I should add...

Today has been a hard day for Em. Her Raynaud's has been acting up a LOT today. It's controlled her today. She had to take a bath to warm up after lunch & she had several episodes while we were out. She had to take a second bath before bed to warm up. Also, her legs are "tired" as she says. She says she doesn't hurt but walking has been hard on her. She has pretty much kept to her wheelchair with me. It may just be that she didn't get enough good sleep with all of the excitement, or because her brother is like her other half and he's at home. I'm not sure.  I asked a doctor what he would do with her Raynaud's, showing pics. He said he would use calcium channel blockers. I'll have to re-address the issue with her rheumy. I asked about those last visit & was told to "wait & see". GRRR!!!  It may be because we need to see a Cardiologist.  I'll have to look into that.

Day 2 of the JA Conference

I knew that this would be an amazing, rewarding experience, but I had no idea how amazing. With still one more full day & a short day left, I've already learned so much. We learned this morning how 80% of meds used for children with Juvenile Arthritis have no long-term data regarding side effects. We learned of the efforts that a group called C.A.R.R.A. has made towards a national registry, & determining which meds work best for different diseases. Despite having researched medications so much I sat in on a medication session. i learned, for one, that Methotrexate does not generally drop one's white cell counts like Em's drop. I learned more of the HOW of these meds, which we also discussed in the Genetics session. That was fascinating! We discussed siblings risk factors & the research regarding which markers exactly cause JA and why. 1 to 4 kids per 1000 are affected by JA, more than are affected by diabetes, or cystic fibrosis. and now I must crash. good night!

what an amazing day!

what a weird yet fantastic day! i had a wasp fly out at me from my gas tank cover, almost got run into poles on the way to the airport. we met a very nice man that helped ua along a bit since i had 2 large carry-on bags & i was pushing the wheelchair. we had mad turbulence (i hate flying) and a crazy car ride to the hotel. i was able to get a mini tour of the city. it's sooo beautiful here! but getting to the conference has already been amazing! we got here, checked- in, registered for the conference, and finally had the chance to look around. i spoke with the orencia reps & found out there are no side effects at all & no warnings. they answered quite a few of my questions. tomorrow i will be taking advantage of the "ask a rheumy" booth. i'd like some other opinions on her raynaud's & how controlled her arthritis is right now. i was able to speak with a teen that's had ja for years, & i finally found another parent that has a child with raynaud's!!! you have no idea how wonderful that was!

Ready to roll

I will officially be on the way to Philly for the JA conference in 11.5 hours!  I don't know why, but I'm nervous!  I have to say that I do dread airport security since I'm always the one that seems to have issues.  With everything.  :p  It's usually silly, stupid stuff, but enough to have me on edge.  Airports aside, I cannot wait to get there!!!  I can't believe that 2.5 years of waiting & this is finally becoming a reality!  Oh, how many nights I have sat up until so late just researching, trying to understand, maybe even trying to cure.  Kevin probably was ready to kill me for a while because it really became all that I could talk about for a while.  But I think I really believed that if I just read enough, maybe I would find the magic answer.  Yeah, I know better now.  I know so much more now.  I also never thought she would have a flare, I thought she was in such good control.  It's easy to "think" when you're not the one that "feels".  
I remember as a kid thinking that I wanted to get married, have 2 kids, have the perfect home, probably stay home but still go to school for something first.  I thought that things would be just so.  I was wrong on almost everything, BUT I'm glad.  I'm not just "going through the motions".   It sucks that Emily has arthritis.  Raynaud's sucks.  It makes me angry that she will have to hurt more days of her little life than anyone should need to.  But it has woken me up.  I'm a better person now.  I have passion for things!  Not so much before.  We opera sing-song to each other some nights instead of speak.  We laugh way more than snap or fight.  
I have learned that -no matter how well you think you know someone- you just don't know what someone else feels.  Strength is quiet.  Just because you can't see it doesn't mean it isn't there.  In the space of a few years I went from treating kids the way that most people do- as little things that should just listen and do as they're told- to treating them as little people.  Why?  They are stronger than you'd think, smarter than you'd think, and sometimes more dependent on you than you'd think.  That girl is my hero.  She feels bad more often than not, but she's always happy, she never complains, and she just carries on.  I am so honored to be able to take her to this conference.  I'm excited to take her in a plane, to meet other RA kids.  I hope that she will learn as much as I hope to.  I plan on blogging from my phone if I can, if I have time.  Sometimes proper punctuation just doesn't work on it, but I shall give it my all!  If you pray, please pray for a safe flight & trip for us both.  Thank you so much!!!  Take care!  Bbs.....



