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.
Friday, February 15, 2008
Tuesday, February 12, 2008
Yesterday
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.
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.
Sunday, January 20, 2008
Windy!
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 LOLSaturday, January 19, 2008
Choices
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.
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
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.
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.
Monday, January 14, 2008
Update
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.
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.
Wednesday, December 12, 2007
Time to freshen up
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.
Tuesday, December 11, 2007
I'm frightened
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?
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?
Subscribe to:
Posts (Atom)
