November appointments

Well, I'm not really sure where to start tonight.

We had already pretty much decided that Orencia wasn't really working for Emily, however I wasn't expecting our doctor to suggest just dropping it and hoping for the best.  Granted, we would be keeping the Rituxan, which she feels is actually helping a lot, but still...  I mulled that over for a little while, and decided that with her recent daily thumb and toe pain, that is probably not a good idea. She has told me that they sometimes hurt so badly that she wants to rip them off.  I totally love our rheumy's- ALL of them- and I think this was the first time the question seemed completely not aggressive.

The night went by uneventfully, with no visit from the doctors until just as I was about to go down the hall to take Zach to his appointment.  Just as we were starting off, one of the other rheumies came over to see us.  She asked me how I felt about dropping the Orencia, and I told her my fears about the thumbs and toes.  She told me that she was not fond of the idea, enough to have mentioned it to the head of the department.  This is part of the reason that I love our team- they actually communicate.  I like our other option much better- instead of dropping Orencia, we will spread it out to every six weeks.  She also asked when our last Prednisone decrease was.  Ummm... long enough ago that I can't remember when.  Well, permission to drop 1/2 of a milligram... granted!  :)  That had me over the moon!  I was so excited!  No, it isn't a huge drop, but it is huge to us!

So, I left our room extremely happy, expecting an easy appointment for Zach and then on to home.  Not so much.  While he looks great, our doc noticed that his toes were swollen.  And they hurt.  And his back has an arthritis spot.  Which usually means Spondylitis in a person with Psoriatic Arthritis.  So, yeah.  Not thrilled.  I was very glad that his appointment was today and not yesterday.  I like thinking our appointments over on the way home.  It's harder to think straight when they keep talking and giggling.  It just hurts your heart to hear these things.  This is not what you want for your kids.  I had really hoped that Zach's would be easier to deal with because we caught it early.  He responded so well to Enbrel at first.  I really thought that this would easy.  He's HLA-B17 positive- that is a psoriasis marker, and it often means a more mild form of arthritis, if I remember right.  I thought we were clear.  So far, it doesn't bother him too much, so it obviously isn't really bad right now.  He has complained of his back once or twice.  He complains of the feet often, and on Halloween it was the ankles.  No changes in meds yet- we are to just keep an eye out and see what happens.  We will go back in 3 months, but call if anything changes.  

On a sweeter note, we were asked by one of the rheumies if we were going to be at the Jingle Bell Walk.  :)  We don't go to that event, only because it is so cold, but I thought it was cute that they were thinking about it, especially since our walk is so far away from the hospital.  I really do love our doctors.  But I would like to put them all out of business by finding a cure, please.  Then we could all just hang out and talk medicine without actually having any medical crises ourselves.  On the bright side, we don't have to go back for six weeks.  Woot to that!    

Oh, and we got a dog!  We swore that we were NOT getting a puppy, and we were NOT getting a big dog.  You know what they say about the best laid plans, right?  We have a shepherd/ husky/ lab mix.  He is three months old.  We were both thinking that he was six months old, but no, he's three months.  His name is Brody, but I swear I may change it to Bitey.  He is definitely like a baby, and so cute!  Assuming I can get his immunizations tomorrow, we should be good to start him in training classes tomorrow!  I am so hoping.  We need to get him to stop biting, and so far the tips that we have found on YouTube are not working.  He is good with the younger kids; it's just me, Kevin and poor Ash.  He especially loves to bite Ash!  She'll be just sitting on the couch texting, and he comes up and starts biting her.  Poor kid!  PetSmart said that they can get him close to therapy dog in training.  I can't wait to start!  I'll keep ya'll posted!

Family Camp Was Amazing!

