ENT and Enbrel!

Ok, so just so everyone can see the crazy, up/down days that we have, I will post a breakdown of the day.  This is why we are so used to dealing with stress.

8 A.M.- The kids don't want to get up (and neither do I!) but we get up & ready to go.

9:30 A.M.- We leave and take Zachary to school.

10:20 A.M.- We arrive at the ENT.  We wait for about an hour, which is fine because we were so early.

11:20 A.M.- We get set up with the nurse.  Being a mom now accustomed to the things that doctors need I have a typewritten list of meds that Emily is currently on, a print out of all prescriptions taken since the start of the infection with the antibiotics highlighted in yellow, along with CT scans and the radiology reports.

11:30 A.M.-  The doc comes in with the scans.  He starts showing us how the sinuses should look and how Emily's are not performing where they should be.  The Ethmoid sinus looks good from a frontal view but not so much as you go farther back.  He throws out two ideas.  One is that we can do the culture that our pedi requested under anesthesia to find out which antibiotics will work best against this.  The second option is that we can do exactly the same thing, plus add on another ten minutes to scrape the junk out of the inner sinuses.  That is the best option to me.  If that stuff has been hanging out for God knows how long, it may not come out on its own, and then we'd have to get the scraping done anyway.

Noon-  We're talking to a nurse, in hopes of setting up the procedure, but with all of Emily's medicines and such, she doesn't want to do it without consulting our rheumy group.  They also want to hold off on prescribing a new antibiotic until they talk to our rheumy's, which leaves me a little nervous.

12:30 P.M.- A nice quiet lunch

1 P.M.- A quick visit to the park!  Not that she runs around, but it's nice to go be closer to nature.

2:30 P.M.- We head to my parents house for a visit.  During said visit my mom again discusses how more of her colon is blocked and she's afraid that they won't be able to do the 2nd colonoscopy.  Also, my father feels tired suddenly so he goes to take his blood pressure.  It turns out to be 80/37.  Ouch.  Mom gets him some potato chips to bring his pressure up and he's good.  I take some time to order a bunch of prescription refills.

4:30 P.M.- We head to the school to get Zachary.  He tells me how his throat has been hurting all day.  Once home I pull out my scope (don't hate) and look down his throat.  Bright red.  Great.

5 P.M.- While I really want to nap, I realize that I still need to call the pharmacy about Zach's Enbrel.  It had appeared in my history, then disappeared a day later.  It had also showed that our pay portion was $2100, so I was a lot panicked.  I had called a month ago to give them our Enbrel Support info, and I had emailed it as well.It turns out that they LOST that info.  I was absolutely thrilled to find out that his Enbrel will be FREE!!!  Best. News. Of. The. Day.  True story.

5:30 P.M.- I decide to see if my school's website could tell me why I haven't seen any more info about my financial aid.  I had electronically signed the paperwork, verified everything and returned it all.  I see NO SIGN of that.  I once had an amount that I was supposed to be allowed and now I see nothing indicating that I was ever approved.  Hmmm.  I make a mental note to call on Tuesday when my son vomits.  He hadn't told me that his stomach hurt, just like he didn't tell Daddy that his throat hurt.  Now I'm really in a panic.  Need to take yet another day off of work, make another doctor appointment.  I have Omnicef at home, but with him starting Enbrel and needing his Methotrexate on Friday, I really can't take chances.  So, I call in to work for tomorrow.

7 P.M.- I realize that I need to scan a bunch of documents relating to their healthcare and send it to the school.  I email both kids teacher's.

See the up & down pattern?  Welcome to a typical day in my life.  And I have it easy compared to the kids.  They still have to go to school, pretend that they are normal kids, do their normal work, then have their meds, their shots, the infusions and the constant doctor appointments and tests.  Thank you Lord for making children resiliant!!!

Illness Update

While I told Emily Monday night that there was absolutely no way that I could stay home Tuesday, she was so miserable Tuesday morning that I caved.  Yes, I'm very worried about keeping my job, but what can I do?  She is so sick.  She functions so well, but no doubt she is still very sick.  For a girl whose temp is normally about 97F, today she was 101F in the doctor's office- and that's after being on Omnicef since Sunday.  According to my bean, it hasn't helped at all.

