Monday, December 26, 2011

Counterbalance II- The Year in Review

I hope that everyone had a wonderful Christmas, Chanukah, or whatever you celebrate!  We have been very blessed this year.  My kids had probably one of the best Christmas' ever.  We made some great memories with family, had some great meals, we watched a historical documentary of the birth of Christ, and just enjoyed.  I hope that you & your family did, also.

For those of you that know us in "real life" or have been following the blog for the past year, you know the crazy roller coaster ride that we have been on.  I know that not everyone has the same religious beliefs as me, but I truly believe that we are constantly being tested and consequently rewarded.  I feel as though we are living testimony to the miracles of Jesus.  Many will argue with me; while I wish that you could believe what I do, I respect your beliefs.  I promise not to drone on about my love for Jesus the whole time, but I'll pray for you ;).

Last December our family was very down.  It was only last October that Emily was diagnosed with the Dermatomyositis, and December brought one of several months of severe steroid swelling.  The child was so swollen that her eyes couldn't open all of the way.  She went from 42 pre-steroid pounds (which we rejoiced at because we couldn't get her to gain weight before) to 75lbs in about 2 months.  It was shocking.  This time last year, Emily was so depressed that she couldn't think of even one thing that would bring her joy.  That was when I first started looking into Make A Wish.  Being a systemic disease (that can attack her organs), and because so many of her medicines can have very severe side effects, she easily qualified.  December also brought us a secret Santa.  Despite Kevin being unemployed, we did well enough to be able to afford a decent Christmas for the kids, but then we had this huge blessing appear on our doorstep.  Words couldn't express how giddy it made us.  It was a bright light during a very dark time.

I think it was February that Make-A-Wish informed us that they could help Emily.  This was the start of  a slow change in personality for Emily.  It's amazing what HOPE can do.  It helped her come from deeply depressed to back to a spunky little girl.  We set a date for March to meet our wish givers.

March came, and we had to post-pone the meeting with our wish givers because Kevin had to have radiation for his thyroid cancer.  We had found out about it the past November (at MY doctor's appointment, without him even with me!), but he chose to put it off a couple of months because it required an iodine-free diet.  He wanted to get past the holidays, but then it took months to get his thyroid levels to crash low enough to do the scans.  It wasn't very funny then, but he had come home saying "I can't be within 6 feet of anyone, I have to use plastic silverware and plates and put everything aside for a week or it will raise alarms at the dump.  Oh, and my half-life expires on May 21".  We had originally been told all that we needed was a seperate bathroom....  It was the following week that we met Em's wish givers.  They told us that they would work on her Disney wish! March was also when my mom first told me that there was "something" wrong with her, then tried to retract it because she didn't want to seek medical help.

In April we had a nice break with a Cub Scout camping trip.  We needed that!!!  Later in April we were told that Emily's primary wish would be granted!  Oh, how exciting that was!!!  I think that, in some ways, this made us worried because nothing ever goes smoothly for us.  I don't know why, but there's always a crisis of some sort, so we kind of waited with baited breath.  They were working on a vacation date as early as May!  We couldn't believe it may be so early. 

May brought Emily's Disney trip!  Now, you may think, you live in Florida; why go to Disney?  When faced with the ups and downs that we have been faced with, when you live too far away for a yearly pass, it just seems out of the question.  Make A Wish and Give Kids the World truly made it a magical, amazingly special week that she still talks about as though it were yesterday, especially her meeting with Rapunzel.  We were able to spoil the other two kids, and just try to forget all of the appointments, the problems, the finances, and just enjoy family time. And we actually had quite a bit of money left over (we had become very used to being frugal!)  That made us decide to take a huge jump that we really shouldn't have, but needed to.  Which led us to June & July.