This past weekend we went to our local "Hole- In- The- Wall- Camp".  These are the camps that Paul Newman's product lines help to support.  These camps are amazing in so many ways.  To start, they are tailored to sick children.  These people realize that it's not fair or fun to live in pain every day, to have to spend so much time at the hospital or doctor's offices, and have to go through frequent testing.  They also realize that many of these kids are on so many meds that they couldn't go to a "regular" camp.   These types of camps are filled with counselors that volunteer- because they want to.  They are medical students, nurses, doctors.  They also have a disease-specific doctor on hand because you just never know what may happen.  It's a safe haven, filled with love.  To have a family weekend is amazing!  Emily had gone to this camp twice for a week each time.  She was so sad to leave it!  She looked forward to this opportunity to share it with us.

It's also a wonderful experience to get together with other people that are going through similar situations.  You really feel a strong sense of community.  They want the parents to do their own thing to recharge.  Many of us are happiest just watching our kids have fun  :)  I had a lovely time following my kids around, watching them excitedly make cars and animals in wood shop, checking out the boats, doing crafts, participating in the talent show, etc.  It was really cool watching Emily do all of the chants and the little cheers they had.  Like she totally belonged.  That was cool.  Another "Mom Moment" happened during the opening campfire.  One of the coolest ladies EVER, who just happens to be named Dorcas, was talking about how everyone was going to get a set of beads, but she was giving out 3 to special people.  (Mind you, I'm going deaf; I don't hear nearly as much as I want to , and since I couldn't rewind the moment, I totally missed it.)  For whatever reason, Emily was one of those 3 special people.  I didn't hear the why, and I'm not even sure how she knew exactly where Emily was, but she did.  I suppose she could have remembered her from last summer, but Em looks so different.  Any which way, it was truly amazing, and really touching.  Em also really enjoyed being in a bed right next to my bed  :)  Sleeping only 3 feet away from Mom makes her feel safe.  <3  She did have a food meltdown on the first night, but otherwise she had an amazing weekend. 

The family "Pals" are volunteers that follow the kids around.  They specialize in making the kids feel loved and happy.  They bond with the family, but especially the kids.  They have them "serve" the family, hold open doors- totally spoil the family.  We had 3 pals.  Our pal, Brittany, has Lupus.  She told us that she refused to take her Prednisone, which caused kidney failure.  She spent half of her time with us, and half in the arts and crafts area.  She has her IV port in her leg, and it keeps slipping so she has to spend most of her time in her wheelchair.  Our other pals were pushing her around. I think it was a blessing having her.  She could understand better than the other two how Emily felt.  She was a camp kid, volunteering because she loved the camp and the way it made her feel.  Our pal Jake was in school working on dual masters in business & sports.  He & Zach got along very well  :)  Our last pal was Stephanie.  She was my favorite  :)  She was only 21... close to Gir's age.  She's a medical student, working her way through college in a lab that's doing research testing for Lupus.  I was so excited to hear that!!!  She was down to Earth like a good teenager, able to fit in with the kids like she was 16.  Not only did she and Gir get along well, but she & Emily did, too.  Em schooled her in rheumatology.  I think they impressed each other.  It was lovely to meet them all, and a wonderful treat getting to know them.  Many special people make up this camp!

My last bit for the evening...  Well, we're finally on the way to getting my son "figured out".   I had noticed a while ago that his hands look puffy.  While at camp, another mom said the same thing.  (Thank you again for saying it!!!  I never would have thought to jump on it otherwise.)  After talking to Kevin about it, sitting at the dinner table, I look over and see one of our rheumatologists speaking to someone.  So I thought, hmmm, she's here in a professional capacity, volunteering her time.  It couldn't hurt to ask her to look him over, could it?  She was totally cool about it.  She said that he's hypermobile, to start with.  And she said that, judging by his reaction, she believes he has arthritis in his finger.  She didn't check his jaw, but combined with the finger, the severity of the psoriasis, the nail involvement, the heel pain, the clicking of the jaw, etc, she suggested we make a new patient appointment for him.  I had his blood drawn yesterday for labwork.  I had requested the Rheumatoid Factor panel, the inflammatory panel, the HLA-B's, (Human Leukocyte Antigen's are often positive with the spondylarthropy family), and I added an ANA.  (Is that wrong?)  Hopefully those will be back in the next few days.  Those should tell us if there's anything going on, though not necessarily.  I requested the lab send a copy to the rheumy.  That should help to get things started.  I really, really hope we're wrong.  I really want to be.  We shall see.  We're just taking it all one day at a time. 

























