6 more days!

The days are flying by somehow as we continue to prepare for our trip to Washington D.C.!  We are so excited!  I can't wait to meet so many of my JA "family" from Facebook!  There are so many people that I am anxious to meet!  There are several that I wish could be there and won't be.  :(  Maybe another time I'll be able to meet people like KW and SBH!  The conference should prove to be wonderful experience for us all.  Not only do we have 4 days of the conference to look forward to, but all of the museums, the National Zoo, and meeting people outside of the conference like LPM!  People that haven't connected to anyone via social media such as Facebook probably wouldn't understand, but in situations like mine, these people can become closer than your family, and certainly more understanding in many cases.  (I am blessed to have a very understanding family, but many others don't.)     These are people that I hear from daily.  I worry if things are quiet on the other end for a day or two.  I can't wait!

We are also anxiously awaiting Emily's infusion.  Let me just say right now what a dork I am.  I tell ya', I have spent a very large amount of time over the past few years researching Em's various conditions.  I can tell you very specific things about her diseases, certain antibodies, what they mean, and even in some cases how they use them to test.  However, sometimes things that I really know just don't become obvious to me when they apply in our situation.  My husband pointed out something to me the other day that was a really big "Oh, DUH!" to me.

Every month for the past six or so months, the week before her infusion Emily gets "sick".  Every month we take her to our pedi, and every month she has been put on antibiotics.  Oh, for sure she has had a sinus infection or two in there.  Normally she would have her infusion this Friday.  So, it really shouldn't have surprised me that Tuesday she had a fever.  I'm not really used to her having fevers.  She was on Enbrel for 2 & 1/2 years without ever having a fever, including when she had H1N1.  Fever to me has still had the "sick" stigma attached to it.  While on the one hand I know that many RA patients have fevers when they flare, this has never been a trademark for Emily, so I never even considered it.  Until my hubby pointed it out.  Wow, how did I miss that one???  She's flaring big time right now.  Her elbows are better but her knees are giving her a very hard time.  She's trying not to walk.  The fever lasted one day; it's gone now, but she's still hurting.  One more thing to bring up at her next appointment.  And I was so worried about her being sick all the time.

This week has been pretty special for me for little reasons.  I don't post my religious views very often, as I understand that not everyone believe that Jesus Christ is our savior.  I try to make this blog for everyone to learn from, but I have to say this.  I don't believe in coincidences, and I feel I need to post how I feel right now.

If you asked me back in 2007 if I thought that I was a good person, I'd have told you that I didn't know how to answer that.  I wasn't a bad person, but I didn't particularly like myself.  I was very quick to point out my flaws, but not so much with my good points.  I know that I have said before that Emily's diagnosis changed our family significantly.  Yes, it's very sad, and yes, sometimes I still cry for her, & I seem to cry when I try to tell people what's wrong with her.  Overall, I'm actually very blessed, very happy, and very much at peace.  Learning to let go, let God has helped a lot.  Knowing that it's out of my hands and up to God helps.  I believe that He has a plan for us.  I see evidence of that daily.  It's really cool to know that I'm being used.  I know that, no matter what, He has a purpose for me.  I know that I help people.  On the flip side, I know that many, many people have helped me.  I feel that my contributions are small, but important nonetheless.  I go out of my way now to find ways to help, something that I never thought about before.

I had two conversations this week that made an impact.  Both were at work.  I had someone tell me that, thanks to a conversation that we had, she found out that her daughter has Graves disease and thyroid cancer.  She's ridiculously young.  I think she said 11?   I had told her get a second opinion if your gut tells you your doc is wrong.  It's easier to get a second opinion and find out you're wrong than it is to find out when things go really bad.  Her pediatrician insisted that there was nothing wrong with her.  It was her second opinion doc that found out why her daughter was acting so tired and different.

The other happened after I brought something in to help someone.  I just love this lady anyway, but she has fibromyalgia and she's having a very hard week.  I told her that I would remember to bring something in that I knew would help.  I see when she's having a hard time.  I'm in tune.  She took me aside later to tell me that she could see how God was working through me, and He gave me a good heart to help people.  That meant so much coming from this person because she is someone that I look up to a lot.  She is one of two people that I really feel a spiritual presence around all of the time.  She & Lita seem to radiate a peace and love that I am drawn to.  These are the types of people that make me want to be a better person, and they are both so loving, so accepting.  I feel this is how we were all supposed to be.  Anyway, the whole conversation was just so unexpected and deep.  I love having deep conversations with her because she gets on a roll and starts spouting scripture.  I learn so much when we really talk.  No matter what in life, I know that I have a lot of love.  That is all that I could ever possibly ask for or want.  Love is so much better than anything material that I could think of.  "Love is not proud, love does not boast.  Love, after all, matters the most."

Not at all as I expected

One thing that I have learned in our journey so far is to take one day at a time.  I try not to have so many expectations, because you really just can't predict autoimmune diseases.  Usually, just as I think I have things figured out, I get knocked down a peg or two. 

I was really looking forward to Emily's infusion this month.  I knew that she really felt that she needed it since her wrist & elbow were still bothering her, but I also had a long list of questions.  Usually, kids with Dermatomyositis are seen every 4-6 weeks.  It's a rough disease, very hard to get under control and can suddenly swing in the opposite direction quickly.  We weren't seen last month, so I though for sure she would see a doctor this time.  I knew that they had changed the way they schedule patients, but I hadn't realized that they were scheduling the kids for IV's and not telling them that the docs weren't in.  I made sure that they will be in the next time we are there.  I wanted to talk about her flaring arthritis, her inability to eat more than 2 bites again now that she's on lower prednisone, and I wanted to see about repeating the pulminary function tests since Em totally didn't even try last time.  It was the day she was being released from the hospital and she just didn't want to be bothered.  Now she's been sick more in the past 4 months than she has been ever since being on the immune suppressors.  Maybe it's the Prednisone.  I don't think so since they increase her doses when she's sick.  I really wanted to talk about all of that, and a patch on her head that may be psoriasis.

Em did very, very well with her treatments.  It was lovely to walk in to friends saying hello  :)  Emily went off with her favorite nurse to have her needle... BY HERSELF!!!  I was shocked!  This was the very first time that she didn't cry, whimper, or even need me at all.  I was so proud!  And all the while she was talking his ear off.  Unbelievable.  The rest of the infusion went without anything noteworthy... until we were leaving.

I had asked the nurse's for a copy of her labs.  I knew that the doctor's office would do that, but I didn't know the infusion room nurse's would.  The copies they gave me showed that day as well as results from the month of May.  They didn't show high/low, so I had to take them home to compare them with my copies from the doctor's office.  Those copies do show ranges.  We had gotten her muscle enzymes down.  Last month they shot up quite a bit.  This month they are only 2 points away from being in the high range.  I had been watching how pink her knees had been getting, but she didn't seem to feel a problem so I didn't worry about it.  At least it's summer break, but she shouldn't have to go through this.  I know our docs are doing everything within their power.  I know this is a crazy hard disease to get under control.  I just thought that maybe something would be easy.  Just this once.  So, I'm keeping a sharp eye out and trying to figure out what to do.  I'm sure the answer will seem clear in a day or two.  Frustrating.

Well, we have Cub Scout day camp in the morning and it is way late.  Have a good night!

Our amazing trip!

We had a truly magical week at Give Kids the World and the theme parks around it.  On Sunday we arrived at the village, had lunch, checked in, then Kevin & the kids unpacked while I went to orientation.  After I got back to the villa, we went to the pool.  Before taking Procardia for her Raynaud's, Emily couldn't go in a pool that had a temp lower than bath water.  I'm happy to say that we stayed at that pool for about 2 hours.  And I think I broke my "bee curse".  Yes, I know it sounds silly.  I have always been a target for bees. For whatever reason, for the past few months, everywhere I go I find dead bees.  Whether inside or outside, there have been dead bees everywhere.  Well, I found a bee struggling in the pool.  Despite always being a target, I grabbed a stick, pulled it out of the pool, and stuck it on a table in the sun to dry.  I'm happy to say that I haven't seen a dead bee since.  After we left the pool the kids went on the carousel.  They had several turns before we went to go make their dream pillows & start the process for Emily's star.

