Quick Update

I realize I have not updated anyone; I apologize. I keep waiting for news, something definite that I can share.  I don't have that yet.  I'll give you what I have, which is I essentially more waiting.

The hematologist that we saw at Children's in Seattle called one day between Christmas and the New Year to let us know that Lily's ANA Panel came back positive.  As I understand it, this means that she has antibodies in her blood.  The doctor said a post or ANA panel is indicative of an autoimmune disorder, but more testing would be needed to have any definitive results. There was still some of Lily's blood in the lab, so they used that for the additional tests. I have not heard from her again.  I tried to call today, but the office was closed due to the holiday.  Will call tomorrow.  Also, her prolactin levels have returned to normal and she is not longer lactating. We are all glad for that!  

We had a big family vacation scheduled over winter break.  It had been scheduled for months and while I had been very much looking forward to it, had Jason offered to stay home, I would have.  It's not that I didn't want to go; I was just tired.  We all were.  There had been a bit of a black cloud lurking around us and that made it hard to get too excited about vacation.  On the plus side, the week before we left was a good week for Lily.  She seemed to have a little more energy and wasn't having nearly the number of emotional breakdowns she was having just 2 weeks prior.  I was cautiously hopeful.  On vacation Lily did her best to stay positive, be energetic, and keep it together.  She did very well.  There were a few rough spots, but it was an overall success.  For Lily, a rough spot looks like crying, soaking wet tears for a reason unbeknownst even to her.  She'll just get overwhelmingly sad or tired and go from nothing to streaming tears.  Or, she'll get so physically tired that she won't eat.  Not because she doesn't want to, but because she can't find the energy to make herself lift her fork to her mouth.  Another symptom that she frequently struggles with is a racing heart.  Nothing she does seems to calm it down.  I was so happy to see that these bad moments were diminishing prior to and during vacation.  We had upped her thyroid meds dose, and that seemed to be helping.

Once we returned, her progress kind of slipped.  We saw her exhaustion amp back up and the return of the emotional waves came back as well as her racing heart. Now, two weeks home and she's also caught some bug and is pretty sick. She's tried to go running a few times since being back, and she pushes through it, but complains that it just hurts now.  She seems sad now too, sad in a beaten, worn out way.  I hate to see her like that.  We are all ready for her to feel like herself again, no one more so that her.  I'm not sure if she needs another bump in her meds or something entirely different.  I know that we'd love an answer and better yet, a solution. 

Not much of an update, hopefully I will have more to share soon. 


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