Monday saw the start of school for Emily and Tom so our routine changed dramatically. I went to great lengths with both children to make sure they were prepared so things have been running pretty smoothly.
Emily started 7 th grade with great support from her new school. I can't fault them in any way because everyone has been bending over backwards to make sure Emily is taken care of. She loves 7 th grade so my decision not to fight to keep her in 6 th has so far been a good one.
We've had a few teething problems but thankfully school staff have worked with me and I feel comfortable dropping her off at school each day. Teaching Emily's teachers to understand this disease hasn't been much of a problem but helping them get the balance between care and direction is a challenge. Seeing a child so young with so many challenges is heart wrenching but in order for Emily to get her anywhere near her old life back we have to push past that and be encouraging. I hope in time this will come. On Tuesday Emily started to bleed from her belly button port and it freaked out most people at school. This is a prime example of what I mean because yes, it's nasty. Hey, to me it's nasty BUT come on lets let the antibiotics do their job and move on. Sitting staring at it is going to take focus away from school so we have to push past the desire to wrap Emily in something snuggly and tell her that everything will be OK.
I have the urge. My urge to wrap her up and run away where no one can hurt her is so strong at times it's overwhelming but I learned several months ago that given the chance and encouragement Emily can push past this disease and succeed and that's what she needs to do if she's ever going be beat this.
Thursday, August 30, 2007
Tuesday, August 28, 2007
Monday, August 27, 2007
School
On Monday of last week with 1 week to go until the children go back to school I found out that Emily's principal was pushing her up to 7 th grade. Despite what everyone feels is in Emily's best interest she declined to accommodate her. When I found out I felt physically sick. Several days of frantic phone calls followed and then I found Mr Baker.
Throughout our 9 month ordeal I've haven't come across anyone who puts me at ease like Mr B. I can't tell you how grateful we are to have met him. Emily thinks he's just wonderful! Mr B. is assistant principal of Emily's new school and he's been paramount in getting her to 7th grade happily and healthily. He's already called today to let me know that she's doing fine and he's bent over backwards to make sure not only Emily is comfortable he's also helped me feel comfortable too. I trust no one and I've found that the constant fight to get help for my daughter has left me defensive and fragile. I'm hoping now will be a period of healing not only for Emily but for me as well.
Today is a new day and with it comes school for both Emily and Tom. My little boy is now a big 5th grader! I feel very old LOL. Emily and I dropped him off first and he did really well. He managed to get his locker undone 1st time which delighted him and made Emily jealous because it took weeks before she could master hers. His brain works a different way, he's mathematical! He looked gorgeous today in the outfit he picked for himself at the store, I'm so very proud of him. This year's been tough on him too. I took a picture of them before I drove them to school, take a look :)
Throughout our 9 month ordeal I've haven't come across anyone who puts me at ease like Mr B. I can't tell you how grateful we are to have met him. Emily thinks he's just wonderful! Mr B. is assistant principal of Emily's new school and he's been paramount in getting her to 7th grade happily and healthily. He's already called today to let me know that she's doing fine and he's bent over backwards to make sure not only Emily is comfortable he's also helped me feel comfortable too. I trust no one and I've found that the constant fight to get help for my daughter has left me defensive and fragile. I'm hoping now will be a period of healing not only for Emily but for me as well.
Today is a new day and with it comes school for both Emily and Tom. My little boy is now a big 5th grader! I feel very old LOL. Emily and I dropped him off first and he did really well. He managed to get his locker undone 1st time which delighted him and made Emily jealous because it took weeks before she could master hers. His brain works a different way, he's mathematical! He looked gorgeous today in the outfit he picked for himself at the store, I'm so very proud of him. This year's been tough on him too. I took a picture of them before I drove them to school, take a look :)
Going forward
Financially the medical bills are killing us. Things hit crisis last week and I fear that we'll no longer be able to pay for Emily's treatment. Not only that but debt collectors call daily to find out where payments are. I tell them the same thing as I tell them all, join the line.
We've started selling things from our home. Pete even listed several aquariums and many pieces of fish equipment, we have to do this in a way that the children wont notice because we don't want to cause alarm. Buying school supplies was tough but we made it. Karen dropped off a food parcel which was humbling.
