Tuesday, July 31, 2007
Monday
A good friend told me recently that she would rather earn her RSD flare up than just get it with no effort. She knows that if she comes for a visit she'll suffer badly the next day but that she'd rather visit and enjoy her time out than miss it and be in pain anyway. As hard as this is to grasp that is life with RSD. Flare ups hit anytime, anywhere and knock you down for days. We share our friend philosophy and do our best to live life to its fullest even with RSD nipping at our heels.
Today Emily woke in terrible pain all over her body. She's in chronic pain everyday but it's somewhat isolated to her legs and never goes below a 7 out of 10. Today it reached 10 and stayed there. We knew it was coming. A Birthday weekend with big brother Zach with us was bound to bite us. Months of this have helped us prepare for these kind of days and we handle things very differently now. Out comes the flare up tray and out comes the inflatable bed. Grandmas fleece pajamas complete and the picture and we're good to go. I give her a day or maybe 2 depending how bad she feels then it's up and out before the pain sets in for the duration. Today however with the gentle coaxing of spending her Birthday money I loaded her up and we took a slow walk around Target. Sometimes she can walk from the car to the store then sits in a wheelchair and we zoom round and some days she manages a slow walk. Tonight she had her own cart, purse and spending money so I just followed her round until she couldn't walk anymore. I think she did beautifully!
Today Emily woke in terrible pain all over her body. She's in chronic pain everyday but it's somewhat isolated to her legs and never goes below a 7 out of 10. Today it reached 10 and stayed there. We knew it was coming. A Birthday weekend with big brother Zach with us was bound to bite us. Months of this have helped us prepare for these kind of days and we handle things very differently now. Out comes the flare up tray and out comes the inflatable bed. Grandmas fleece pajamas complete and the picture and we're good to go. I give her a day or maybe 2 depending how bad she feels then it's up and out before the pain sets in for the duration. Today however with the gentle coaxing of spending her Birthday money I loaded her up and we took a slow walk around Target. Sometimes she can walk from the car to the store then sits in a wheelchair and we zoom round and some days she manages a slow walk. Tonight she had her own cart, purse and spending money so I just followed her round until she couldn't walk anymore. I think she did beautifully!
The big day
Emily turned 12 on July 27 th. It's been such a difficult year it was important to everyone that she had a great day. I had a full day planned just in case she got up early and a quieter day planned if this wasn't the case. I wish I didn't have to think about RSD on a day like that but it's a fact of life for us now.
At lunchtime an excited Emily came through to the living room. We decorated it with a birthday banner and balloons :) She was so excited she could hardly contain herself. Tom bought her a beloved Sims 2 game, I think she has them all now. Pete got her a signed picture of Reba and the Reba season 5 DVD, she LOVES Reba! I decided to get her a guitar so that even on the worst flare up days she can create beautiful (OK, so not in the beginning) music. I also started a guitar pic collection.
Andy and Zach joined us for chuckie cheese and the Simpson's movie then it was home for a quick swim, some steak cooked on the BBQ at midnight and a sleepover in the living room.
Everything on that day was late. By the time we got Emily going and at a point where her pain level was under control it was already 3:30 pm. Everything got pushed back later and later and we ended up blowing out her Birthday candles at 2 minutes to midnight. It worked, she enjoyed her day but I was aware that things were far from typical. I hate that ...
At lunchtime an excited Emily came through to the living room. We decorated it with a birthday banner and balloons :) She was so excited she could hardly contain herself. Tom bought her a beloved Sims 2 game, I think she has them all now. Pete got her a signed picture of Reba and the Reba season 5 DVD, she LOVES Reba! I decided to get her a guitar so that even on the worst flare up days she can create beautiful (OK, so not in the beginning) music. I also started a guitar pic collection.
Andy and Zach joined us for chuckie cheese and the Simpson's movie then it was home for a quick swim, some steak cooked on the BBQ at midnight and a sleepover in the living room.
