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Back to Seattle

In January we saw our local endocrinologist for the first time.  He was lacking in eloquence and was quick to condemn the process that we had taken to get to him, however, he assured us that he was going to get Lily to a good place.  Since seeing him she has been on a consistent does of thyroid meds in hopes of regulating her body and beginning to feel better.  Unfortunately, she's not feeling better.  Her symptoms are exactly the same.  Dr. W ran two sets of tests.  The first included and ANA test which measures whether or not autoantibodies are present. This is the 2nd time this test has been run and for the second time, it is positive.  By itself this does not diagnose anything, but it indicates that further testing is needed.  You can read more about it here.  In any case, his suggestion is that we go back to Seattle Children's.  We have an appointment for a full rheumatology and endocrinology workup on April 25.

The second set of tests should be back tomorrow.  He was tes…

Specialist

Weeks ago, I took Lily to an endocrinologist here in the Tri Cities.  The man left a lot to be desired in regards to bedside manor, however, he promised answers.  He essentially told me that all the steps we had taken in regards to helping Lily thus far were a waste.  He didn't blame us, but rather the other doctor who started us on this journey.  He was frustrated at the multiple changes in meds Lily had undergone in just two months.  Under his care, Lily is starting over.  He took her off all her meds for a week, then started her back on them at a small dose, to be increased over time.  Monday will mark two weeks at the low dose and the start of the higher dosage. In six weeks we will return for all new testing.

The only upside of the lower dosage is that Lily has had less nausea.  She is able to get through her morning without hovering near the bathroom or lying on the couch in a ball.  The downside? She's a mess.  On a daily basis we are talking her off the ledge for the s…

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 sc…

Children's & MRI

Short version: Today's Children's Hospital visit didn't give us answers. We are waiting on labs and a new specialist.  The MRI was clear, and Lily is still lactating (for more on that fun fact, read on...)

About 10 days ago, Lily emerged from her therapists office, shyly.  We are close.  She tells me everything. For her to be shy was unusual.  Turns out, she's been lactating - for about 3 weeks. She didn't know it wasn't normal and was really embarrassed about the whole thing.  During school she'd feel the leakage begin and just hope that it wouldn't show through her shirt.  She talked with her therapist about it - only to discover that, it is not normal for a 15 year old to lactate, unless pregnant or having just given birth. Lily has never even seriously held a boys hand, let alone being pregnant.  Barring divine intervention, this was a new problem.  I called her doctor (and bought the poor girl nursing pads).  A blood test revealed high levels of pr…

Lily

It has been nearly three years since I last had the courage to post.  The original purpose of this blog, to detail our lives as we lived overseas, faded when we returned to the US.  Once home, I couldn't bring myself to post, not with any integrity.  Everything I wrote once home went through a filter of self protection before I published. I worried more about offending or upsetting someone by my post than being honest and sharing, so, I quit.  I focused instead on my schooling, work, etc.  I've missed this blog.  Writing it became therapeutic to me. I've never been to confessional in a church, but I imagine that the way I feel after writing and sharing is much the same as one feels after confessional.  There is an unburdening, a lightness.  I still feel the weight of my words and thoughts, but much less so knowing that they are being carried by many and no longer mine alone. 

I can't honestly say that this post will be the first of many.  It may be the first and only.  …

Parenting is not for the Timid - This is my Biggest and Worst

Parenting brings obstacles and challenges like none that we've ever dealt with before.  My first was when my son was born.  He was the most difficult baby I'd ever come across, and I got to be with him all the time.  I remember how defeated and discouraged I was, and how I thought to myself, "I can't do this.  I can't parent this child, make him happy, stay sane.  I don't even want to".  I didn't know how I was going to get through his infancy and this obstacle felt like the greatest obstacle of my life.

We got through it, I got through it.  Time passed and allowed me to forget the depth of the struggle so that when the next challenge arose, that one felt like a new biggest and worst.  The new challenge was now the thing that was going to end all civilized thought in my head.  Again, we got through.  Time and again, challenges, the biggest and worst, have arisen.  Each time I have thought, "How? What am I supposed to do with this?  Help!  Please…

We've moved!

Many of you already know that Jason and I decided to buy a house in the Tri Cities.  This goes against everything we've been saying since we got here.  Our plan was 2 years, 3 at the most.  The desire to leave the Tri Cities is still very strong, but, it won't be happening.  We had a couple life events that told us that we needed to stay put for a while.  We may still leave, but it won't be for the next few years - probably not until the kids graduate high school.

The home we bought is great for several reasons.  It gives us just enough space to live and not be on top of each other all the time, it is located 3 minutes from the middle school so the Lily can just walk to school and home, and, it was cheap!  Another benefit of this house is that it has 1,000 little projects and fixes I'd like to do, so I'll stay busy (and drive Jason crazy).  It is not our dream home, but it is a good "for now" home.  Can you believe this is the 6th house we've bought? …