On day 2 we met Rapunzel!  I hadn't realized that it would take ONE HOUR to get from the parking lot to the inside of the Magic Kingdom.  Thankfully I brought the paper with the info on where to go (the First Aid station)  with us.  There was a phone number to call in case we ran into any problems.  I let them know our situation assuming they would tell us that the deal was off.  Rapunzel was waiting for us when we got there.  She was amazing!!!  She stayed in character the whole time.  She engaged all of my kids in conversation.  Gir showed off some of her drawings, but mostly she & Emily chatted away.  Em was sooo happy.  She was still glowing when we went on our first ride.  I'm still not sure what happened but somehow while getting off of the ride she hurt her elbow.  Back to First Aid we went.  After some time with an ice pack she was ready to go back out.  About an hour or so later we went on the Peter Pan ride.  While she was getting into the car they stopped the moving platform.  That made her lose her balance and she once again hurt the elbow.  Back we went to First Aid!  This time we got an Ace bandage to go with her ice pack.  She wasn't really sure if it was really from an injury or her arthritis.  I believe it's a combo.  Either way, she said today that it's finally starting to feel better.  The rest of the day was less eventful.  We stayed for the Electric Light Parade & the fireworks around Cinderella's castle.  It was a magical day! 

Day 3 brought us to Universal Studios Island's of Adventure.  It had been Gir's dream to visit the Harry Potter area.  After sleeping in to recover from the day before, we got her there ok.  The crowds were unbelievable.  People were everywhere!  To get back through a store I went outside & around.  I cannot deal with too many people, especially in shopping situations.  I'm fine with being closed in like with MRI, but not when I'm surrounded by people.  I had to get out of there.  One would think that in an area devoted to kids and adventure, there would be things for the younger set to do.  Nope.  There really wasn't much for my little guys to do there, so we split up.  I took the little peeps to Dr. Suess land & Toon Town while Kevin & Gir hung in Potter Land.  From that point on the kids pretty much enjoyed the rest of the day.  Emily told me the next day that when we were on one of the water rides, she felt like she couldn't breathe.  I wondered.  She had a weird look on her face.  She seemed more fragile the whole week. I also think that may have been the day that she hit her head on a ride.  That hurt her all week.  She really enjoyed the Spider Man ride here.  And Zach got to be "Special Conductor of the Day" on a ride in Suessville.  After we left we had to go in search of a battery charger for the camera.  My batteries died after about 7 pics in Universal.  We had attempted to charge it the night before but apparently the USB to DC converter for the iPhone isn't compatible like you'd think.  I also picked up a new battery but only just in case my battery didn't charge.

Day 4 was Sea World.  After the hustle & bustle of Harry Potter land we needed a day of down time.  We figured that Sea World would provide the perfect opportunity.  I guess the dolphins just don't hold as big a draw as Harry Potter.  The park was far from a ghost town, but it wasn't crowded either.  Perfect!  Kevin was really getting tired of crowds of people cutting him off while pushing the chair, running into him, running their kids into him, or jumping over the chair while moving.  (Seriously.)  Sea World was our first day that we felt able to relax.  It was a wonderful day just looking at the sea life, watching shows, and feeding the animals.  My favorite moments of the week were spent here, watching 2 of the kids feed the dolphins.  My son was off pouting in a corner because he wanted to go ride rides instead of feed the dolphins, but my girls had a blast.  There was such joy on their faces.  And who doesn't love dolphins?  I was really excited.  I love the stingrays, too.  Em's more scared of them, but Gir & I love them.  I am NOT a photographer, but I lucked into this shot: 

Isn't he cute???  We didn't get to go on the Manta like I really wanted to, but we did catch one dolphin show & the new Shamu show, "One Ocean".  We left feeling recharged and happy.

Day 5 we decided on Animal Kingdom.  As with Sea World, I really felt happy here.  It's amazing how many people rush around trying to see things but completely overlook the obvious.  AK is such an amazingly beautiful place, created out of love.  There were so many things that I was totally drawn to.  While I could happily work at Sea World, I could totally live at AK.  The girl always enjoy animals, so they loved it.  It was so cool just looking around, wondering what you would find next.  I took tons of pics here because I really fell so in love with it.  This was another magical day, but I did miss my dinosaurs.  I was heartbroken about that.  :(  I have always had a love for dinosaurs and the mysteries surrounding them.  I knew that my son would appreciate it, and Gir thinks they're cool.  I really wanted to take my kids to see the dinosaurs, and we totally missed it.  I think I moped the rest of the day.  I knew how stupid that sounds, but I couldn't get past it. 

That night was Christmas at the village.  We made it just in time.  They actually do pictures with Santa for the kids, a celebration with cotton candy and snow, and they give every child a toy.  We are so in awe of that village.  It's amazing!

Day 6 was our Hollywood Studios day.  We slept in again.  The kids had a hard time keeping up with me  :)  We are just not morning people.  We were told that the Star Wars parade started at 1 PM so we planned to get there in time for that.  Nope.  It started at noon.  Getting there at 1 we missed it.  But that was ok.  We caught up with several characters and got pics and autographs.  One of the many Disney employees that we met told us how to make the most out of our day.  It was unbelievable how many volunteer at the village.  They say that Disney encourages them to volunteer there.  I thought that was sooo cool!  Anyway, we did the Star Tours ride twice.  The kids loved that.  We did the Toy Story ride.  Emily really loved that!  She was so excited!  It was really cool to see her so happy.  I tried to get good pics, but of course it's always like a day late, dollar short.  Gir tried out for American Idol (Disney version).  While she was amazing, since she sang Evanescence she was told she wasn't "bubble gummy enough".  She expected that, she really just wanted the critique.  The judge was impressed with her voice so she was happy.  I auditioned, too.  I can't believe how nervous I was.  It's been many years since I was active in the entertainment industry.  I can't remember what play I was in last but I think my last talent show was 1992.  I think the last time I sang karaoke in front of a crowd was when Gir was about 5.  I didn't plan on singing so I didn't have anything picked out or rehearsed.  I did ok enough in spite of that.  She could tell that I had a good voice, but I was trembly and forgot my words since I didn't really plan on singing.  I would have psyched myself up had I known...  We watched the Muppet Show  <3, rode the Tower of Terror, and the Aerosmith's Rockin' Roller Coaster (my new favorite ride!!!)  My little boy went on it- his first loop coaster.  I think we got him hooked!  Emily... not so much.  She had nightmares about the Tower of Terror.  She didn't go on the roller coaster.  I think it may have killed her.  As we were leaving they were rounding people into the "Fantasm" show.  Even though we really needed to get back & pack, we went to the show anyway.  We all really enjoyed that.  It was pretty amazing!

On our last day we had choices.  To check out and hang at the village all day, go to our last day at Universal or just go home.  Everyone voted for going home.  I believe they were all homesick, but I also think to a degree they didn't want to leave so they wanted to just hurry up and do it.  Get it over with.  Not to mention Emily was stuffed up.  I was truly afraid that she was getting sick. 

She went to our pedi today.  She said there's a lot of viral stuff going around, but just in case she put her on Omnicef.  Omnicef is a strong antibiotic that they generally only use when everything else has failed.  Em has been sick more than well the past few months so she figured this may clear up any residual drainage or infection.  With the chance of pulminary hypertension always hanging over our heads, I worry.  Especially now since she has been sick more often than not lately.  The other thing that disturbs me now is that she's back to barely being able to eat anything now that she's on a lower dose of Prednisone.  (6mgs is still high, but it certainly beats the 42mgs she started out on).   Before I had always thought that she just needed Prilosec or Prevacid.  Well, she's on Prilosec.  She's been on Prilosec since October.  I have a TON of questions that I wanted to ask the docs tomorrow when we go for her IV meds, but I found out today that the docs aren't in at all tomorrow.  Since she wasn't seen last month, and most JM kids are seen every 4-6 weeks, I'm feeling a bit anxious about this.  I wanted an opinion on the GI issues, I wanted to have her PFT (Pulminary Function Test) repeated since she really didn't want to be bothered the last time.  It was her last day of her hospital stay and she really just wanted to leave.  I also wanted to see if we could increase her Remicade and decrease her steroids.    I'm not very patient.  We shall see what happens tomorrow.  I'm assuming that the ARNP's won't be there either, but one can hope, right?  I'll post tomorrow or the next day how it goes. 