Everything on that day was late. By the time we got Emily going and at a point where her pain level was under control it was already 3:30 pm. Everything got pushed back later and later and we ended up blowing out her Birthday candles at 2 minutes to midnight. It worked, she enjoyed her day but I was aware that things were far from typical. I hate that ...
Monday, July 30, 2007
Thursday, July 26, 2007
Camp
Today Tom got offered a place at camp. This camp is for kids who's siblings have a chronic illness and Tom has a place. Tom has a place at a camp for kids who have brothers and sisters with a CHRONIC ILLNESS. I have a child with a chronic illness, wow ...
Animal control and the Vet
By pure luck I tracked Toby down. I decided to get up early on Monday and start calling animal control centers on the off chance he was picked up. A grey tabby cat was picked up from my area on Friday and was due to be put to sleep that afternoon. They said it was unlikely to be a domestic cat because he was wild and wouldn't let anyone near him. Toby is pathetically squishy so I thought it unlikely to be him but decided not to run the risk so I drove there.
I arrived at Animal control at 12:00 on the dot, opening time and was made to wait for a nerve racking 30 Min's while paperwork was completed. I got 2 fines and a $110 fee for his "care". I was shown into a big smelly room with cages stacked floor to ceiling. I felt a tickle on my big toe which I ignored, I felt it again but this time glanced down just in time to see a giant cockroach burrow between my flip flop clad toes. I didn't hit the roof despite that being my first desire instead I tapped the officer on the arm and said in a small voice "could you ... " pointing at my foot. The officer flicked it off nervously and apologised profusely. At first I couldn't see Toby so I began to panic and then I saw him. Toby had the bottom cage right in the corner and all you could see was the tip of his paw. In his cage he had a bowl of untouched food, water and a cardboard box which he was hiding in. The label on his cage said "Ferrel". When he heard my voice he started making this horrible meow/cry so I opened the cage and scooped him out. He immediately clung to my neck like his life depended on it, which it did!
Bottom line, the old guy has a trap in his yard. He also uses fish based compost, has fresh sifted earth and bird feeders which is totally every cats dream. He traps them or shoots at them then calls animal control to complain. He also dumps cat poop by my mailbox everyday despite my guys being indoors. Lila saw our wonderful friend Vet Jeff and he treated her wound on her back. It's really nasty but beginning to heal tonight. I'm trying really hard to be mature and not react to this guy. I did speak with Animal control and they are aware that he's clearly lost his mind so I can do no more. OK, I could poop in a bag and set light to it on his doorstep. I could write something "special" on his lawn with salt and watch it die but at the end of the day do I really have the time or energy to play him at his own game? Nah ... My focus is on my family and that's where it will remain until further notice LOL
I arrived at Animal control at 12:00 on the dot, opening time and was made to wait for a nerve racking 30 Min's while paperwork was completed. I got 2 fines and a $110 fee for his "care". I was shown into a big smelly room with cages stacked floor to ceiling. I felt a tickle on my big toe which I ignored, I felt it again but this time glanced down just in time to see a giant cockroach burrow between my flip flop clad toes. I didn't hit the roof despite that being my first desire instead I tapped the officer on the arm and said in a small voice "could you ... " pointing at my foot. The officer flicked it off nervously and apologised profusely. At first I couldn't see Toby so I began to panic and then I saw him. Toby had the bottom cage right in the corner and all you could see was the tip of his paw. In his cage he had a bowl of untouched food, water and a cardboard box which he was hiding in. The label on his cage said "Ferrel". When he heard my voice he started making this horrible meow/cry so I opened the cage and scooped him out. He immediately clung to my neck like his life depended on it, which it did!
