Friday, November 14, 2014

Field Trips and Fun

First off, this has been a much better week, overall. Thankfully.  Given the way our calendar looked, I'm also very pleased with the school work accomplished so far.  I'm still hoping Amber can finish a little more this afternoon. 

This week Amber worked on her weather log every day, including reading the barometer that she and Fred made last weekend.  We've found her homemade barometer to be in agreement with the information from a nearby Weatherbug station.  Amazingly, our cats have not yet decided to eat / demolish the barometer either.  I'm considering purchasing a home weather station for Amber (and me), but I'm also having trouble justifying the cost when there is a large Weatherbug station about a mile from us (not to mention the NWS office is just a few miles away).

Operation Christmas Child boxes; Fred and Amber working on a homemade barometer


Amber also completed three math lessons in Saxon Algebra 1, 4 grammar lessons, 2 science lessons above the weather log work, daily CNN Student News, flute lesson and practice, some art / craft projects, co-op classes, and field trips!!!  We mostly dropped history this week in favor of getting some work done in the other subjects. 

Monday we went on a field trip with the homeschool group to the National Weather Service office that services St. Louis.  We happen to live 12 minutes from this office making it a perfect field trip.  The kids were well behaved and learned a lot about how forecasting works and how weather data is collected.  We also learned that meteorologists greatly dislike forecasting farther out than 1 to 2 days.  After that time frame it is pretty much anybody's guess, but "people want to know so we publish very incorrect forecasts."  The meteorologist doing the presentation did go into why it is so incorrect and how tiny factors or an incorrectly calibrated instrument can entirely change a forecast.   

Tuesday we then met the homeschool group again for a morning performance of the St. Louis Symphony.  I love going to Powell Hall and hearing the symphony.  Amber was over the moon about this field trip and pushed herself to be able to attend.  The performance was titled "Forces of Nature" and was all music inspired by nature, except the last piece.  They also played the main title from Star Wars. 

(Left) Turkey hats! (Top) Creating my co-op class project.  (Middle) Being silly and hiding behind the finished co-op project horse.  (Right) Amber made lunch! It was turkey, sorta.
Directly after the symphony we picked up my mom for lunch, then Amber rested inside with Mom while I winterized the rose gardens at my mom's house.  Winter came to our portion of Missouri overnight on Monday and it was quite an abrupt change and I'm still playing catchup with the plants at my house and my mom's.  It was an enjoyable afternoon working outside though. 

Wednesday we had our November Mom and Amber day to recover from Tuesday. Amber and I played pin-the-tail on the turkey (drawn by Amber), made turkey hats, played the LEGO Movie game (that we had forgotten was not finished), made dinner, and went to flute lesson. 

Besides the great time we had on our field trips this week they resulted in additional decisions.  Amber has been doing a lot of thinking lately about what topic she might be interested in studying in college.  We told her it wasn't something that she needed to decide anytime soon, but that knowing if she was going into science, music, languages, or another type of topic might be helpful in high school.  Amber has so many interests that she could never make a decision.   However, lately she's also been considering what kind of jobs she could do if her Dysautonomia does not improve (or even worsens).

Amber had already told me a month or so ago that she thought her main interest was lying in Earth Science of some type. After our field trip on Monday she has decided, for now, that she would like to go into meteorology or atmospheric science.  It meets the criteria of jobs that Amber can do with Dysautonomia and she is fascinated by it.   I can't really say I'm shocked.  I didn't tell Amber until after she made her announcement, but I intended to go into atmospheric science until I found astrophysics. 

I did some research for Amber on meteorology / atmospheric science degrees and found only one university in the whole St. Louis area that offers it as degree program.  Of course this university is not one of the most homeschool friendly either and it's a private university.  Realistically, unless Amber grows out of the dysautonomia before college, she won't be able to go away to school.  She has so many dietary restrictions, and dorm life is not something she can survive.  Mizzou does offer atmospheric science degrees and Amber would be able to live with my sister if attending there, so that is our backup right now. I'm just hoping that another university in St. Louis opens up a full degree program in meteorology within the next five years or that SLU makes it easier on homeschooled students.


