Friday, October 31, 2014

One of the Good Ones

We've had a great week, even though it had a few ups and downs.  The new schedule where Amber doesn't shower until right before lunch has done wonders for her productivity.  She completed more school this week than any week this school year, and that includes taking off most of today!

Fred has been "working from home" today and yesterday since his company is moving into their brand new building and his office is not accessible.  Tomorrow he does have to go in and make sure everything is put together correctly for his division.  But today we had lunch out together and will all don our My Little Pony themed costumes in a few hours, after pumpkin carving of course.  We are expecting our first hard freeze, tonight of all nights, so it will be ridiculously cold at trick or treating time.  At least Amber won't over heat. 

Amber & Daddy time.  They built a sugar cube castle together. Amber named it Castle Cavity.  It even has a well out back.


As unbelievable as it sounds, Math was back on the acceptable subjects list this week; actually Amber enjoyed math.  It was freaky.  Amber says she was just tired and frustrated that Algebra 1/2 took her so long because of being sick and having brain fog so often. The clean start with Algebra 1 this week gave her hope that she might be able to get through topics. 

Even though our new science curriculum arrived last week we postponed using it in favor of a weather unit which is not included in any Real Science 4 Kids topic. I did convince / cajole Amber into looking at Apologia Physical Science again. This time I had her really read the sample and look at the journal too. She agreed that it didn't look quite as "textbooky" as she originally thought.  So we decided to order and use a couple of modules for our weather study right now and the rest of it for 8th grade.

(Top) Working on a Mardi Gras mask sample for my 50 States class.
(Bottom) Olaf wall clings.  This made Amber ridiculously happy on a very sad day.

This week our weather study has been mostly out of other resources, though Amber did start her weather log for the Apologia module. She tracks almost all the weather stats available each day using weatherbug and her eyes. She also records the forecast for the next day and then notes how accurate the forecast ended up being. In addition to weather observations, Amber also records how she feels and any symptoms that can't be attributed to known events / actions. It is an established fact that barometric pressure and temperature affect the symptoms of people with dysautonomia. We are using our weather log to help pinpoint exactly how it affects Amber. Our hope is that we can eventually predict her some of her "bad days" with the weather forecast. It would greatly help in planning special events too if we knew when Amber was likely to have an episode.

(Left) Morning "bed school", and then afternoon writing with Milori
(Right) Weather log work.  The bottom is a picture I would normally reject, but it is a good representation of how she looks when she's not trying to look peppy for pictures.  She felt pretty awful that afternoon (and depressed the next day).

German lessons have been sailing along nicely. This week we moved into the accusative case for German. I remember struggling greatly with this at Amber's age. I did not have a good early grammar background and have no memory of sentence diagramming until high school.  Yet, for Amber I simply had her help me parse a German sentence which included a sample of the accusative case. She looked at me and said "Oh, it's the direct object. I get it."  And she did. That was the end of the accusative lesson.  Thank you grammar lessons!

In history we've been studying Gutenberg and how his invention affected the rest of history. Amber watched several YouTube videos (silly music video, less silly video) and read various resources. I had a project lined up for her, however she declined and said she felt more bookish this week. That's ok too.

Food!  (Top-left) At lunch today.  Grilled chicken with bacon & salad (lettuce, parmesan cheese, & egg).  Almost normal looking! (Top-right) Waiting for lunch at the mall diner.  They have a dedicated french fry fryer and fresh burgers (no seasoning)! (Bottom-left) Carpet picnic - canteloupe (100 g only), orange bell pepper, cheese slices, yogurt bread with cream cheese, gatorade (not G2) with miralax.  (Bottom-right) Miniature King Cakes for my 50 States co-op class. 


Unbelievably there were no doctor visits this week, which might have helped with the productivity. That means Amber's blood test didn't happen either. But by some miracle (and it literally must be), when I called this morning to badger, umm... ask politely, about the test the technician told me she was just getting ready to call us. We have the AAG antibody blood test scheduled for next week. Not a hopeful maybe, but an actual appointment. Happy dance!  Of course the results will take forever. Still there is no hope of results if you can't ever get the test started.

Next week is another one of those weeks that doesn't look too bad on paper, but I know Amber will be exhausted by Tuesday afternoon. From there on out she will be running on empty and barely keeping up.  I've already canceled one activity, but the remainder are necessary-ish.

Happy Reformation Day (and Halloween)!

(Left) Halloween day.  With a new hat from Grandma.  It even lights up.  This made Amber so happy that she hasn't taken it off since she got it.  (Right-top) Weekly kitty petting.  She had to make her rounds fast though because she was feeling quite poor.





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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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Friday, October 17, 2014

Permission to Do What You Need

We've come to the end of another 5 week session and were able to end with some strong academics.  It was still a difficult week for Amber's dysautonomia, but we've been working on adjusting her schedule to deal with her low orthostatic blood pressure and reflex tachycardia.

By accident when we were just going with the flow on Monday, we came up with a new plan that's working well, at least on days when she doesn't have co-op or a morning appointment.  Normally Amber showers as soon as she wakes, just like me.  We've never been the "hang around in your pajama" type.  But with Amber's dysautonomia, many mornings it is too hard for her to get out of bed, so she stays there and rests / sleeps.  With the new routine she stays awake when she first wakes up, but instead of attempting her shower I bring breakfast to her bed.  Amber then gets up just enough to make the bed and maybe fetch a fuzzy blanket.  After this she does her morning school lessons from her bed.

It really felt like we were slacking off the first day of this schedule.  Amber still showers and gets ready in time for lunch, but the delayed shower helps her by spreading out the incidents that will cause tachycardia.  She also is able to rest during an extended lunch time and be more productive throughout the day.  Actually, she was more productive this week than in a long time.  We learned that we need to rethink how everything works around here and we do have permission to schedule our lives as needed. 