We're back!

The week was crazy, wonderful, exhausting, exhilarating, beautiful.  We got back home on Saturday, earlier than expected, but we were all so tired.  Though it had its rough spots, for the best part the week really was a wish come true for Emily.

I've been too preoccupied to post.  I'm still trying to sort things out in my head.  So much ran through it this week!  So much happened.  So many memories made.  Give Kids the World Village was a wonderful, beautiful and amazing place that I'm having trouble putting into words.  Before I formulate all of that, let me say tonight that I am very grateful to Boston Market, Perkins restaurants, Breyers ice cream, Hasbro toys, Walt Disney World, Universal Studios, Sea World, and the many, many volunteers that help to make up this amazing community.

The story of Give Kids the World can be found here.  I was first told this story while in the pool with other families.  We were enjoying watching all of the different children, some in PVC crafted wheelchairs especially for the water.  It was amazing how many different families were there, yet there was a feeling of kinship and understanding here.  The volunteers come from all different walks of life.  Some are high school students doing their community service projects.  Some are college kids earning credit.  Some are retired folks, occasionally coming from different states to spend their vacations helping these families.  And many are employees of the theme parks.  We had figured that the theme parks may feel we were a burden- getting free tickets should be enough, right?  No, they totally understand that they are giving some children the hope to beat their diseases.  Some children will cherish these memories as they fight long, life-long battles.  And others don't have time for any other wishes.  They know the tolls that having sick children can take on a family- mentally, physically, financially.  These theme park employees would sometimes come up to us and ask us how we were doing, how we were enjoying our stay, and all mentioned how they loved the time that they volunteered there.  Many are still active volunteers.  Others can't fit it in right now but look back fondly.  I cannot begin to express to you how amazing a community this place is.  And they think of everything!

On our first day we walked in to find a toy in our villa.  (They left toys daily for the kids.)  The villa was larger than our house.  The kids bathroom had a jacuzzi and a huge handicap shower. We were given coupons to take to the Star Tower to make "dream pillows" for the kids, and also to place Emily's star.  Since some of these little people lose their fights, they decided to give them a star to place up on the ceiling that would stay forever.  This would always keep a part of them in the village.  I believe they said there are 150,000 stars up in the main area, and they expect the new star tower (only opened 3 weeks ago now) to be full in 6-9 years.  A star for every sick child that will be placed, and with the guidance of a star fairy, always found by the child or their family if the child passes away.  What a beautiful concept!  They want your child's week to be "a week of yes's".  



Though she felt fragile this week, camera shy still due to the steroid weight, and flaring a bit, Emily still managed to have a wonderful week of dreams come true.  We laughed, we made new memories, we had fun, we enjoyed the rides but also the nature around us, the animals, and feeding the animals!  My favorite moment?  Watching my girls feeding the dolphins.  My son was busy pouting because he wanted to go ride a roller coaster, but my girls enjoyed the experience for what it was- an amazing experience and momentary connection with a dolphin.   I wanted to purchase the actual Sea World photos, but with the crowds of people trapping us then moving us along, combined with the drama that my son created, we somehow forgot to go look at them.  This is my consolation prize  :) 

I shall give a real update soon with actual details of the trip.  Let me say now that Gir seriously almost killed herself before we even got into our villa.  She tripped on a bag while trying to exit the van.  I saw her feet in the air flying as she went out the door.  She scared the heck out of me!!!  I was terrified, but she was somehow totally ok.  She was bruised up all over, and she bit her lip but otherwise she was fine.  She was very, very lucky.  I was worried that may set the tone for the week, but it was surprisingly calm and peaceful.  More to come soon  :)

Thank you, April. Much needed!

April has probably been one of the best months we have had in quite some time.  April has been filled with good news, and happiness over things to come  :)

April was kicked off by our camping trip with our Cub Scout family.  I had really been looking forward to this weekend as a little vacation.  I was hoping that Emily would be ready to run around with her friends, but she actually wanted to be with me for 98% of our time there.  The first night I think we kept everyone awake :)  She has some, ummm, flatulence issues.  Honestly, my little princess can let 'em loose better than any guy I know.  Our first night in the tent she had gas so badly that she woke up her brother, and across the campsite her farts were heard.  Kevin got a text saying "Gas gas gas :)"  and we all about died laughing!  This was around 4 A.M.  We had a few people come over to the tent to see what all of the commotion was about.  We were hysterical!!!  What a great day that was.  I love being out in the woods, and being there surrounded by family (including extended!) was really cool.  We took a nice hike the next day.  I wish I didn't have to push the wheelchair, that Emily wouldn't need the chair, but I'm so happy that she was able to come because of it.  We saw some beautiful plant life along the way, & even stopped to grab some wild blackberries!  That weekend was just what I needed to feel back in tune with reality.

Though it's not a huge, noticeable difference yet, Emily is definitely losing some of the steroid weight.  She is so excited about that!  She keeps telling me about different things that she can do, like button her pants more easily.  I see a huge change in her attitude this month, likely due to the last steroid decrease.  She has more energy, she wants to do more, she has some goals set.  Because of this she is happier, doing things like walking more and playing Wii Sports again, and finally she is back to loving her brother like a friend!  That has been the hardest part of all of this.  She & her boy were always so close; suddenly she was cranky towards him more often than not, yelling at him and just being mean to him.  I'm so glad they are playing together again.  As Kevin said recently, harmony has been restored.  It's the little things that we've missed, like that.  She actually wants things again!  I never thought that would make me happy!  Yes, truly April has been a turning point.

She's doing well in school, too!  She had the 2nd best grade in her class on her Time test.  That is exciting partially because she missed that chapter & she worked extra hard to catch up!  For a while she didn't care at all about her school work, or anything else.  She's really determined right now, & I'm so thrilled to watch it happen.  We had a fantastic IEP meeting in school for her.  They are increasing her time with the school Physical Therapist, trying to pull her out during PE since she has such big limitations in there.  She can do low impact things like walking, but nothing that could potentially cause injury as the steroids can cause brittle bones.  Her teachers are very proud of how far she has come this year not only with her school work, but also with her attitude.  She used to have "math breakdown", but she seems to have moved past that.  We are very, very blessed that our school is as caring as they are.  Before placing her in this class they really stopped to think & talk about where the best place for her would be.  They were absolutely right to place her in this class.  She isn't just taught; she is cared for.  Obviously, any parent would want their kids cared for in school, but when it's a child that has dealt with so much, that really needed to be nurtured and loved, it is much more appreciated.  I love these teachers in a way that I don't think they could understand.  You just couldn't know how much their love for her has meant to me, or to her.  They have impacted her life in a huge way.  Truly that is God watching out for us, trying to make some things easier.  They have been a gift.

Our Make A Wish volunteers called just the other day to say that we have been approved for our Disney Make A Wish trip!  We are all so excited!  All that I need to be happy is to watch the kids be happy; that makes this a dream come true for me.  I was so happy that as soon as I hung up with our volunteer, I burst into tears.  The kids kept asking me what was wrong :)  I was just so happy.  There have been so many things that Gir has wanted to do, but we haven't been able to accomodate her because of time or money.  There are many things that this trip will address for her.  And it will be wonderful for my dear, sweet little man.  He's such a good boy, so tolerant & sensitive.  He needs something really good.  My mom told me the other night that he was telling her how things were going so well that he was worried about what was going to go wrong next.  That's how things roll around here.  I swear, it's always things that we could never have controlled in a million years.  But hey, life is never boring!

More good news is that Kevin went for his yearly physical to find that everything looks good!  His labs are where they should be, too.  He is getting better slowly but surely.  We go on our trip at the end of  May.  My hope is that by then Kevin & Emily will feel so much more like themselves.  I want them to both feel good & have a great time.  This trip needs to be magic, especially for Em, but for Kevin & the kids, too.  I am so excited that I could burst!  May is also our arthritis walk, too  :)  We look forward to that every year.  It's so nice to be with people that understand you, even if you don't know them.  I'm sure that I'm forgetting to mention a bunch of things, but I've covered the big stuff now.

