Friday, October 13, 2017

Medical Week, Take 2 (Wk11 - 10th)

We survived! Two weeks of near daily medical appointments and testing are complete, and we do have a few results, while other results will coming. What we have learned is that medical insurance companies require one to go through expensive tests in order to pay for less expensive testing, since they consider the likelihood of needing the less expensive test to be low. Sigh.

On the positive side, I appear to be responding to the Plaquenil in the way hoped. I've still got a distance to go, but some of my blood counts have stopped going the wrong way and have made progress in the correct direction. We can hope this means that my Sjogren's is being... slowed, modified... by the Plaquenil. The neurologist confirmed it is small fiber neuropathy and is treating the pain, but is unsure why it is progressing so fast. Testing is forthcoming.

Biscotti sunning.
And Socks, the feral cat that adopted us, as much as a feral will adopt a family. He apparently has already been TNR (tipped ear). So we provide a safe outdoor kitty house, food (wet and dry) and water. We keep straw bedding in the house and during the winter the heater that goes with the kitty house. In return, he stares at me when I am late with his food and makes me happy to know I'm keeping him safe.

Amber's neuropsych results will not be in for a couple of weeks still, but her gallbladder scan today went better than the last scan - meaning there are actual results. The last gallbladder scan yielded no results at all, because her polyp blocked the duct(s) and the tracer could not enter the gallbladder. Now that the polyp has resolved, the tracer at least went into her gallbladder, and we find out next week at the GI appointment how it all worked.

School This Week:

Amber started out the week with a fantastic attitude, carrying her heavy backpack along to the hospital for my gastric emptying scan. We were there over five hours and, excepting the few minutes she took to eat breakfast and lunch with Fred, she worked on her school lessons the entire time.

Sleepily she dragged her backpack with her again to my neurology appointment the next day, like a dedicated homeschool student. I was referred to Amber's neurologist by my rheumatologist, who did not know it was my daughter's neurologist. The neurologist is extremely skilled and knowledgeable in treating both dysautonomia and small fiber neuropathy, although he is also at the other end of the metro area from us. This means it was roughly a 45 minute drive away, but thankfully Fred had taken off both Monday and Tuesday to help with appointments.

School at the hospital and my radioactive breakfast.
Although it was a simple appointment compared to a gastric emptying scan, we knew from experience that the neurologist is never even close to being on time and the appointments take as long as needed. It is because of that latter statement that we tolerate him being behind schedule; we know he will take as long with us as needed and not rush through appointments. Amber was prepared with her lessons for the day, and accomplished most of them in that waiting room.

By Wednesday both Amber and I were exhausted, yet still had places to go. I dropped Amber at my mom's house on my way to the rheumatologist since that doctor is very close to Mom's. Amber had an enjoyable morning with my mom, and then we all had a nice home-cooked lunch before Amber's flute lesson in the afternoon. That was about all we had energy for on Wednesday.

Taking a break from the stress and medically busy days, on Thursday we had a field trip I arranged for my co-op meteorology class. We are fortunate the St. Louis National Weather Service forecasting office is not only in our county, but just a few minutes from our house. The National Weather Service is very welcoming and conducts free tours for educational groups, including homeschoolers.  Our one hour tour lasted nearly two hours and the kids had a great time learning what all meteorologists do, especially the work of the NWS and how they collect the data needed for their forecasts.  The field trip was Amber's only school on Thursday; she (and Fred) have been experiencing a good deal of EDS related joint pain from the weather changes. Sitting for nearly two hours on Thursday made Amber stiff and achy, and exhausted.

School at the neurologist
Today was Amber's HIDA scan for her gallbladder, and after nearly passing out during the IV insertion, she's been sickly all day. She doesn't handle needles well, and the first IV vein blew immediately. Getting her from sitting to the table to recline was quite an adventure, but eventually she was on the table and a new IV inserted. Although she never passed out and did not get otherwise sick, it was a close call. Amber also felt sickly during the whole process because she doesn't do well with IVs in her.  This afternoon we've been watching The Hobbit: An Unexpected Journey while Amber works on some Christmas crafts. At least we made the pit-stop by the pharmacy on the way home even though we had to forego the planned grocery trip.

For such a great start to school lessons this week, the end has been mostly exhaustion. Amber still has co-op homework to finish this weekend. Although it was a co-op break week, she didn't do her homework last weekend, and thus must spend some of this weekend on homework from a couple of classes.

