Friday, September 26, 2014

Socialization Is Not a Problem Here

Umm.. so this week happened.  I really didn't have high hopes for the week because I can read my calendar, but still I'm always shocked when we have a busy week and we aren't as productive in school as I'd like.

This week included Amber's regular allergy shot, which takes up more time than you'd think, plus dealing with Amber having non-allergic rhinitis all week.  We now own stock in Kleenex, or we should.  But allergy shot day was our only completely productive day, and that's just sad.

Then there was a homeschool group field trip to a local-ish apple orchard for a hay ride, apple picking, bee keeping lesson and fun.  Of course the kids all played on the "playground" at the farm after our tour.  Local-ish means that we all pretend it is close and it's in our county still, I think, but it took 45 minutes to get there.
Apple Picking and Hay Ride
Then we had an unexpected recovery day for Amber because the playing after the formal portion of the field trip caused some issues.  That child thwarts my every attempt to keep her from having episodes with her heart.  "But I was having fun and I wanted to ...." fill in the blank.  It's usually run, climb, stand around in the sun, etc.

However, the apple picking field trip was an overall bonus because Amber made a new friend in our homeschool group.  The new friend doesn't participate in the co-op classes, but will be at many of the other sponsored activities.  I'm just so thrilled to see Amber happy with kids her age again and not terrified that everyone will reject her (I personally still have issues to deal with from the last parochial school too).

Sadly, recovery day was also flute lesson day and confirmation class, so it was not as calm as one would hope.  That's going to be a theme this week.

(Left) Co-op outfit this week.  That is an American Girl Beforever Caroline inspired top. Amber has always loved American Girl clothes.
(Right) Cuddly cats.. sorta.  Biscotti (top) was unusually cuddly. Rosetta (bottom) who is usually cuddly was giving me an evil glare for taking the picture.

Homeschool co-op class day is always a long day that will be even longer for a while because Fred and I have our foster/adoptive parent class that evening.  Amber goes straight from co-op to my mom's house and waits for me to pick her up after what should be her bedtime.  So, as expected she was pretty much dead to the world this morning, which should have been a recovery day.  But again, she had only a recovery morning.

This afternoon was the homeschool group's Teen min-golf activity.  Of course Amber won't miss that because she loves all her friends and, well, I'm one of the teen group organizers and this was my activity.   Amber is still sniffling and it was warmer than predicted.   I tried to encourage Amber to stay in the shade and sit when possible.  That didn't happen until she was already past the point of no return and had pushed her heart too far.  By then she felt awful and wanted to go home, but guess what?  I was the organizer and needed to stay until all the kiddos had been retrieved.  Now Amber is a bit of a worn out mess that is resting and pretending that she will have energy for her busy weekend.

(Left) Mini golf
(Right) Playing Daddy's new game with him.. Daddy is a big Warhammer fan.

Did you know that tomorrow the My Little Pony Equestria Girls: Rainbow Rocks movie is out in limited release?  Yes, well around here that means one single showing on one single day.  Sigh.  I preordered tickets for Amber and her friends (and two sad parents that will be stuck in a theater watching MLP).  Unfortunately, it's a morning showing so Amber doesn't even get a recovery morning tomorrow... or Sunday for that matter.  Not to mention Amber has a friend's birthday party on Sunday afternoon. 

Besides the single productive day, Amber did manage a subject here or there throughout the week, and confirmation class is built in religion time.  But in case you are curious her totals for the week look like this: 3 math lessons, 2 grammar, 2 German, 2 medieval history, 1 science, 1 PE, 1 art (working on the sample project for my co-op class), 1 flute lesson + practice time (hey.. it counts), 1 confirmation class + studying for the test, 4 days of CNN student news, and her co-op classes.

