Friday, June 26, 2015

Time to Relax

We have been back home from the Mayo Clinic for a week now (well, a week this evening).  Since being home we've been to three more local doctors for updates and follow-ups.  Amber still needs to see the GI doctor again for what looks like at least two more tests.  Silly me, I thought Mayo would be the end of testing for a while. I was wrong.

Amber is now on a new exercise plan that is slightly different than the one the local neurologist had her using. Same purpose, but this protocol is designed more for adolescents. Amber's neurologist is fine with the change, but he didn't agree with all the medication changes suggested by Mayo. He is using the Mayo information as a basis to tweak the medicine support, which is all fine with me. He's the doctor who will be treating Amber for years to come, not Mayo. We need him to do what he feels is best not what the people at Mayo think from a couple of days of tests.

Our hotel in Minnesota with an Amber selfie as we left for home.  Then working on ancient egypt mapping through Iowa (again) and finally being welcomed back home!!

We are trying to get back into our home routine and setting a new pattern with the exercise plan.  It feels like Summer can really start now that the medical trip is not hanging over our head. The weather here has even warmed up to the usual Missouri 90's and high humidity. I will say the weather was so much more pleasant and tolerable in Minnesota. The roads up north are also not closed due to flooding like around where we live. It took us an extra hour to get home from Minnesota last week due to flooded highways. Unfortunately, we were only 20 minutes from home when the detour started. It is an understatement to say I was disappointed with the road situation after a 7 hour drive already completed.

While gone Amber did manage to work on school lessons, especially during some fairly boring times. Iowa is quite unremarkable in some locations and thus Amber spent a large portion of Iowa working on an upcoming history review of the new Project Passport: Ancient Egypt from Home School in the Woods. She also read from The World of Columbus and Sons in the waiting rooms of Mayo and worked on chemistry in the hotel between tests.

Father's day and a goofy girl at the used book fair before we left for Minnesota.

Now that we are back home this week, we've taken a few days with no work at all. Amber has still completed five lessons in math, several chemistry lessons, more of the Ancient Egypt study, listened to a new history audio drama, and practiced flute every day except lesson day.  We also learned all about genetically high cholesterol and treatment in adolescents (any guess why?)  We've studied Amber's diet again along with the dietician and decided it currently has no tweaking needed nor will diet changes affect any blood test numbers.

We've also started our traditional summer fun: comfy spots on the couch while playing the newest LEGO video game. This year it's LEGO Jurassic World.  Of course, Amber hadn't seen any of the Jurassic Park movies and after finishing part one of the game she desperately wanted to watch the movies. The complete three movie set arrived from Amazon yesterday, so we've begun the evening movie watching. We might even take her to see Jurassic World in the theaters.

Our last comfy seats on this couch - a new one has been ordered. And listening to an audio drama while reading through the study guide.

For those of you looking for middle school curriculum, I have a post coming up next week with curriculum books and sets I still have left after our local homeschool group sale. I have a fair amount our previous curriculum and books that I didn't manage to sell (ok, so I gave most of it away. I'm not good at selling.)  I'll be giving away the remainder (for only the actual cost of shipping). The first to request each one will be the new owner. The post will probably be out on Wednesday.

Amber and I are hoping to actually relax now for a few days.  The house needs some deep cleaning which I already started by steam cleaning all the downstairs carpets on Tuesday. The upstairs still needs to be done, plus the steps. At some point I need to start baking and meal planning again and dealing with the school files from seventh grade.  But first, I'm going to goof off like I haven't a care in the world for a few days.

Happy Weekend!

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Wednesday, June 24, 2015

High School Planning for Chronically Ill Children - Scheduling

This final post in High School Planning for Chronically Ill Children comes after discussing how to define a credit hour and then selecting which credits will be needed for your child.  After going through the process for our daughter, I realized it might possibly take her five years to complete what the average high school student can easily complete in four years.

After some thought and a lot of calming breaths, it dawned on me that Amber could be a five year high school student without tacking the fifth year onto the end. We could just begin early, which will allow Amber to still graduate with her friends. However, I've always wanted 8th grade to be Amber's last relaxing year. If we treat 8th grade as partial high school, which is allowed in our state, then Amber could start earning credits in courses that were technically high school level material while easing into the more rigorous aspects of high school.  This plan will hopefully give her the extra time needed.

Unexpected Homeschool: High School Planning for Chronically Ill Children - Scheduling Courses

Now that we had a better idea of how to achieve all the hours, the nitty gritty planning of courses still remained. In order to receive the full benefit of Amber's 8th grade year, we must map out the courses for each year of high school, instead of randomly throwing high school level studies her way.  Knowing the curriculum to be used isn't necessary at this point, but knowing what specific topics we need to complete per year is paramount to graduating by the end of 12th grade.

In our state a student may start earning high school credit in 7th grade, provided the class is of high school level. This caveat gave me a place to begin plotting out courses.  Looking back at Amber's 7th grade, she took Algebra 1 and completed half of German 1, which are both considered high school level content and thus qualifying for early high school credit.  I decided to use Algebra 1 as the math starting location.

Amber will need four credits of math, but additionally, if she can't test out of college level math she will also need to take at least one math class in college.  With her current level of brain fog, that could be disastrous. This leaves us with two math options. Firstly, we can count Algebra 1 as a credit and then accumulate the remaining three credits from Algebra 2, Geometry, and Trigonometry, which gives her five years to complete three math credits.  However, our ideal schedule would be option 2 where we add a Calculus class to give Amber a chance to AP or CLEP test out of college math.  Knowing that she has options for this most stressful of subjects gives us hope.