 In June we spontaneously put in for a scholarship from the Arthritis Foundation to go to the JA Conference in Washington DC.  I wasn't going to apply this year, so I put it in late because I wanted to be considered last.  After all, we had an amazing Disney trip; not everyone could say that, & also because we had gone the previous year to the conference, but only Emily & I.  I found out the week that we were helping at Cub Scout camp that we won a scholarship!  That meant that we could afford to drive up and have all of the family go.  I didn't want it to be just Emily & I again.  We were very excited!  This is how we spent the rest of the MAW money.  This month also brought a speeding ticket that I deserved (yes, my bad.)  I was totally preoccupied thinking about the dermatologist appointment that we were heading to for Zach.  His psoriasis had been beyond-our-control-persistent.  The doctor gave him injections which didn't really help, and more creams.  I was really starting to feel frustration at this point because it was really taking over him.

In July Em's doctor's suggested adding a new medicine to her IV infusions, and they also asked us to consider getting Emily a port to make her infusions easier.  They were getting worse and worse.  This brought us to the conference with a whole lot of new question to ask (and a new speeding ticket that I did NOT deserve!).  All that I can say about that is there are some officers that should really be ashamed to call themselves law enforcement.  The conference brought us some amazing memories.  It was so cool to go and meet so many of the people that I've met on Facebook!  It really felt like being with family.  I'm always the shy one that doesn't know what to do around people, but this was different.  We learned some great things about Rituxan that encouraged us to try it, and had the opportunity to speak to Dr. Lisa Rider, who co-wrote "the book" on Juvenile Myositis.  She had her first dosage just after we got home & she noted a difference right away.  We decided to go ahead with the port.  While at the conference we took a jaw class because we knew nothing about jaw issues, only to find out that we would soon need that info.  We detoured on the way home and spent two nights camping in the mountains.  Secretly, I was hoping our house would have burnt down while we were gone so that we could go back to live in the mountains.  I'd be happy living in a tent in Cades Cove.  It is heaven.  <3  That's where my heart lives.

One morning in August, my son walked up to me and says "Mom, my jaw is clicking & it hurts".  I'm pretty sure my heart stopped.  With his psoriasis being so, so bad, I had been expecting "Arthur" to rear his ugly head at some point.  This led to a frantic mission, how to get him diagnosed.  Doctor's often like to think that you're "just being paranoid".  Let me tell you, I'm beyond paranoid.  I'm in reality, & our reality is that things go wrong.  However, as long as we face them head on and quickly, we can deal.  It's when things drag out that they become more complicated.  So, I had a lot of work to do that would certainly have been much easier to do if I had a medical degree.  I really need to work on that. Somehow I almost forgot to point out that it was in August that my mother was diagnosed with colon cancer, which brought emergency surgery & a while host if new problems.

In September we were randomly chosen to have 2 tickets to a concert that I desperately wanted to go to but knew that we couldn't afford.  Despite Kevin still not working, I had continued to give in faith to The JOY FM.  They do a lot of good for the community, and they have been a huge blessing to me.  I never thought we would get free tickets!!!  Oh, I was so excited!!!  I took Emily with me.  She really needed a fun night out in anticipation of the port.  September also brought her port placement.  UGH!!!  It was horrible to deal with her anxiety about it; she was so terrified, but she still wanted to do it.  The procedure went fabulously, but we found as we were leaving that day that her IgG counts were down.  (Immune system counts).  I knew that she would be the one to have a problem, but I hoped & prayed for the best.  My son came home from school with a $100 gift card for WalMart from an anonymous source the week of her surgery.  <3  We had Family Camp weekend at our beloved Camp Boggy Creek this month, too.  It was Rheumatic weekend, so families that weekend were all affected by arthritis in some way.  One of my favorite moms happened to look at Zach's fingers and noted that they look swollen.  To me, they look like Emily's- Dactyl.  It's a sign of arthritis.  It felt so validating to have someone else see what I saw.  It got my wheels turning, and when I saw one of our rheumatologists from our group at lunch, it occurred to me that she was there as a volunteer and it couldn't hurt to ask her to look at him, right?  She couldn't quite tell by the fingers, but she said even if there was no arthritis she could treat the psoriasis.  She asked them to schedule him with Emily one day, but we still had to get a referral.  So, I got with my pediatricians and requested a bunch of labwork in the meantime.  I'm so glad I did because I had no idea that all of the tests I requested were what they wanted us to have before he was seen!  So,