Working from her bed both before and after a shower.  And some of the work produced.  She also wrote articles and designed advertisements for her Medieval Times newspaper.


I joined a support group for POTS (dysautonomia) on Facebook, but it is actually the electronic extension of the group based out of the neuroscience center where Amber's doctor works.  The group has monthly meetings and other get-togethers.  Unfortunately, we've been unable to make any of the meetings yet, but it's been lovely to talk to people online and know that we aren't alone.  It's so humbling to have these people, who I know are feeling just as awful as Amber, be willing to help guide me through the care of my child.  Amber is younger than most of the other POTS patients, so that means I'm kinda the healthy person in the support group.  However, they are such a wonderful, welcoming and supportive group, even if I'm not the "sick" one. I hope one day we can be like this for others too.

Now for a confession.  We've been struggling with science this year, even though it's Amber's favorite topic of them all: Earth science and astronomy.  Especially the astronomy.   And by struggling, I mean we're lucky to have done more than 5 lessons all school year.  The curriculum is lovely and I still wish, oh so much, that it worked for Amber.  We've used several products from this company, so it's not like this was our first go around. Still Amber is finding the reading to be uninteresting, she hates the assignments with a passion, and thinks the very few experiments are dull.  It is also missing topics that she loves to study about space.  Clearly, this was not the reaction I expected when I purchased the curriculum.  I do have to admit right now we are in the section where there are no experiments because the author expects us to be participating in a science fair (not happening).  I've tried to come up with some of my own experiments, but I don't have the time.  That's why I bought curriculum, to spare me the time.

We gave ourselves permission to jump ship this week and look for a new science curriculum.  I would love to be able to pull something together myself for this topic. However, I did learn from my experience with history this year - where I basically spent months recreating Tapestry of Grace before realizing it already existed.  Also, I don't have that type of time anymore.  I need something more hands on with less emphasis on encyclopedia reading & note taking, more adaptable to Amber's fluctuating energy and abilities, and it MUST not need huge amounts of adjustment from me.

(Top-L) Our little Frozen fanatic in one of her Frozen themed outfits.  I totally forgot to take a picture with the very cool Elsa pants and other Olaf top. (Top-R) She adores chess and tactics. This was working on the homework for her chess class.  (Bottom-L) While the leaves were turning colors we didn't have a lot on the ground, until one day, we did.  (Bottom-R) Dinner with Fred's parents and an early Halloween gift from Amber.  We are sad because later this month they are moving across the state to help other relatives.
I showed Amber samples of the Apologia science I intend for her to use next year and it received an absolute "no" from her.  Apparently it is too "textbooky".  She's really embracing this whole project learning aspect of school.  We then discussed the future of her science lessons as she will be using Apologia in high school, especially since Amber has indicated in the past week a definite desire to go into a science field.  As a compromise we will probably not use Apologia until high school (instead of 8th grade), but Amber has agreed that is will be necessary to move into something different for a high school level of learning.

After half a day of research together we settled on trying a couple of topics from REAL Science 4 Kids, Focus on Middle School.  Amber thinks she will like this and it's adaptable enough.  We can also add in readings from the multitude of science resources that we have already from the other curriculum.  I'm still mourning the loss of Elemental Science, but will try to be positive about the new curriculum.  We ordered both the Geology and Astronomy Focus on Middle School units, however neither cover weather which Amber has been looking forward to studying.  So, now I'm trying to put together a middle school worthy weather unit to use while we wait on the new curriculum.

This is especially timely since in early November we have a homeschool group field scheduled for the National Weather Service office in St. Louis.  Actually, it's not in St. Louis, it's in a western municipality about 7 minutes from my house.  If anyone has any ideas for a weather unit, I would be thrilled to hear.  Next week is our break week, so I've got a small buffer to come up with ideas.

Despite the ongoing dysauotnomia flare, Amber has created quite a few history projects this week and written 6 articles for her Medieval Times newspaper.  We both truly love our combination of Tapestry of Grace and Home School in the Woods Project Passport Middle Ages.  We wrote a review of Project Passport Middle Ages this week.   It really does provide a wide array of learning methods.

My Little Pony... er Amber.  It was the October "Amber and Mom" day today.  A trip to Build-A-Bear and the LEGO store, lunch with Grandma and then fun at home. 

Amber has been busy practicing her flute this week too.  Monday evening she did her first ever rehearsal with a choir.  Tomorrow Amber is playing the welcoming music for the creative arts center's King's Faire, and then is accompanying the choir on one of their songs.  Amber was so proud of herself for successfully navigating how to become an accompanist since her experience is as a solo or band player. 

There is also a church confirmation group hayride and bonfire on Sunday.  We want Amber to participate in as many activities as possible with the group, but many are simply not plausible - like the weekend retreat.  However, if I provide her snack for the bonfire and attend as one of the chaperones, the event on Sunday is quite acceptable.  I hope this doesn't wear Amber out too much.

While next week is an official break from school and co-op classes we have a full week scheduled.  Between the two of us there are 4 doctor's appointments (3+1), a homeschool group teen outing, the homeschool group Halloween party, and foster parent classes.  Amber has more testing at neuroscience which will hopefully include her autoimmune anti-body test.  If they haven't worked out the politics to make that test happen by our appointment we will probably begin the process to have Amber seen by the specialist at the Mayo Clinic in order for them to do the blood test.  I'm seriously disappointed in how so many medical groups / companies claim to have the best interest of patients at their core, but still can't manage to get one little girl her very needed blood test.

Happy Weekend!

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