I found a blog post that really hit me.  It made me stop and think about how Emily must feel.  Here is the "Arthritis Angels: A Walk In Someone Else's Shoes" post. 

Hey, it's spring!  Don't forget to look around at some of the beautiful flowers, including weeds, that have popped up  :)  I truly believe that these are gifts to us, meant to put things into perspective.  Will you stop to smell the roses today?  You really should....  

Very good appointment!

I apologize for not updating sooner.  My little bout with a sinus infection has become a battle.  I have been feeling kind of like I was hit by a truck.  Since I ache too much to sleep, I shall write  :)

This past month has been a turning point for Emily, so I knew that this appointment would be good.  Before as the steroids were so high and their effects hit her so hard, she had a rough time adjusting.  I can't imagine how she was able to deal with the dosage that she started out with- physically or emotionally.  Back in October she was started on 42mgs.  She had 21mgs in the morning and the other 21 at night.  With this appointment we continued on the taper that we started months ago.  They dropped down to 6mgs this month!  I had expected it would drop to that.  Last month when they had us take her to 12mgs for 2 weeks & then 9mgs for three weeks, they told us they would likely drop her down to 6mgs this month.  They also told us that this is generally around the time that you start to see the steroid weight drop off.  That is huge because it is so uncomfortable.  It is as hard for her to bend over as it is a pregnant lady, and her center of balance is off.  She still has a long way to go but she knew that it was drop off because she can fully open her jaw now!  That was yet another thing that had made her sad, & she has been waiting for the day where she could finally open her mouth again.  Last visit they said that her muscle enzymes were better than they had seen them, and normal for the first time.  This time they were even lower!  That's huge.

They did decide to increase her Remicade for next time for her joints.  Her back has been bothering her enough so that she wanted to get her infusion.  I still expected the usual fear that grips her the day before, that causes a huge crying jag that night and has her silent and terrified the whole way over.  Usually she barely speaks on the way.  This time she was in a really good mood, really ready to go.  She watched "Tangled" on the ride and was even singing along to the songs!  I haven't really heard her sing since September.  I think she knows that right now it's all downhill, so to speak.  I try to hard to keep her educated and in the loop.  She understands that this is what I've been telling her would happen.  She told me the other day that she's really glad that we switched to Shands.  I'm thrilled that she's happy there now, even if she does have a way of yelling at Dr. E every time we see her.  I'm not sure why.  I think that she resents her still from keeping her in the hospital, even though she knows it was for the best.  I'm just happy that I can finally really say that she's doing very well.  She does still have a long way to go, but she's not flaring right now.  I love how she went from never telling anyone that she was hurting to telling me every little ache and pain.  Sometimes it's silly things, but I'll take the silly if she's willing to talk about it.  She's acting more like herself, talking to her brother like he's her best friend again, really trying to tackle school with a new enthusiasm, & she's really excited about Make A Wish.  I am so, so glad that we have that so she has something amazing to look forward to.  I truly believe that has a LOT to do with how happy she's been lately.  At her lowest points it gave her something happy to think about.  What a huge, huge blessing that is.  I know that we have a long, possibly difficult road ahead with her disease.  It could stay like it is, it could turn into full blown Scleroderma or Lupus.  Or it's possible it could go into remission.  We have to keep a vigilant eye out for signs of pulminary hypertension & other systemic signs, but right this minute she's the best she's been in a while.

There are many other children out there with arthritis that are not doing so well.  Little GS has so many struggles with his vision.  They actually had to put a drain in his eye.  His family has been fighting for his vision for years.  DSW has had more pain from arthritis that they can't control that she uses her wheelchair now way more than she should have to, but they are stumped.   PL has been trying to be pain-free for three years now, & they still don't know how to help him yet.  H&J are still looking for the meds that will help them, too.  These are just the kids in our state.  There are too many kids suffering silently.  These brave little heroes need a cure.

Where does the time go?

The past two or three weeks have just blown by.  There are so many things that I have been wanting to write about, but I just haven't had time.  Here I sit with my face feeling all sinus-pressurey, knowing that I won't be able to go to sleep, so now seems like a good time :)

We've had our usual ups & downs.  I decided that we desperately needed something fun to do, so we took a Sunday & Monday over the kids spring break to go to the Rennaissance Festival and Busch Gardens.  The kids had a blast, & I did, too.  It was harder for Kevin.  He's still trying to get back to himself, but he trooped along trying to make the best of it.  My son was so excited for BG!  We used to always have yearly passes, but we hadn't gone in a couple of years.  It's amazing how much has changed, and how big my little people have gotten.  They were interested in a whole different way now.  It was a truly wonderful couple of days.  It was eye opening in some ways.  There were several kids around her age that just stared at her like she was an alien.  Some parents, too.  We tried to shift the focus off of her, but I think they are drawn in by her chair.  I don't think that she noticed, & we weren't going to point it out.  Then, on her first day back to school she came home angry.  Two little kids were pointing and laughing at her.  My sweet little girl went right up to them and yelled at them.  I am so proud of her.  I think that was a first.

Emily started to cough last week.  I have gotten to this point where I really just dread taking her to the doctors.  We are just so over it.  We always seem to have someone get sick whenever we have plans, or at every other bad time.  I often think how nice it would be to have just one month without a doctor visit.  Wouldn't that be lovely?  We have a fantastic Pediatric Urgent Care center in our area, so I took her there.  They're open the odd hours so you can go there when your pedi is closed.  We went late Friday night.  They have their own lab, x-ray machines, and pretty much everything that an ER would have, so it seemed like the best option.  The only downfall is that they only accept one insurance per patient- not 2.  And they don't take Medicaid.  Our primary is United so I figured I'd just eat our copays because we were already there, and she felt comfortable.  We were there for quite some time, but mostly because the doctor doesn't deal often with conditions like Emily's.  (When you have something that only affects about 3 kids out of a million you find that many doctors aren't schooled on it.)  I was thrilled that he took the time to educate himself before he came in to see her.  For once it was only her asthma acting up :)  The doc put her back to 30MGs of Prednisone for the week, up from her current 9MGs.  We took her back to our regular pedi a few days later.  She was clear, no asthma detected.  Somehow, I wasn't really surprised when the nothing turned into a sinus infection.  Our pedi actually told us to keep her inside until May.  I'm not really sure how practical that is, but we will try.  We go back to them on Monday, and then for her Remicade on Tuesday.  I plan on asking her pedi if it's ok to take her camping.  I have been dying to go;  camping is like a vacation for me.  I need to be in the woods, need to bond with nature for a while.  We put off so many things already.

While Emily is recovering slowly from her sinus infection, we are counting down the days until her next infusion.  She's only been on Remicade since October.  We're still trying to find the right dosage for her.  Normally we would have gone this week for her infusions, but the school & hospital is on spring break.  (Crazy, eh?)  That means waiting an extra week for her arthritis meds.  Poor little bean is not having a good week.  First it was her wrist, then her knee.  Those seem to be better by now, but now it's her back.  She was crying trying to get into her bed tonight.  :(  Her back is hurting her so badly right now.  I thought that it was the muscle that she pulled at PT a few weeks ago, but Kevin is brilliant with massaging and feeling muscle abnormalities and he thinks it's the arthritis.  (When it comes to muscles, I couldn't feel my way out of a paper bag...)  I'm hoping that she can get through the next few days with minimal pain.  Tuesday we'll have a very long drive.  I hope she can handle it.  I bought her "Tangled" since we all loved it so much.  Maybe I can play that for her on the way up to the hospital to take her mind off of the pain.

Speaking of pain, the bills from these types of hospital/ doctor's visits are crazy!!!  People may have thought that I was crazy when I said that I got social security for her, but look below at this insurance statement.  This is what I get from our primary, before it goes off to Medicaid.  (Thank you, Lord for Medicaid!!!)  How can anyone afford copays like that???  I surely could not afford to pay $1100 a month just for treatments.  Granted, it's better than $10,000 but, really???  Nope, she doesn't have anything serious wrong with her.  We just like to waste money.  Yup.  I've heard that IVIg's cost something like $36,000 each.  How can anyone afford these things?   This is why I support the Arthritis Foundation's quest for a cure, and funding for NIH.  (National Institute of Health)  There has to be some better way to get people their medicines than IV only.  There has to be other treatment options waiting in the wings for when these meds no longer work, but you've run out of options.  There has to be a cure somewhere, some way.  We just need the right people working to find it.  It isn't fair for our kids to suffer so greatly, or for adults.  It's so sad when your child tells you that they are looking forward to their infusion.  To me, that is just wrong.  We need to support better research, but we also need to raise awareness that many diseases under the arthritis umbrella are autoimmune, not caused by old age.  It's just as unfair for someone to tell these victims that they can't be hurting because we can't "see" their pain. 