In October we finally were really hurting from Kevin's job loss.  We had our internet & cell phones off because we just simply couldn't fit them in around other expenses.  Some amazing person paid our bills.  About $400 worth!!!  We made a shout out that we could pay them back in the next week; Kevin had cashed in his 401K to get caught up, and we had only to wait for the check.  No one came forward.  God bless them!!!  We desperately needed some good by then.  We also expected to have Zach seen by our rheumy, but instead we spent 2 weeks between two different hospitals for a staph infection in Emily's port.  We were in the hospital two & 1/2 hours away on the day of his appointment.  I would have had Kevin bring him, but Kevin had just started working again!!!  I knew that when the time was right, he would find the perfect job.  I knew it because I had prayed that he would lose his previous job and find something that he would love.  We waited patiently, faithfully.  Things just fell into line, and this job does, indeed, seem perfect.  We had a tumultous month, but we got through it.  We had some truly amazing friend send things to keep Emily company or keep her busy.  One of the nurses gave her the wrong dose of one of her meds and reacted.  They thought that she had aseptic meningitis at first.  Thankfully, it was just a reaction and lasted only 2 days, but that was the worst two days ever for her.  It was terrible!!!  She celebrated Halloween in the hospital, having some of those amazing friends send her exactly the costume that she wanted.  We also had Mr. G from our elementary school call me while we were still in the hospital to ask if we needed anything done around the house.  Oh boy!!!  In truth, we had so much that needed to get done that I told him that I couldn't really think of anything.  We really had a LOT of things that had been put on the back burner. We also had a friend send us a check because God led him to.  We were able to use that to finance Christmas, which would have been pretty bitter otherwise.

In November Mr. G and one of the coaches came over to see how they could help us.  I'm really not good at accepting help, but they made me realize that this was something that a whole lot of people wanted to do, and they were all pretty excited about it.  I realized that sometimes by accepting help, you help other people.  It's a crazy, wonderful, brilliant circle.  It was so much more than "just" a little housework.  I would go too long re-describing it, but check here if you missed it.  When the time came, my street was taken over by vehicles from all of the volunteers that came out to help us.  It was overwhelming, and beautiful.  It was even more beautiful to find out how many of Emily's friends had come over and helped out!  The kids all had fun (so I've been told  :)  and it's a wonderful way to inspire them to help.  My family has all felt like a great weight has been lifted.  It was truly amazing to see someone's idea come to reality in such a grande way, though I admit I was at work for most of it!  Emily was home, the beginnings of a sinus infection hitting her.  She's still fighting it.  She's been on antibiotics since October.  She won't be off of them until the middle of January.  (Sigh)  November also brought a solid diagnosis of Psoriatic Arthritis for Zachary.  The doctor that we saw that day could feel it in his jaw.  He originally said that he'd order an MRI before he felt it; then he said there's no need- it's there.  He's been started on Methotrexate and Enbrel.  Not something I wanted to be right about, but I've known for years that he would have it.  Just knew.

And December... Our van was broken into last week.  Can't forget that.  It was frustrating, but it's just stuff. Otherwise, aside from the house being sick, and worrying that Emily would be in the hospital for Christmas, with her CT scan showing her sinuses totally blocked, it's been a wonderful month.  (Really!!!)  We've had zero time for anything.  Every day off that I've had, someone has been home sick.  BUT, she's home.  We received a card from an anonymous source, sent to the school for us.  Some wonderful, blessed stranger gave us $60.  They were touched by our story in the paper.  Our scout pack spoiled us.  Knowing what we've been through, knowing how much Kevin helps out, yet knowing that we weren't in need!!!!!!!!, they gave us an amazing care package.  Pretty much "shut up and smile".  LOL!!!  Do you see why the word "Counterbalance" runs through my head?  I see miracles.  No, not huge ones.  But I can see the little ones that people don't notice.  I catch little glimpses of how God works through us all.  And it's beautiful.

