we raise money for Emily I also met several people with RSD or who's family members have RSD and this helped me so much. I hope in the future to set up a support group locally, a place where people with RSD can come and be with others who understand the pain.
Thank you to the British Emporium for making this happen this weekend, you are truly amazing!!
Jimmy arrived and we made him a really cool Viking outfit!! He was totally AWESOME!! Jody and Beth were lumberjacks and spent the day playing, dancing and generally entertaining the delighted shoppers. Jody did a great Lumberjack dance and won a prize in the best costume competition.
During the day on Saturday I met a lovely Lady and her husband called Judy and John. Judy has been suffering from RSD for 17 years and was just beautiful. I look forward to meeting up with them in the future.
This weekend was amazing. Not only did we raise money for Emily I also met several people with RSD or who's family members have RSD and this helped me so much. I hope in the future to set up a support group locally, a place where people with RSD can come and be with others who understand the pain.
Thank you to the British Emporium for making this happen this weekend, you are truly amazing!!
The Monty Python weekend
"Bobby socks", Sammy and Emily's friend Lumberjack Beth making balloon art. Beth was amazing at balloon creations!
Saturday, June 16, 2007
A big dose of Monty
A totally amazing night! Over 100 people turned out to watch Monty Python and support Emily at the British Emporium. We saw a Mountie and clip clopped our coconut halves along with the movie. Emily was surrounded by fun smiling people all supporting her in her journey to recovery. What more could we ask?
Tomorrow Jimmy, Jody's husband will be a Viking for the "have your pic taken with a viking" event. I know this is a massive gift from him as he's so sweet and shy. He's so trusting because he said yes and allowed me to make the Viking outfit LOL. I told him to wear the shortest shorts he has, no top and high boots. I've been kind :) I bought lots of fabric so wont make him be that naked. I'll take a pic tomorrow.
Tonight I met a lovely lady who's Mom had RSD. She talked to me about her Moms struggle and it was so similar to Emily. Same medication, no sleep and chronic burning pain. Hopefully we can get them together soon and they swap ideas and tricks that they both use to cope.
Emily is hyper tonight and I know that her early start is going to be tough. I'm proud of how she kept going tonight, I could see that she was uncomfortable. Tomorrow she'll talk to the silly walkers at the sponsored walk and the press will be there.
To everyone at the British Emporium, to the clip cloppers, walkers, Hells Grannies, Lumberjacks, Mounties, Police officers (Tom) Vikings, helpers, supporters and friends, THANK YOU!!!!
Tomorrow Jimmy, Jody's husband will be a Viking for the "have your pic taken with a viking" event. I know this is a massive gift from him as he's so sweet and shy. He's so trusting because he said yes and allowed me to make the Viking outfit LOL. I told him to wear the shortest shorts he has, no top and high boots. I've been kind :) I bought lots of fabric so wont make him be that naked. I'll take a pic tomorrow.
Tonight I met a lovely lady who's Mom had RSD. She talked to me about her Moms struggle and it was so similar to Emily. Same medication, no sleep and chronic burning pain. Hopefully we can get them together soon and they swap ideas and tricks that they both use to cope.
Emily is hyper tonight and I know that her early start is going to be tough. I'm proud of how she kept going tonight, I could see that she was uncomfortable. Tomorrow she'll talk to the silly walkers at the sponsored walk and the press will be there.
To everyone at the British Emporium, to the clip cloppers, walkers, Hells Grannies, Lumberjacks, Mounties, Police officers (Tom) Vikings, helpers, supporters and friends, THANK YOU!!!!
Thursday, June 14, 2007
3 pm
One good day is followed by several "slow" days. Yesterday Emily found it really hard to get out of bed.
Frank explaining
It's important to me that Emily knows the effort people are going to for her so I had Frank explain what took place on Saturday. Frank and Mickey are both incredibly caring people, Frank even included Tom.
Frank's Tanks
Emily visited Frank from Frank's tanks on Sunday. Frank did a raffle with the help of Mickey from DFWMAS and they raised money for Emily's fund. A very big thank you to you both and also to those who bought tickets. Emily and Tom loved meeting Frank and checking out his store.
We'll use the donated money to buy Emily and Tom a Nintendo Wii. Playing this will not only be fun and help keep our family connected, it will encourage all kinds of movement and therefore be great for Physical Therapy. Now if only I could find one!!!
Saturday, June 09, 2007
Lazy Larry
This picture makes Emily giggle! This is Lazy Larry our cat when he was little and it's one of many pictures that I've put together in a book to show Emily when nothing else has worked with her pain. I'm a firm believer that laughter helps.Thursday, June 07, 2007
A new living room
It's 7 am and I've just finished cleaning the new living room. It took me all night I'm done :) I can't wait to see the kids faces LOL I painted and accessorized all in 1 night. It's quite shocking, even the cats looked confused when they came in.
Christmas in Rehab
I found this picture tonight. It's Emily and Tom at Christmas. We had mashed potato and pre-cooked airplane turkey in plastic bowls with plastic knives and folks LOL
We tried!!
