Friday, October 24, 2014

Break Week #2 - Way Too Much To Do.

It's been a busy, busy break week here.  Actually, it was too busy and I canceled one of my own appointments in order to let Amber sleep before a fun homeschool teen group outing.

Despite being a break Amber has earned quite a few art hours this week by working on various craft projects to help her relax without using the PS3.  For some reason I had a real aversion to her playing video games this week.  Maybe it was the exhaustion in her face.  Normally, I'm not one to freak out about game time, especially during a break.  We also kept up on current events with the CNN Student news.  I didn't even have to remind Amber about it, she listens to it faithfully every day.

(Left & Top-Middle) Ready for the King's Faire; Playing at the King's Faire
(Bottom-Middle, Top-Right) Confirmation hayride and bonfire.  It was cold!
(Bottom-right) Letting their light shine!
We also completed more of Amber's confirmation homework, which is actually a family assignment.  I think we are just about done with this unit as soon as someone writes up our rough draft sermon reports.  Amber was feeling somewhat better this week compared to earlier in October, despite it being busy and hectic, so we were able to include several cardio workouts. I wish we could have found time for swimming, but that takes so much effort to drive over, be wet, dry off, come home and get ready for the next event. 

(Left) Homeschool teen group outing to the corn maze and farm.  That goat loved Amber.
(Middle-top) After the corn maze.  She felt awful, but said it was worth it.
(Middle-Bottom) A new cheesecake cookie that Amber loves.
(Right) Goofing off.


UPS delivered our new science curriculum on Wednesday and it looks better than I expected.  Whew.  Amber earned some science hours, even though it was break, by reading and working through a weather prediction book during a long drive and subsequent long wait for neuroscience testing.   We then talked a lot about the barometric pressure and looked back at the weather data for the past couple of weeks.  It turns out that Amber's Valsalva Maneuver results were not normal for the baroreflex.  We are still learning about all of this, but it means that the weather barometric pressure will affect Amber's dysautonomia symptoms.  That could explain why early October was so hard for her; the weather was very unstable, while this week it has been quite pleasant.

Amber also does not have complete Anhidrosis (inability to sweat), but much of her body does not sweat at all.  There was really only one site that produced sweat during the test on Thursday.  Unfortunately, the blood draw for AAG still did not happen, however it looks like the politics have been worked out... or forced aside by the doctor, and we won't be taking a trip to the Mayo Clinic. (Whew.. again). The delay seems to now be as simple as a needed lab employee, who has the details for drawing this particular test and shipping it to the research facility, was out on personal leave.  We should, hopefully, be going in next week for the AAG anti-body blood draw. 

(Left) GI doctor;  (Middle-Top) Allergiest. 
(Middle-bottom) Waiting at neuroscience and studying weather. 
(Right) Testing at neuroscience
The GI doctor was pleased with Amber's growth and weight. She's up to 5'2" and loving being almost my height.  The GI doctor is anxious to know the final diagnosis though because if it is AAG then there might be some additional treatments to help with intestinal motility which can't be done without that diagnosis.  The report from neuroscience did concern the GI doctor a little and if a diagnosis of AAG cannot be made, she would like us to have Amber tested for a mitochondrial disease (MNGIE).  There is just too much broken with Amber's autonomic system, especially the digestive system, if it's not AAG.  Let's pray that it is only AAG. Ok?

(Left) On our way to a photo shoot at the orthodontist.  Amber was selected to be part of their promo campaign.
(Middle) Elsa hat!  Thanks Keilee.
(Right) On her way to the homeschool Halloween party - Pinkie Pie!!!
This weekend I must bake and freeze foods for Amber. My backlog is getting ridiculous!  We are also going to rest and prepare for the new school session.  Our next break isn't until the week of Thanksgiving.


Happy Weekend!

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6 comments:

  1. I am glad progress is being made on the needed blood test. I hope you get the answers soon. The rest of the week was great,
    Blessings, Dawn

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  2. It's wonderful that you are able to homeschool Amber. Imagine how things would be with her health and public schooling...You did a lot for a break week! (We'll be having a short break Thanksgiving week too.) Amber is a trooper!

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  3. Poor Amber! It's seems to be just one thing after another for her! I haven't said anything before, but I have been worrying that Amber might have Mitochondrial disease because some of her symptoms do match it. I hope and pray it's not. At least you do finally have some good news about the blood test!

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  4. I was just thinking the same as Jessy. Thank God for home school!
    I really hope you get some definitive answers soon.

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    1. I think that just about every day. :) Actually, just on the number of doctor appointments she would be out more days than allowed. Thankfully, our state is extremely home school friendly. It's a fairly popular schooling option here.

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  5. I LOVE that pic of her dressed up for the Halloween Party! Love the pictures this week! Enjoy next!

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