Monday, January 28, 2013

Little update

Our little roller coaster is rollin' along.  We went for Emily's first round of Actemra on Thursday.  She says that she doesn't really feel a difference yet, but I think that she is moving better.  We got our hopes up because I found an article that stated many kids can feel the Actemra working within a few hours.  I thought for sure that Em would be one of those kids;  usually if a medicine is going to work for her, she feels it almost immediately.  I still have high hopes that this will work- it just isn't happening as quickly as I would like.  Her hands and toes have been extremely bad, but her knees, hips, back and wrists have been kicking in as well.  She has been back on Mobic every day.  Hopefully when she goes back in two weeks, that round will help.  Actemra is a bi-weekly infusion, which is a pain, but if it works....

Last time, they had ordered labs, then later in the evening they ordered more labs.  I had seen the report from the first set, but I had not seen the report from the last set.  Not only were her inflammation counts down, her muscle enzymes were low.  For a child with Dermatomyositis that had muscle pain and active rash when those labs were drawn, a low Aldolase is weird.  I'm not arguing, mind you.  They took it twice that day.  The first time it was 4.9; the second time is was 3.2.  I still have things to research here, as soon as I can find some time.  They ran another Scleroderma panel.  Something like 62% of people with Scleroderma are negative for the antibody, so I'm not very surprised that she has so many symptoms but she's negative.  Hopefully her MCTD won't turn into full-blown Scleroderma.  We can deal much easier with just "features".

We were home on Friday when my son goes limping behind me in the kitchen.  He was trying to slide by without me noticing, but it's hard not to notice him limping.  His knee was swollen and sore.    It was feeling better by the next day, but still... His knees never bothered him before.  I am hoping it was a fluke and not new joint involvement.

And yet, through all of this I think about how happy my family is together.  I think about how we may be if it wasn't for crazy health problems.  Would we be well if we hadn't had mold in the house?  Would we get along at all if Kevin and 2/3 kids weren't sick?  I am pretty sure that I wouldn't have had the confidence in myself to go back to school.  I certainly wouldn't have the same motivation that I have.   We wouldn't be homeschooling, which I think is really cool!  And we probably wouldn't have a cute new furry member of our family.  (Even though he is a bitey little puppy, he's very loved!)  Yeah, Kevin and I have had a few rough years that I don't know how we got through, but overall I am so happy to see him come home every night.  Who would have thought some 19 years after meeting him that I would still love him?  Or even like him?  :)  Yup, he is my rock and an awesome father.  I thank God for him and the kids every day, multiple times.  I would be lost without those 4.

And of course there are always those that have it worse than us... no matter who you are or what you are going through.  I have shared on my Facebook the story of a boy named Cameron.  About a year and a half ago, Cameron began having seizures.  They couldn't get them to stop, or figure out why he was having them. I believe it was 21 days before he was stabilized, but he was left having to relearn many, many things.  There was some permanent brain damage.  He went home and began the long recovery process.  Just as he was about to "graduate" out of physical and occupational therapy, he was hit with another round.  This past Christmas morning, he began to seize violently.  This time, they had a much more difficult time figuring out how to stop his seizures.  He was on quadruple the amounts of medicines than he should be, but what else could they do?  They finally did stop the seizures.  When they went to take him off of the ventilator, his lung collapsed.  They discovered he had an infection, so he is on antibiotics and they re-intubated him.  They are weaning him off of the ventilator.  However, the doctors still have no idea why this has happened.  He has now defied the odds twice, though he's not totally out of the woods this time.  Please pray for this boy- that he recovers, that he retains his fighting spirit, that he does not give up.  Please pray for strength for him as well as his family.  He has a twin brother.  Can you imagine being that brother???  I can't.  Please pray for him and their other siblings.  I believe that boy is still alive because of the awesome power of prayer.

1 comment:

  1. I am so proud to call you my friend. You inspire me so much. Love you and your family dearly.