Sewing time.  I made Amber's Mary costume, a pair of simply fleece pants (Frozen fleece) and a Frozen fleece blanket.  She was freezing one day and wore the blanket everywhere.  It was not cold in our house though. 


Amber was also so entirely enamored with the symphony.  She immediately started asking when we could return, and could it possibly be the Christmas show.  Of course, we rarely deny her anything of this nature so we are attending one of the Christmas shows now too.  Then, for good measure we also purchased, as a Christmas gift for Amber, tickets to a five show set.  It looks like I'll be driving into the city a lot in the next few months. 

Amber then came out of her flute lesson on Wednesday with a list of competencies needed to pass the audition for our county's intermediate youth symphony.  Apparently, this is now her goal and according to the flute teacher it is a very realistic goal.  Thankfully, auditions are not until August of 2015, so we have a while to ensure that Amber is ready and for her to be certain this is something she wants to do.

Our adoption training continues and the foster parent classes (STARS) have only one more week!  However, we hit a slight snag with the required adoption class (Spaulding) that follows.  The program we are in decided to not hold the companion adoption class this session and the other programs in our area appear to all be full.  There is possibly one with a couple of openings, but it starts tomorrow and we have not technically finished the foster parent classes and thus cannot start the adoption class yet.  Clearly, this process is not going by our time frame, but God's.   Still, there are several children we have been told who are coming up for adoption and our worker was striving to have us ready for those staffings.  I'm trying not to stress about it and just let it all flow.  The right child and the right time will happen, or it will not.  None of this is in my control.

(Left) Symphony! (Top) Biscotti often forgets he is not a small cat and tries to balance where he cannot.  (Bottom) Sigh. 


Overall Amber has felt better this week, but the sudden onset of winter (or exhaustion, or excitement over the coming snow, or something) threw us a curve last night.  Amber was relaxing before bedtime after a long day of co-op and then the evening with Grandma while her dad and I were at our foster parent classes.  She seemed pretty mellow and there was nothing unusual going on.  Yet when she stood up to get ready for bed her blood pressure dropped dramatically and her heart rate shot up to 172.  It took hours to calm down, she slept poorly and has been puny today with a headache and mood swings.  I'm hoping there was a specific trigger for this and not just a random dysautonomia "flare", but unfortunately her stomach and intestines appear to be uncooperative too.

Thankfully, next week is a fairly calm week with only one tiny extra item on the calendar and then we are off for Thanksgiving week!  It's not quite time for our regular break, but Fred will be off most of Thanksgiving week, we have plans for several of the days and I'm fairly sure Amber will be sick from holiday anticipation.

Happy Weekend (and stay warm)!

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Wednesday, November 12, 2014

Autumn Memories

Yesterday the temperatures here dipped drastically, with no promise of it warming above 40 degrees in the near future.  The skies were gray and the wind brisk.  The trees have long lost most of their leaves and the remains on the ground are brittle and brown.  The pretty part of Autumn has mostly departed our area. However, for me it was an amazing day full of happy memories. 

Amber and I stopped by my mom's house after a morning field trip to the symphony, which in itself was full of lovely memories.  But the true happiness came in working outside in my mom's yard.  My mother still lives in the house where we moved when I was six years old and she still has her lovely rose garden.  Unfortunately, this year she fell and is unable to winterize her own plants.


While outside working to trim back all the plants and cover them for winter I was struck with amazing memories of playing in that same yard in that same type of Autumn weather.  My sister and I played outside anytime we could, even if it meant wearing winter coats while swinging.  We would sing "Over the River and Through the Woods" repeatedly, because the elementary school music teacher made us all sing it every year at Thanksgiving time.  We watched our reflections in the patio door and jumped out of the swings to see who could land the farthest away.  We didn't have a care in the world above getting in one more swing before Mom called us in for dinner.

The silver swing set with our beloved monkey bars is, of course, long gone, yet I remember exactly where it sat and even imagine there are still dead spots in the grass from our feet.  Even though the glass is new, I still see the reflections of our hooded figures flying through the air.  And while it's been decades, the leaves crunch the same as they did all those years ago. 


So while warm and sunny Fall days with the trees dressed in their multicolored leaves are enjoyable, I still love the warm fuzzy memories of those dreary and cold November days from childhood. 


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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