Babysitting

Saturday was spent working at Emily's school. At the last minute it was decided that the stage was going to be sanded back to wood and stained. Emily had a wonderful time babysitting a 2 year old. I'm going to have her attend a babysitting course at the YMCA but I can tell already she'll be wonderful.

We hate the vacumn!!

Almost a year

I can't believe that November is almost here. Next week will be fun because we have Halloween!!! The 8th of November marks the day that changed Emily's life and I'm not sure what to do on that day. The temptation is to avoid it. Not bring it up to Emily and blast through it in denial. I however as most of my friends will tell you, I'm different, I'm going to have a party LOL

When I think back to November the 8th last year, I remember the second that I knew something had gone terribly wrong and the frustration that followed. On the 8th we'll celebrate getting through a tough year with our sanity intact. We'll celebrate Emily learning to walk again and Tom being such a supportive little guy. We'll celebrate Pete's love and support, my strength to carry my family through this and we'll count our blessings for the many friends that have helped to catch us when we were falling.

We achieved so much this year just think what next year holds :)

Check ups

We several doctors on Wednesday.

Neurology first at Cooks. Emily's doctor here is realistic but kind and was shocked to see how far Emily had come in the 5 months since we last visited. He diagnosed Emily back in March I remember the day well. Emily fell asleep in the car and I cried all the way home. 2 conditions were diagnosed, RSD and peripheral nerve damage. I was told that the future was cloudy and unknown. Seeing his face as Emily walked in was pure bliss for me and I almost burst with pride!

Pain Management was next. Dr F. also delighted with Emily told me that somehow I have to get Emily to Arkansas to the RSD specialist there. She may need nerve blocks to help slow the spread and they can't do them here. Right now money is so tight that I can't even entertain this but I'll do my best to get her there after Christmas.

Both doctors were happy to see her medication free and impressed with her strength and determination. Yayyyyy Emily!

Ha!!

Medication? I laugh in the face of medication!

Day 7

Still no medication. Today Emily's pale with flushed cheeks so it looks like she may be getting sick. Her pain is increasing in her foot but she asked not to be given medication. Right now she's curled up in a tiny ball fast asleep.

For Steve

Why I do this blog?

Why do I take the time to write this blog? This question was bought to my attention today while I talked with a family member. Why? What's it for? Why do I sit here tapping away around 20 times every month sometimes in tears. Why?

Emily's illness is hard for me to talk about. In the beginning I had many people who would call me several times a day for an update. With each phone call came emotional distress and I became unable to cope with things everyday because the calls drained me. How's Emily? Tell me, how are things going? Oh my god, what happened? My friends, colleagues, family, teachers, people in Starbucks, all well meaning. The words "what can I do" followed in some cases "how can I help". So kind but so very draining. Each call made this nightmare real to me. Sure you can live in denial all you like but sooner or later the sh*t hits the fan and BANG there it is, my child is changed forever.

So I started this blog. People had a right to know what was happening to us as a family, to Emily. I felt bad because I just stopped taking calls because to get Emily through this I have to be strong. I carry a huge burden each day, HUGE, unimaginable to most people I'm sure but there it is. In order to get Emily where she is today I have to be a master of distraction. Counselor and nurse. I have to greet each day new and fresh and encourage Emily to do the same. Over time this have become easier and my hard work has been rewarded over and over again. I just have to stand back and watch Tom and see how great he's doing in school and how happy he is now. Looking at Emily I see a strong and wonderful pre-teen who's funny and compassionate. I see bright colors in my home and dashes of art here and there which I have created either with my children or alone. I see thousands of dollars worth of medical debt which I juggle each day and funnily enough make work. I'm doing what needs to be done.

This blog helps me to decompress. It helps organize my thoughts. It is my counselor and my therapy. It clears my mind enough for me to greet each day and it informs friends and family how our life is and why if I don't return a call it's not personal it's just my life.