The weird thing is that she was fine until Saturday.  I know I wrote this in my update on Sunday, but she had a 10 day antibiotics course that ended on December 7.  I believed that this was her sinus infection coming back because she had her Remicade (immune suppressing infusion) on December 5th.  So, it's a good thing that I listened to the doctor and made an appointment for bright and early today.

Our pediatrician believes that she may have multiple infections causing this.  She added Clindamycin in addition to the Omnicef, and she ordered a sinus CT.  Our health insurance apparently needs a prior authorization before we can have it done (because a doctor's order just isn't good enough these days!), so we had no sooner time slot than Saturday.  Hopefully it will be read before Monday.  I already had an appointment for Gir made for that day; I just added Emily on to that one.  We have been at our pediatrician more in the past three weeks than I can remember at this point.

I'm still working on getting my FMLA leave to go through.  Apparently our doctor's didn't fax in Emily's stuff.  I haven't been able to get a hold of them to find out if they didn't get my fax, if it was thrown aside and forgotten, or if perhaps it needs to go to some other department.  I have no idea.  I really need to get that done.     Much as I would love to be a stay-home mom, it doesn't really fit in the budget.  Oh, how lovely it would be to not have to worry how to get a bazillion appointments done around work, how nice it would be to not have to feel guilty every time I went to work when one of the kids needed to stay home, or to not have to feel guilty for calling into work when they are very sick.  Many days it seems that, no matter what I do, by doing the "right" thing for one person, I'm ticking off somebody else.  Thank God our school understands with Emily.  I so love them.  <3

It's a little more delicate with Zach right now.  For one thing, anyone that doesn't know him likely worries that he is contagious when they see him.  He is truly a mess.  There is nothing that we can do except wait for the Enbrel and hope for the best.  Well, that's not 100% true.  I could slather him with Aquaphor all over, but he really, really hates that.  It's greasy, he sticks to everything and he's uncomfortable.  That's been the only thing that we find that works, and he begs us to not do it.  We figure, if he hates it enough that he would rather walk around feeling miserable, it must be pretty bad.  We have found a few things that help for his head.  Clobex works the best, but it's a prescription and our insurance doesn't cover it.  We would have to fail everything else first, then pay $325 per bottle for it.  No thanks.  Or there's Paul Mitchell Tea Tree Special Shampoo.  It doesn't really stop the progression of the disease, but it does help remove some of the scales.  We use a nail brush, like a mechanic would use on their hands to get the grease off.

Well, anyway, back to the school issues.  I don't have an IEP or 504 Plan for him yet, so we have to be careful of his time missed.  That would be easier if I could remember to get notes from the doctor's for him.  Today we have to take him back for his TB test results, and then we will hopefully be able to start his Enbrel.  I am currently going through an insurance nightmare with this, but I hope to get everything settled soon.  (Good thing I've been stuck home the past few days!)  I cannot wait to get his Enbrel started!!! 

Let me also say that, before Zachary developed psoriasis, I had no idea how bad it was.  I didn't understand it at all.  Psoriasis is also an autoimmune disease.  (Again, autoimmune is where the body attacks itself.) Psoriasis is it's own disease, but it can turn into Psoriatic Arthritis, which is what has happened to my son.  Psoriasis itself can really take over.  He went from having just a small patch on his ear to having his ear covered pretty quickly.  Now, years later, we marvel at how it has taken over.  It's popping up on his joints now, too.  I notice little ones trying to start all over his jaw.  It's in the folds of the knees and elbows, and the bony parts, too.  It is in his eyebrows, but it has also formed in the past on his eyelids.  He has one trying to start in the lower fold of the eye.  It itches, it burns, it doesn't feel good, and people stare.  It lowers one's self esteem.  My poor little man has been so embarrassed because of it.  Hopefully once we start the Enbrel, we will regain control of his skin issues and also head off anymore joint involvement.  I see where it's going and it scares me.  I also know that having finger involvement means that he'll likely be polyarticular (5 or more joints involved).  I'm really praying that the Enbrel is as much of a miracle for him as it was for Emily.  Yeah, what we go through is pretty crazy, but by the grace of God we get through.  As long as we have Jesus on our side, we will continue to get through with a positive attitude, knowing that He is there to lean on when we grow weary and we will be cared for.  That's enough for me.

