First post of 2016! Update

I know, it’s been forever since I’ve written.  So long, in fact, that I don’t even consider myself a writer at this point.  I’ve had so much going on outside of the kids’ health that I just fell out of practice.  So, a quick catch up.  I’m kind of excited!

Zach is doing pretty well right now.  They determined that he had a pannus, which is a large pocket of inflammation in his C2, the second vertebrae down in the neck.  The meds he is on have reversed the pannus.  He still has some residual damage that makes it stiff often, but he is doing much better than he was.  Three month’s worth of physical therapy helped him to regain quite a bit of range of motion.  Otherwise, he’s a pretty happy kid!

Emily was thought to be in remission, but now we know she wasn’t.  With her disease, she does not have any characteristics that would point to any joint destruction.  Most people with MCTD don’t have destruction if I remember right from my researching.  She does.  Her jaw is a mess.  We meet with a TMJ doctor this coming Tuesday.  We are anxiously awaiting it.

We have some work to do on her.  One thing that has been driving me crazy about her is that when you suggest she try something new, or that she has tried before, she will tell you, “no thanks.  That doesn’t work.”  That is the response for everything.  I have been trying to figure out how to help her, but it has been out of reach.  I changed my major in school partially so I could better help her, but naturally, it will take years to get where I can help her.  The other problem has been her anxieties.  I have finally realized that they aren’t going to just go away.  In fact, if anything they are getting worse.  We chatted with a med student a couple months ago who told us how he battled terrible anxiety for years, but he eventually overcame it.

I decided that we needed to take the plunge and try psychology again.  Our last psychologist was very sweet and I liked her a lot, but she and Emily never really hit it off.  They didn’t click, and we made almost no progress.  After a year and a half she was still stuck on Emily’s sleep habits.  Well, perhaps the problem is partially with her anxiety, and by addressing that we will make progress.  Our GI doctor suggested we try the psychology department at her hospital.  Even though it is so far away we decided to jump in.  We had her first session yesterday.  Emily was immediately comfortable with her- enough to let me leave the room!  That’s huge! 

The other big things I have been contemplating for a while.  It begins with a visit to her pain management doctor last week.  We have been anxiously awaiting this appointment for a while because Emily decided that she wanted to change her sleep medicine to an anti-anxiety medicine.  She almost didn’t speak up, but fortunately, I did when I saw the opportunity slipping away.  I told Em that this was for her, and if she wanted change then she needed to ask for it.  She cried a little because she was nervous, and I think because she had her hopes up, but it worked.  She will be weaning off of her sleep med and starting Lexapro by next Thursday.  I am really hoping this will help her as much as it has helped others. 

Also, one of our rheumatologists had mentioned that we should ask our pain doctor about her intensive therapy and pain program.  It’s hardcore- an hour of physical therapy, an hour of occupational therapy, and an hour of cognitive behavioral therapy DAILY for 4 or so weeks, along with a family meeting with all of the doctors and therapists weekly.  I wasn’t sure how we could make it work before, but I have decided after watching the video on their site and talking to people that we NEED this.  The cognitive behavioral therapy will help readjust her mindset.  That alone is huge.  I feel this could be life-changing.  We have an evaluation next week for it.  I am hoping we can start the program right away. 

We are watching her digestive system.  They feel she has an unspecified esophageal dysmotility, but we are hoping it is maybe from her previous muscle relaxer.  She was switched to a new one that shouldn’t interfere.  We are hoping that helps.  And that pretty much sums up most of it.  I will try to not write so infrequently. It’s so hard since my Dad passed to even get on Facebook.  There is so much negativity and pain that I just cannot handle right now.  I’m in a good place, but only because I forced myself to be.  Aside from being sick this week, I’m doing pretty well, all things considered.  I could use a long vacation and no bad news for a while, but I know I can’t win them all!