Bottom line, the old guy has a trap in his yard. He also uses fish based compost, has fresh sifted earth and bird feeders which is totally every cats dream. He traps them or shoots at them then calls animal control to complain. He also dumps cat poop by my mailbox everyday despite my guys being indoors. Lila saw our wonderful friend Vet Jeff and he treated her wound on her back. It's really nasty but beginning to heal tonight. I'm trying really hard to be mature and not react to this guy. I did speak with Animal control and they are aware that he's clearly lost his mind so I can do no more. OK, I could poop in a bag and set light to it on his doorstep. I could write something "special" on his lawn with salt and watch it die but at the end of the day do I really have the time or energy to play him at his own game? Nah ... My focus is on my family and that's where it will remain until further notice LOL
Monday, July 23, 2007
Lila
Lila was shot last week by a man who lives across the street from us. He shot another cat called "seven" the week before but I didn't find out until today, although he didn't kill Seven it was more luck that judgement. Tonight Lila is resting comfortably at home with Emily and Tomorrow first thing she goes to the animal hospital. I flushed out the wound because it had turned into an absess and now Lila is doing much, much better. I don't know what action I can take against this guy but you can bet that I'll be going straight from the vet to the police. Lila is a big part of this family and means the world to Emily and the sad thing is, this guy knows that but he shot her anyway.
Tonight Lila's brother Toby is missing, he's been gone since Friday and usually he never leaves our garden. I have a bad feeling I know what happened to him ...
Andy I can move my leg!!!
Emily and Andy (Andrea) have been friends since they met in 3rd grade. Andy has been a huge support to Emily and is there when she needs someone to lean on. We are truly blessed to have Andy in our lives, she's a little ray of sunshine just like Emily.Hope
Finally after 7 months with no movement in the muscle at the front of Emily's left leg we have life. As I sat watching Kelly our PT touch Emily's leg I could see something was wrong. Her face was deep in concentration as she moved Emily's foot up and down. Finally she looked up and said "I think I felt a twinge". I sat frozen to my seat as she asked Emily to try to move her foot. For 7 months Emily's leg has been paralyzed from the knee down. Foot drop set in quickly after the injury and Emily became unable to use that muscle at all, her leg withered and became vastly different from the other one. There it was, movement. At first a twitch and then a small movement to the left. Both Kelly and I jumped! Emily was asked to keep her foot in the position that Kelly put it in and hold it there. Where previously there was nothing now we have a small level of control that we can build on. It stayed, it moved and we cried! The moment we've been waiting for is here, the muscle works.
This is HUGE. This is the difference between being able bodied and being disabled for the rest of her life. Eventually with work Emily WILL be able to walk without her brace. Yes, her RSD will always be there and she'll have to deal with the pain but she'll be able to walk and wear the shoes that make her feel good and not huge clunky AFO ones. She may have a limp and I'm sure that leg will always be smaller/weaker but who cares, she has a small amount of function and we'll take what we can get! RSD wise Emily's pain increased this week just because of the different muscles being used but this hasn't stopped her one bit.
We celebrated with a meal at her favorite restaurant, Bostons and we bought her roses! She's practiced a lot and when Kelly comes tomorrow she'll be shocked how much mobility Emily has regained in her foot. Brute force and determination have kept Emily going and I think for the first time we have hope. Everything's been so bleak for us and this is a twinkle in dark place.
For those who send us positive thoughts and prayers, thank you from the bottom of my heart :)
This is HUGE. This is the difference between being able bodied and being disabled for the rest of her life. Eventually with work Emily WILL be able to walk without her brace. Yes, her RSD will always be there and she'll have to deal with the pain but she'll be able to walk and wear the shoes that make her feel good and not huge clunky AFO ones. She may have a limp and I'm sure that leg will always be smaller/weaker but who cares, she has a small amount of function and we'll take what we can get! RSD wise Emily's pain increased this week just because of the different muscles being used but this hasn't stopped her one bit.
We celebrated with a meal at her favorite restaurant, Bostons and we bought her roses! She's practiced a lot and when Kelly comes tomorrow she'll be shocked how much mobility Emily has regained in her foot. Brute force and determination have kept Emily going and I think for the first time we have hope. Everything's been so bleak for us and this is a twinkle in dark place.
