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.

Why?

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?

Agony

Just a really difficult day.

I met with Emily's VP at school today for a chat about how we can help Emily go forward. It's been decided that she needs to go onto home bound schooling. Keeping the routine of daily life is very important for RSD patients so I'm not thrilled that Emily will no longer get the stimulation of her wonderful school but I know it's by far the best thing for now. I feel that Emily puts pressure on herself and that unknowingly so do the teachers. Of course they do, it's their job and Emily's teachers are just concerned that she's falling behind. Being home schooled for a while will actually catch Emily up but without the stress. We checked Em's grades and she's actually doing great on the work she can get in.

Emily's pain level has been up at a 9 for the last week and she's reaching the end of the line. I've been watching the barometric pressure change and the temperature fall and this has triggered a flare. I can only imagine how she feels with a constant throbbing, burning pain in her legs day and night. Tonight she reached panic mode. I could tell it was coming. Back were the tell tail signs, the rocking, the fidgeting the rubbing of the leg constantly, the pale face and the look of sheer panic in her eyes all sign I dread seeing. At 8 o clock she finally came to me and asked me to admit her to Cooks. Knowing what I know about Emily's fear of hospitals I took this as a massive cry for help and took action. I had been trying various things thought the day but nothing worked.

It's almost 2 am and the last 4 hours have been spent trying to find a comfortable place for Emily to lay. A position that she can maybe catch a little sleep possibly with reduced pain. We've medicated, creamed her legs for hours because sometimes FIRM massage helps, we wrapped her legs in fleece then covered them with a heated blanket. I distracted with TV, singing, chatting, guided imagery, hand massage, reading, music and hair stroking until a highly medicated Emily fell into a drug induced sleep.

Do I take her to the ER only to have them keep us waiting and not know what to do. Would our Neurologist be on call because if not it'll be a waste of time. Should I watch her all night in case she reacts badly to the medication that she's been off for a while. Will she wake up screaming, will she wake up? Can anyone ever truly help us ...

Back to that sick in the pit of your stomach feeling, back to the desperation and despair and back to the worst feeling of helplessness that you'll ever know. Am I supposed to sleep now? How can I sleep knowing what I know? Instead I write here in the hope that typing my thoughts will empty my head enough for me to keep going.

Tomorrow I start making calls to try to get Emily into Dr Shelly's hospital in Pennsylvania. I know the waiting list is long and the expense is high but I think we need to go.

A long week

The whole family has been in major upheaval this week with the start of Pete's new business venture. My life was stressful before that this week it's reached a kind of lunar stress that almost blew my head off.



Emily's flare has been tough to deal with this week. A doctors appointment showed a bladder infection as predicted and more antibiotics were started. Time was spent with Nick (hip hop teacher) and his lovely family yesterday when they took Emily to a show where Nick dances. She had such a wonderful time meeting everyone and hanging out, how luck we are to have this great family. Emily's pain level has been at a 9 out of 10 all week and she's been on edge and crabby. The antibiotics have made her bladder more comfortable she tells me so hopefully her pain level will reduce in her feet.



Tom has become a money earner this week. He worked with Karen's husband packing and unpacking stuff for his casino parties, he very proudly came home waving a check for $60 that he's earned all by himself. He says he's looking forward to buying Christmas presents for his family with money that I didn't give him. I'm pretty proud of him right now. We did have to have a chat about honestly today because I'm finding that he's bending the truth on stuff like homework and general things that he really doesn't want to do LOL He's going to start fresh tomorrow and try as hard as he can hot to tell fibs. It's very much his age but I just don't want him to get out of control, he's not perfect just like anyone and I'm OK with the fact that he's only human. "Hellen, did you eat that twinkie??? Nooooo the dog ate it" LOL



Pete went from super wonderful to a complete butt hole and back again in a 15 minute period this week. The stress of the opening just about pushed him over the edge. Last week he was lucky if he got 8 hours sleep for the whole week so was totally exhausted so I'm trying to be understanding. I do have a tolerance level which is set pretty high, he's almost surpassed it so better start checking his food for foreign objects LOL

Me? I'm tired and I think I'm getting a cold. I know I'm run down because I've been working with Pete each evening until at least 2 am then getting up at 6 am and carrying on a normal day. I've been worried about Emily's flare up and all that entails and concerned that Tom's getting left out again. Stressed about money and frustrated with people who just don't understand what's going on in our lives. I wanted to cook and do crafts with my children this weekend but had to work instead and although I'm delighted to help I'm aware that the time with my children is limited and precious and I want to make the most of every second. All in all I've found this week totally draining.