Busy day today

We had so much planned for the day that I ended up keeping my son out of school today.  We never could have done it all if I had to go pick him up in the middle of the day.  It could have been worse; Emily's sinus infection came back.  Saturday morning she awoke with a stuffy nose and a cough again.  I didn't see her until later that night because I was at work.  When I got off of work they were already at a meeting place for the parade they were all going to be in with our Cub Scouts.  It wasn't until after the parade that I found out she was sick.  Sunday morning we were supposed to celebrate her birthday at Busch Gardens, but she had a fever & the red, watery eyes.  Her last day of antibiotics was December 7th, but she had her immune- suppressing infusion medicines on December 5th.  I should have known.   I had a call in to our pediatrician, hoping that she would just prescribe antibiotics and not want to see her back until next week.  Well..... almost.  She did prescribe a different antibiotic and called it into our pharmacy yesterday, but she asked to see her back on either Wednesday or Friday.  Sooo.....

We had been waiting for months to get Emily's opthamologist appointment.  She is supposed to be seen every 6 months, but her doctor doesn't schedule out that far, and so we end up going a month or two over every time.  She has been worried about this appointment.  I think that her paranoia fed her.  She knows that she can get arthritis in her eyes; she has some friends with Uveitis.  She also is one of the few kids in her class that does not need glasses.  She sits in the back of the room, apparently back far enough that she's been having a harder time seeing the board.  She was sure that she was going to need glasses.  Nope!  Perfect, clear, cell-free eyes!  Her pressures look good, and she's 20/20!  Thank you, Lord!  I made Zach's appointment for March while we were there.  Hopefully his eyes will also be clear.

From there we had to run up to a Health Department.  We need to have a TB test for Zachary before he will be allowed to start Enbrel.  Insurance won't even consider it without a TB test.  Of course, our rheumy had mentioned this while we were in the hospital, but I was rushing to get back to Emily and it simply slipped my mind.  I guess I got spoiled, and used to the doctor's arranging these things.  I forget that, as awesome as this new doctor is, he is new to the hospital, and not quite used to all of their policies and procedures.  So, it wasn't until four days later that I woke up at 3 A.M. realizing "oh, crap!  We need to get his TB test done!"  I called his pediatrician to set up an appointment only to find that they no longer do it.  I called a local walk-in clinic run by a hospital.  They advertise that they do it.  They put me on hold to speak to a nurse, but after holding for about 5 minutes I hung up.  We went their later that night, but they don't test pediatric patients.  That left the local Health Department.  We got there around 12:30.  I was worried that they would be closed for lunch, but happily they were open!  We had an hour wait, but I was relieved to just get it done.  When we walked in, I went to the desk to check in, and both little people went straight to the chairs to sit.  They both had their DSi's that my sister had bought them two Christmases ago, so they were just sitting quietly.  The girl in front of me who was about twenty, turned around to look at me and says, "I have never seen two little kids just go and sit down quietly like that.  You have some really great kids!"  Yeah, yeah I do  :)  We waited about an hour, but it went by quickly.  Emily was trying to lead the way.  Funny... we've never been there before.  The nurses kept asking me why he needed the test.  I explained that he has psoriatic arthritis and he needed to have it done before he could start Enbrel.  The nurse looked at me like we all had 3 heads.  Then she asked "what's Enbrel?"  Seriously?  Hmmm.  At least we don't have to ever go back there, aside from to have his test read.