 

Last minute details

I have always been, and most always will be, a procrastinator.  Not something that I'm proud of, but it is a huge part of me.  I'm just now starting to think about things for the trip that I probably should have thought about already. It will be so nice to have some one-on-one time with my little bean-girl, to be able to show her things that I think will amaze her in PA.  I can't wait to see her eyes light up on the plane!  Time to enjoy the heated pool, being away from her siblings, and meeting all of the other kids that are "just like her".  That is so huge.  To know that she's not alone.  Even then, I wonder if she'll be the only one wearing a jacket & mittens?   At least I know that these kids will not make fun of her for it.
I'm a little nervous about having her in her own conference classes.   She still can be a little.... different.  She may insist on staying with me at first.  I hope not.  Not that I don't want her with me, 'cuz I wouldn't mind that at all!  But I really want this to be for HER, and for her to get the maximum benefit out of it.  I hope that she can be comfortable enough with her illness to always tell people about it, educate them and make them aware.  She tells all of the adults that she meets right now, but around other kids she tries to act like it's nothing.  Maybe this experience will help her to be herself more around kids her age, take better care in school.
I really want us both to make some lifetime friends that we can share these crazy ups and downs with.  Up until the "Arthur Itis" Facebook page I felt very alone in this battle.  I didn't really have anyone to turn to outside of the doctor's & nurses.  I was pretty lost trying to figure out how to help, also.  I had no idea where to begin.    Tony from the AF has been an AMAZING force.  He has all of this energy that is just exploding from him, but he's focused enough to channel it and get other people to help.  Seriously, Kevin & I talk about him a lot because he is just awesome.  I am forever grateful to him.  I feel like I've regained something somehow since finding his FB page.  I so wish that he could go to the conference, too.  I know he's content to let the families go, but I will miss him there.  Anyway, I don't think he could ever realize how instrumental he has been in my life.  I hope that I can be that instrumental to someone someday.  Granted, it hasn't been ALL him.  :)  There was God first.  He who brought me to my lowest point only to pick me up, dust me off, strengthen me & then use me for His work.  I feel blessed every day because I know that in some way He is using me.  I know, I'm rambling.  I'm so excited!!!!!  But I'm also very tired from being so excited!  I can't even focus, my mind is a jumble, and yet I attempt to write.  I'm so sorry to anyone that may be reading for the first time.  I'm usually much more put together.  But right now I CAN'T WAIT!!!!!  :)

Finally did it

While knowing on the one hand that my child is, indeed, disabled, it's difficult to admit; sometimes even to myself.  We have forever talked about getting a handicap window tag, and we could have really used it a few times.  Several months ago we started seriously looking into it. It took a good chunk of the day but on Monday I finally got it done.  I don't know about other states but in Florida all that you need is a state ID & a form from your doctor.  (Thanks, Courtney A!  I would not have known that if not for you!)   There have been so many times at school where we had to park far away; by the time we get to the office she's exhausted.  Or a trip to the grocery store on a hard day.  I usually end up carrying her through the parking lot.  There are just some days that is not easy.  Besides, we may need her ID at the airport.
We're back to puffy knees and hands now since stopping the Methotrexate.  She hasn't complained, but that's nothing unusual.  She was really whiny yesterday & I thought that maybe she was feeling badly, but it may have just been that she got up too early.  She's pretty happy today :)  And that is about all there is to note right now.  I'll probably update just before we leave on Thursday, if not sooner.  I'm so excited!