Amazingly from time to time I run into people that really don't get it. They can't grasp that talking on the phone and answering questions about what happened to my child drains the life from me and makes me very upset and for the most part those people have fallen by the wayside over this year. Today my only focus is to lift my family from this horror and keep going, other peoples feelings are hard to take on board at this point especially when this blog exists to keep them informed.

In the beginning a rift was formed between me and my family in England. They just don't get it despite actually visiting here in the beginning when Emily was seriously ill. What's not to get? Either roll up your sleeves and do something or back off. Come here and help with Tom, help my husband and reduce the stress, run my home while I'm in hospital with my chronically ill child, pay a bill, something, anything. Now is not the time for me to beg for help from anyone and I will not, ever. I have no time to focus on anything else other than all I have going on here and I make no apology for that because anyone in this situation would do the same. Today I found out that even though this blog has been sent to my family, they don't follow it. It blew my mind.

RSD has been like a giant sieve. It sifted people who are truly real and wonderful out from people who are just along for the ride. The people who care enough to read my posts and comment with words of wisdom, My angel Steve, those who have donated to Emily's fund no matter how much, the fundraisers like Cheryl and the British emporium, my "I'll be right there" friend, the lumberjacks and viking, my "don't move I'm calling right now" friend, my computer genius, the special people at Emily's school who give her the confidence to walk in each day and keep on walking, our PT, our chocolate store friends, Emily's rat supplier, hip hop Nick, those who send little notes, other RSD sufferers (Renee and Judy) that laugh through the pain and show me a way forward and those who just come to me with rolled up sleeves ready for action are just amazing. You know who you are :) To you I say THANK YOU so very much. WE have got Emily this far, we as a team and together we'll keep Emily walking ...

Medication across the nation

It's been almost a week since I posted last because it's been crazy here.

This picture was taken a few weeks ago and shows the vast amount of medication Emily took in a week. The side effects were disturbing. Bizarre behaviour and mood swings, rocking, hair loss, severe fatigue, dizziness, memory loss, confusion, regression, dry mouth, loss of balance. One of the toughest things for me as a parent of a child with nerve damage and RSD has been watching my child in constant pain and making her take all of these pills. The side effects were nasty but without them Emily couldn't function because the scalding feeling in her foot was so severe. I've watched my daughter vanish into a foggy cloud for almost a year and I truly hate it.

Finding someone to manage the pain proved to be impossible because just when I found someone Cooks children's hospital pulled the pain management team. Our first pain management guy made me feel like I'm the one making my child sick which really didn't help at a time when we were in acute distress. Who deals with Emily's pain management now? ME!!

For 5 months I've been weening Emily from her medication. First went the gabapentin. I reduced it from 1500 mg per day down to 400 and then we hit the burning pain again so we had to stop. Next was the narcotic medication. I changed her dose just slightly week by week until we could switch to a different (lower) narcotic. Once there we reduced further week by week. Some days we had to abandon our plan and go back to heavy medication because the pain was to hard to deal with for Emily. My aim has never been to distress my child so it's OK to go back back if she has a flare up. Once we got the flare up to pass down we went again until she only had medication when she asked for it. Anyone who knows Emily understands that she just wants to be like everyone else so no one strives harder to be medication free. Her average dose was half of a 5/325 narcotic twice daily. 3 weeks ago we dropped to once daily. 2 weeks ago I dropped the gabapentin to 200 Mg's a day then by the end of the week down to NOTHING!!

Today (this makes me cry) Emily takes 1 pill daily, it's small and brown and called a............................MULTIVITAMIN! No medication. No more narcotics and no more brain bending gabapentin. Today is day 6!

We'll take this each day at a time. Some days Emily will have to take something to help with the pain. Flare ups are common and I know we could go backwards fast at any moment but I choose not to dwell. Is she in remission? No. Emily still has pain and it's chronic but we've changed her lifestyle dramatically and also found ways to work through it. For me it's a major win against this terrible disease and a time to reflect on this bumpy journey. For Emily it's a time to dance and sing and just be 12.