(TOP) We aren't big sports fans, but my sister's family is... can you guess who?
(Bottom-Left) That's not rain.. or snow.  It was the Monarch butterfly migration caught on radar.
(Bottom-Right) For my little Pinkie Pie Fan.
Next week we are very tentatively signed up for an out of town field trip to Hannibal, MO.  I'm pretty sure it won't happen at this point.  Amber needs some dedicated time for core subjects and she probably won't have the energy for it anyway.   She's already disappointed and I'm the big bad mommy. However, parenting a child with chronic illness means that sometimes you have to make decisions that seem unfair to keep your child functioning.  Amber simply does not like giving up so much control over all facets of her life, and I don't blame her. 

Next week we are going lower key and getting this child some rest and hopefully a whole bunch of school work completed too!

Happy Weekend!

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Friday, September 19, 2014

Project Learning

This has been a week of learning through projects and a small amount of book work. Even last year that would have bothered me terribly. But after a change in our entire school style to accommodate Amber's chronic illness, I'm actually mentally okay with this week's progress.  Amber still thinks she needs to be doing more book work, and can't handle when her work isn't perfect. We are working on helping her adjust to the new style and expectations.

Monday was mostly a sick day because Amber had a food reaction to a small of amount of garlic eaten last week. We ended up doing an intestinal cleanse Sunday. Amber's brain was just so slow on Monday. She slept quite late and couldn't get it in gear all day. That was ok. We did some grammar, a little German, and the rest was project work. Oh, and errands (with some fun shopping too).

The child LOVES My Little Pony.  See how many MLP items you can spot this week.  LOL.
(LEFT) MLP top, pants and socks.  This was her co-op day outfit this week.
(RIGHT-TOP) Playing games with Dad... in her MLP hat.
(RIGHT-BOTTOM) Dinner at our favorite McAlister's after co-op.  One exhausted, but happy child.

Wednesday was another non-school day. Amber had her tilt table test which left her not quite as sick as expected, but also didn't go as anticipated. In actuality there was a set of smaller tests scheduled to go with the tilt test. The smaller respiratory tests were a little difficult, but overall were some of the simplest medical tests Amber has completed.

When it came time to do the tilt portion, it was explained that while adults are usual put at a 70 degree angle for 45 minutes, since Amber is a child she would only be in that position 25 minutes. The wonderfully kind technician requested that Amber let her know of any symptoms and tell us how she felt the whole time. If she felt like she couldn't continue the test would stop, but she really needed to go the full time, if possible. 

Any guesses on how long she lasted? Amber was not verbal during most of the test. She answered questions but did not offer any feedback spontaneously. At the 7 minute mark the technician abruptly told us it was complete. Amber's vitals indicated she was about to lose consciousness.  Her heart rate, which had elevated 40 points immediately after Amber was raised, started soaring even higher her and blood pressure was bottoming out.  The graph from the data stream was quite startling. Even though it was a short test, they do have quite enough data. Her POTS was already diagnosed, but if there was any question about it the test confirmed she has severe POTS (dysautonomia). The next step is to get the blood test for the rare autoimmune disease that is a possible cause of Amber's POTS.

(LEFT) During her 7 minutes tilted.
(TOP-RIGHT) Reading her Bible study assignment for the next day.  Appropriate for on her way to the tilt test.
(BOTTOM-RIGHT) Waiting for the test with her beloved "Spooky".  He's an older Halloween Webkinz.

So Wednesday was a day off from formal school, but we learned a lot more about POTS during the testing.  Amber did have confirmation class that evening too. She was exhausted, but made it through and passed her weekly test. Wouldn't you know that the assignment and memory work for this week are significantly easier.

For our project learning this week, Amber worked on making a Viking longship.  It was a fun evening project, because mornings have been pretty awful this week. Amber told me all about the different parts of the ships and how the Vikings used their longships to raid.  She did also write a summary of the Viking religion, however that was an easy assignment since she is quite interested in Viking mythology. It was a well written piece and I can see how Writing With Skill, even though it is still unfinished, helped her writing. We are aiming to complete WWS, but in our own time. We probably will not go on to level two and instead use the writing aids from Tapestry of Grace.