Delightfully quiet

For once I wanted to log in to say that there's nothing going on!  We are really just biding our time until the conference at this point.  The only thing to note as of this second is that I can clearly see the effects of not using the Methotrexate since it's been two doses now since she was pulled off of it.  After the whole three doses of injectable that she had, I had noted that her arms were softening up and it was easier to give her injections.  We are back to the hardening of the skin that makes it more difficult to inject.  Since it's only been two injections, I'm wondering how bad it will be when we go back to Dr. N in September.  I really don't like her being off of the MTX.  I realize that we can't keep her ANC so low all of the time, and since it kept dropping with every shot I know it was for the best.  But still...
Otherwise, her joints seem to be behaving for now, no funky spots appearing.  Her Raynaud's hasn't acted up since she's been home.  At the risk of jinxing us, she hasn't even been sick lately.  It's been pretty quiet!  Day by day we take it, while praying for the best.  And on that note it is bedtime.  I am up wayyyyy too late.  Good night!

Are we there yet?

Time seems to have stopped moving yet the anticipation is getting greater for the JA conference!  It is all that I can think about.   Emily is pretty excited as well.  What a busy time!  We very rarely get the chance to travel.  In her 8 years we've only had two family vacations, and for those we drove.  (Not the best idea but we didn't know what was happening to her at the time.)  I've had so many questions that I've had to figure out answers to!  For instance, bring the wheel chair or the stroller?  How to get from the PA airport to the hotel?  Silly stuff for those that travel often, but of huge concern for someone that has to anticipate potential problems.  I try so hard to keep her comfortable, but every once in a while lack of preparation on my part proves to be difficult for her.  Hopefully I have now thought of everything! 

I'm so excited to meet other Florida Mom Squad families, and some others that I have met now through Facebook.  What an awesome, powerful tool that site has become for us.  Three years ago before her diagnosis, and for a bit after I was so lost.  I had to work on finding the real personality inside of my daughter whom we thought we had known so well, only to find that most aspects of her personality were a result of the great pain that she was in.  I was angry at arthritis, and wanted to do something.  But what?  I threw myself into research.  I contacted the AF a few times, and started doing some of the advocacy, but it didn't feel like enough.  Yes, we had our local walks and fundraising efforts for that, but still there was something missing.

Through the Florida AF's Facebook pages & a few other pages as well, I was able to offer and share all that I had learned.  (I have also met some amazing people because of it.)   I could help to support people- some of whom had children that were newly diagnosed and sort of lost like I had been.  That is exactly what I was looking for in June of 2007 when our pediatrician told us that she suspected JA.  Since then I have lost track of how many hours I have put into JA & other rheumatological mysteries.    At the time, I felt that I could have some sort of control through research, that maybe I could help Emily by learning all that I can.  Learning how & where to find important info, learning that I would need to be an advocate for her in ways that I never expected, & learning how to be that advocate all took a while.  Remembering every time that she went to the pediatrician for an infection that she couldn't have Sulpha antibiotics because of her Methotrexate, remembering that she couldn't have Motrin for her fever when she was already on Naproxen... things like that.  I'm sure I saved her a few really bad times because of little things like that.  I had always been a sheep before, blindly following what the doctor's said unless I read something later when I got home that said otherwise.  I learned that to have a good appointment I needed to be on their level to the best of my ability, and pointing out a potential interaction was not by any means considered "challenging" the doctor.  I learned that even the doctor's that feel that you can't possibly know anything will feel otherwise if you are patient enough to hear them out but prove that you understand exactly why & what they are saying... even if you don't agree.  And so, that said, I am absolutely thrilled to have this opportunity.  The AF was amazing enough to give us a scholarship because- as many parents of a child with medical problems would agree- we just couldn't afford to go otherwise due to medication costs, lab copays, doctor visit copays, etc.  Even just the costs of the silly things that other people would stare at you blankly for deeming vital add up.  Things like electric blankets, hand warmers, under shirts.   We need hand warmers even in the summer with her Raynaud's, though it hasn't come up as often this summer since she's been home more than anywhere.  All of this has prepared me to have an amazing experience that I can bring home and share with others!  It will also give Emily the opportunity to learn, and to share time with other kids that are in the same boat.   This is part of what the Arthritis Foundation does.  I have always hated fundraising in the past, and before I always wondered about the intentions of the reciprients.  I don't have that worry with the AF because I know that they give scholarships to people for the conferences, but they also donate to the camps for sick children.  This year they were able to send EVERY CHILD that applied to camp in Florida for rheumatology session!!!  In today's economy I think that's amazing. If you are looking for a good organization to help support they are it. 