We had a chance to run home and grab some lunch.  We had a whole hour to kill before we had to leave again.  I used the opportunity to make some phone calls.  I called our pedi to see if I could make Emily's appointment for late on Wednesday.  Their answering message claims that their Wednesday hours are now until 5.  I had been pretty excited to hear that since they've always closed at noon on Wednesday's.  Well, apparently their answering greeting is wrong; they still close at noon on Wednesday's.  I was able to make Emily's appointment for 9 A.M.  Not so bad having the very first appointment, unless you consider that I'm supposed to already be at work then.  .  Throw into the equation that Zach needs to have his TB test read between 1:30-4:30 that day.  Then, just for kicks, throw in that I have to send Emily to school tomorrow sick (though NOT contagious).  Why do I have to do this?  My company realized that everyone was actually using their sick time, and they decided that they want to stop it.  I totally understand that there are many, many people that abuse this.  They decided that you can only take 2-3 sick days per 6 month period unless you qualify for FMLA (Family Medical Leave Act) leave.  No brainer, right?  Two sick kids, under eleven should do it, right?  Except they didn't get my paperwork back in time from the doctor's.  That may partially be because, by federal law, they have to send it to your house via certified mail.  It isn't the government's fault if you are stuck for two weeks in a hospital three hours away from home, right?  Two of my higher up bosses have told me to not worry about the past time, but I have to worry about the future, too.  So, yeah, I can't stay home with her tomorrow.  I would LOVE to.  I have so much to do.  But I can't.

Anyway, after our break we had to run to their dentist for their scheduled cleaning.  Emily still has several baby teeth that won't fall out.  She won't let us pull them out.  Her adult teeth are fully grown in around them, but they are stubbornly hanging on for dear life.  Her dentist informs us that she will need braces- but not yet.  Both of my girls are so careful with their teeth.  Gir loves her little flossers and takes her time with her teeth.  When she was little, Emily would wake up from a sound sleep (on the few, rare nights that she crashed before brushing) realizing that she forgot to brush and come wake us up.   Screaming.  I'm so glad her diseases are under control now.  I don't miss that!  Zach... Well, he's a boy.  He doesn't want to be bothered with brushing.  We almost always have to make him go back & re-brush.  He has several cavities.  Two of those are in his big-boy teeth.    I can't say that I'm surprised, but I can't say that I'm excited, either.  

Between the 3 kids, we have been at our pediatrician's office twice in the past week, with Emily's next appointment on Wednesday and Gir's follow-up next Monday.  Yeah, this is how I spend my days off.  Pretty exciting, huh?  My son isn't nearly as sick as Emily was when she was diagnosed, but I'm hoping that I can get "absent for frequent appointments" on his IEP (Individual Education Plan).  I worry every time he's absent.  She is covered; the school has access to her medical records and it's in her IEP.

She told me the other day that her thigh muscles hurt.  Scared me!  Today she had no pain there, so hopefully there isn't a flare starting and it was just a pre-cursor to the reoccurance of her sinus infection.  Zach... his psoriasis is TERRIBLE right now.  I cannot wait to get treatment started.  The poor little guy.  It is so visible.  It looks so painful and uncomfortable.  At least now we're on the road to getting it started.  Can't wait!

A birthday & a new diagnosis...

It's time to change the title of the blog again!  My 9 year old is now an old ten year old lady!  I can't believe it's been ten years.  I feel blessed every day to have these kids.  Today was a good day.  She was very tired from her meds yesterday, so she stayed home today.  I ran her brother to school, ran to the grocery store to pick up her cake, ran back home, and then had to run back out to take my oldest to the doctor.  After a trip to CVS for more meds, we were back home.  She had kept telling me over the past month "I can't wait to go to therapy on my birthday!  Miss L.A. will have to wish me happy birthday!"  She was too tired to go today.  She requested pizza for dinner, so I ran back out for pizza.  We all had a nice night laughing, having a hug war, and just enjoying each other.  I also noticed tonight that her pants are falling down.  Why is this significant?  She is definitely losing a LOT of Pred pounds lately.  She's lost about 10 steroid pounds in the past couple of months.  The only way that we can tell is by looking at how her clothes hang on her.  Shirts that we bought last November that she was popping out of by the end of that month are now looking more like dresses.  I know that it's not going as quickly as she'd like, but there is true progress.