Working on her Viking Longship!

Amber again helped with the project for my co-op 50 states class. I am using the same curriculum I used with Amber immediately after removing her from parochial school.  Except we never did the projects at home. Now Amber gets to finally make the projects from her states study 3 years ago. This week it was a skipjack boat.  Amber had no idea what it was so she got a quick lesson before creating my sample. 

There has been lots of cross stitch projects this week too. Amber finished her first one and started another, while I finished a small bead cat project and started a bead Christmas angel. I'm still ecstatic that Amber is enjoying needlework more.

(TOP) Working on the Skipjack boat for my co-op class
(BOTTOM-LEFT) Finished cross stitch
(BOTTOM-RIGHT) Surveying the goodies in the Frozen art kit.  She did play around with it Wednesday afternoon.
Fred and Amber have been playing a lot of Star Wars: Commander on the iPads and iPhones. This is a new addiction for Amber, but Fred had already been playing the very similar Clash of Clans. It was sweet to listen to him explain tactics to Amber and help her make good decisions in designating her base. She loves to attack other players, and has only lost twice!  It's humorous to watch her antics during an attack. She gets a little nervous. 

CNN student news is still a favorite of Amber's and she has even started watching it on my iPhone on the days when we are not home a lot. She finds the host humorous and enjoys being a big kid learning about world events. 

On tap this weekend is more outside maintenance, baking / freezer cooking for Amber, and sorting the remainder of Amber's clothes. She outgrew almost everything we've tried so far.  It means a bigger clothing bill than last year, but that's okay because she grew!

And if you were keeping count... that was 3 MLP shirts, 2 pairs of MLP pants (admittedly I cropped the pics and you can't see the one pair, but hat day went with the other MLP pants), 3 pairs of MLP socks (because if you wear the shirt you gotta wear the socks), 1 MLP hat, and 1 MLP watch.  I think that's it.  Oh.. and the 4th shirt today that's not in any of the pictures.  Sigh.

Happy Weekend!

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Friday, September 12, 2014

Ahh.. Break Week

Woot, Woot... it's been a fantastic break week.  I think this might be our best homeschool schedule yet.  We've tried matching Amber's old parochial school schedule (so that was silly, but we had just abruptly removed her 3 weeks into second semester of 4th grade).  There was four day school weeks, which just cost us a day every week, but we still needed longer breaks throughout the year.  Then we did six weeks on, one week off.  That was mostly successful, however it seemed REALLY long between breaks. 

This year we are trying five weeks on, one week off.  Last year the sixth week was always fairly low energy and seemed endless.  I'm hoping to cut off the poor attitude and performance that last week with a slightly earlier break each session.  However, it does mean that we can take fewer days off when it's not our break.  We need to schedule as many doctors' appointments and special days during our break as possible.

Even though we were on break, Amber had quite a few logged learning hours.  I was able to convince her to complete a little German to stay ahead of my co-op class.  However, I've determined it will really be doing those kids a disservice to go as fast as planned.  I need to just bulk out the single set of books to qualify them for a full year credit of German because they are not going to be able to keep the planned pace with only an hour of class meeting time a week.

(top-left) playing American Girl dolls while watching Netflix on her iPad.  (top-right) Reading a new book Daddy bought her during a Dad / Amber trip to the bookstore. (bottom-left) A new light-up MLP watch.  (bottom-right) It got down right cold here, but we still managed a trip to the Disney store.

Amber loved her co-op classes last week and this week.  She actually had homework in chess class.  There's a couple of books for the class and assignments.  I'm impressed with it so far and Amber adores it.  The Teen Bible study that Amber started in co-op this week also has optional homework and tests for those wanting to turn it into high school credit (1/2 credit).   Honestly, Amber doesn't need that yet, being in 7th grade, and has quite a bit of homework in confirmation already.  Therein lies a point of contention between me and Amber.  She doesn't really want to do the homework, but most of the other kids say they are going to do it.   I told Amber she doesn't really have time because her confirmation and other studies take up quite a bit of her functional time.  Amber is positive she can't participate correctly if she doesn't complete the extensive homework.  Remember they are trying to beef up a one hour weekly (28 weeks) class to earn 1/2 credit = 65 hours.  Aghhh!

