Thursday, October 18, 2012

Has it really been THAT long???

While I've had much to say, I haven't had time to say it!  We are just so busy.

We went for Em's meds and doctor appointment 2-3 weeks ago.  Even though Zach was seen the month before, I asked the doctor about him  first.  I thought it was fair game since we spent 98% of Zach's appointment talking about Emily.  It appears as though he is breaking through Enbrel.  (Sigh)  I don't want to move to Humira.  I just don't.  I'm pretty sure that is what is going to happen, and if it does they will have to show me how to add Lidocaine to it.  We are currently doing Enbrel 3 times per week and he is still getting little patches, mostly on his scalp.  If that's as bad as it gets.... I can't complain.  Much.

Emily...  I don't know.  The appointment started off badly because, while I was sure that the CellCept was the cause of her headaches, he had never had a patient experience headaches.  Now, this is a drug that is primarily used for people with organ transplants, and that is what all of the data is on.  I researched a LOT.  What I found is that people with kidney issues did not generally have headaches but over half of the heart and liver transplant group did.  He still wasn't convinced.  He was pretty sure that she was possibly suffering from mild brain vasculitis.  He told me to give it two weeks and if the headache increased or did not resolve we would need to have an MRI/MRA run.  We also decided to try 3 CellCept in the morning and one at night instead of 2/2.  That has helped significantly.  We were supposed to change after a week, but we waited two.  So far, so good.  She did have an IViG reaction this time.  Her daily headache shot up to an 8, so it looks like we'll have to go back to overnight stays.  I really did not want to do that.

I'm not sure about the rest of her.  She is eating more than she was before starting CellCept, but she is also choking on her pills more.  Her appetite is better, so for that we are grateful.    I also suspect that Orencia will be going away in a month or two.  I'm hoping I am wrong on that.  It's such an easy medicine.  However, we have noticed more of her little disease rashes popping up, and I don't think that her joints are as controlled as they should be.  She is having more thumb and ankle issues, with the wrist and neck chiming in.  She still complains much less than you would think (except in therapy!).  That leaves me wondering sometimes.  She had a good couple of weeks there where she was constantly in the bath.  Usually that tells me that she is hurting.  Right now she has a sinus infection.  She went to bed just fine but woke up noticeably ill.  Knowing how she is and having family commitments today and tomorrow, we ran to the pediatrician today.  At least we are on it before it becomes huge.  We go back for her next appointment on October 29th.  We shall see what her rheumatologist says then.

Their great-grandmother passed away the other day- Kevin's grandmother.  She was 94.  Her wake is this evening and her funeral is tomorrow.  It certainly wasn't a surprise but it is still sad.  I worry more for her daughter.  She has been Grandma's primary caregiver since 1997 or 1998.  It's been a very long time.  And now she is free!  Rest in peace, Grandma Rosemary.   Oh, and my dad is having surgery on the 27th.  Plus they think he has asbestos "above his lungs".  That is likely mesothelioma, which is NOT good.  I was hoping they would investigate that before doing his artery surgery but no such luck.  Prayers for our family- close and extended- would be greatly appreciated, as always.  <3 p="p">
I promise a happier post on the homeschooling when I can sneak in another few minutes.  We ARE the house of science!  (I love it!!!!!) 

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