So, we had appointments yesterday.  She has done pretty well without an NSAID over the past two months.  She has had some days with a back ache, or knee pain, or a bad elbow day, but overall she's done very well.  Well enough that she didn't want to try another NSAID.  Works for me  :)  However, she did notice that she has 2 new bumps- one on each hand.  She told me that they were rheumatoid nodules. (There's a switch!  LOL!)  We remembered to ask the doctor yesterday and he confirmed it.  All of us are pretty surprised.  She hasn't had any nodules since she started Enbrel in late 2008.  They seemed to only pop up when her JA was active, and right now it's actually been pretty quiet.  Well, maybe not as quiet as we thought.  Where the past few months have showed low inflammatory markers, yesterday showed that her SED Rate  is creeping up.  The ranges for kids vary, but the range our hospital uses shows the normal range ends at 20.  Her SED was 22 yesterday.  No, not significant, not the 39 that it was last October when she was diagnosed with JDM, or the 79 that it was at one point last year, but significant enough that we'll need to keep a close eye out for more symptoms.  I really don't want to take her off of Remicade.  I don't want to have to make another change.  This combo seemed to be working so well!  I'm not going to panic.  We'll just watch for now.  He felt that her ankle was warm, and her Raynaud's is getting a little worse again, but otherwise she is doing well.

And then there's my son.  People that know me well will tell you that I have little patience for drama.  I try to be as realistic as possible.  I hope and pray for the best, but I expect the worst in a realistic fashion.  I have excellent intuition.  There are many things that I know, though I couldn't explain how or why & it probably wouldn't make sense, anyway.  I just know.  I have always known that the idea of my oldest having arthritis is preposterous.  It would make as much sense to worry about her having arthritis as it would worrying about my little people running away to join the circus.  But my son.... I've been waiting for it.  I've held my breath hoping that I would be wrong, maybe just paranoid because pretty much every ounce of my spare time has some sort of arthritis involvement.  But I knew that one day he would be diagnosed.  Yesterday was that day. 

A little background.  Em was diagnosed with JA in January 2008.  By May 2008 Zachary had developed psoriasis.  Of course, "kids don't get psoriasis" was what our first dermatologist claimed, even after we had him scratch tested for allergies and the allergist wrote a note saying it had to be psoriasis.  This guy claimed it was impetego, a fungal infection, ringworm, eczema, a yeast infection... everything but psoriasis.  We switched dermatologists after we did some reading up, and realized that it was psoriasis.  He had a classic case.  It started by taking over his ear, then it moved to his head, forehead, cheeks, chin, and eyelids and eventually everywhere.  We have never been able to gain any control over it.  Not really, anyway.  He did have a short period of time that he was mostly clear, but then it came back with a vengeance.  I'm not good at guesstimating, but if I had to, I'd say he has about 70% coverage right now.  It's bad.  It's not comfortable.  It's very visible.  It's very out of control.  Aside from the vat of oily, greasy Aquaphor, nothing helps.  So, I read.  I look for things.  I know what to look for.  From the MCTD, Emily has what they call "sclerodactyl" hands.  I have read that people with PsA get the "dactyl" hands.  Well, I took a shot in the dark and figured out that the two were probably pretty close.  I figured that Em's was different mainly because of mild scleroderma features, which is what makes her fingers look tight and shiny.  Take away the scleroderma part of that and... well, you know where I'm going with this.  Of course, right now hers still look like overstuffed grapes that are going to explode any second, but that's also from the steroid swelling.  Take that away, and I knew that his hands look dactyl.  That bothered me.  I've watched his nails turn yellow, pit, look horrible.  Those are signs of PsA.  He's had heel pain- a sign of Spondylitis, the type of arthritis most often associated with PsA.  I begged his pedi's to test him back in 2009.  Everything was negative, but I was sure it was wrong.  I was totally going to enjoy him not having any pain, but I knew that it was just a matter of time.  So, this past August when he came to tell me that his jaw hurt and was clicking, my heart stopped.  Again, I just knew.  I hoped I was wrong.  I hoped it was TMJ.  But I knew it wasn't.  Of course, Kevin was still unemployed then, so when our dentist wanted $100 for a panoramic x-ray, I wasn't thrilled.  I also knew that arthritis would likely not be picked up on a panoramic.  Generally they run MRI's.  I knew that I had to get him in to our rheumy's.  I took advantage of one of our docs volunteering at our JA Family camp.  I asked her to look at him.  She agreed that he needed to be seen.  I then set about trying to get our pedi's to run those same labs I asked for in 2009, but with an ANA and an HLA (spondy) series thrown in with a CRP & ESR/ SED rate.  Thankfully, they love us and they know that we are not trying to scam or hallucinate problems.  While not being seen as early as I wanted him to be since Emily was stuck inpatient while he was supposed to have his appointment, I finally got Zachary in yesterday.