Up and down
Each day starts the same. I wake Emily slowly so's not to startle her. It takes on average an hour to get her to a point where she can sit up and face the day. Some mornings she wakes and crys and others she just says "good morning Mom", obviously I prefer the latter.
Today started as any other day, Emily woke slowly and emerged from her soft blankets. Her step Brother Zach was here and that made Emily much more mobile than usual. Although she got up and got washed and dressed her frown remained until way after her medication was taken. Her "serious face" is pale and is full of tension. You can see the pain on her face so I rarely ask anymore I just treat it the best I can. We tried distraction with her favorite TV show while Tom and Zach made a massive bowl of spaghetti. It was boys cook lunch day in my house, they trashed the kitchen but enjoyed cooking. Both were very proud of the end result. It was not only edible, it was yummy! Emily ate a little bowl and relaxed as we watched the Disney channel.
I picked up Emily's friend Beth at around 5:00 pm and they played nicely in the back yard. Sometimes although all Emily really feels like doing is going back to bed it's good to have a friend come over to create another distraction. Beth is a sweetheart and couldn't be more compassionate. She really made Emily feel "normal".
Tom, Zach, Emily and myself went to see the midnight viewing of Spiderman 3. Ms night owl enjoyed it but found it hard to sit upright for the whole movie. She didn't complain but rocked the entire time.
I'm still up, it's nearly 4 am!! I have to finish painting this living room if it kills me! I finished the fireplace today and painted the 2 brightest walls. I'm loving it already.
Tomorrow I'm taking my gang bowling. I pre-booked a lane with bumpers and a disabled ramp. I'll take pictures!
Today started as any other day, Emily woke slowly and emerged from her soft blankets. Her step Brother Zach was here and that made Emily much more mobile than usual. Although she got up and got washed and dressed her frown remained until way after her medication was taken. Her "serious face" is pale and is full of tension. You can see the pain on her face so I rarely ask anymore I just treat it the best I can. We tried distraction with her favorite TV show while Tom and Zach made a massive bowl of spaghetti. It was boys cook lunch day in my house, they trashed the kitchen but enjoyed cooking. Both were very proud of the end result. It was not only edible, it was yummy! Emily ate a little bowl and relaxed as we watched the Disney channel.
I picked up Emily's friend Beth at around 5:00 pm and they played nicely in the back yard. Sometimes although all Emily really feels like doing is going back to bed it's good to have a friend come over to create another distraction. Beth is a sweetheart and couldn't be more compassionate. She really made Emily feel "normal".
Tom, Zach, Emily and myself went to see the midnight viewing of Spiderman 3. Ms night owl enjoyed it but found it hard to sit upright for the whole movie. She didn't complain but rocked the entire time.
I'm still up, it's nearly 4 am!! I have to finish painting this living room if it kills me! I finished the fireplace today and painted the 2 brightest walls. I'm loving it already.
Tomorrow I'm taking my gang bowling. I pre-booked a lane with bumpers and a disabled ramp. I'll take pictures!
Sunday, June 03, 2007
America's most wanted 2015?
Tom graduated from 4 th grade having recieved commendations on all 3 of his Taks tests!
Tom's the one with stripes on his shirt :) Proud??? Oh my goodness YES!!
The ramblings of a tired woman
Well, it's official the RSD has spread. I had been hoping that the new pain was muscular or a bruise or anything other than the truth. A virus maybe, a knock, a bump, a freak incident, maybe it was to much fishing, swimming or wearing of the brace did it really have to be RSD? 75% of RSD patients see some spreading and 8% get it all over their body. Just for a change can't Emily be in the small percentage that just stay the same or that go into remission??? They said stay positive and keep her moving. They told me to make sure she has a "normal" life and not to allow the pain to take away her childhood. Ignore the pain they said, praise her when she doesn't complain and put her to bed immediately if she complains and don't allow her back out again until morning even if she says the pain's gone. Punish and praise, punish and praise. I agree that Emily should live as happy a life as we can make it, oh god how I try and I strongly agree that we try to push past the pain as much as we can so that life can continue. The sad fact is that this is not a psychological disease it is a malfunction of the central nervous system. We've tried to trick it but it seems to be sneaky and unrelenting. The praise and punish thing just blows my mind. When I was given the sheet of paper with that on it in the hospital I almost spat my twinkie when I read it. Sadly it shows a real lack of understanding by the doctors. They really have no clue what they're dealing with and at the end of the day Emily is in their hands medically. They promised to revise the handout that they give people who have issues with pain. I can't allow that sheet to be given to others with RSD because in the beginning you just don't understand what's going on. Can you imagine a child in chronic pain being treated that way!!? I'm yet to find a real RSD specialist, Texas doesn't have one. I'm looking for one out of state to take Emily to. I'm also looking for a good homeopath and an acupuncturist and someone who does cold laser. All money donated into Emily's fund is going towards her treatment today and her future treatment. Thank you so much to all who have donated. Thank you also to those who have donated their time to do things to help not only Emily but also Tom and myself and lastly thank you to my friends who hang in there despite the fact that I rarely return their calls.
Subscribe to:
Posts (Atom)
