Friday, October 10, 2014

Rough Times

This has been a rough week, there is no doubt about that.  Amber has been extra tired and felt just entirely off all week.  We had great plans for a very productive week, and while it has resulted in lots of learning, it was definitely not the type we planned.

Monday was almost a normal school day, excepting that Amber was belligerent, smart mouthed and uncooperative.  I left her in Fred's hands after an early (for us) dinner so that I could attend a homeschooling high school information meeting run by our homeschool group.  It was nice to get out, but I came home to a child who, though she had fun playing chess with her dad, was extra clingy and needy. 

Tuesday started off poorly too, but in a different way.  Amber couldn't concentrate, she was confused and generally unable to function properly.  After a couple of subjects I gave up and suggested we run our errands.  This is when I found out that the depression that is associated with dysautonomia had struck again for Amber (see my post on this).  We canceled all our school lessons for Tuesday and just focused on making it a non-stressful day.  Besides, Amber had already demonstrated that her brain was on low power anyway.

(TOP-L) Lunch after church. Grandma went with us this week. (TOP-R) Dinner on the no-good, grumpy tuesday.
(BOTTOM-L) School work with a curious kitty.  Sign number one that there's a problem... she has an inexplicable need to sit on her legs.  Blood circulation problems.  (BOTTOM-R) She even reads in the car... every car trip.

The rest of the week has been better than Tuesday, but not great.  Amber still enjoyed her time at co-op classes Thursday, but was a bit subdued.  She also had school pictures at the co-op on Thursday.  She did not wake with the look of someone who should be having pictures taken.  Sigh.  So... we added a little makeup.  Dark rings under her eyes and pale skin look sickly and not... how she wanted to look.  I think it worked from the previews I've seen. 

Today has been a gloomy day all around.  It's rained for days and Amber went to neuroscience this afternoon.   More on that in a bit.  We did get in a bit of car-schooling today by listening to some of the "audio tours" from Homeschool in the Wood's Project Passport Medieval curriculum.  Amber still adores this, even if the "tour guide" has a strange accent that we find difficult to listen to at times.  We aren't sure if she is trying to create that accent or if she has a different accent that she's masking. At any rate, some words are hard to understand and the overall sound is that of someone really laboring to get the words out.

(TOP-L) Practicing. She has a performance coming up next weekend! (TOP-R) After pictures, waiting for co-op classes.
(BOTTOM-L) Her first salad in over a year! It's still mostly protein, but we did an official lettuce trial. (BOTTOM-R) Waiting after her allergy shot.  Every week...

For the week Amber has managed: 4 math assignments (miraculously), 2 grammar lessons (btw, she doesn't like Analytical Grammar... no matter how few weeks we have to do each year),  3 German lessons (plus helped me plan for my German class at co-op... she wrote their quiz. LOL), 4 history lessons, co-op classes, a few art sessions at home, plus medical learning. 

Today Amber learned more about her medical condition and we've spent a little time looking up new information.  After almost three hours in the neuroscience office, and additional in-office testing, we now have more information and the detailed analysis of Amber's tilt table test.  I almost wish I could go back to this morning and skip the appointment. 

(LEFT) On the way to the doctor in the midst of some torrential rain.
(RIGHT-TOP) Waiting.. and waiting..
(RIGHT-BOTTOM) Celebratory Fries... we survived the neuroscience office, and traffic was horrible, the drive long, the rain heavy and the child starving.
First off, the blood test for the possible autoimmune disease might finally happen. The doctor was so frustrated with his staff and the staff in various locations along the test path that he stopped our appointment to go make calls.  He did it from phone outside our room.  He was quite vocal and used his "I'm a big important doctor at your facility" voice.  He took ownership of the scheduling and hopes to have it going as soon as next week, along with the sweat test that his technician skipped during the tilt table test.  He was defintiely annoyed with all the underlings today.  Once in a while it's good to have a doctor with an attitude.  But seriously, we joked about this before but if the doctor can't make the blood test happen we will be road-tripping to the Mayo clinic as Amber absolutely must have this blood test, soon.  She is very young for all of this and they are becoming more obvious in their concerns.