 

The JA Conference! (Long)

I know that I touched on this a bit in my last post, but I wasn't able to give it the love that I wanted to.  I'd like to start by thanking the Arthritis Foundation.  I cannot express to you how much they have changed our lives.  We would not have been able to attend this year if it wasn't for them.  They have done so much for us!  We try to give back as much as we can, but I will forever feel in their debt.


The JA Conference this year was near Washington D.C., in a Marriott in Crystal City, VA.  The hotel and its view were both beautiful!  The conference started on Thursday.  We didn't arrive in D.C. until after the first evening's festivities were mostly wrapped up.  We did have the opportunity to attend the first networking sessions.  Those are very important.  They broke the parents into mom & dad groups, and the kids were with their own ages.  It's so cool to get together in a large room filled with other people that are going through exactly the same things as you.  This years added appeal for me?  My Facebook groups!  I am so blessed to have found these wonderful ladies (& a few gentlemen) on Facebook.  Each and every single one of them is amazing in their own way.  Many have raised a staggeringly high amount of money for the AF.  Most are trying to raise awareness, some are trying to start non-profits, some are donating to their hospital's children's rooms.  Some are dealing with extremely sick children; others are just trying to get by as single parents with chronically ill children. Each one is amazing in their own way.  This year as our group is nearing the one year "together" mark, many of us were able to meet in person!  It was truly a huge blessing meeting these people.  (Have I stressed that enough?  You just couldn't know unless you went!)  I truly felt at home, excited, energized, and with my family.  It was a beautiful weekend!  Not nearly long enough.  I soooo wanted more time with the Amy's & children  :)  I need to get out more.  I don't get out enough, so when I do I am completely overwhelmed.  I don't know where the time went!  I don't think there could possibly have been enough time to chat with all of these people the way I wanted to.  Love you all! 

Friday-  The speakers during the opening session talked about some of the CARRA group's research and clinical studies.  One of the speakers was Norman T. Ilowite, MD, the principal investigator of  the RAPPORT study.  This study is extremely important to the parents and children affected by Still's Disease, a systemic form of Juvenile Autoimmune Arthritis, or SJIA. This session also addressed the importance of participating in and supporting clinical trials.  

We had our choice of where to go for the next round.  We chose "Other Pediatric Rheumatic Diseases", hosted by Dr. Natasha Ruth.  This session addressed different forms of vasculitis, Lupus, MCTD, Dermatomyositis, and Kawasaki's Disease.  We learned a lot in this session, including what some of the bumps on Emily's hands may be from, that you can have a +ANA and not have an autoimmune disease; we learned about central nervous system disorders, and we learned the Emily should have an Echocardiogram yearly.    I also asked a question that has been bugging me for a while during this session.  To me, through all of my research I believed that, while many people with Mixed Connective Tissue Disease may have myositis symptoms, from her initial onset I truly believed that Emily had developed the DM as a separate disease.  I also believe that she did at some points have myositis features, before she developed the full-blown disease.  I asked this doctor if that was, indeed, possible.  She agreed that it sounded likely in our case.  This means that, while having no confirmed systemic features right now, Emily has 2 systemic disease.  (I later confirmed with Dr. Rider, also.)


The next class that I went to was "JA Perspectives Panel".  There were several speakers here, all of which either had JA as children or have been parenting children with JA for a significant amount of time.  This is a great time to ask questions about what the future may potentially hold, or how to handle certain situations.