I hope that we have better health around here for 2012, but even if it's just as crazy and stormy as this year, I'm sure that we will have plenty more rainbows and plenty of blessings to balance it all out.   Happy New Year to any of you that have made it this far!!!  God bless you, and thank you for all of your love, prayers & support.  <3

*Edited a few time because I'm a dork and should have written all of these things down!  Relying on my memory= not so good!!!

Thursday, December 22, 2011

A link for you & a quick update

I had several of my fellow Dermatomyositis mom's in my Facebook groups link a story tonight that I wanted to share with you.  This video is about a girl with Dermatomyositis, and how her health improved greatly with the help of a therapy dog.  This is very sweet, but it also gives you a peek into what life with this disease is like.  I have asked Emily to make video's in the past to give people an idea of what it's like.  She is still too sensitive about her steroid swelling (puffiness) to want to be captured on film.  I hope that one day she will change her mind and help to educate in this way, but for now this girl is helping  :)  Very exciting!  It is hard for me to explain to people why it's worse than "just arthritis".  Don't get me wrong- RA is very bad, very serious.  But DM is even worse.  Not only does it inflame the muscles but it actually causes muscle destruction.  Those muscles don't really function anymore and have to be rebuilt if they are allowed to get very bad.  It is a very rare disease, and not many doctors have seen it, so it tends to go unnoticed or undiagnosed.  This can cause weak muscles in the thighs, upper arms, neck, back, stomach & throat.  Yeah- the throat.  Some people with DM (mostly in the adult crowd) require a breathing tube and a G-tube for nutrition.  As the mother in the video states, it is a systemic disease, meaning that it can affect the internal organs. 

And, as an update from her last doctor appointment, our pedi had ordered a CT scan of Emily's sinuses.  We saw her on Monday.  Em's sinuses are totally stopped up.  Sooooo, she has another week left on Clindamycin, when we will switch back to Augmentin.  This will mean that from October to the middle of January, she will only have had about a 13 day break from antibiotics.  Woot!  Crazy, huh?  She was only home from the hospital with the staph infection for about a week before her cold, which quickly turned into sinus infection, began.  And she only had a 3 day break between rounds before my Sunday call to the doctor.  Sometimes the disease is worse than the medicines, but sometimes the medicines make life worse than the disease.  It's a balance that's really hard to attain sometimes.  I'm just thrilled that they didn't want her to be admitted to the hospital.  I figured that after 2 weeks on 2 of the strongest oral antibiotics, still with a fever, and still so congested, that they would want something stronger.   I truly feel blessed to be able to spend Christmas at home.  (As long as nothing goes wrong between now and then!!!)  Prayers are always free and very appreciated!!!  We are always very thankful for as many prayers as we can get.  They are all that we need.  <3  Thank you!

Sunday, December 18, 2011

Still sick!

Well, despite the 2 heavy-duty antibiotics that she's on, Emily is still coughing, sneezing and stuffy.  On the plus side, her fever is down.  Her temp was "normal" today- 98.6F.  Of course, her normal is usually around 97.1F.  She had her sinuses scanned by CT yesterday, and we have a follow-up appointment with her pediatrician tomorrow.  She actually wants to go to school tomorrow.  I have no reason to keep her home if she wants to go, but I am worried that she hasn't kicked this thing.  I made her use our nebulizer a little while ago.  She said that it did help " a little bit", but not significantly.  I don't really know what to think.    I am hopeful that our pedi will have some answers tomorrow.

Wednesday, December 14, 2011

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.

Monday, December 12, 2011

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!

Tuesday, December 6, 2011

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...

Sunday, December 4, 2011

Two appointments tomorrow, two next week

As always, there's a lot going on this month.  Next week we have Emily's opthamologist appointment to make sure that her eyes are inflammation-free, and a dental cleaning for all 3 kids after that.  Tomorrow is a Shand's day for 2 out of 3 kids, and a pediatrician appointment for my oldest on Tuesday.