HIDA Scan and working on her projects
Accomplished Lessons:
  • Over a week's worth of grammar; it is an easy subject to take with us.
  • Two government lessons
  • Two history lessons
  • More than a week's worth of Illuminating Literature: Characters in Crisis; she's already finished the introductory lessons to the curriculum, the beginning lessons for A Jury of Her Peers, and read the short story. Now she's ready on Monday to start working on the questions. We hope to move on to Frankenstein late next week.
  • Flute lesson and practices
  • Meteorology field trip
  • Lots of crafting 
Next week there are a couple of more appointments, and my new dishwasher is being installed. That means I have to stay home for at least one whole day while waiting on the installers. I'm loathe to schedule the additional tests for me, because I simply am tired of leaving the house every day. Honestly, we are just tired overall.

***



The Homeschool Review Crew is now taking applications for the 2018 year. If you maintain an active blog with original content and are interested in reviewing with us, take a look at the requirements and application


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Saturday, October 7, 2017

Medical Break 1 (Wk10 - 10th)

As expected, we didn't have the time or energy for much formal school this week. Monday through Wednesday was Amber's neuropsychology testing. Each day of testing exhausted her mentally and physically, even though she only managed two hours of testing a day. Still that is what everyone involved anticipated. Thankfully, Tuesday and Wednesday went better than Monday's testing where she barely made the two hours and spent the latter part working on some questionnaires instead of the cognitive parts.

We don't have the results yet - only Amber's impressions, which may or may not be close to how the results are interpreted. Although, she really wasn't surprised by how the testing went, so I guess we probably won't be either. Hopefully, we get all the information we need from the testing and be set with any necessary accommodations for a few years.

Lunch on our way to the first day of testing, and one of my projects while I waited.
There wasn't time for any extra activities this except co-op, and it was our last week before fall break. We really need the rest from co-op homework and lesson planning this coming week. Friday we slept very very late in the morning, ran to Target for a long-delayed and rather imperative shopping trip, then a quick stop by the pharmacy - or so Amber thought. At the last second I told her to come in with me for our flu shots. Amber gets so anxious over injections and they often trigger a dysautonomia response, so I decided to not tell her about the flu shot until the last second. It went fairly well, but she did have a dysautonomia mini-flare up. As expected, school was not possible after the shots.

Friday evening was Amber's first yearbook meeting of the school year. All but one of the girls on the yearbook staff at this point are veterans of one or two years. They did lose a couple of girls, but the single new student is a friend of the remaining staff and will fit right in with the group. Amber enjoys working on the yearbook makes it a priority in her assignments.

Basically what we did each exhausted evening: she lounged about and played Horizon Zero Dawn. I crocheted on my king-size afghan with Biscotti.
Next week Amber should have time for a good amount of school work, although I have three days of medical appointments / tests. She's going come for some of the longer appointments with nothing to do except school work. Other days she will stay home with Fred and have regular school days. She does have her gallbladder scan this coming week too, so I expect that will be a lost day for school. Hopefully, we can be more productive next week.

We're also nearing the end of the year for the Homeschool Review Crew and we have one more unanticipated review for which the product arrived on Friday! Amber is absolutely giddy over using Illuminating Literature: Characters in Crisis from Sharon Watson. She has been waiting for this second volume of Illuminating Literature to come out since we first reviewed the Illuminating Literature: When Worlds Collide. You better bet Amber insisted that we review this curriculum when option came up just a week ago. Look for the review in November and maybe a few updates along the way.

So exciting!
And speaking of the Homeschool Review Crew, the 2018 applications will be opening soon. Read the details at the Homeschool Review Crew blog if you are interested in joining the crew.

Happy Rainy (finally!) Weekend!

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Friday, September 29, 2017

Keeping Going (Wk9 - 10th)

Hey, guess what? We had time for school this week. As amazing as that sounds, it felt like a pretty normal week. There were a few hiccups, but for the most part it was a rather productive school week. Hooray for the good guys.

We managed to keep the medical appointments down to just Amber's physical therapy, and that was her first one in four weeks! Amber goes another four weeks before her next PT appointment. After that she may need to return to every two weeks, depending on how her body is reacting to late autumn weather. Here's to hoping she can stay on every four weeks until winter.

Cloud in a jar for meteorology class - it worked at home and in class. Whew.
In other medical news, we got the results of all the testing done last week for Amber and there was really not much of note. Oh, well, her intestines aren't happy, which we knew and thus was the reason we scheduled the GI appointment in the first place. As of right now, we still don't know why her intestines have again decided to stop working correctly. For the past year and a half, maybe close to two years, the intestines have been mostly functioning with the gastroparesis being Amber's main GI complaint. Now, the intestines have overridden the gastroparesis difficulties. I'm afraid Amber will have to go back on the strict low-FODMAP diet with low-to-no fructose. We never officially took her off of the diet, but at the urging of the dietitian relaxed it some (ie, allowed wheat without limit and processed foods... still never fructose or polyols, but I didn't track her daily FODMAP loads). I worry about her food choices now that she is symptomatic again, although it could be a different problem all together. More tests are pending in a couple of weeks.