The next class that we went to was "Medications Used Commonly in Children with Rheumatologic Diseases", presented by Dr. Sandra Hong.  OMGosh!!!  If I was ever able to just move to follow a doctor, I would follow her.  I love our rheumy's, I trust them, I know they have our child's best interest at heart.  However, this little lady is a huge ball of energy!  She looks about 25 (gotta love Asians!), and she spoke like a teenager.  This would create obvious appeal to the kids. She was so cool & down to Earth!  Kevin & I totally loved her.  He didn't go to this class with me, but we had a pow-wow in the hallway the next day with her.  She wanted to make sure that we didn't have any questions, that she discussed what we needed to know about, etc.  She gave us some really great advice on meds and tests to keep in mind.  She was seriously awesome. 


Saturday brought an opening session on advocacy, as well as an awards presentation.  We had somewhat of an inside view into the health care plan, how to make friends with your representatives, how to gain approval for your cause, etc.  This was very important information since we really don't have enough people meeting our politicians advocating for our kids.  This was hosted by Kevin Brennan & Calaneet Balas.  


We chose to go to "To Rest is to Rust" next, hosted by Jennifer Horonjeff, MS.  We missed half of this session as we ran into Dr. Lisa Rider, co- author of  "Myositis and You: A Guide to Juvenile Dermatomyositis for Patients, Families, and Healthcare Providers".  I was sooooooo excited to meet her!!!  I discussed another CARRA group research study with her, "Rituximab in Refractory Adult and Juvenile Myositis (RIM) Study".  This was huge to me because our rheumy had asked us Wednesday to consider trying this.  I was able to speak with several people that have tried this, parents of children that are on it, and Dr's Hong & Rider.  This conversation with Dr. Rider helped me to make up my mind for sure to try this approach.  She was so cool, so brilliant and so sweet!  She told me that I could always call her office with questions and she would be more than happy to help.  How many doctors would make an offer like that?  I really appreciated this time with her.

When we finally got into the session we were headed to, it was mostly over.  However, we caught enough to figure out that we don't really fit into a category at the moment.  There are a lot of things that Emily can't do because Prednisone can cause ostopenia (brittle bones).   The speaker was sooooo cool!  She was another twenty-something that I really hope also spoke to the teens.  She was pretty awesome.  She was very funny & animated and used visual aids to help make her audience understand.  

After lunch we chose to head to "JIA & Jaw Issues" with Dr. Randy Cron.This brought up some scary points, like most children have jaw involvement and don't even know it!  Up to 81% of JA kids have jaw issues.  This can cause the jaw to not grow properly, causing deformity with a "short" jaw.  Most docs don't think to order an MRI, and if they do, most radiologists don't know how to read them for children.  How astonishing is that???  We missed a good chunk of this class speaking to Dr. Hong, but what we caught was rather unsettling in content but very informative!  Excellent speaker and session.


Our last session of that day was on "Community & Financial Resources from A-Z".  Honestly, I knew a lot of this already.  There were a few good links that I wrote down, but I had already researched this area a lot.  I thought maybe I had overlooked something, but I guess not.  For a parent new to having a sick child, this would have been a huge help.


Overall, we learned so much!  It was so good to be able to keep Emily & her brother together.  They were in the same room as some other Florida children so Emily felt a bit more comfortable than last year.  (It was a mistake bringing her to Philly without her brother.)  Also, we didn't know that she was more sick at the time.  It was a few months later that the puzzle pieces came together.  It was good for my son to be with other JA kids.  They had a session with Mr. Byron Janis, pianist, songwriter & Psoriatic Arthritis patient.  I was really excited about this since my son has psoriasis with no arthritis.  We don't know anyone else with psoriasis that is his age, or even with psoriasis as visible as his.  