Amber enjoys science, but similarly to math finds it difficult during some of her more sickly days.  We had intended for her to reach an advanced science in 12th grade by starting Physical Science in 8th grade.  However, since Physical Science is considered high school level, we can use it for science credit number one.  Amber will then progress through Biology, Chemistry and Physics, all of which are considered laboratory classes.  This schedule sets her up to complete four credits of science in five years.  As a bonus, since all of the classes are considered laboratory science, we do have the option of exchanging Physics for a slightly less difficult course when the time comes.

Unexpected Homeschool: High School Planning for Chronically Ill Children - Scheduling Courses

The last of the tricky subjects is German. Amber will basically need a minor in a foreign language for an English degree in college.  She will also need a minimum of two foreign language credits for college admittance.  While it isn't necessary, we'd like to help her along with the university level minor by completing as many foreign language credits in high school as possible. It simply feels wrong to push everything off until her college years and hope for the best then.  We have a good start on Foreign Language, because Amber already earned a half credit of German in 7th grade. If she can earn another half credit in 8th grade, that leaves us four years to earn the required remaining one credit.  It also gives us four years to complete as much German as time allows.  Our goal will be five total credits, but we will be content with three.

The problem subjects of Physical Education and Practical Arts will most probably be achieved through four to five years of homeschool co-op classes, physical therapy and home exercises.  Amber takes enrichment classes through our co-op with the topics varying each semester. A single semester enrichment class will not be enough hours to earn her a half credit.  I've decided to not stress about this for now and assume we will cover Practical Arts through a mixture of co-op classes over the next five years. I expect the most difficult aspect of this plan to be documenting diverse classes taken over longer periods of time as one course.

The remaining subjects do not pose as much of a difficulty for Amber and will be evenly distributed across the last four high school years. Most likely, we will float some of the smaller credit needs, like Government and Personal Finance, around until it feels like a good semester or year. Perhaps even leaving them until the end of high school in the hopes that Amber will have already completed the majority of her math and science. However, if an opportunity arises to take one of those topics at the co-op, especially Personal Finance, we will probably utilize that class.

I've written out our tentative course schedule for Amber and even started filling in ideas for curriculum.  More importantly, I'm working on the scope of each course to ensure that whatever curriculum we select fits our needs and not the other way around.  I'm sure this will be an on going process and the scope of several classes may change as Amber changes.

Mostly though, I am fantastically relieved to now have a plan in place that makes it possible for my chronically ill girl to complete a college preparatory course in high school.  We had not intended to plan out Amber's high school years so far in advance, but our initial preparations made it clear a detailed plan would be necessary in order for her to stay on track. I most certainly did not plan my own high school years so carefully, yet still managed to attend and graduate from college.  However, life with a chronic illness changes all the rules.

Thursday, June 18, 2015

Mayo Clinic Visit - Part 3

We've survived days 3 and 4 at the hospital and are now ready to make the long trek home tomorrow.

We are still waiting on blood test results that won't be back for almost 2 weeks yet. We also don't have the EEG results since it was done after our final consultation, but we will get those through a phone call. 

Downtown Rochester, gluten free pizza, watching the Hobbit during a break, waiting for autonomic testing while reading for history. 
Wednesday was a fairly easy day, comparibly. Amber only had autonomic testing, all of which we had already done at home. These were just Mayo wanting it done in their labs to ensure it was done properly.  They verified everything from the earlier tests.

Amber was exhausted after the tilt table test because it induced tachycardia and low blood pressure. The valsalva maneuver also made her heart do some fun tricks. But she wasn't the same type of tired as after the exercise test on Tuesday.

Autonomic testing. Sweat test, valsava maneuver, tilt table test. 
Today we had a freakishly early morning to meet with a nurse on how to deal with dysautonomia. Many people come without any diagnosis and Mayo helps them learn how to improve their quality life after a new diagnosis. Amber already had a dysautonomia diagnosis when we arrived and we knew most of the information given, but it was a nice appointment and we did learn a little new information. Most importantly we have the latest research on types of needed exercise and confirmation that saline infusions are not the way to go. We also have even more confidence in our local doctor. He has been right so far. The nurse at the first appointment even took his name so she can start recommending him for people who need an autonomic doctor in our area.

The very early morning worked out since they wanted Amber sleep deprived for the EEG in order for her to be able to sleep during the test. It all went fine and we are cleared to go home.

Celebratory gelato, street fair "Thursdays on First", Newt's; our favorite restaurant in Rochester, playing a Star Wars game waiting to go home. 
The big answers
Mayo hasn't yet found a definitive cause of Amber's dysautonomia. Even if it comes back autoimmune, they don't recommend IVIG for patients this young. She would wait on that if an autoimmune disease is found to be the cause. This answer was a big reason we came and we appreciate the guidance for the local neurologist. 

The exercise test showed Amber's ability to oxygenate her blood is pretty pathetic. She apparently works hard to do it, which contributes to her problems. She is also suddenly deficient in several vitamins, with high glucose and high cholesterol. Those were all fine 6 months ago, so this is a bit unsettling. We already have an appointment at home with Amber's regular dietician a few days after returning. No rest for the weary hospital visitors. 

The Mayo doctor has also changed up Amber's medication by replacing everything with a single beta blocker. We might add the vasopressor back in if the beta blocker drops her blood pressure too much. 

Various phases of the EEG
Besides life style education, of which we already knew, that's about it from our visit. But we did get good advice and no longer feel like we are floundering. 

We're off in the morning for the long drive home. It's rained in Missouri almost nonstop since we left, and is now flooding everywhere. Of course thanks to the tropical storm moving inland and up into the Midwest, the rain isn't over yet which will make it an interesting drive. 

We learned a lot on this trip and are glad we came, but it wasn't all that we expected either. We've still got a bunch of follow up to do at home with all of Amber's specialists.

Lots of waiting.