Thursday, January 31, 2013

My dancer

Every day my little girl can dance is a good day. 
A started dancing when she was 3.  She had a short cute bob, a sassy attitude and LOVED to shake her tutu!  She took two years off when we moved, because we couldn't find a studio, but when she started up again, she was reminded of how much she loved it!

This past three years with her arthritis, I have seen days when she could hardly walk.  Days when to watch her climb the stairs to the studio, I just wanted to go to her, pick her up and carry her back to the car.  There have been ankle and knee injections, but this girl, doesn"t care.  She asks again, for another round of steroid injections, because " I want to dance"  This past spring midway through competitions she said to me "Mommy I dont know If I can do this anymore.  I love dance, but my body hates me"  Every "dance mom has it in her head that at one point her daughter will be the Prima Ballerina, knowing full well in the back of her mind, that this is a very RARE thing, and well...  we can have dreams too right?

This evening as I watched her melt down once again, I felt those dreams shatter once again.  A little part of you dies, every time, a drug change happens.  A little part of you prays that the new drug, will be the cure, will take away the pain.  Tonight, she was searching for her leotard, overwhelmed with school, all of the make up work for when she misses, the new infusion of Actemra that will occur on Saturday and the lack of understanding in general of Arthritis.  A has very few days when she feel like it is all too much, but tonight is one of those for her.  She burst into tears, yelled at a couple of her siblings, and was tossing thing around her room.  As a parent these are the things you do NOT want to see your child do as a general rule.  When you have a great kiddo like A though...  moments like these are acceptable.  She obviously needed to apologize to her siblings.  Home should be a safe place to vent right?  Tonight, she said, "Im not sure if I wanna dance anymore"  my hear sinks...  This has been her love her whole life.  Yes, I taught her to love it by starting her so young...  She talks about being on the highschool dance team...  I dont know how much of a reality it is...  But what ever she chooses to do, I will back her 100% because that is what good mommy's and daddy's do.  You love and support your child no matter what is going on in their life.

Tonight when she gets home, we will snuggle for a bit...  away from any windows...  because what 13 1/2 year old wants to be seen snuggling their mom right?  Tomorrow, she may take a "mental health day"  to deal with the up coming stress of her first Actemra infusion, and she will be my sweet girl.  The girl who no matter what kind of pain she is in will, laugh, joke, listen to One Direction, tell her friends she hates her moms music, and belt it out in the car...  and be the amazing person i have blessed enough to be the mother to!

Thursday, January 24, 2013

TB- Tuberculosis

So It has been a while since I have updated.  I forget to update...  :o)  We are just about to the three year mark on A's first flare!  It is sincerely amazing to me how quickly the time has gone!  We are also coming up on the two year mark for our son J.  It is crazy to think we have been on this journey so long already!

Well, since it has been a while, I will let you know what is new.

Back the End of November we had some standard labs run for meds on A & J.    One of the annual tests is a test for TB (Tuberculosis) You can have the skin test or the lab test, which is called a QuantiFERON-TB Gold.  It can be drawn at the same times as other labs.  This test is also done if you test positive when you are given the wheal.

We had the QFTB test done, because J needed to have some other labs drawn because of his Enbrel.  His test came back positive, so we had to have more testing done and meet with a TB doc.  His final diagnosis came back as Latent TB.  This basically means that although he tested positive, he isn't and never has been contagious.  He was just exposed to it at some point.   We originally thought he would be on an antibiotic for nine months, but now, it will be four because of the medication he is currently taking called Rifampin.  It requires that you take 120 doses to cure any TB virus in the body and when it is finished as long as you took the medicine correctly you have the same chance as anyone else of contracting TB.  Which here in the United States, is fairly uncommon (according to the doctor.)

We had to have the entire family tested for TB, just to make sure one of us wasn't the carrier.  All of us were negative.  I keep thinking...  well, at least we caught it early and it never went "active"   So even though it is a crazy cruddy thing to deal with, Im so thankful for modern medicine! :o)