Remark Code Description Date of Service		Billed Amount		Network Discount		Applied to Deductible		Paid by Plan		Patient Responsibility
D2* Op Misc. Services 02/01/2011  - 02/28/2011	$9,474.30	$3,979.21	$0.00	$4,396.07	Coinsurance  $1,099.02
Subtotal(s)					Coinsurance  $1,099.02
Totals	$9,474.30	$3,979.21	$0.00	$4,396.07	$1,099.02

	Amount You May Owe	$1,099.02

JA Picnic, Make A Wish

After I got home from work, I laid down to watch TV, and woke up 5 hours later!!!  (Oops!)  The great part about it?  It's 4 A.M., almost everyone is asleep, and I now have time to update without everyone talking to me at once  :)

Emily & Parker

These 4 got along so well!  My son has a huge crush on Dakota, and Emily & Parker clicked quickly.

This has been a wonderful week!  Starting with last Saturday, (which I realize is now more than a week ago).  Last week, we made the trip over to Orlando to join up with the Arthritis Foundation's Juvenile Arthritis Family Picnic  :)  Unfortunately, Kevin was still radioactive and in isolation so he couldn't go, but I packed up all three kids.  Gir thought that she would be bored.  I knew better  :)  I knew that there would be some older siblings there.  It is so awesome to be able to get the kids together with other kids that are suffering in ways similar to them.  The beautiful thing about this is that when they get tired, no one bugs them to keep going.  These kids understand each other in ways that most other kids can't.  If they can't run, no one is going to name call, or harass them to get their way.  The kids had a wonderful time connecting.  It was really cool to look around and see the ways that certain people clicked with others.  My son followed around little Dakota, the older woman for him  :)  Little Carolina & Cole clicked as well.   They are both so little that it was absolutely adorable watching them!  I tried to get pics but totally missed the opportunity.   Emily made a special friend, also.  I had wanted Emily to meet Parker for quite some time.  I just knew that they would click.  They seem to have similar problems at the moment, too.  Em is really shy; she wouldn't just go talk to him.  Somehow, they finally got talking!  They chatted away for quite some time.  They really understood each other- so important right now.     While the kids were busy playing and getting to know each other, the adults had the opportunity to chat and compare notes.  I had met most of our mom's before, but it honestly felt like I knew them all so well.  (Thank you, Facebook!)  It is so important to share your triumphs and frustrations with people that understand!!!  Heidi brought books, including one that she had made based off of her blog!  (Pretty cool, huh?)  She also brought a few classics that got passed around.  Some were for kids and others were for us adults.  When this is what you live and breathe but don't get to talk about much to people in your normal daily life, this is very important.  There is so much sympathy from family to family, children and parents alike.  Those that are going through a LOT still think about other that are going through less.  We have an amazing extended family now that I am so blessed to have met.  Some great things really do come out of bad situations! 

Proving how quickly things can happen for these immune suppressed children, Heidi's daughter got sick on the way home.  She ended up going to the ER the next day and staying at the hospital for four days.  You would never have had any idea that she was ill watching her play.  We all know that often you can't tell with our kids.  These little people are so used to feeling badly that until it gets very, very bad they can't often tell that they are sick.  Of course, I think we all panicked over this.  Worrying for her, hoping she would be all right sooner rather than later, but also hoping that our own children wouldn't get sick.  For some it would be just plain disasterous.  

I had such a wonderful time on Saturday that I actually felt relaxed for the whole week.  Maybe having a three day weekend helped, too.  I have been in a fantastic mood all week.  By Wednesday night I was feeling a little edgy, waiting for the Make A Wish volunteers to come.  On the one hand, I am so thrilled for Emily because just by telling her about, her attitude is better.  Not that she's been unpleasant.  Not by any means!  It's just that she seemed to have no will to do anything before.  It was so sad to always see her sitting at scouts alone while everyone was playing.  They weren't excluding her; she was just too unhappy to want to play.  Just thinking about her wishes has made her happier.  Having them come over just made it real to her; she knew that I was truly following through with what I said.

When our Make A Wish volunteers came, they came bearing gifts for all of our kids.  That is so important.  I'm so happy that they try to make the siblings feel special, too.  I try so hard to love them all equally, but of course there are more demands from Emily.  I have to spend more time with her.  No, we can't just go places like other families can.  It depends on how well she feels for the day, if we need the wheelchair, how easy it will be to use the chair, etc.  Most of the time we are home.  It takes a toll on the other kids.  I can't tell you how many times we've had to cancel plans or change them at the last moment because of health concerns.  Anyway, one volunteer sat with me and we filled out paperwork and talked about the future.  The other one sat with Emily and together they decided on her wishes.  (They do it this way so that they make sure that the child understands that it's almost anything they want, and not what other people want them to do.)  For her wishes Emily did ask for her Disney trip, or a hot tub, or to be a princess.  They have them pick 3 in case they can't do one or two, or if the doctor vetoes the plan.  It really didn't take long, and I think that Emily feels really good about this.  It is so exciting to think about!  Our rheumy said that they almost never turn down a Disney request.

I truly hope that the Disney one gets granted.  That is what she wants most of all, and of course that is what all 3 kids will enjoy most.  I had thought that it would be only Disney, but apparently it's a week in Orlando with tickets to any parks that you'd like to go to.  I have heard that they make it absolute magic.  No waiting in lines for most things, a MAW volunteer guides you through the parks, and often everyone goes out of their way for the MAW families.  There's also a Cinderella meet in the castle.  She would love that!

I am also using this as incentive to get her moving.  I told her that while I don't mind taking her chair, I don't want her to have to use it every second we're there.  I am hoping to use this to build her endurance back up a bit, and her muscle tissue, too.  It's amazing what we'll do when there's something to look forward to!  I'm hoping that this will also help her to burn off some of the steroid weight.  This week we decrease her dosage to 9MGs daily!  I can't wait until we're on 6MGs- that's where they say the weight will really start to drop off.  One wonderful thing about the steroids is that she finally eats!!!  This is the kid that wouldn't eat much of anything, who wouldn't try new things, who ate like a bird.  Now this is the girl that carries one lunch menu around in her backpack, has one next to her bed, frequently reads them in an anticipatory fashion, and talks non-stop about food!  Before we tried everything to get her to gain weight, but now we may have to worry about her gaining too much!  It's better than being 42lbs at age 9, right?  She's earned a new nickname:  Sharky!  :)  She's so funny!  We are soooo blessed!  She's had a few joint issues, but nothing major.  Her Remicade is increasing at her next appointment.  Hopefully that will do the trick.  My only worry is that she should be seen the first Tuesday of April but it will now be the 2nd Tuesday because all of the docs will be out of the office that whole week.  She usually starts to hurt the day before, so I hope this doesn't result in a flare.

I have got to get to bed!  Have a wonderful Monday!  :)

Our latest crazy update

Where does the time go?   I feel as though I haven’t had an extra second for days now.  Holy frustrating week!!!   I thank God that I have a 3 day weekend coming up.  I really need some down time, & some fun thrown in! 