This was also a fantastic time for my oldest.  At 16, I thought that she may be bored.  Apparently, she did, too.  Not so much  :)  She asked if she can come back next year.  I don't think that she has really understood all that her sister goes through, either.  I believe this experience helped her to "get it" more.  I'm so glad that we were able to go as a family.  Everyone really needed this.


One more note on the AF- recently a good friend was laid off.  We all know the economy is horrid.  Arthritis is so misunderstood and under-appreciated, & while the AF has very few paid employees, it's hard to keep all of them right now.  While we are sure that he will do very well in future endeavors, we know how much this person did for our children.  It was his heart that helped many of us in Florida come together.  Between Facebook and planning days for us to meet, he got us together.  He started the "Mom Squad".  This was hugely important for me.  This made me feel I could be more proactive than reactive, & I was making a difference.  I'm hopeful that this program will continue to grow, but I'm sure it won't be with as much love and nourishment as he provided.  And he waited until after the conference to tell us all so we wouldn't be sad there!  How sweet is that???  We are very grateful to have had such a kind, loving heart working so diligently for our children.  I won't name names, but he knows who he is ;)  I know he will remain a friend on FB and we'll probably meet up again, but I will continue to mourn the loss of his presence with the AF.  I will continue to do all I can, maybe even more now.  Thank you for all of your hard work for us.  Luv ya! 













 

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."

The elbows, labs & PFT

I've had some concerns.  I had a list of things to bring up at our last infusion, but since the doctors weren't in, I thought I'd wait until our next appointment.  Also, her labs were only 2 points out of the high range, so I was concerned that it could be a flare starting or it could be that her dose of Methotrexate was too high.  She was hoping that would be it.  Emily has always been the child that actually liked her Methotrexate shots, but she says that she isn't as fond of it at her current dose.  Well, I guess I worried for no reason on that note.  When I called to discuss a few things today, the nurse practitioner said that her labs look great!  I had thought her liver enzymes looked high, but she said that everything is right where it should be.  We still had other things to discuss, though.

While we were at Occupational Therapy yesterday, her therapist looked at her elbows again.  She determined that she has tendonitis in both elbows, her left being worse than her right.  She and the nurse practitioner both agree that it could be regular tendonitis or it could be from the Dermatomyositis.  The current plan is to increase her NSAID (Mobic) to the correct dosage for her weight.  Until that kicks in, we should double her Prednisone for 3-5 days.  We can use ice or heat, and rub in BioFreeze as needed.  We will also pay attention to what her appetite does during this time.  She said that her poor appetite may be direct result of the Prednisone taper; it may be a sign that she isn't ready to taper down any more.  We should monitor her appetite on the increased dose, then monitor it again on her current dose when we go back down.  

My last concern was how often she's been getting sick.  It seems like she's been sick constantly.  Every month she's been on at least one, sometimes two, antibiotics.  Granted, she's on 3 immune suppressors, but she was on 2 for years and didn't get sick as often.   I have been concerned about the Pulminary Hypertension risk (23%)  that she faces from the Mixed Connective Tissue Disease.   She has asthma.  I worry about this more, especially considering that every illness that she has had in the past 6 months is from an upper respiratory, or a direct result of asthma.  The ARNP said that it could be that her immune system needs a boost from all of the suppressors.  That could be determined through labwork, so they will add that immuno- panel to her list for next time.  I requested repeating her Pulminary Function Test.  Her last PFT was on her last day in the hospital.  She just wanted to go home, she didn't want to be there, she was scared, and she was simply not having this.  Needless to say, her test results came back "inconclusive".  Since pulminary hypertension may not be picked up on during regular exams, I think this is a great idea, and should give us peace of mind.


All of this together *could* mean she may be starting to flare.  I have no idea what to think at this point.  I had thought that her arthritis was flaring, until I saw her labs, which made me believe that it was the JM flaring.  Since I read the enzyme labs wrong, and the ARNP says even the inflammatory markers (that I didn't see before) came back great, it no longer looks like the labs point to it.  But I'm still confused on the elbows.  And the tummy.  <*Sigh*>  We'll get it figured out.