My Tom

Sometimes you just have to grin and bare it!

Our hairy situation

It's been almost a week since Emily started losing patches of hair and so far so good. She has a patch on top of her head that sticks up on end like a parrots flume feathers! I'm looking into getting a single hair extension to bond to these "trouble" hairs the same color as hers because these hairs are distressing her.I'll figure something out!

Cooking with Sam

Tom missed 2 days of choir practice this week because he had a virus so yesterday he got kicked out. Are you getting the feeling that they don't want him there by any chance?? I called and left a message for his choir teacher and spookily she didn't call me back. My message asked since when did we penalize people who are sick? Since when was it OK to treat people this way? Tom's OK and that's the main thing. Taking choir meant that he'd miss his club day once a month and since he made young chef and is so excited about it I'm having him go there instead. I'm very proud that Tom made choir and that he did so well to put himself out there. If he chooses to take his singing further I'll do what I can to get him in a different singing group but for now he wants to concentrate on his cooking.

As many of you know Tom has really struggled this year. It's not easy when you have a disabled sister. Once when things were different, Tom and Emily used to skip to the park and play. They played basketball outside and bounced on the trampoline. I was always here, meals were good and nutritious and always eaten together. When Emily became sick Tom had to learn to cope alone and that was so heartbreaking for me. In total I spent over 3 months in hospital with Emily leaving poor Tom without his Mom. He was lucky because many people love him and my great friends did there best to take care of him but at the end of the day he needed his Mom.

Things are getting better day by day and Tom has settled back down to straight A's at school and his happy go lucky self. "The big protector" the girls call him at school LOL What an awesome little guy! In the beginning Tom's grades dropped from A's to low C's in 1 month but now he's loving school again and bring home great grades.

As you can see from past posts Tom and I watch "Sam the cooking guy" on a Thursday evening and then race to the store on Saturday to buy ingredients to make one of his Fab recipes! Last night we missed it so I logged on to Sam's website to see if I could find a recipe for this weekend and there it was, Sam's contact info! I decided to email him on the off chance that someone would reply and they did!! Tom really deserves something wonderful to happen to him for a change and Sam's assistant is going to get Tom a signed picture :) I'm really excited!

Take a look http://www.thecookingguy.com/ buy his book, it's worth it. His cooking style is what Tom would describe as crazy, messy and fun. He's health conscious and cuts fat when he can. His dogs sleep on the floor while he cooks and he keeps his dishes on his dining room table. Bottom line, he makes my son happy! Thanks Sam!

Hair

Emily's hair has started coming out in clumps. Today when I went to put her hair in a ponytail I noticed a big clump of her hair missing and small strands are sticking up. Last week I noticed that her hair was uneven on one side. Emily has shoulder length hair and it's all one length so I'm confused as to why she has a patch by her ear that's very short. I took Emily in to have her hair trimmed last Wednesday and it looked wonderful. The hairdresser never commented on short areas and I sort of wondered if she'd messed up and cut it by accident. Today this patch is new and unmissable. I've hunted in her bedroom and I haven't found any hair or haircutting implements and I know that it's the last thing she'd do because she loves her hair.

I do know that hair is a direct window into the central nervous system and when that's not healthy nor is your hair. Through bouts of severe stress my hair has often been dead straight, scary straight so I know this first hand and I can also see a difference in the texture of Emily's hair. This disease has taken so much from Emily, it needs to leave her hair alone. If she loses her hair I'll cut all of mine off too and we'll have a baldathon to raise money to buy us matching Dolly Parton wigs. Back off RSD, BACK OFF!

Goofy

Emily's sense of humor has carried her a long way.

Garage sale

Last week we held a 2 day garage sale. We made just over $300 and cleared a whole load of blended family junk. When the children and I moved here both Pete and I had things that we felt were to important to part with but as it turns out we were wrong. Both of us cleared tons of old possessions, put some money back in the bank and created a fresh start.