I am so excited to have my son's rheumatologist appointment tomorrow!  I was so sad that he had to miss the one that I made for him last month, but I just couldn't run (three hours away) back to the house from the hospital to pick him up, then get him back home and myself back to the hospital.  His psoriasis is soooo bad right now.  It makes me sad how bad it is.  After he uses my computer, I sweep up a pile of dead skin from my desk, my keyboard, my mouse, my chair, etc...  I feel so sad for him.  It can't be comfortable.  We've run out of options.  Everything that I read says "do not use steroid creams for more than 5% body coverage".  Well, that leaves Aquaphor, but that is so oily and greasy that he hates it.  He begs us not to use it, he'll sneak off to bed or find some other way to avoid it.  When the rheumy saw him unofficially he had said that there is a once a month injection that should do the trick.  He also said they would likely order an MRI to check his jaw.  To be honest, I prefer that over the dentist's panoramic.  I think the dentists look for TMJ, but probably not arthritis.  In fact, one thing that has fed my fear was the first statement that I recall from our jaw session at this summer's arthritis conference.  The doctor leading it said that up to 85% of children start with arthritis in their jaw, but because it's silent (not painful) it doesn't get caught until other joints pop up or until the jaw gets very bad.  I try very hard to keep a level head, to not panic, to think of all of the possibilities first instead of dramatically rushing in to cling to the first crazy thing that comes up.  I don't have much time or patience for drama.  I carefully analyze, & I've learned how not to panic until I know something is fact.  By then, I've usually read all that I need to know to not panic.  What I know is:  my son does not have any blood markers that concretely show any evidence of arthritis.  He does show positive for the one trait that they believe points to psoriasis.  He has had nail pitting and other nail changes that often can lead to arthritis, and his fingers look like my daughter's when she's not on steroids.  He has stubby, swollen-looking fingers, "dactyl", I believe they are called.  I know the signs.  I also happen to know that just because the signs are there doesn't mean that we have to worry yet.  My heart did stop when he told me his jaw was clicking and it hurt, but I also knew that it could be "just" TMJ.  I guess we'll find out soon enough...

Emily's doing ok.  Honestly, when people ask me how she is doing, I really never know how to answer.  To me, a good day for her would still be very hard for other people.  It looks to me that her staph infection is gone (thank you, Jesus!).    She developed a cold the week after coming home from the hospital, which turned into something.  I'm pretty sure it's a sinus infection, but the kids were talking and so the doctor just handed me the prescriptions and didn't really say for sure what's wrong.  Any which way, she's feeling better now.  She still has congestion and a bit of a cough, but it's nothing like it was.  Her cough was terrible!  I'm not sure what this means right now, but she pointed out that she has what look like two nodules on her hands.  Usually the nodules only come up when her inflammation isn't controlled, when one of her diseases is active.  She doesn't seem to be actively flaring, so I'm not really sure what to think about that.  I guess we'll find out tomorrow.

And finally, my oldest daughter is sick.  I'm guessing that whatever my little people had that required antibiotics was passed to her.  Sinus infection would make sense for her, too.  She's been miserable.  She's already missed two days of school from last week, and she'll be out at least the next two.  While I would love to take her to the doctor tomorrow, it's a Shands day so I will take her on Tuesday.  Usually when I go with her I don't need a symptom list, but this time we need to make sure that we discuss her bloody noses again.  She's had them for years.  She told me that she has a hard time stopping them, but usually they seem to come in the middle of the night or when I'm not around.  She gets them before school sometimes, but I usually get up after she leaves.  I couldn't believe how bad her nose was tonight.  Not to get graphic or anything but when I passed by the bathroom I saw her leaning over the garbage can.  I thought this was strange until I looked at the sink.  Then I panicked a second.  My sink and counter were filled with blood.  It was like she took a cup of it, poured it in the sink then took a brush and splattered it around.  She told me that she tried to stick a tissue up her nose to stop it but it got like sucked in and started to go down her throat.  Of course, this is my girl that won't take vitamins or medicine unless she feels like she's dying.  To get her to do anything that will help herself is impossible.  However, that just freaked me out!  We shall see what the doctor says on Tuesday.  I'll try to update on Tuesday about how tomorrow goes, too  :)  Maybe I can update quickly on my phone...