I really wish I could call Steve and talk to him, his voice was always so calming. He went golfing in Hawaii this year and bought me back some spices. I've been drinking lattes with Steve's nutmeg on it so make myself feel better. He loved the smell of nutmeg. Wish he was here ...

Christmas

I really want Christmas to be special this year for my family because last year was so upsetting but I'm stressed beyond belief because I don't know how We're going to afford to provide anything let alone the Christmas that they deserve. My children left me a little note tonight saying that as long as we're together as a family this year they'll be happy with nothing. Happy with nothing, wow ... What an amazing statement, I find it really distressing ...

RSD ... Really Stupid Disease

http://www.youtube.com/watch?v=JOTUzQWbmYw This is a video about RSD made by a little girl Emily's age. The video covers many of the things that we've been though including PT, rehab and medication, it also gives a really good overview of RSD itself. What it doesn't show is how much pain she's in now and how much medication she still takes. It doesn't show the effects of the medication and how a simple virus can knock her off her feet. Maybe she hasn't got that far yet. I like this video, Emily and I have watched it many times including tonight at 1:30 am. I think it reminds Emily how far she's come and gives her hope.

We've decided to make a video this weekend ourselves just for fun and also to record this time in our lives.

The results of Emily's doctors visit? She has a bladder infection. The same one that she's had for months now and we just don't seem to be able to get rid of it. This infection is causing Emily to flare so I'm hoping the antibiotics will help us lose the cane. Emily's doctor and his staff are just so nice, it's like going home to family when we visit. We are so blessed to have them, they make me feel like I'm not dealing with this alone because all I have to do is call and they do what they can to help.

Hayden doesn't like the cold either

It snowed on Thanksgiving day

Slipping

As each day goes by Emily is in more pain and my feeling of helplessness grows. She did really well today because she made it through her first day of school in over a week. I'm going to take her to the doctors tomorrow to get her looked at just in case somethings going. I feel that maybe she has one of the many virus's that we have going around and that's what triggered this flare up. I would rather not think about the fact that this could be round 2 and that the RSD is spreading instead I'm going to stay cautiously positive.

Tonight I spent 2 hours cleaning Emily's room. Like any other teenager Ms Emily lives in a mess most of the time. I know her energy is very much sapped right now so as a treat I decided to make it look amazing in there. Anything to put a smile on her face.

Karen and I went to the courthouse today to get Emily's disabled tag for my car. I was handed a permanent tag when I was really expecting a temporary one and I had to stop myself from bursting into tears in front of the lady behind the counter. I made it to the parking lot before I let it go. My daughter is registered as permanently disabled ...

Watch out!

With the cold weather came intense pain for Emily. Her RSD is clearly in both feet now and walking is really hard for her. As I look at her strained expression I cant help but feel panic in the pit of my stomach but I fight it back as much as possible. With her pain comes questions. Should we start back on medication or work through it? Can we work through it this time? Do Emily and I have what it tales to go another round with this crippling disease.

My Plan of action.

It seems that warmth and sunshine helps this disease so I'm going to take up a friends offer and take a trip to their hotel heated pool so that Emily can float and have fun.

Our Christmas activities started today and I'm doing something christmassy with my children everyday for the month of December. Tom's in charge of food and Emily decorations :)

I started gentle pain relief in the form of children's Motrin. I know that she may revert back to vicodin but as long as I can I'm going to find other options.

I'm keeping the movement up, we start Yoga in the morning. I bought brightly colored Frisbees, we're off to play Frisbee golf! Despite being back on her cane Emily will continue dancing lessons with Nick. How I hear you ask LOL if you'd met either myself or my daughter you'd know. With total strength and determination that's how!

Lots of friends will be invited to my home this December to keep Emily's focus away from pain.

I'm going to look into vitamin D and other supplements for her. I read recently that 95% of illnesses are due to a mineral deficiency so I'm going to study this more and create a diet rich in the foods that she needs to keep going. She has to keep going ...