We have a benefit for Emily coming up in September and now that school has begun I can work more. Things have a way of working out, I know it'll be ok ...
We've started selling things from our home. Pete even listed several aquariums and many pieces of fish equipment, we have to do this in a way that the children wont notice because we don't want to cause alarm. Buying school supplies was tough but we made it. Karen dropped off a food parcel which was humbling.
We have a benefit for Emily coming up in September and now that school has begun I can work more. Things have a way of working out, I know it'll be ok ...
On my return ...
OK, so I know that you're all frustrated because I haven't posted since my trip but things have been really tough.
Houston was wonderful, I really to get off this merry go round if only for a day or two. I felt overwhelming anxious as I drove away from my house. I knew I'd trained Emily well enough to administer her medication and to Cath but emotionally it was extremely difficult to separate for both of us. Just when I began to relax Emily would call so at times it was painful but I realize that this was my first trip away. Next time things will be easier ...
Houston was wonderful, I really to get off this merry go round if only for a day or two. I felt overwhelming anxious as I drove away from my house. I knew I'd trained Emily well enough to administer her medication and to Cath but emotionally it was extremely difficult to separate for both of us. Just when I began to relax Emily would call so at times it was painful but I realize that this was my first trip away. Next time things will be easier ...
Wednesday, August 08, 2007
A quick trip
It's Wednesday and I'm getting ready to go out of town. I'm nervous about leaving Emily but feel that I have to allow her the chance to cope alone for a day or 2. Her confidence is really high because of the extra movement she's gained, I know she'll be ok. Over the last 2 months I've allowed her to take over her medication, she medicates when she needs it. She knows what each medicine is for and how much to take, she also knows what not to take!! I'm looking forward to taking a break, I need one badly! I've arranged stuff for both Emily and Tom so they'll have fun, I'm still nervous about going though LOL I have so much to do before I can leave so I better get cracking.
Monday, August 06, 2007
Happy feet
After a rough few days after her Birthday Emily is doing much better. Yesterday we had a Mom and me day at the mall where I'm delighted to say we found 2 pairs of real shoes that she could get her foot into. One of her biggest pet hates is that she has to wear giant hospital shoes!!
We've been working on building up the movement that Emily has in her bad foot (Sarah as she calls it). We were delighted a month ago that some movement was regained in that foot but we have to build on it. Although walking without her brace is really hard we've been practicing. Kelly set us PT exercises and I've been doing them everyday with Emily so that hopefully one day the brace can come off and she can walk normally. We have a way to go but this is one of many challenges that we've had over the last 8 months. Because we can see a difference every few days it's a challenge that Emily is enjoying completing. This is the difference between being disabled and able bodied and Emily can finally see a light at the end of the tunnel.
I'm planning a trip to Houston this Wednesday for a few days alone. It's time I need to take for myself, it's been 8 months of unbearable distress and I need to take a moment to catch my breath. Our medical bills are climbing daily so it wont be extravagant but it'll be a gentle few days with a great friend :)
My thoughts tonight are with my friend Steve in CA, he started Chemo tonight. You go Steve!!
We've been working on building up the movement that Emily has in her bad foot (Sarah as she calls it). We were delighted a month ago that some movement was regained in that foot but we have to build on it. Although walking without her brace is really hard we've been practicing. Kelly set us PT exercises and I've been doing them everyday with Emily so that hopefully one day the brace can come off and she can walk normally. We have a way to go but this is one of many challenges that we've had over the last 8 months. Because we can see a difference every few days it's a challenge that Emily is enjoying completing. This is the difference between being disabled and able bodied and Emily can finally see a light at the end of the tunnel.
I'm planning a trip to Houston this Wednesday for a few days alone. It's time I need to take for myself, it's been 8 months of unbearable distress and I need to take a moment to catch my breath. Our medical bills are climbing daily so it wont be extravagant but it'll be a gentle few days with a great friend :)
My thoughts tonight are with my friend Steve in CA, he started Chemo tonight. You go Steve!!
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!
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