The title table results are consistent with POTS, mostly.  However they are probably more consistent with AAG (autoimmune autonomic ganglionopathy).  The neuroscience doctor's exact words, in front of Amber, were "She's got an autoimmune disease, I just don't know which."  However, he did not yet change her official diagnosis from Dysautonomia - POTS simply because the blood test is missing.   The paperwork he sent home with us, though, has the details of what he discussed.

(LEFT) Ready for flute lesson. A highlight of the week. (TOP-R) Rowing exercise. Helped her mood a good deal.  (BOTTOM-R) Frozen style art doodling.  She LOVES her Frozen art kit.

It is likely a hybrid disorder as the result of AAG.  The hybrid disorder would be called Dysautonomia - Neurogenic Orthostatic Hyoptension (NOH) with reflex Tachycardia.  I had to look it all up, and then I wished I hadn't.  NOH w/RT is not much different from POTS, excepting that it is rarer and, unless it is a result of AAG (which is not pleasant), is caused by some pretty terrible things. 

And that's been our week.  We have one more school week before another break scheduled full of fun events and doctor visits.  This weekend is supposed to be colder and probably rainy too, which makes it a perfect time to work on indoor projects.   Our licensing worker for the adoption will be here Monday afternoon for a class review visit and so that we can turn in more paperwork.   I seriously wonder what we are doing and where the strength for an adoption is going to come from on days like today. Then I remember all that the kids in foster care have dealt with and that if we lead our life in prayer and as God directs, then we will have the resources and strength for all that comes our way.

Happy Weekend!

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  1. I am so sorry for the scary and hard week. I know how hard it is to find out just how sick your child is or how difficult it will be to find a new lifestyle. I am praying for Amber and your family daily.
    I am totally for adoption through the foster care system. As you know, we have adopted two. But, please keep you eyes wide open as you walk this path. Some of the children need so very much that it is impossible to give them what they need if they aren't only children. Unfortunately, the social workers are more likely to think you all can handle the hardest cases because you are doing such a heroic job with Amber. At least, that was our experience. PRAYING!
    Blessings, Dawn

    1. Dawn, That is probably my biggest concern is that we are seen as capable of more than we are, or more than Amber can take. But the right child will come if we prayerfully consider any options we are given. Thanks for your advice. We really need to hear from people who have done this before.

  2. Christy you just have so much going on and I am so sorry. It sounds like you got some great things done even though you had appointments and Amber didn't feel well. The Medieval Passport sounded good except for the accent thing! I hate to listen to something that we have trouble understanding. I am so sorry and we will continue to pray for her and you all. I hope you get the blood tests done soon and the results will really help. Amber always looks so pretty in her pictures and she is looking so grown up this week for some reason!!! I hope you have a great weekend and find some peaceful days. Hugs friend!

  3. Christy -- I had no idea you were considering adoption. I KNOW that God will give you the resources and the strength if this is His will for your lives... I admire how well you advocate for Amber. God is good, my friend. :-)

    1. Mary, We started back in late February?? We were doing international but the agency had problems and we switched to foster / adoption through our state. We are closer to the end than the starting point!

  4. As always we are praying for Amber and your family. I can certainly relate to looking up information on diseases and how scary they can be. When Philip was first diagnosed I looked up his cancer and it only had a 1% survival rate. It turned out that it was out of date by a couple of years and it was now 20%. Still not good but compared to 1 it gave me hope.

  5. Some weeks...are like this, huh? But she did get some things done and tomorrow is another day! I am also fighting something autoimmune. I have been to several specialists and no one can figure it out. It's frustrating! I'm sure it's especially so when it's your child!

  6. I'm so sorry you had a bad week with some potentially unsettling news. I will definitely be praying for Amber and you too. It sounds like this doctor is a good one to have on your team and will get things moving for you. As for the adoption...if you can handle all that you do already, I'm sure you will be able to handle anything else that comes your way, but I can certainly understand that overwhelmed feeling!