Friday, April 8, 2011

Very good appointment!

I apologize for not updating sooner.  My little bout with a sinus infection has become a battle.  I have been feeling kind of like I was hit by a truck.  Since I ache too much to sleep, I shall write  :)

This past month has been a turning point for Emily, so I knew that this appointment would be good.  Before as the steroids were so high and their effects hit her so hard, she had a rough time adjusting.  I can't imagine how she was able to deal with the dosage that she started out with- physically or emotionally.  Back in October she was started on 42mgs.  She had 21mgs in the morning and the other 21 at night.  With this appointment we continued on the taper that we started months ago.  They dropped down to 6mgs this month!  I had expected it would drop to that.  Last month when they had us take her to 12mgs for 2 weeks & then 9mgs for three weeks, they told us they would likely drop her down to 6mgs this month.  They also told us that this is generally around the time that you start to see the steroid weight drop off.  That is huge because it is so uncomfortable.  It is as hard for her to bend over as it is a pregnant lady, and her center of balance is off.  She still has a long way to go but she knew that it was drop off because she can fully open her jaw now!  That was yet another thing that had made her sad, & she has been waiting for the day where she could finally open her mouth again.  Last visit they said that her muscle enzymes were better than they had seen them, and normal for the first time.  This time they were even lower!  That's huge.

They did decide to increase her Remicade for next time for her joints.  Her back has been bothering her enough so that she wanted to get her infusion.  I still expected the usual fear that grips her the day before, that causes a huge crying jag that night and has her silent and terrified the whole way over.  Usually she barely speaks on the way.  This time she was in a really good mood, really ready to go.  She watched "Tangled" on the ride and was even singing along to the songs!  I haven't really heard her sing since September.  I think she knows that right now it's all downhill, so to speak.  I try to hard to keep her educated and in the loop.  She understands that this is what I've been telling her would happen.  She told me the other day that she's really glad that we switched to Shands.  I'm thrilled that she's happy there now, even if she does have a way of yelling at Dr. E every time we see her.  I'm not sure why.  I think that she resents her still from keeping her in the hospital, even though she knows it was for the best.  I'm just happy that I can finally really say that she's doing very well.  She does still have a long way to go, but she's not flaring right now.  I love how she went from never telling anyone that she was hurting to telling me every little ache and pain.  Sometimes it's silly things, but I'll take the silly if she's willing to talk about it.  She's acting more like herself, talking to her brother like he's her best friend again, really trying to tackle school with a new enthusiasm, & she's really excited about Make A Wish.  I am so, so glad that we have that so she has something amazing to look forward to.  I truly believe that has a LOT to do with how happy she's been lately.  At her lowest points it gave her something happy to think about.  What a huge, huge blessing that is.  I know that we have a long, possibly difficult road ahead with her disease.  It could stay like it is, it could turn into full blown Scleroderma or Lupus.  Or it's possible it could go into remission.  We have to keep a vigilant eye out for signs of pulminary hypertension & other systemic signs, but right this minute she's the best she's been in a while.

There are many other children out there with arthritis that are not doing so well.  Little GS has so many struggles with his vision.  They actually had to put a drain in his eye.  His family has been fighting for his vision for years.  DSW has had more pain from arthritis that they can't control that she uses her wheelchair now way more than she should have to, but they are stumped.   PL has been trying to be pain-free for three years now, & they still don't know how to help him yet.  H&J are still looking for the meds that will help them, too.  These are just the kids in our state.  There are too many kids suffering silently.  These brave little heroes need a cure.

1 comment:

  1. Dee,
    I wanted to share this article with you. Lupus connection to pesticides.
    What are your thoughts?