For those who send us positive thoughts and prayers, thank you from the bottom of my heart :)
Thursday, July 19, 2007
Finally asleep
It's 5 am and Ms Emily finally made it to sleep. The time has come for me to go to get some much needed rest. Sweet dreams everyone :)
Zach tonight
Apparently his favorite lead singer has pink hair so in support of him he wanted his hair pink too. Fair enough LOL He says he'll have it cut so that it's not pink for school but he did say he may have a lightning mark cut into the side of his hair. He's 16 and a totally awesome step-son, I absolutely adore him!To summarize ...
Emily has several conditions. Epispadius, a bladder condition which lead to surgery which lead to RSD. She has peripheral nerve damage in her lower limbs which triggered RSD. The nerve damage together with the RSD caused Emily to lose her mobility. Months ago I was told that Emily would most likely never get her foot to lift up on it's own (foot drop) so we fitted her with her AFO or brace. This kept her foot from flopping around when she walked and gave her a new level of mobility. Before her botox she was confined to a wheelchair which was pretty tough all round but she worked through the pain and can now walk upright.
Several weeks ago we had the AFO filed down at her heel so that Emily could bend it just a little, our hopes are to put in a hinge eventually so that her foot has to work a little harder. The AFO causes skin breakdown and it's sweaty and uncomfortable not only that Emily can only wear huge white hospital AFO shoes that are ugly and I've been told "very uncool". Never the less for now it is our new way of life and our link to mobility.
Emily can't feel all of her lower limbs. The back of Emily's left leg is numb and so are areas of her left foot. It took 6 weeks for her to be able to move her toes. After that she was able to move her left foot to the right but not left and not up. Despite her numb leg and foot she feel deep pain throughout constantly.
Emily's left leg has grown abnormal hair as has her foot and her nails are thick and yellow and are more often that not infected. Cutting her nails is excruciating and something neither Emily or I look forward to. I often feel like I need a stiff drink after because it's very traumatic for everyone. Thankfully I don't drink LOL She also has a deep pressure sore on the back of her leg which is beginning to heal finally.
Constant medication and hospital stays are playing havoc with Emily's teeth, I noticed yesterday that despite my constant care they are suffering badly and she is in need of dental treatment. I am actively looking for a dentist that can deal with pediatric RSD patients. One that understands that currently I am very, very overstretched with medical bills. Yes, I'm looking for a needle in a haystack and a miracle.
Mentally I feel like right now we're doing better. I almost can't say it for fear that something will happen! Frank from Franks Tanks donated a Nintendo Wii a few weeks ago and it's helped not only Emily but Tom and Pete also. Most evenings we play as a family which is a great stress reliever and also helps us keep together. Its PT for Emily and exercise for Tom it's also FUN!
Currently Emily has a nasty cough but only at night other than that she's doing fantastically. Zach came to visit tonight and he has it to so at least I know it's just a cough. I was beginning to think something bad was going on. We dyed Zach's hair bright pink, Emily got a little pink stripe under her hair so despite her massive hospital shoes she feels a little more trendy.
I'm trying to make time for myself a little more. Things got crazy there for a while and I let myself go a bit so I'm trying to make time to give myself a break. This doesn't come easy to me and is in fact my own little challenge but I know that if I don't take care of myself I can't take care of anyone else so I try very hard. It's almost 5 am so as you can see sleep is still a problem but I'm working on it!
Several weeks ago we had the AFO filed down at her heel so that Emily could bend it just a little, our hopes are to put in a hinge eventually so that her foot has to work a little harder. The AFO causes skin breakdown and it's sweaty and uncomfortable not only that Emily can only wear huge white hospital AFO shoes that are ugly and I've been told "very uncool". Never the less for now it is our new way of life and our link to mobility.
Emily can't feel all of her lower limbs. The back of Emily's left leg is numb and so are areas of her left foot. It took 6 weeks for her to be able to move her toes. After that she was able to move her left foot to the right but not left and not up. Despite her numb leg and foot she feel deep pain throughout constantly.