Wednesday

We visited the orthonic clinic because Emily was uncomfortable in her brace all of last week. Several pressure sores appeared on her foot so it was time for a new one. Alan fitted her for a new one which involves wrapping Emily's leg and foot with the same bandage you would use if you were putting on a cast. Once it's on he moves her foot into the correct position and holds it for 5 minutes until the cast is dry and hardened. We had the choice of several different color designs (dinosaurs, swirls, butterflies, trains) but this time the choice was clear LOL it's going to be camo! It's really cool that they give kids different designs but they need to get more. Sculls or something black would be great because most teenagers love that. The old brace was heated and stretched to make room for Emily's new calf muscle! For about 10 months her left leg was withered and had no muscle tone but now we have a teeny tiny bit. If you saw her legs side by side you'd see quite a difference just like when you have a cast taken from a broken leg. The left (Sarah) is skinny and the right (Laura) is normal. We named her legs after the first month, it helped to add humor to an otherwise horrific situation.

Several phone calls followed the trip to Alan. One to the neurologist to get new doctors orders and one to the insurance company to beg them to cover some of the cost.

Monday

Trouble makers!

Monday

I'm teaching myself photography. Not point and shoot pics but pictures taken with a proper camera. This is my first attempt :)

Monday

The Jonus Brothers

Emily's dream came true when we went to the State fair and saw the Jonus brothers. Because she's still unable to walk miles I took her in her wheelchair and managed to get to the very front. I'm sorry to all those with squashed toes but a girls gotta do what a girls gotta do! It was FAB!

Saturday

Cat attack!

Tom

Last night one of our cats snuck into Toms room. Tom was asleep on his bed on the floor (we had out of town visitors) and the cat climbed onto the bookshelf over him. When she knocked his drink over she was frightened and jumped down. Unfortunately she landed on Tom's face seconds after the cup hit and she cut him really badly. I heard the band but no blood curdled scream followed so I thought all was well. oh my goodness how wrong could I be. Poor Tom had a gash 3 inches long running along his eyelid. I stopped the bleeding and rushed him to cooks where he had 12! stitches!! He also has a half circle cut on his head where the plastic cup hit and a scratch across his forehead. He looks like he's been in a car accident. We arrived home at 4:30 am sore but so happy that Tom didn't damage his actual eye. Today his eye is bright purple and swollen, he's going to have a shiner. We were told that the police would need to interview us and animal control would come, add that to the new medical bill and whoop Dee Doo we have a party LOL My son didn't lose his eye, bring it on!

Gigantism

I watched a show tonight with Pete, it was about gigantism. This lovely family had a little girl with gigantism and it was localized to her head. She had eye tumors and bone growth in her ear. Her head was huge and threatened to cut off the optic nerve causing her to go blind. This time last year I would have watched such a show with a definite degree of separation. Not my child... Obviously I would have been horrified and most likely shed a few tears, I hate seeing people suffer. This lovely Mom described how one day she does well and other days she just finds "it all to much". She fears what the future holds for her daughter and grieves the loss of the dreams that she once had for her child. I watched in silence, I can relate. I've met many people now with RSD and all have spreading. Some have this disease all over including internal organs and many find everyday life a challenge and others get by each day with the help of many medications. With Emily will it spread? Will this rob her of college, a husband, a family of her own? Actually, who knows. None of us know what's round the corner so I'll continue to do my best to support my child the best I can. I know I'm going to have days that will make me panic but they pass pretty quickly because it doesn't help anyone especially Emily.

Emily before

Some things in life just aren't fair ...

Just a little outburst ...

Wow, where do I start?

Tomorrow is Friday and our garage sale. Due to our current financial "issues" we're selling as much as we can. This unfortunately means Pete's pride and joy, his boat. He bought it a few years ago and we finally finished paying it off this year, it sucks that it has to go, I feel so guilty. He bought me a kayak last year for my Birthday and even though I waited years to get one I think I need to sell it too.

