Friday, November 7, 2014

With the Good Comes the ...

The biggest news this week is that Amber's blood draw for the G-AchR antibody test was completed!!  The time frame for results is unknown, possibly 8 weeks.  At least the blood was finally drawn and shipped off to the Vernino Lab, home of Dr. Stephen Vernino who is considered the world's leading expert in Autoimmune Autonomic Ganglionopathy (AAG).  

Amber will see her neuroscience doctor again in December and we are really hoping that there are results by then, but we aren't holding our breath either.  It won't have been 8 weeks by the appointment time.  I'm not sure what kind of results to hope for at this point.  If it comes back positive there are some additional symptom treatments that might be possible.  However, we have learned that a good 50% of people with AAG have negative results on the G-AchR antibody test because, in their case, it is a different antibody damaging the ganglia while still being AAG.  Confused yet?  I'm seriously worried the test will be negative, but they will diagnose AAG without blood test confirmation.  That will be an insurance nightmare.

(Top-left) On our way for the blood test!  (Top-right) Working on her creative writing story in the waiting room.  (Bottom-right) The blood test finally happening! (Bottom-left)  It's not a misspelling of "tacky", it's short for tachycardia. Dysautonomia humor. :)


We had such high hopes for school this week, but honestly it was pretty much a wash.  At least most of the hours earned were core hours.  On Sunday we decided to forgo history this week in favor of other subjects, since history has been the easiest subject to complete this year.  That might not have been the best decision.  Including today, Amber completed: 1 grammar lesson, 2.5 math lessons, 1 German lesson, 2 creative writing sessions, her flute lesson and a few practices, daily weather log, daily CNN student news, and 2 history lessons (because she asked).  Amber also went to her co-op classes. 

Monday we were supposed to have a homeschool group teen scavenger hunt at a local mall with me as the organizer. However that morning most of my adult chaperones called / texted to say they couldn't make it while most of their kids still could.  I was left with a ton of teenagers and two viable chaperones.  That was not happening.  We rescheduled the event, to Amber's chagrin.  Most of the parents in our group were understanding and appreciative that I would not hold the event without sufficient adults.  A few parents were put out, but not enough to volunteer. My tolerance for those kinds of parents, it turns out, is zero.  

Unfortunately Amber had been looking forward to the scavenger hunt for weeks and the reschedule triggered a SPD reaction in Amber.  She could not handle the schedule change; she even verbalized how difficult it was for her.  It still didn't alter the fact that she basically had a meltdown, without the screaming.  But life can't be that simply here.  The anxiety and frustration from Monday caused another dysautonomia flare because Amber's body doesn't handle anxiety, at all.

Pinkie Pie and Big Macintosh (Fred) on Halloween
Of course Tuesday morning was the long awaited blood test, which did not help with the anxiety.  Amber desperately wanted to be given school assignments Tuesday morning.  It was almost another meltdown situation.  My saving grace was that Monday evening Amber had confessed to deleting, during her meltdown, a fantasy story she was writing.  She was quite upset over it, but also didn't think the story had been very good.  Having never read it, I couldn't speak to that aspect, however the story line she described was interesting.  I suggested that perhaps her school work on Tuesday could be to outline and work on her story again in a more organized fashion. 

This was probably the best decision I made all week.  Amber was able to recreate some of what she lost, feel that she was still completing school hours, yet it was not overly taxing to her body or brain.  Whew. Crisis averted for one more day.

By Wednesday, I had just given up and didn't even try to give school work.  Amber went to her flute lesson, but she was having trouble reading music.  Seriously?  The child started piano at age 5.  She reads music about as well as she reads English.  I'm hoping that it was a momentary blip, since she loves music.  It is her great joy in life still.  Actually, our homeschool co-op will be having an orchestra next semester and if the times match up Amber will be joining the orchestra (they are including band instruments). 

2014 Thankfulness Tree.   Fred even included a bird's nest and little critter.   Amber also made fall paper chains to decorate around our school area and her room.  It's quite festive here.


Our adoption licensing worker also visited on Wednesday for one of the regular visits to receive an update on our classes.  We are almost done with the foster parent classes and they expect our adoptive parent license to be finalized in January.  Yippie!  While the worker was discussing various topics with Fred and me, Amber colored pages from her Book of Kells coloring book as a precursor to an illumination project for history.  Unexpected school hours!

We also spent some time this week helping my mom.  She fell in her house a few weeks ago and pulled a leg muscle, she thought.  Then, last week she made it worse while putting on socks and could not even hardly walk.  My sister picked Mom up last weekend and kept her for a few days while also taking her to an orthopedic specialist she trusts.  Thankfully, my mom's hip was not broken as everyone feared.  It's bruised badly and the muscle pulled.  However, in a surprise finding the shoulder she banged on the way down during the original fall was broken.  Just a chip off the shoulder actually, and it's healing well, so no further action is needed now.  Still, my mom can't walk without a cane or walker and her arm is gimpy.  She should not leave her house alone for a while.   So, we've been in to see / help my mom 3 of 5 days this week. 

(Top-left) "Bed school" is still successful, when we use it. (Top-right) Lunch with Grandma is always a happy time, even if it is plain, boring food. (Bottom-right) Book of Kells coloring (Bottom-left) Reading with her new stuffies.

Just so you don't think the entire week was gloom and doom: we did get some happy and exciting news this week, but I'm not sure if I can say anything here about it yet.  You'll definitely be hearing about it in the very near future.  We also did a little shopping at the upscale outlet mall even though it was raining.  It was kinda fun to walk from store to store with our big umbrellas.  I picked up another pair of my favorite jeans and Amber got a stuffed Christmas Stitch (we love him) and the Christmas Olaf that she has been drooling over. 

This coming week we have two field trips scheduled plus all of our regular activities.  I imagine it will be another low bookwork week.  Still, field trips count for school hours and might be just what Amber needs right now. 

Happy Weekend!

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4 comments:

  1. I can't stress enough the lessons learned just by life. You are doing a marvelous job finding a decent balance. Amber is learning and you are reading her needs well.
    Blessings, Dawn

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  2. I agree with Dawn - With some much going on with Amber health-wise, I'm surprised at the level of work she still does every week! Determined young lady!

    I feel the same way about parents who don't help out, but complain or are "put out". We're all busy, but putting in an hour for your kids is important.

    I hope your mom heals quickly!

    What's your exciting news?!?! LOL

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  3. Amber looks so pretty for her appointment! I'll bet you're glad that blood test is finally over and done with! I'm not sure how to pray about the results! Well, I guess we'll just have to trust that God knows what He's doing on that one! Sorry about your mom. I hope she heals up quickly. Now you've got my curiosity up about your news! I'm hoping it's about a child being available to adopt!

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  4. Christy I am so sorry your week was stressful but I agree with Jessy and Dawn. SO much learning happens just doing life. I LOVE your Thankful tree and I've already told you how much I love all of your costumes. I am hoping and praying this week will be calmer for you and Amber.

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