Emily's left leg has grown abnormal hair as has her foot and her nails are thick and yellow and are more often that not infected. Cutting her nails is excruciating and something neither Emily or I look forward to. I often feel like I need a stiff drink after because it's very traumatic for everyone. Thankfully I don't drink LOL She also has a deep pressure sore on the back of her leg which is beginning to heal finally.
Constant medication and hospital stays are playing havoc with Emily's teeth, I noticed yesterday that despite my constant care they are suffering badly and she is in need of dental treatment. I am actively looking for a dentist that can deal with pediatric RSD patients. One that understands that currently I am very, very overstretched with medical bills. Yes, I'm looking for a needle in a haystack and a miracle.
Mentally I feel like right now we're doing better. I almost can't say it for fear that something will happen! Frank from Franks Tanks donated a Nintendo Wii a few weeks ago and it's helped not only Emily but Tom and Pete also. Most evenings we play as a family which is a great stress reliever and also helps us keep together. Its PT for Emily and exercise for Tom it's also FUN!
Currently Emily has a nasty cough but only at night other than that she's doing fantastically. Zach came to visit tonight and he has it to so at least I know it's just a cough. I was beginning to think something bad was going on. We dyed Zach's hair bright pink, Emily got a little pink stripe under her hair so despite her massive hospital shoes she feels a little more trendy.
I'm trying to make time for myself a little more. Things got crazy there for a while and I let myself go a bit so I'm trying to make time to give myself a break. This doesn't come easy to me and is in fact my own little challenge but I know that if I don't take care of myself I can't take care of anyone else so I try very hard. It's almost 5 am so as you can see sleep is still a problem but I'm working on it!
Thursday, July 12, 2007
A long day
Today we did the monthly round of hospital visits. It's such a long draining day. I've found Emily a new pain management team which is good but I had to go over everything from the beginning again and it's tiring. The pain management guy said that in his opinion Emily's pain was not at a 7 it was at a 4. So I explained that she's dealing with the pain so wont show it necessarily on the outside. Not sure he got it. After 7 months Emily does a great job of walking tall despite how she feels. It makes me proud everyday. The downside is that is that people can't see what I'm telling them so they dismiss it.
psychologists scare me!! I can remember being 7 and at a psychologists office because I was incontinent day and night. At 7 I had a stammer, bit my nails, was failing school and started to turn to food for comfort. My father told me as often that he could to "stop stammering, you sound retarded" or "go and wash, you smell" or my personal favorite "you're just lazy". My Mom meekly stood by witnessing this but being careful not to interfere. I know it wasn't the Oprah generation but how many red flags do you need??? As I sat in the shrinks office with my sister and parents I was aware of the stupidity of being there. At 7 I knew that this scenario was really screwed up. I was sitting next to a dolls house and I turned to look at it. At this point the scary man with the notepad told me that "I may play with the dolls if I wish". I reached for the first figure in front of me, it happened to be a small girl. As I picked her up I heard him say, there you are it's very clear, she's wetting because she's jealous of her sister LOL!! Later it was discovered that I had an abnormally small bladder which was malformed and didn't work properly, well who would have guessed!!? LOL I'm sure now you see why they scare me and I have to take Emily to one!! I babble about all kinds of weird and random stuff when I'm there because I'm nervous, it's terrible I'm sure they think I'm insane.