On Wednesday, Amber practiced her ability to adjust to unforeseen circumstances. Actually, this is something she has been working hard at in OT and not only a sarcastic remark. We had plans for errands, lunch, flute lesson, school, the Ninjago Movie (finally), a slightly late dinner, then packing up for co-op the next day. Except, first off Amber woke up feeling crummy still because of her intestines. She looked pretty sickly too, yet claimed she was good to go for the day despite a slow start. First stop: Lowe's to order my new dishwasher and... we didn't make it there.

My front driver side tire was making a rhythmic thumping before we even got halfway up our street. I parked the car to check and there was a sharp thing sticking out of the tire. Thankfully, the shop where we purchase and service our tires is in the same larger shopping center as Lowe's, conveniently located only a couple miles from home. I limped my car over to the shop to have the tire checked and repaired. The wait time didn't look promising for us to make the flute lesson, but it could be close.

While waiting on my car, we walked to Lowe's and did the whole special ordering and such of my dishwasher. In a few weeks, I'll have a shiny new dishwasher that matches my shiny new refrigerator  we got in May, leaving only the range as an original appliance in our kitchen. Knock on wood that it hangs on for a while longer. The house is only 11 years old!

Waiting on me at Lowe's - with her flute. Then lunch at Bread Co - with her flute. Then I baked... actually baked, GF, Low-FODMAP banana bread. 
Although the weather was cool and cloudy, Amber was exhausted after the walking and shopping. We had lunch at St. Louis Bread Company next to the tire repair, and it looked like we might be still on schedule. However, it wasn't meant to be. The tire wasn't finished until after flute lesson should have started and Amber was sickly exhausted by this point. Even though we had the flute with us the drive to the lesson location would have left only 15 minutes of her 45 minute lesson, so we opted to skip it in favor of resting before the movie. Of course, that also meant no school lessons at home.

It's so frustrating for Amber (and me) that little things like this can trigger a dysautonomia flare. The unexpected schedule change makes her anxious and then the walking, which could have been be a fun cardio experience, put her body over the edge. Hopefully, she will bounce back quickly and not start her winter slide now.

School work for the week:
  • Lots of writing -
    IEW: A whole lesson with video portion and all stages of writing. She even typed the final revision.
    OYAN: Two lessons with additional research for her novel. She is writing a historical adventure and there were a few setting / character details that didn't sound as plausible as she thought. I was right, and she needed to change a couple of things for historical accuracy. Still, she had already done a good deal of research for most of the setting.
  • Languages - Bunches. Greek, German, Latin. She still finds Greek easier than anything. I still struggle with Greek and boggle at her. How can German possibly be more difficult than Greek?
  • Grammar - Just plugging along. Nothing special or noteworthy, except that she did over a week's worth.
  • Literature - Finished the very last of the romantic poets... this time I'm sure. I thought she had finished, but it was a misunderstanding on my part. She had been clear and specific about what she had completed. Now she's finished except for the final writing assignment due in a couple of weeks (it shouldn't take long to write, but our upcoming schedule is so crazy that I'm not sure when she would write it. Thus I've given her an extended deadline). However, we are good to move forward on the next topic while she writes that last assignment.
  • History - Still happily moving forward with our supplemented version of Notgrass Exploring America and she finished Drive Thru History: U.S. History today after physical therapy. So, I need to find more sick day / exhausted day history videos.
  • Government - Another Notgrass that she really enjoys. Still on schedule too.
  • Co-op - Which means lots of fine arts and meteorology, for which she did the homework at home this earlier this week. She also spent time working on her art homework, but I'm not sure that counts as school hours since it's also a beloved hobby. :)
  • Phys Ed - Besides the excessive walking on Wednesday, she's really been keeping up with her daily cardio at home. And a physical therapy session today. PT noted that she's a little weaker in some joints because he had her focus on cardio at home during her 4-weeks. We have another 4-weeks before the next PT session and I hope she's not too weak by then. We are hoping to ease her off of PT next summer. Amazingly, she had no serious dislocations since her last PT session - that is simply unprecedented for Amber.

Writing, and more writing. Oh, and Drive Thru History after PT
This weekend I'm starting the planning phases for a couple of co-op classes next semester. Descriptions and proposals will be requested in October, and I have zero time the first half of October to accomplish that. Hopefully, I can get at least a description of the classes squared away. And grocery shopping, because it didn't happen this week despite having a very long and detailed list.

I had a couple of reviews post this week, if you are interested:

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