17 days to go!  Wooohooo!!!!!!

Not too much happening...

Emily had a really hard day on July 5th.  It seemed like she hurt in more places than not, but instead of turning into a major flare it was gone the next day.  I'll never understand how that works.  She's been getting more "beeping" (throbbing) pains lately.  I'm not sure why, but I think it's starting to scare her.  She doesn't usually talk about pain that much with us, but she's been bringing those to my attention quite frequently.

I can see the difference since stopping her Methotrexate.  I can still see her knuckles, but the skin on her arms is tightening up again.  We had a whole two weeks that her arms were soft and her injections were smooth.  I am still mourning the loss of the MTX.  I hope that we can resume or find a suitable replacement soon.  The Raynaud's, at least, has been behaving.   It still makes me sad when it's 80F in here and she has on flannel pajama bottoms and a long sleeved shirt. 

I don't really stop to think too much about how this affects her sister & brother too much anymore.  I know that in the past it had a HUGE impact on our family dynamic, but since she's felt better I've stopped thinking about it as much.  On Monday when she was in pain my son asked me "Mom, do you have arthritis, too?"  (I have a touch in my knees... not enough to slow me down yet.  I suspect I have it in my shoulder, but my pain is so miniscule compared to hers that I consider myself pretty much arthritis-free.)  I asked him why he wanted to know, & his response was "Because I know that Emily is in a lot of pain all of the times & I don't want you to be, too."  I love this boy!!!  What a sweetheart worrying about us.  I thought that was so precious.  He's having a tough week, too.  His asthma has been acting up.  He's on Advair twice a day, and taking albuterol via his nebulizer twice a day.  His cough is finally getting better.  We've been working on how to breathe properly.  You'd think that would be second nature but apparently not so much!  No, my little people don't have it easy.  But they do have plenty of love & support.  I guess that in the grand scheme of things how could you ask for more?

Let's talk about pain (reactions)

For an RA sufferer, chronic pain is an obvious.  However, if you are a parent to a child that has been newly diagnosed you may not understand exactly what it can do.  Honestly, as a parent to a child that has been diagnosed for some time you still don't totally understand it, but if you are in tune with your child you will have a greater understanding of the days that he or she needs more help.  I started thinking about this last night at the doctor's office.  He had been looking way back in her chart to her first appointment when he said to me "She's not really PDD?"  PDD stands for Pervasive Development Disorder, which is a form of autism.  I will never know how long my child has had JA, but I can guarantee you based on the "PDD symptoms" that it has been a LOT longer than she'll be on record for.