We saw the new doctor.  He isn't really new to me; we saw him more the time that Emily was inpatient than anyone else.  We really grew to like him and his wife that week.  He was originally thinking about ordering the MRI for his jaw, but he can feel the arthritis in there.  He also said that it would be very unusual for him to NOT have something more with as much psoriasis coverage as he has.  He was intrigued by his fingers, too.  He saw the dactyl look of them right away, and noted that they are all tight.  I'm not nearly as fazed as I probably should be.  Maybe I'm just in shock, but I think it's really because I was that certain that he would one day be diagnosed.  I've had so many reasons that I've just tucked away up in a corner of my brain, waiting for more puzzle pieces to fall into place.  If anything, I'm relieved.  No, I certainly don't want him to have arthritis, but I do understand that these things are much easier to control the earlier you start trying.  I have seen kids that took so long to get diagnosed that they can't get under good disease control.  I wasn't about to let that happen.  And that is why I'm relieved.  We're just waiting on our Enbrel prescription to work its way through our insurance.  I've already picked up his Methotrexate.  He'll have his first dose on Friday night.  We're starting him easy- he'll be on the pills, mostly only because Enbrel works better with MTX.  Hopefully this will be what he needs to help his jaw and calm his skin down.  It's so bad that, when he gets up from my desk after using my computer for a while, there's dead skin all over my chair, desk and keyboard.  How can that be comfortable???   So, we keep breathing.  One day at a time...

Port placement is Tuesday

As we get closer and closer to Tuesday, I find myself getting more & more nervous.  I'm sure that this port will be the answer to our prayers, but I'm still dreading the procedure.  We had a month long wait to get in to see the surgeon for the consult.  Then, her infusion was scheduled for the next week along with a doctor appointment, but they didn't have an opening for the surgery for that day, so we had to wait another 5 weeks until her next infusion.  That really figured because in August we were there every week, and in July we were up there twice.  This was the first time in a while that we had a few week break.  Unfortunately, that break allowed her anxiety to build and build.  Emily has slept in our room almost every night for the past month.  And yet, when I asked her if she wanted to cancel the procedure, she said no.  She realizes the benefits outweigh the risk.

It amazes me how strong she is.  The things that other kids couldn't handle she breezes through.  She is so logical, so hard working, so brave.  Her diseases may be hell on her, but they have helped to shape her into an amazing little girl that is wise beyond her years.  It's sad in some ways; knowing that her life is shaped around pain, for one.  She's had to make some hard choices.  I'm so proud of her.

I'm feeling very conflicted right now.  On the one hand, I'm so thrilled that port is being placed.  Especially after her last appointment where she hit and kicked the nurses for a while.  I was mortified.  I couldn't get her to stop, and they were all so sweet and patient.  It makes me angry that a surgical implant like this should be a blessing, a great thing for us.  How wrong!!!  No little kid should have to go through this, and yet she wants to do it.  She has really grown up this year.

We've been trying to think of a Christian song that talks about fear.  She told me that she wished she could find one that could help her, but my mind is over-stressed and drawing a blank.  Anyone have any suggestions?  I may still have time to download some.  Tomorrow I will have to be in bed by 8 or 9 P.M.  We have to be at the hospital at 7 A.M.  We live about 2.5 hours away.  I am sooo not looking forward to this.