Monday started the week with Kevin going in early for his one big radiation pill.  We knew that he would need his own bathroom, and that he was supposed to eat using disposable stuff.  No contact.  Yeah, that was the start of all of the other things that they should have told us but didn’t.  He got home from the hospital as I was trying to get the kids off to school, telling me that everything we were told was just the tip of the iceberg.  He couldn’t be within 6 feet of anyone.  Like, they asked him if there was another bed within six feet, even with a wall separating.  If so, that person in that other bed could be in danger.  Doesn’t that give ya’ the warm fuzzies???  Better yet, anything that he wears or sleeps on has to be stored away after his seven days of confinement  for a full week before it can even be washed.  Wow.  His plates, forks & cups have to be thrown away in their own bag and stored away for a week before we can put it out for the garbage truck.  And he has to carry a card with him (once he’s allowed near people again) saying that he’ll be radioactive until May 21, 2011.  He will set off Geiger counters.  (He has a half life!)  Yay, huh?  Yeah, we had no idea what we were getting into.  This gave us both this grim, scary feeling about it.  It’s been very surreal as he put it.  It’s freaky.  I know it’s necessary.  I know that this is a precaution; I’m trying not to get too absorbed or freaked out by it, but it’s scary.  One funny that came out of it... one of our wonderful, beautiful children expressed their disappointment last night that Daddy wasn't actually literally glowing.  The kids had expected him to glow like a Christmas tree.  LOL!!!  He slept through the first 3 days for the most part, but I think he's recovering now. 

That Monday night, Make-A-Wish was supposed to be here.  Our volunteer has Lupus.  She’s on Methotrexate & steroids, just like Emily is.  She panicked when I called her to ask her if they’d like to reschedule.  We rescheduled for this upcoming Wednesday.  She didn’t think she could be around the radiation.  That made me worry, so I called our rheumy to make sure that I didn’t have to move Emily into a hotel for the week.  I also realized that Tuesday was our Gainesville day, & I had been expecting Kevin to be able to take Zach to school.  I realized that I would have to leave before I could even drop him at school, and there’s no way that I would be back in time to pick him up.  I asked my parents to get him, but dropping him off here wouldn’t be a good option with no one to take care of him, so I kept Zach with us when we went to Shands.  It was a longer drive than usual.  Construction and the endless “are we almost there, Mom?”’s kept me busy.  That boy had me so busy while we were at the hospital that I didn’t have a spare minute.  Usually the time drags by. I totally expected to catch up on Facebook, but I didn't have any time at all to.

Her appointment was AWESOME!!!  They seemed amazed by how well she's doing.  For the first time her muscle enzymes are down!  When she was admitted in October, her ALD was a 15.1.  The normal range is 3.3 to 9.7.    This week Em’s was a 9 -- within the normal range!    I was supposed to get a copy of her labs, but we all forgot.  We have more of a decrease plan for her steroids!  I am so thrilled that by the end of the month she will only be on 9mgs daily, and after her next appointment it should be down to 6mgs!  Her attitude has been better with the decreased steroids, as well as the prospect of Make-A-Wish. That has helped her to feel better.  They said that she will be on steroids for a total of 2 years, but from next month out it should be very low, maintenance  doses.  They said that at about 6mgs you see the water weight start to drop off.  That will help a LOT!!!  Her elbow has been hurting her, and she’s had that sternum pain lately so we’re increasing her Remicade next time, but I’m comfortable with that.  We discussed sun rules, since sunburn can actually cause a disease flare (which would NOT be good!), we discussed shampoos.  For whatever reason, the steroids make her scalp dry, which is normal, but her hair is very oily.  They say that’s weird- usually the hair dries out and starts to break off.  I thought that was interesting.  To make things even better, they were able to get her IV with one poke, and get a ton of blood from her on the first try!  I’ve been telling her that it’s the steroids that were making it hard;  I think she finally believes me! 

Last time she went, she felt well enough the next day to go to school & therapy.  This time… no such luck.  I had panicked a little bit, trying to figure out how to make all of these things work again.  Thankfully, my work is very understanding.  I was able to stay home with Em yesterday.  Heck, I won’t lie- I needed it, too.  I wouldn’t have called out for myself, but Emily not feeling well offered me a chance to breathe & vegetate.  Also, Kevin hadn’t eaten all day Tuesday while we were at the hospital because he’s afraid to touch anything.  I can’t take care of him the way I’d like, but I can kind of help him out that way.  Jeez, had we known how complicated this was going to be he’d have just stayed at the hospital.  Or I’d have taken the week off.  We truly had no idea.  So that has been this week’s roller coaster.  I hope you’ve enjoyed the ride.  Now please get off before you start to lose it, too!!!  J   We’re trending up.  I can feel it.  We can laugh about it now  :) 

What a crazy week!!!

Well, probably 2 weeks is more accurate.  Has it been that long?  I guess so!

I shall start with getting Emily's chair.  You know that things are rough when you're excited about getting your child a new wheelchair.  However, this opens us up to be able to do several things that we haven't been able to do.  Things like, go for a long walk in the woods.  The new chair can handle that!  Go to a fair or other place that would have us walking around a lot.  Granted, we had a chair before, but for one it was "an old people's chair".  She never complained, she just didn't feel comfortable.  Also, there was no restraint.  She felt like she was going to fall out.  So this was very exciting!  We are hoping to be able to go to the Renaissance Fair when it comes to town.  We will definitely need a good chair for that.  (If we wait until March 20th we can renew our wedding vows- just in time for our 15th anniversary on April 5th!)

Kevin had the appointment made for him to go in for his radiation, only to be told that the doctor that made it didn't know the whole situation, and his thryoid counts weren't low enough.  Our doc canceled the appointment, telling him to get more labs done on Wednesday.  Of course, being without meds while they wait for levels is making him feel like the human slug- sluggish, swollen, forgetful, cranky and sore.  Not too much fun.  He's holding up well, but only because there isn't really much of a choice.  He forgot to do labs on Wednesday, and by Thursday we had a sick boy.  DangerBoy stayed home from school Thursday & Friday both, so Kevin didn't go to the lab until Friday.  (By that point our boy felt a little better and wouldn't be contagious.)  We're hoping that they will call tomorrow to schedule him.  We shall see!

My father went in for the angioplasty to find that it wasn't a stent that he needed.  I was very concerned because so many other things around this time seemed to be falling apart for other people.  It almost seemed taboo.  It turned out that, in his words, there was a kink in the artery.  ?????  I don't get it, but that's what he said.  I've asked him to find out the medical terminology so that I can research it.  The good news is that he's fine!  My mother had taken the info to give me at first, but she messed it all up out of nerves.  She told me there was a 40% blockage but they weren't going to do anything about it, and that he had to stay overnight because they had given him something and had to watch him.  Yeah, they gave him a hole in his groin and a six inch metal wand to go inside of the hole!  It was a very confusing, stressful day.  By the grace of God, he's home and doing great now!

Next came the letter from Make-A-Wish foundation!  They sent a parent packet so that you know what to expect, what we will need to have, and so on.  We still had some questions, but we figured we would wait until they called to ask.

I believe it was the next day that I watched a pedestrian get hit by a car.  I have been trying to find some news on her condition, but so far nothing.  The day that it happened I held it together really well.  That's the great thing about constant medical chaos and perpetual stress- you handle trauma very well.  The next morning I couldn't get the images out of my head.  Thank God I didn't see the entire thing.  I watched her cross the road most of the way, then I turned my attention to the traffic light.  I heard the noise, looked up and saw her flying.  I know I didn't have to stop- technically I didn't see the whole thing, but I knew enough to be able to tell them that the driver couldn't possibly have seen her.  She didn't seem to realize that the turn lane didn't stop.  She just ran right into the car.  It turned even more nightmarish after her husband came over, obviously distraught, and yelled out to the paramedics that she was one month pregnant.  Yes, I know it could have been worse, but it was horrible.  Like a scene out of "Final Destination".

Friday & Saturday this week were unremarkable!  I love those days...  Sunday after work was wonderful!  We went over to Kevin's aunt's house for his grandmother's 93rd birthday.  Poor Grandma now has poor memory added to the poor hearing & vision, but she's so sweet, so full of stories.  It was a very pleasant evening spent with family that we really don't see often enough.  We always have such chaos.  It's work, or medical or kids.  We're just so busy!  It's hard to find the right balance, but at least we make some time. 