As part of her recovery Emily sees a neuro psychologist, they talk about ways to deal with the pain and this helps her cope. Being in constant pain does change you as a person and it's robbed Emily of a normal childhood. She's smart enough to see for herself so discussing it helps. I'm hoping as it intensifies that Emily will find more ways to move forward mentally healthily. I really want more for her than I had because my childhood was a mess. I try to see it as a stepping stone to who I am today and today, I'm a wonderful Mom. I absolutely cherish every second that I have with my children, I am extremely lucky :)
psychologists scare me!! I can remember being 7 and at a psychologists office because I was incontinent day and night. At 7 I had a stammer, bit my nails, was failing school and started to turn to food for comfort. My father told me as often that he could to "stop stammering, you sound retarded" or "go and wash, you smell" or my personal favorite "you're just lazy". My Mom meekly stood by witnessing this but being careful not to interfere. I know it wasn't the Oprah generation but how many red flags do you need??? As I sat in the shrinks office with my sister and parents I was aware of the stupidity of being there. At 7 I knew that this scenario was really screwed up. I was sitting next to a dolls house and I turned to look at it. At this point the scary man with the notepad told me that "I may play with the dolls if I wish". I reached for the first figure in front of me, it happened to be a small girl. As I picked her up I heard him say, there you are it's very clear, she's wetting because she's jealous of her sister LOL!! Later it was discovered that I had an abnormally small bladder which was malformed and didn't work properly, well who would have guessed!!? LOL I'm sure now you see why they scare me and I have to take Emily to one!! I babble about all kinds of weird and random stuff when I'm there because I'm nervous, it's terrible I'm sure they think I'm insane.
As part of her recovery Emily sees a neuro psychologist, they talk about ways to deal with the pain and this helps her cope. Being in constant pain does change you as a person and it's robbed Emily of a normal childhood. She's smart enough to see for herself so discussing it helps. I'm hoping as it intensifies that Emily will find more ways to move forward mentally healthily. I really want more for her than I had because my childhood was a mess. I try to see it as a stepping stone to who I am today and today, I'm a wonderful Mom. I absolutely cherish every second that I have with my children, I am extremely lucky :)
Friday, July 06, 2007
2 weeks ago Emily's brace was filed down at the back to allow it to bend with her foot when she walked. She's done pretty well with it! I'm extremely impressed with her continuing efforts to lead a fulfilling life, she amazes me everyday.
Although it's sad that someone of 11 has to experience this I feel that she's learned a valuable lesson. We all say that we have to live life everyday like it's your last but RSD makes you embrace your pain free days with great enthusiasm. It's taken 7 months but I feel that we're learning about this condition. Balancing pain medication and gabapentin is tricky but I would say that maybe 4 days out of the week we've got it down to a fine art. Emily always has pain, that's not going to go away but together we're learning how to live again. When this happened life suddenly stood still and it was so frustrating and hard. I think as time goes by you learn that for the most part you're on your own medically. They can chuck drugs at you but here in Texas they really don't know what pediatric RSD involves.
You learn to modify the diet and reduce triggers and you realize that any illness or virus multiplies pain dramatically and makes coping tough for everyone. Once the virus has gone my job is to restore Emily's positive spirit, this enables her to get out of bed and get going again. She's great because no matter how much it hurts she gets up. I always plan something fun usually on day 3 of a flare up. 3 days is all I give her because I feel that after 3 days a little bit of self pity hits and everything looks bleak. On day 3 we plan something fun so the incentive's there to put that foot on the floor and take a step.
Although it's sad that someone of 11 has to experience this I feel that she's learned a valuable lesson. We all say that we have to live life everyday like it's your last but RSD makes you embrace your pain free days with great enthusiasm. It's taken 7 months but I feel that we're learning about this condition. Balancing pain medication and gabapentin is tricky but I would say that maybe 4 days out of the week we've got it down to a fine art. Emily always has pain, that's not going to go away but together we're learning how to live again. When this happened life suddenly stood still and it was so frustrating and hard. I think as time goes by you learn that for the most part you're on your own medically. They can chuck drugs at you but here in Texas they really don't know what pediatric RSD involves.
You learn to modify the diet and reduce triggers and you realize that any illness or virus multiplies pain dramatically and makes coping tough for everyone. Once the virus has gone my job is to restore Emily's positive spirit, this enables her to get out of bed and get going again. She's great because no matter how much it hurts she gets up. I always plan something fun usually on day 3 of a flare up. 3 days is all I give her because I feel that after 3 days a little bit of self pity hits and everything looks bleak. On day 3 we plan something fun so the incentive's there to put that foot on the floor and take a step.
Wednesday, July 04, 2007
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