I tried to make an appointment with Emily's pain management doctor (Dr F) on Wednesday only to be told that they are withdrawing this service at Cooks. Pain management will now be for post surgical kids. It took me 6 months to find a doctor who knew anything about pediatric RSD and this news quite simply made me cry. Doctor F called me later that day and said that my choice was to take her back to our previous PM specialist (totally out of the question) or go to Cincinnati to his friend and pediatric RSD specialist. Did he have to be so far away???? Dr F has a niece with RSD so I thought I'd struck gold when he agreed to take Emily, this is a bit of a blow.

I've had no patience with anyone this week. I'm trying hard to get healthy by going to the gym and eating well but it's just kicking my butt. It's been almost 2 weeks since I started the eating well portion and 3 weeks since I started at the gym and I feel better physically. Mentally I feel annoyed most of the time and rude people such as DR F's nurse have felt the sharp edge of my tongue. I think eating bad food dulls things for me and makes things easier to cope with. I've taken that away now and I feel panic struck and totally frantic to get things done. People are pulling me every which way and I feel like my body will break into thousands of pieces if they don't stop. Currently when I'm not dealing with Emily I'm working with the school. I'm trying to compile everything for Pete's CPA as well as run the back office for his business. He's doing a new business venture and although it's a good thing Its added to my workload. Keeping the house clean and organised is important to me and I get stressed if things are out of control. I'm finding that relating to Tom is hard sometimes because he's a boy and I feel guilty that I'm so over stretched I'm unable to spend the time I want with him. I run all of the finances in this house and I can never get away from this mess. I spend evenings trying to rob Peter to pay Paul and each day it weakens my soul. The medical stuff, ignorant people, people who want to add just one more thing to my already overflowing plate load, it all adds up.

Emily got turned down for the make a wish foundation today. I applied so that maybe she could do something wonderful. I know others who have been excepted without a "terminal" label so I hoped she'd get a wish. She really does deserve it and god knows Pete and I can't afford to do anything for her other than feed and clothe her.

Screw being positive, I HATE watching my child go through this day after day and I HATE that my son gets left out. I HATE having a massive job list before I get up each day. I hate needing charity to survive! I HATE that inside I feel so overwhelmingly angry, I can barely control it. I HATE that Pete has to sell his boat!I HATE people who are rude to me because they don't understand how truly fragile I am. I HATE dealing with the school. It's not the people it's the fact that I feel like an idiot each time I walk in there and that I have to constantly fill in paperwork to make Emily "special needs". I HATE that she has to be made special needs! I don't want her to be special needs, I want her to have her life back and I want her pain to STOP! Why did this have to happen? Why did Steve have to die? Stop this Merry-go-round, I want to get off. Someone please pass me a twinkie...

One step ...

They say that anything less that 5 hours sleep a night is harmful to the body yet here I am at 3 am with less than 3 hours before I have to wake Tom, doing paperwork.

Some nights I just can't sleep. Emily's situation is all consuming and it's hard to switch off. Every day is a huge juggling act in which everything must be planned to the letter to give Emily the chance to have a successful day. Most days, I would say 19 out of 20 I breeze through any situation gracefully just like all is well. Keeping 15 balls in the air is my speciality but every so often it becomes a little much and it hits me that my child will never be the same. That my carefree Emily is gone forever. Don't get me wrong, I adore the new Emily and embrace her passion for life but I'm only human, this is hard!

This new week holds many challenges. How can I make ends meet this week? How do I get Emily through another week of school and keep her up to date? How do I keep Tom on track and give him the time he deserves and craves? How can I stay on my diet when all I feel like doing is eating to comfort myself? How do I keep Pete from losing his mind with worry because the housing market has slumped and he has no work? How can I pay the house note and bills? How do I keep a cool head when everything around me is falling? How can I get Emily to her hospitals appointments and still keep her up to date in school? How do I give my friends the time they deserve? How can I work on Wednesday when I can hardly keep my own house running?

The answer? By doing it all one step at a time ...