Lastly, tonight a Make-A-Wish volunteer called to make our appointment!  I went into my room to talk to her, knowing that I would break down a little talking to her.  I asked her- just to clarify- if our doctor had sent her blessings already.  Just to be clear.  I had assumed so, but this is so, so good that I didn't want to get Em's hopes up only to have them crushed.  She assured me that yes, we are cleared.  I cried.  I know that this will give her something to look forward to, and then later it will give her lifelong memories.  And they will take good care of her, and our other children!  Emily has her heart set on going to Disney World here.  She's always wanted to fly so I've been trying to convince her to fly to Disney Land if she wants to do Disney, but I also told her that it's her choice & I don't care what she wants to do.  If she is dead set on Disney here, there is another fantastic non-profit that I discovered on my Juvenile Myositis Facebook group.  Give Kids the World focuses on completely spoiling the family during their stay.  I've been trying to help her to understand that she can pick ANY wish that she desires.  Some kids have gone to Puerto Rico, some to swim with the dolphins.  Others have met their favorite star, gone to an event, traveled to Oregon in an RV, had a bedroom make-over.  As long as it's something that makes her happy we're good.

I'm not sure where we stand on her health right now.  She said the other night that her arm hurt, but she couldn't tell if it was her elbow or her upper arm.  Today it was definitely the upper arm, in the muscles.  Her legs are good though, with the exception of the rash flaring up again on her knees.  Today it looked almost purple.  Most days it's puffy pink.  I'm taking my notes and debating on what to do.  Tonight was her Methotrexate injection.  I'm hoping that will help and she'll be fine.  Otherwise, I think we'll have to go back up to 6MLs (18MGs) of Prednisone.  I really don't want to do that.  I know that she doesn't either.  I'm hoping to prevent it.  We shall see.

Tomorrow I also meet up with fellow blogger & JA mom!  We've been talking on Facebook and occasionally on the phone for quite some time now.  It will be so good to meet!  Can't wait!

Addressing the inaccuracies

I had the misfortune of reading an "education article on juvenile arthritis".  Unfortunately, reading this was akin to how I would imagine reading a JA article in the National Enquirer would be.  The educational content was significantly lacking at best, downright ignorant & hurtful to the cause at worst.  As a parent of a child that has had arthritis for several years now, I have seen, read, and had conversations that absolutely floored me, but this one still has me angry a week later.  The link to this misinforming JA article is here.  If not for copywrite laws I would copy & paste it.  Apparently, the "doctor" that wrote the article writes these and leaves them on his blog.  The majority of his writing is riddled with errors; some advice is dangerous in other articles.

What makes me angry is that this man has no medical training as a pediatric rheumatologist, or in rheumatology at all.  He is writing about the same preconceived notions without doing the research that anyone with an opinion could write, but because he has doctor in his title, people are more likely to believe him.  This can be very detrimental when the subject is something like JA.  We fight so hard to raise awareness, trying to let people know that AutoImmune Arthritis is not because the joints are wearing out from use or old age.  AA is an AutoImmune disease; the body is attacking itself!  No one knows why this happens.

The first (intro) paragraph is innocent enough, though they don't call Juvenile Arthritis "Juvenile Rheumatoid Arthritis" anymore.  Studies show that most children do not have a positive Rheumatoid Factor; children that do generally have other issues, such as Mixed Connective Tissue Disease.  I'll let that slide because some old school docs still refer to it as JRA.  (I prefer Juvenile AutoImmune Arthritis, though that is not what the experts call it.  It's easier to say that and have people actually understand as opposed to making comments based on ignorance because they think they understand.)  Perhaps it's because he doesn't know that the Arthritis Foundation has 100+ different disease that fall under the umbrella of arthritis, including Raynaud's Phenomenon, Mixed Connective Tissue Disease, Lupus, Dermatomyositis, Polymyositis, Behçet’s disease, Lyme's Disease, Tendonitis, Wegener's granulomatosis, Scleroderma, etcetera.  These diseases are all different, yet they are all forms of arthritis.  Yes, children can get them all.

From paragraph number two, the first thing that struck me is that every article in the past that I've read said that most children are generally diagnosed around 18 months because that is when the child is walking, and often seems to be struggling to walk.  Symptoms can appear at any time.  I've never read that boys symptoms show after girls.  That could be correct, but I could neither prove nor disprove that one.   I personally don't believe that is true.
"JRA is usually temporary, and only in rare cases does it last a lifetime. Most commonly, it disappears as the child matures. This is due to the strengthening of the child’s immune system and energy over time."  The first thing that I have to laugh about here is this:  AutoImmune disorders are a result of an over-active immune system.    This would be why these children are put on drugs like Methotrexate, Enbrel, Remicade & Humira, which are all immune suppressors.  Some children are lucky enough to have it "disappear", otherwise known as remission.  They are not "cured".  Many of the children that had JA when I was growing up are the same people that now suffer in silence, told that they can't be sick because we can't see it.  How many people do you know of that had Lupus just go away?

This doctor admits that we don't know what causes JA, but he believes it's due to an energy imbalance caused by the spleen & liver.  Hmmm, some systemic cases may have those organs involved, but most people that I know do not have any organ involvement.  He goes on to say that the weather on the day of conception plays a part, as does the energy of the parents on that day.  So, if you're having a bad day and it's raining out when you're child is conceived you are much more likely to have a child with arthritis?  Somehow, I think not.   He seems to place a lot of blame on the parents.  I can honestly say that I did everything right during my pregnancy with my JA child.  I didn't drink or do drugs (and still don't, thank you!).  I quit smoking, I ate right, got enough sleep, babied myself to a degree, tried to stay away from any stressful situations.  I did everything right.  So, this is my fault?  If any of my children should have gotten JA then, it would have been my oldest.  My doctors advised me to keep smoking since I had a lot of stress, I didn't do any drugs or drink with her either, but I was pretty stupid about nutrition.  I certainly could have done better.  And she's perfect.  Go figure. 

He believes that better nutrition would benefit.  Though that makes a lot of sense, there are no studies that prove that diet has a hand in any of this.  There are specific foods that help reduce inflammation, and others that can cause it (like the nightshade plants- no peppers or potatoes, if I remember correctly).  In the beginning I did a ton of research on this, hoping that I could maybe make it disappear through better diet.  Aside from that info, the best that I could come up with is that many people with AutoImmune Arthritis also have other AI diseases that affect their digestive system.  Many are gluten sensitive and feel much better with a gluten-free diet.  Some can't digest sugars properly either, and they feel better cutting sweets out entirely. 

The last thing that I will pick apart for now is that this man claims that positive thinking "also plays a big role in the speedy outgrowing of JRA".  Ok, I do believe that positive thinking does a LOT of good, but I do not believe that you can cure yourself that way.  I also believe in the power of prayer, but that doesn't mean that Jesus Christ is going to come and cure my child just because I ask Him to.  He has a plan, it is perfect, I have no idea what it entails, & so I will not always get my way.  I realize that Oriental medicine is much different than traditional US medicine.  I know nothing about Oriental medicine partially because I have not trained in it and I do not just decide without fact-finding that something should or should not be true.  However,  I believe that if you're going to write an article on a condition that affects any group in the USA, you should do some research on some material written & proven true in the USA.

On a side note, Emily's new wheelchair came in!  We are very happy about this.  I am thrilled that it came in before a myositis flare left her incapable of walking, for one.  Obviously, we are hoping that will never happen, but since the odds are not in our favor we felt like getting a chair in quickly would be for the best.  Currently her endurance and stamina are not good.  She tries very hard, but if we have a lot of walking to do she simply can't do it.  Walking from the car to her doctor's office at the hospital wears her out.  We use the chair to get the the parking garage on one side to her doctor upstairs and at the opposite end.  If we happen to go to the mall (which is very rare, thankfully) she can't handle that.  Partially it's because her legs can't do it, but also because the steroids have puffed her out so badly that she can't get comfortable.  Of course, she went from 42 lbs to 62 lbs in a month.  I think 30% went to her face, 50% went to her belly, and the rest got spread out.  Her belly went from not having an extra ounce to looking like she was due with twins any day.  That does not make it easy to move.  Her feet are having a rough time adjusting, too.  It's a lot of extra weight added very quickly.  Still, she's very blessed.  Many JM kids are still bedridden for months and months.  She was only mostly down for about 2 months;  at her worst she could still drag herself across the house to the bathroom.  Many kids can't.  I shall leave with a new pic of Em in her chair  :)  We had just gotten her out of her bath;  I hadn't had a chance to comb her hair or anything yet.  We were rushing to get her into bed, but I really wanted to get it set up in case we're in a hurry the next time we need it.  The pictures were an afterthought.