On a different note, we're still working on getting my son figured out.  Our pedi wrote us a prescription to take him for a panoramic, but the radiology place by us no longer has the panoramic.  They suggest a CT scan, but I think I would prefer an MRI.  I know that's what the TMJ specialist in Birmingham suggests.  I'm going to call them tomorrow (if I remember) and see if they can either give us a different prescription or refer us to a TMJ specialist locally.  I've run into roadblocks at every turn trying to get him checked out.  Also, our pedi didn't give Kevin a prescription for labwork, but they must have read my note after Kevin left them.  I got a call a few hours later saying that I can pick up the paper copy anytime.  I had noted that, at the session in the conference, the Alabama doctor said that 83% of  JA children have arthritis in their jaw, but they don't know it.  It's painless and silent.  He also said that most children's start in their jaw, but it goes undiagnosed.  I'm still praying that we don't need to worry about that.  I've spoken with several people that have psoriasis and TMJ, so hopefully that's all it is.  Anyway, I also requested that *IF* they ordered labs, to please run the RF panel, the inflammatory panel, and the HLA-B tests.  Those point specifically to spondylarthropathies, which run with psoriatic arthritis.  Hopefully, all will be negative.  I don't need another baby in pain, though at least then maybe we could get his psoriasis under control.  It's very stubborn!

Needless to say, I'm having a rough week.  He's cool with this.  It doesn't really bother him, but I'm ticked off that I don't have any answers yet.  I hate roadblocks.  I know- I have time to be patient.  I'm working on it.  Really.  And I'm holding up.  I'm really used to this stress cycle.  When things are quiet and going well, I'm very edgy and nervous.  I think sometimes that most people don't ever have to deal with anything like this.  They can be blissfully unaware that 300,000  kids are out there suffering silently.  I miss being ignorant.  Despite all of the blessings that we've had grace our lives since Em's diagnosis, I would gladly trade it all for 3 healthy, normal children.  But then again, I bet that our house wouldn't be so happy and loving, we wouldn't count our blessings the way we do now, or try to see the bright side of everything, would we?  While it doesn't define our lives, it's certainly an integral part. Life is what you make it.

Good news for Emily, new worries for my son

We have a lot happening right now, as always.  I'll start with Emily's appointment.  Hers was actually great!  I suspected that it would be.  Minus the steroid weight that she still carries stoically around, she's feeling better than she has in a very long time.  Since we've added the Rituxan into her infusion schedule, she's now able to strap herself into her seat belt in the vehicle's by herself, she can finally roll her windows up and down in the car, and she's finally climbing stairs again!!!!!  That is huge to us.  I really hated for the kids to go back to school; I'm the weird mom that actually likes hanging out with her kids, but I knew that it would be so good for Emily.  She pushes herself at school in ways that she won't at home.  I'm so excited to talk to all of them when they get home from school, but especially to find out what physical activity she has done.  

The doctor was impressed at how far she has come on her Rituxan.  We are leaving her Remicade dosage the same, but we are able to decrease her Prednisone again!  We tried in July, but that was before the Rituxan.  The doctor did note that her left hand feels tight, but otherwise she was amazed at her energy.  She's also very happy that we have our port surgery scheduled.  Emily & I can't wait for that.  I'm so glad that Em's on board with this.  I really, truly feel like this could potentially be the best decision we've ever made for her.  Every infusion her stress level is worse.  She's great until the nurses come over with the supplies.  This time, they went & got her new favorite nurse (because she can get her on the first try usually) from the unit next door and had her waiting.  Em hates having the needle in or near her hands.  That's the first place they went.  She just freaked- shut down.  Next thing I knew, she's kicking, waving her arms around, thrashing, and screaming frantically.  The more upset a person gets, the harder the veins are to access.  They had to give her a break.  Even worse, her nurse warned her that if she didn't calm down she would have to leave because she had other patients, but Em just couldn't do it.  I think Em understood why she left, but I think she felt bad about it.  I totally agree with her needing to get back to her other patients.  She can't wait around all day- especially when it's not her unit.  I really appreciate how well the people in this facility get along.  There's a high level of support that I really appreciate seeing.  The infusion room nurses have to go through a lot.  The hours are good, but they have a lot of other screamers and harder kids.  Somehow they always seem to be a happy bunch.  It makes it so much more fun to go, because they're all crazy.  :)  For us, after the pokes are done, we can chill out.  (Often literally; it's freezing in there!!!)