Since her first appointment with her pediatric rheumatologist we have seen a HUGE difference.  At that first visit he put her on Naproxen twice daily to control inflammation and pain.  After six weeks he moved her on to Methotrexate.  After six months we moved to Enbrel.  That first year was emotionally exhausting for us all.  I had thought that I had known my child so well.  I thought that she was just not very strong emotionally, like she couldn't handle a lot.  We tried hard not to upset her, but everything upset her.  She would cry everywhere we went.  Not just a little bit.  She would cry the whole time.  For a long time we wondered what we were doing wrong.  Our other 2 children were quiet, well behaved.  I always said that Em wasn't trying to misbehave.  I knew something was up, but I had no idea what.     The closer she got to diagnosis, the worse she got.  She started developing crazy anxieties.  Not crazy, but extreme.  We could be driving at 50MPH down the highway & we'd hear a barking dog.  She would freak out.  Almost hyperventilate.  Michelle at her doctor's office hit the nail on the head yesterday.  I had said this in the past, but I like to be validated.  She was controlling what she could control.  She would grasp for straws to control whatever she could.   When you don't know what's happening it's so difficult to understand.  Just as difficult is coming to realize that you have no idea who your child is because her whole personality was a creation to cope with her pain. 
That whole first year she was a different child daily.  It was amazing, wonderful, and hard to deal with.  She went from being the one that would quietly play and not make much noise to being the one that was tackling her brother & running around like a madwoman.  These are the things that people that aren't experiencing this don't understand.  It's not always easy being a parent to a child with these issues, but it is rewarding.  We're working on stepping back right now.  I don't want to do everything for her, & we've gotten her do to a lot of things for herself now, but I have the tendency to always ask "Can I help you?" "Do you need a hand?"  I am working on not bugging her that way.  She knows that she can always come to me, or Kevin.  It hit me that I needed to step back after she told me "Mommy, if you died I couldn't live without you."  Now, I'm sure that's not what she meant... because I do everything for her.  Can't say I do that.  However, I do have room to let her be a bit more independent, & to try to figure out alternate ways to do things.  It's a balancing act.  I can also tell you that this kid melts my heart.  The days that she can't walk kill me inside, & the days that she's running makes my heart soar.  
The other big thing is don't kid yourself.  Flares will happen.  I thought that Emily was so well controlled.  Surely she would be spared.  And she was... for about a year & a half.  So many things can trigger a flare.  Strep throat did it.  And it was bad.  She had three weeks in two months that she couldn't walk.  She had one bad week, then a good week, then another bad week.  After that she had another two good weeks before the last bad one.  It's miserable as a parent to watch, but put yourself in your child's shoes.  Can you even imagine hurting that much, that often?  It just sucks, it makes me angry, & it's just plain wrong, but that's how it goes.  Since I can't change it now, I can at least advocate for her to the best of my ability in any way that I can find.  Getting involved can make a difference long term, but it can also make you feel like you're accomplishing something through your anger.  And talk to your local Arthritis Foundation chapter.  They may have people waiting in the wings to help, volunteers like those on our Florida Mom Squad that want to make a difference and help out.  You can make a difference, too.

Mixed Emotions

So, Emily went back to Dr. Nickeson today.  It always feels like a family reunion.  They are so real there.  We got home very, very late & I'm exhausted so I'll keep this fairly short. 

In a nutshell, because the Methotrexate wreaks havoc with her white cell counts (ANC) he want to stop it for a while.  I'm really sad about that, but she needs to have some infection fighting ability so it's for the best.  To compensate a bit he wants her on Motrin three times a day.  In 2008 she was on Naproxen, & that worked GREAT except that it caused huge patches of skin that started off pink and eventually became this big, bruised area that hurt her.  She's never had rashes like that since stopping it.  She also had blood in her stool after about a year on it, so Motrin is a great option.  I wondered how today would work.  The original plan was to go in this week to see if the new dosage of Enbrel was working, and if not switch to Orencia.  The MTX issues changed that.  He doesn't want to change too many things at one time, understandably.  It's good for Emily in trying help her adjust.  She doesn't want to change meds because she doesn't like change and she's a bit scared.  I can see that the Enbrel isn't as effective as it once was, but we can milk it a while longer.  Besides, I'm not ready to accept the idea of IV infusions yet, despite knowing that it's a great medicine.  We talked about the conference a bit & how excited we are!!!  Norma & Dr. N just got back from a conference themselves.  In Italy!!!!!  How awesome!!!  

Well, I'm absolutely exhausted.  I'm not even 100% sure that this makes sense.  I'll be back soon, hopefully more coherent.  Have a great night!