Infusion, Dr. visit & first Myositis flare

As it nears Remicade infusion day, the tension tends to build.  By the day before, Em & I are both a little crazy.  Monday night I was laying down watching TV when I heard crying.  I went to go investigate, & found Em sitting on her floor sobbing hard.  I sat & held her, talking to her, getting her tissues, cuddling.  Why so sad?  She was terrified to go.  It is absolutely heartbreaking to watch her get so upset about something that she needs- especially when it's something that kids shouldn't have to go through.

The drive up is always kind of somber.  She looks like she's going for her execution or something.  On our way up, I heard Mandisa's latest release, "Stronger".  I cannot explain to you on how many levels this touched me.  For me, for her.  It seemed to hit on exactly what we were going through.  It's amazing how God can work in our lives, putting in front of us just what we need, when we need it.  That is how this song felt.    

After we parked, I asked her if she thought she could walk across the street and hospital or if she'd need her chair.  She said that her legs felt tired.  Um-hmm.  Putting the puzzle pieces together, thinking about how her knees looked bright red but didn't hurt.  I thought it was my imagination that her elbows were looking more red.  Once we got into the check-in area, she was called back quickly.  I asked right away if Jason, the one guy that can get her on the first stick, was available.  Our lucky day- he had just come off of lunch!  I was a little worried at first.  He couldn't find a good vein.  The one that he could feel was deep and they didn't think they could reach it.  Somehow, he managed to get it on the first try, plus they were able to draw blood from it without it collapsing!  What a relief when that was over!  Of course, her blood pressure ran high the whole time.  I was a little worried about that since she's on medicine for it.  (And by the way, her Raynaud's has been flare free!!!!!  Wahoo!)

Here's where she got mad at me:  I pointed out to the nurse practitioner that her knees were bright pink and puffy, but she claimed they didn't hurt.  Her face rash looked ok, but that isn't the only marker.  Sure enough, the nurse practitioner said that it looked like a flare, probably brought about because Emily had bronchitis & a cold.  I guess she was afraid to see the doctor, knowing that she was flaring.  When she came in and tried to look at her knees, Emily screamed at her in a way that I've never seen her do before.  She claimed it was because her hands were cold.  I was embarrassed!  It was vicious sounding!  I found out the real why later.  I took Emily to the bathroom a little later & she asked me if she was staying over.  She seemed unconvinced when I told her no.  So I asked her, "you knew that your JM was flaring, didn't you?  Is that why you didn't want to come today?"  Yup, that was it.  She was afraid that she would be kept as inpatient because she was flaring.  Poor little kid!  I think that subconsciously I knew that she was flaring.  I have tried hard to prepare myself for the fact that this will most likely be something to come & go for many, many years to come, but I think a part of me has still been in complete denial that she's flaring.

In the end it turned out to be a good appointment.  We are still able to decrease her Prednisone to 15mgs daily, while increasing her Methotrexate to .6 on the needle.  I was very surprised about that!  I was completely expecting to have to increase Prednisone, so that was a pleasant surprise.  We even got out a little early!  We were back home by 6:40 PM.  Usually it's after 8 PM when we get back.  At least the drive is scenic.  I have wondered what it will look like through the spring and summer  :)  I don't look forward to the long drive, but I do enjoy the views!

Last thing- She was talking to her Daddy this morning in the kitchen, telling him what her legs felt like.  She says they feel like there's metal in them, they're heavy.  Right now it's just in her legs.  We had another nice chat about being honest with us about how she feels.  I tried to explain to her that I read so much in books, on the internet, and in my Facebook support groups that I pretty much know what's going on.  Yes, I will have questions that I cannot answer myself or via FB, but I have a pretty good idea of what's going to happen.  If she had been honest with me, I could have told her what I thought the doctor would do.  I could have helped with a lot of the fear... if she had let me.  We all have a cold right now, except for Gir.  I'm barely functional right now, but we keep it together.

Since I get asked a lot about Raynaud's

One problem that can go hand in hand with several different diseases that are covered under the spectrum of arthritis is Raynaud's Phenomenon. Raynaud's is an over-reaction to the cold. The blood vessels constrict from simple things like being in air conditioning or holding a cold glass of water. The classic signs are the color draining out of the affected hand (or foot, nose, or ear) which turns the area bright white, then turning purple or blue as blood starts to fill in, then red as the blood comes rushing back in. It is painful, prickly, tingly, and causes numbness.  There is primary Raynaud’s, in which case there are no other conditions, and there is secondary Raynaud’s- caused by some other disease such as Scleroderma, Mixed Connective Tissue Disease, and also found to be related somehow to Dermatomyositis.  Secondary is generally considered to be more severe than primary.   The best link that I have found to explain it is The National Heart, Lung, & Blood Institute.    Also, The Raynaud's Association  is a great place to find support and info.

 It was only one year ago this month that my daughter was suffering a great deal from her Raynaud's Phenomenon. Her doctor at the time decided that she was too young for medicine, and that we could control it by keeping her core warm. We would pack her off daily in the winter with two T-shirts, a warm long sleeved shirt, jeans, mittens, and a very heavy winter coat. One would assume that would be enough for a sunny Florida winter, but not the case for my child. It was when she developed frostbite at school that I truly began to panic. This was a life changing disease for her. No longer could my sweet little princess wear her cute little dresses and skirts that she loved so much. Instead, we were piling as much extra clothing on her as possible, but it was never enough. Her school actually made a drill based off of an idea that my hubby had. He would take a sock, fill it with rice, and microwave it for a few seconds to a minute, depending on the size of the sock. The school had several of these socks, and they placed them strategically around the school. Whenever she had a particularly bad episode, they would run for the socks. I worried daily about frostbite, and the possibility of her losing her fingers because she tried to ignore it. The springtime wasn't as severe, but still she continued to have many episodes even when it was 85F outside. And still her doctor didn't think that she needed medication. Our new doctors gave her a prescription for a Calcium Channel Blocker just before the end of December. Even as a child that doesn't like to take medicines, she was afraid of what a cold winter would bring, and she requested it. I can't say that she hasn't had an episode since, but she has certainly had far less. In fact, I have only seen one. Today she can walk around the house in a nightgown or skirt without fear. We can go outside on a cold day without fearing the worst. Yes, she still gets much colder than other people, and she can’t warm back up that well, but it isn’t like it was.  For that, I am very grateful. Her current doctors call her case of Raynaud's "significant". They could tell from a mile away that she had problems with it. Medication was the best decision that we could have made for her. Perhaps it wouldn't be the best course for everyone, but for us it has made a huge mountain look like a small hill.

With this time of year also comes bronchitis.  I thought that we had her on enough preventatives to keep her under control, but I suppose that wasn’t a very realistic thought.  She went to the doctor on Wednesday, but we plan on taking her back tomorrow.  To complicate matters even more, she is due for her Remicade infusion on Tuesday!  Remicade is an immune suppressor, so if she still has an infection it would be very detrimental.  Since we have to drive 2 hours away for it… I’d like her pedi to clear her.  This is her current medication list, with the bronchitis meds being the first 6.

Emily’s current meds as of January 30, 2011

Zithromyacin-  200MGs once daily

Singulair- 5MGs daily

Flovent-  44mcgs twice daily

Ventolin- Every 4-6 hours

Veramyst-  One squirt each nostril nightly

Benadryl- 1.5 tsps (On request for congestion & cough at night)

Prednisolone- Take 18MG in the morning

Prilosec (Omeprazole) ONE capsule once daily

Meloxicam-  5 MLS  (1 tsp) nightly

Nifedipine ER 30MG- One pill once daily

Xyzal- 5MG once nightly

Methotrexate- .5 Sub-Q once weekly

Leucovorin- 1 pill weekly 24 hours after MTX

Miralax- ½ Cap nightly

Multi-Vitamin
IV Infusions:
Remicade- Once monthly
Solu-Medrol- Once Monthly

17 meds.  Now doesn’t that look like a good time?  Poor kid takes more medicine in than food or drink, I think.  This is what having an autoimmune disease does.  And remember folks- she’s only 9.  I'll post tomorrow after work about what her pedi says, or Tuesday after her appointment if she is cleared.  Keep us in your prayers!