Otherwise, her appointment went well.  I asked if we'll be ok to go to the family weekend at camp since it's the weekend after her port placement, and we're cleared for that.  The rest of what we spoke about wasn't actually about Emily.

I've debated on talking about this since I really don't know what's going on yet, but I decided that no matter what it turns out to be, these are the things that we have to worry about.  For anyone that wonders about the types of things that go through our heads, here ya go. 

I mentioned briefly at the end of my last post that my son had mentioned his jaw was clicking.  I swear, my heart stopped last week.  He showed me how he can pop his jaw and how it clicks and hurts.  I was dumbfounded.  When we were at the conference, we attended a session on JA & Jaw issues.  We missed the first 20+ minutes because we were speaking to another doctor in the hallway.  What we caught was that jaw issues are usually silent, and up to 81% of kids with JA have jaw involvement; the speakers says that evidence shows that the jaw may actually be the first joint affected.  My son has had psoriasis for about 3 years.  He has nail presence and other signs that lead to potential psoriatic arthritis.  Now, I'm not by any means saying that he definitely has PA.  However, when I asked our rheumy if she felt that it could be, she said that given his psoriasis and our family history, he definitely could be developing arthritis.  SO, I'm trying to get a panoramic x-ray appointment set up for him, but since we are totally broke from so many trips to Shands, I can't do that right now.  At least, not with his regular dentist.  I've emailed our hospital about it.  I figure, if it is PA he'll need to see the rheumy too, and since we're always there anyway I may as well schedule it for when we're there with Emily.  I am praying that it is just coincidence.  Not that I would want him to have TMJ, but TMJ would totally be better than deterioration from arthritis.  Not to mention, at least TMJ only affects the jaw area.  Our rheumy said that most PA is considered in the Spondylitis family- something I haven't read up on yet.  I've read up a lot on PA today, but I think we're in for a wait.  I really hope that my precious little boy doesn't have to go through this crap, too.  If he does, I'm hoping that we are catching it way earlier than most kids are diagnosed.  There are some things to be said about a heightened awareness!

And I will leave you with food for thought.  We are very blessed to have (for Emily only) Medicaid as a backup from Social Security.  There is no way that we could afford our copays without it, as I will show below.  This is a copy of our insurance explanation of benefits.  Emily has a $3500 deductible.  If we hadn't met her deductible, and if we didn't have Medicaid, I cannot imagine what our copay may have been.  We have a 20-30% copay normally.  I know that we had a balance from one bill that Medicaid wasn't covering that was over $5000.  There was another for $1200 and another for $1500.  How could any normal person afford these treatments?  Why do they have to be so expensive?  And, if arthritis is "no big deal", then why would we be paying such a high amount of money per visit???  The visits include seeing the doctor, labwork, and infusion meds.  Of course, it's the meds that are expensive.  When she was on Enbrel, we could do her shots at home and with only a $10 copay with their assist program, but without insurance they would have been $2500 per month from our pharmacy.   Someone told me once that they were charged $36,000 for an IViG.  I can't find it again, but I believe I read that Rituxan goes for $11,000 for the first 2 doses.  The rest are smaller doses, going for more like $5,500 each.  

The All Children's bills are from our therapy appointments at a specialty center.  She has occupational and physical therapy weekly.  (Her therapists are awesome!!!)  The last entry is from our pediatrician.  (LOVE her!)  I learned a few years ago that doctors charge you by your conditions.  If you are a very healthy person seeing your doc for something like a sinus infection, you will get charged MUCH less than my daughter will, even if she's being seen for the same sinus infection.  Good times, eh?