There are other confirmation students in the class too, so I'm curious to see if they actually do the work or not.  The confirmation assignment this week is fairly extensive too.  They are quizzed at the beginning of each class over the previous assignment. Failed quizzes must be retaken privately until they are passed.  I'd rather Amber devote her time to confirmation homework than the co-op Teen Bible study optional homework. 

Amber also, finally, learned how to cross stitch this week.  I had taught her a while back, but she didn't take to it and really didn't enjoy it or even finish her basic project.  This week she tried a beginner's kit and loved it.  Whew.  I adore cross stitch and so hoped Amber would some day change her mind.  She spent many hours this week resting, watching movies, and cross stitching on her project.

Working on her cross stitch project and (top-left) a visit to the cross stitch store in the historic district.   Amber loves the store, even if it is just to pet the owner's two doggies.  Amber loves animals and they love her.

Amber had a great visit with the dietician this week.  We don't go back for three months!!!  Amber has grown another quarter of an inch and gained 1.5 pounds.  Even though Amber's diet is still so limited, the dietician is pleased with the variety of dishes we are able to give her using those few ingredients and the way we give her as many nutrients as possible from foods instead of vitamins (which she does take too).  The dietician said that even though Amber's diet is strictly limited she eats healthier than the majority of people because there is almost no processed food in Amber's diet.   The dietician even asked for some of my recipes (which are simply altered recipes written by other people).  Still, she wants to be able to provide them to other parents of children like Amber because many people have trouble finding foods their children tolerate.

We had a field trip planned to the St. Louis Art Museum with my mom this week, but that morning Amber work up feeling off and her vitals were not ... good.  Amber was hopelessly disappointed, but I postponed the field trip.  Amber tries so hard to handle everything, so when she voices a sadness or disappointment we know it was quite upsetting for her.   The Art Museum trip was such a situation.  Because Amber was so upset, we decided to still meet my mom for lunch and try a couple of stores in the local historic district that Amber likes.  It was a rough day, but easier than the museum and Amber had a nice time. 

Taking her bp and pulse.  Regular occurrence now.  Two different days this week.  That was not after exercise either.  It was morning.  (top - Friday, bottom- Tuesday)

We have numerous outings and field trips on the schedule with our homeschool group over the next few months too.  I normally would not like to be away from home that much, but Amber desperately needs to feel included right now.  Her condition is making her feel isolated even when she is with a group.  I've signed us for events that I think she can handle and aren't scheduled on busy days for Amber.  The homeschool group has really grown since it started last summer and is an extremely active group for all ages.   There are activities, field trips, get togethers, and co-op classes for pretty much every age and interest.  We are so fortunate to have this great group.

Next week Amber has her tilt table test and we expect that to be a fairly awful day.  The nature of the test is such that she will be ill during the test and for some time afterwards.  It also falls on confirmation day, so I just hope Amber is recovered prior to the evening otherwise she will be scheduling a private makeup class. 

(top-left) Bridge struts for my 50 States class' project.  (top-right) The suspension bridge project for class.  (Bottom-left) Amber working on yarn packets for each child in my class.  She is such a huge help.  She actually made most of my sample bridge and a good deal of the bridge struts.  (Bottom-Right) Amazon came through again; it arrived on release day and we promptly watched it, again.
 I've been extremely proud of Amber this week in how she has started to listen to her body over her desires.  It's terribly difficult to be an exuberant 12 1/2 year old girl, yet be so limited in life.  I am thankful for all of Amber's understanding and supportive friends, especially this week.


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