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!

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