For me, I'm going to wax LOL I'm going to dye the newly grey strands out of my hair and pluck my eyebrows. Today I spent an hour in my front garden trimming my hedges and planting winter pansies. I'm going to continue the good fight because that's what I do best. Look out RSD, I'm comin to get ya!

Elvis

My thoughts tonight are for my dear friend Karen and her family. Elvis (the cute guy in the middle) passed away today. I know he was 12, I know he was sick but I also know that of all the dogs I've ever met he was the coolest. He was a gentleman of vast proportions sometimes stinky but always loyal and loving. He was a lover of cat food stealing and coffee beans which he liked to scatter randomly around Karen's dining room filling the house with a starbucksy aroma, he liked to rise in the morning in his own good time and he always looked at you with wise eyes that told me that he'd been here before. He liked to use the restroom in private either hiding behind the wall in his garden or with his back to you, he'd look over his shoulder at me as if to say "hey, can't you see I'm peeing here" He enjoyed trash especially the stinky kind and the occasional cookie that was left just in his reach. (He was a great Dane so just about everything was in his reach!!)To me it's like losing a buddy so I can only imagine how my friends feels tonight. My thoughts are with you guys. Sleep amongst the clouds sweet Elvis, I love you ...

My Confusion

This has been a tough year. For me it's taken it's toll on many areas of my life, the relationship with "friends" and family, financially, mentally and physically. It's no secret that I now carry a few extra stress pounds but a diet will have to wait until I feel able to commit to it 100% and now definitely is not that time. I look old and tired in fact I hardly recognise myself these days but again when the time's right this to will change. Financially it nearly ruined us. At times I've wondered if we'll keep the house until Christmas, if we'll have enough money to buy school supplies, fruit and vegetables and things Emily and Tom need for basic living.

Mentally this year I've been pushed to the limit. In the beginning, the thought of jumping off the hospital roof holding my daughter didn't seem as scary and ridiculous as it does today but you have to understand the extreme stress I was under. For 3 1/2 weeks I lived off black coffee and food from a vending machine, very little sleep especially as I had only a wooden rocking chair. Thanksgiving flew by in a blur. I missed our normal Christmas traditions starting with my children on Christmas eve and this made me really sad. I didn't wake to happy squealing children on Christmas morning, I woke to beeping, to "sorry, just let me take your vitals", to crying and to acute disappointment and despair.

Ask any mother with a chronically ill child and they will tell you that during this time you keep your head down and focused on keeping everything together. You can't look up for a second because if you do you'll lose it. If you start to cry you'll never stop so just keep your nose down and push to the end. Mom's with sick kids need gentle help. You have no idea what it's like to be a parent in control of everything one minute and the next you're free falling through the air not knowing where you're going to land. If you're like me you'll try to do it all alone until one day you're so sick you fear you might collapse and you finally admit to your friends that you need a little help. If you're lucky like me you'll have a group of special people who try to catch you. I'm very bad at asking for help, always have been and actually I've very unlikely too LOL but really good friends know what you need and just do it.

The people who you would think would jump in with both feet are our parents but sadly both have fallen by the wayside this year because they don't get it. I write in this diary each week to keep them updated, this is as close as I can get to actually screaming HELP US! Help me feed my children, help me play with Tom, help me pay a bill, do laundry, cook. Help me do the things I'm failing at because I can't be everywhere at once. Tell me it's going to be OK, that I'm doing well, that you're proud, hold me ... Don't sit in silent judgement because you're just not getting the attention that you think you deserve, jump in, do something. Don't make me beg. How dare you ...

Today Emily is back to using a cane. Can you imagine how that makes me feel? How Emily feels? I'll pull strength from somewhere to stay positive and get Emily back from her flare up because that's what I do best but please don't expect me to "be there" for you because my nose is to the floor and I'm pushing to the end. Don't tell me that my silence is " no way to ask for help and it's about time I learned that" don't tell me that "No Christmas presents for you until you come here (5 hours away) and get them". Don't you people realize that you can't come first? That my fight is a tough one and that I need to stay focused to be everywhere and do everything that needs to be done. Why is it so hard for our families to understand? Why?

I don't know why it's so hard for our parents to understand because we are their children and we're struggling. What parent wouldn't want to be there? I won't forget but I can live with it, I just hope they can ...

