Sunday, March 25, 2012

March has been a blur!

I have been in a bit of a funk, and feeling overwhelmed by Facebook and bad news.  I've been rather antisocial lately.  I can't believe it's been more than 3 weeks since I posted.  The time has been flying by.  I am typing from a hotel as we await morning for our monthly hospital visit.  Emily will be having her first 8-hour  IViG treatment since the one that they messed up in November.  I'm a little nervous about doing a faster one, but our doc has assured us that this is a lower dose and the infusion room nurses don't make the same mistakes that they do on a ward like where we were staying then.  Still, I'm a bit nervous, but more than anything we just want it to kick in and start helping her immune system stabilize.

She is still on 1.25mls of Prednisone.  We attempted the taper when we were supposed to, but a few days later her thighs hurt.  Kevin thought that perhaps it was all of the running around at a birthday party that they had been at, but Emily said that it felt like a flare.  She was also sleeping a little more than normal, so we went back to her old dose, to the 1.5mls.  I was worried.   As terrible and disabling as RA & JA are, Dermatomyositis (& Polymositis) are worse.  The thought of that returning is something I can't think about.  I was very, very thankful when a friend (thank you again RHT!) told me about a plan that someone else was using to help taper.  She's been back on 1.25mls for about a week and so far seems to be handling it ok now.

The other issue is still that stupid sinus infection.  UGH!  I am so beyond over it!  She had her 21 days of Augmentin, though missing a dose or 2 cuz' the pharmacist didn't mix it, and I'm certain that I messed the first bottle up.  She had about 2 days off of it when she started coughing up green again.  She had stopped coughing only a week or so before, so we noticed it right away when the cough came back.  Very frustrating.  She's back on another ten day course, and the ID doc is going to pop by to look at her tomorrow.  She still looks pale and sick, but she says she's feeling better and she's acting ok.

Zach is doing all right.  He turned 9 on Saturday!  He gave himself a skinned knee and elbow for his present.  Not so much fun!  Before that he had a day or two where his knee was hurting.  His hands look a little weirder to me every day and he's still getting headaches on the sides of his head.  I'm praying that it's just a coincidence and not a failure of his Enbrel.  Enbrel has done wonders for his psoriasis.  He's almost 100% clear!  Overall he's doing well.  He's going on a field trip with school tomorrow to LegoLand!!!  I wish that I could go, but.... I'm needed here.  I sure never thought that this is how my life would turn out but it is amazing how my heart melts for my kiddos!  Poor Ash is home today not feeling that great.  I hope that she's not sick.  I wish I could be there for her today, too.  Even though she's almost an adult.  How crazy that it!  Anyway, we have to be up early.  I'm grateful we don't have to be up at 4 A.M. to drive here though!!!  That is NOT easy for us.  I'll try to post tomorrow if I have time and don't get sucked into hospital time.  Take care, ya'll!

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