Monday, October 11, 2010

Today's infusion went so well!

It is a relief, but also a little sad, when your child barely even flinches when the needles come out.  Em didn't even shed a tear today for her infusion!  We were so proud.  I never thought I would see this day come.  The nurses ask things like "Any weakness?"  We explained that there was a new diagnosis, though it's not like there have been ANY tests to prove & make 100% sure that she has dermatomyositis.  The nurse then asks what we were doing about it.  She was also shocked when we said that our doc ordered no tests, passed us off to her pedi & refused to treat it.  Today her eyelids looked normal, but we could see a bit of the rash on her hands now.  It is getting harder for her to brush her hair; the muscle weakness seems to be coming out.  In general, she's very tired today but she's feeling much, much better.  It's so nice to see her walking and moving around the house again.  By tomorrow she should be running in circles again.  Boy, that is so wonderful to think about.  It's been a long week.  I can't wait until Wednesday to see what the new doctor's say, & if they will find out some of these diagnosis for certain.  I'd like to have the scientific proof that there are really so many diseases and it's not just one.  In some ways I suppose it doesn't matter so much, but it matters to me.

I have had so many people reassure us that we're doing the right thing by switching rheumy's.  These children have some amazing and wonderful parents!  It's so nice, the level of support that we have through each other.  I wish that I had found these people around August 2007 when we made our first rheumy appointment.  We couldn't get in until January 2008.  I felt alone, like no one could understand.  When you say your child has arthritis, often people say things like, "Well, at least it's nothing serious!"  Yeah, ok.   Just because Emily has arthritis doesn't mean that it's less serious than other things.  Thankfully, she doesn't have the systemic type which, if not properly treated, can be terminal.  People often forget that this disease means that she will have it for the rest of her life.  That means that there may be many, many weeks through her life that she is wheelchair or couch bound.  She will live her life being in pain every day.  Yeah, that's nothing serious.  (As long as it's not your child or yourself, anyway.)    This is her life- filled with doctor visits, being poked with needles, and having a bunch of medications to take every day.  Not knowing if she'll be able to get through today or walk tomorrow.

I follow several blogs.  One blog is  I read her last post last night.  Her 12 year old is having her second hip replacement next month.  How sad!!!  Harder yet is that her little one told her that it's time to go visit the surgeon again, time to do the other hip.    These children are wise; they know things that a lot of adults couldn't know, or handle knowing.  They are little heroes.

Another little hero is a girl that I met at our JA Conference.  I honestly thought she was younger than she is, but the children with health issues tend to be smaller.  She has her own awareness page on Facebook, and she is making awareness videos.  So many kids try to turn away from their diagnosis, try to stay "normal" instead of embracing their differences and educating people about them.  This one breaks the mold by telling everyone that she meets what she is up against.  (My little one will tell people about her arthritis, and what meds she's on, but so far that's it.  She's a few years younger than Mia, though.)  I learned a few things from this.  As I've said before, I truly believe that my child has Lupus, but her actual diagnoses are everything else that this girl lists.  So far, Em is only on Orencia & Motrin.  Mia is on a LOT of other meds to try to keep control.  So is every other child that I've heard of with the same issues.  (Another sign that it's time to move on!)  She is very matter-of-fact.  We need more people like this rooting for our kids!

The last thing to note is that 2 of our "Arthritis Families" here in my state did a ride to benefit our Camp Boggy Creek!  That is the camp that Emily attended twice now because the Arthritis Foundation also helps them.  The have medical staff on duty at all times, and can even do lab work on their grounds.  Doctor's and nurses volunteer their time to help these needy children.  There were a ton of bikers that rode to support them.  I am so thankful!!!  Thank you, Heidi & Tiffany, for riding for our children!  That is sooo cool!!!

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