So, we have a full boat next appointment.  What will we do to top that?  Drive straight to DC for the Juvenile Arthritis Conference!  This works out better, actually.  Our appointment is on the 6th and the conference is the 7th.  We'll be 2 hours closer from the hospital, this will save us a trip in a way.  And we can stop somewhere overnight, taking our time.  I think it's perfect.  This way we won't be in a hurry, we have some down time, stopping time, and we should get there in decent time.  All the way around I can't wait!   So many people that I can't wait to meet "in person", so many questions that I have, and so many historical sights that I can't wait to show my children!!!  This is going to be so wonderful!  :)  Thank you, Arthritis Foundation!!! 

JA Conference 2011!

Well, I found out from our Arthritis Foundation branch that we have been given another opportunity to go to the Juvenile Arthritis Conference this year!!!  I am so excited!

Emily was first officially diagnosed with arthritis on January 10, 2008.  We pretty much had to go it alone for the first two years.  I had done tons of research, but I never found any blogs or anything for the first couple of years.  I found a group, the "JA List", but I had a hard time keeping up because I work full-time and I'm crazy busy.  I could read and keep up a bit, but I didn't feel a "connection".  Honestly, I ended up spending more time reading the Caring Bridge entries of a woman on this list.  She wrote about the horrible battles she and her little girl were fighting, trying to beat her arthritis.   For whatever reason, I felt a strange connection to her, to her daughter, and felt somehow that her daughter was similar to mine.  Granted, our battle wasn't nearly as tough back then, and it still isn't anywhere near the level that this little one had to deal with, but I really felt they had some crazy bond.  Well, anyway, I read those blogs quite often, but still never really felt the full effects of the list.

In March of 2010 I ended up receiving an invitation for lunch with some other parent's of JA kids and a member of our (somewhat local) AF branch.  (Luv ya, Tony!)  This proved to be a life-changing lunch.  This was the gateway that connected me to several of our area families, and a webpage that one had started just for JA families.  Facebook started to become a tool for me to connect with these people.

After I met these people, I started to utilize my blog more.  I had originally started it anonymously to gripe and complain, but I soon discovered that I didn't really do that.  I later found Blogger and realized how easy it was to network.  Suddenly I had a small (but growing) collection of blogs to follow, mostly written by families with children suffering from JA.  A few of them found me on Facebook.  I found a few people from the 2010 JA Conference on FB, wishing that I could have met them in Philly.  The week that Emily was hospitalized, one of these FB mom's started a group called "Arthritis Friends".  This family has completely changed my life.  We now have 204 members, all of whom are amazingly encouraging, helpful, kind, and supportive.  Several of us are going to the conference!  We're trying to figure out the best ways to meet up :)

At last year's conference, I learned a LOT.  Even having already done a ton of research on my own, I still learned a lot.  There is truly something for everyone, from newly diagnosed to the fairly well self-taught.  Just to be able to go and socialize with other people that understand is amazing.  It's a wonderful way to make new friendships!  What does it bring for the children?

The children have the opportunity to be with other children just like them.  These kids are given the chance to be "normal".  They can share and talk about their disease(s), or not.  They play, make arts and crafts, have special events, and they have speakers that come to speak to them.  They learn a bit about how important advocacy is, which I thought was really cool.  Most importantly, they have other people that suffered from JA that offer up hope for their futures, and help them with coping mechanisms.

Who watches these kids?  Well, the PALS in Emily's room last year worked for the Arthritis Foundation.  Why are they there?  To see who they are helping, to see the quiet strength and courage that our children have.  To know that they working for a good cause, and to help them recharge and work harder through the year for our children.  I am so grateful that this life- changing tool is available to us.  I can't wait to go and meet my family that I haven't met yet, and see those that I have!  I love you ladies!  <3

*** I've met my best friends on FaceBook***  <3