November

October

September

August

July

Medication and brace

June

May

April

Physical therapy and pain

March

Wiped out on medication.

February

Diagnosed with RSD and peripheral nerve damage in both legs.

January

Total agony

December

3 steps with her walker and in yet another rehab

The beginning

Lets jump!!

It's been 1 whole year since Emily was injured so we had a party!! Just over 1 year ago my dear friend Karen invited my children to a giant inflatable adventure playground but sadly Emily felt under the weather so wasn't able to go. When we realized the extent of her injuries Emily looked at me and told me that if only she'd have been able to go because now she never would again because she'd lost the use of her legs. This broke my heart.

I decided then and there that Emily would have goals. Each month I would set her a task until one day she would be able to function medication free and go jumping with her close friends. Today she achieved her dream. Stage one back 1 year ago was to get her to sit up just for a few seconds. From there she had to sit without help or support. Next came sitting on the edge of the bed for 1 full minute. 5 minutes followed that then time out of the room in her wheelchair. Slowly she achieved her goals and we progressed. Our main objective was to get her feet on the floor so we used animal weights. Emily had to put a mouses pressure on her foot followed by a rat, a cat, a dog, a monkey, sheep, horse and finally full weight, the elephant. By Christmas last year she reached Horse.

January bought elephant and a new challenge. The walker!! "Just 3 steps Emily, you can do it!" First 3, then 5, 10, 15, 20, 30, 50 and finally one lap round the house. All the time Emily's leg was up like a flamingo and locked in that position. We did extensive PT until April when she had botox in the back of her leg, an epidural was placed in her back to help with the pain from the massive PT that had to be done to "break" the hold on her hamstring. Another month long hospital stay.

In May her AFO was fitted and a Cane introduced. Again 5 steps then 10, 20 then once round the unit until 1 day she could walk with no Cane just a gain belt for support. We pushed on until 1 day she took steps alone, pride burst from her like beautiful fireworks and she danced again for the first time. Humble isn't even close to how this journey has made me feel. With each scared step I've been there for her holding her hand and willing her on at that time we were almost an extension of each other as my energy drained into her.

More goals were set for her and I set them high. To get her back to anything like a normal life she had to see a flicker of hope, progression was the key. She had until the end of June to teach herself to swim with 1 good leg in our pool, she did it! She had until July (her Birthday) to jump on our trampoline. A simple task to most but to someone with RSD in one foot this is extremely hard.

August's goal was to play beginners tennis and guess what? She made the final! In September she had to do 4 full days at school per week, October her goal was to take Hip hop classes and to kick all medication.

What was Novembers task??? To get back to lets jump with her friends and participate just like everyone else. With great pride I can confirm that a fun time was had by all tonight and as she's settling down for bed a huge feeling of achievement lays firmly on my daughters shoulders and rightly so.

Our next goal? To be at lets jump this time next year but with no brace and with more stamina. Congratulations Emily, this day was yours and I'm so very proud of you.

Wii sims after the show

Emily and Andy

Alice in Wonderland

Props!!

It's been a while since I posted because it's been insane here. Emily was one of 3 prop masters in her school play and that pretty much turned me into a taxi. With Tom's school time being different from Emily, play practice and doctors visits I've been zooming around all over the place.

Alice in wonderland was amazing. Watching Emily slide about on her stomach under a small rectangle of wood handing props to the actors took some getting used to. As you know I'm all about shoving her out there to live her life but this pushed me a little far outside my comfort zone. She told me it was OK, that only 2 people had stepped on her so far!! then proudly showed me a perfect footprint on her side. She's smiling and enjoying herself so what more could I ask. The play has filled her with a sense of normalcy so I'm looking for something to replace it now that it's over. I think I'm going to enrol her in a babysitting training course so that she can learn CPR.

Tom cooks baked Alaska

While "cooking with Sam' takes a break from Thursday nights I'm taking him place. Today I taught Tom how to make the perfect baked Alaska. What a great job.

Emily and Andy

Best friends since 2nd grade.

Scary!

Carving her pumpkin!

Free smiles

I've added a new link to Emily's blog. You don't have to download a ring tone but I can't add "cuppycakes" without the link below. Click the play button, trust me it'll be so worth it!! Emily absolutely LOVES this little song it's guaranteed to put a smile on your face.

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!