Friday, March 27, 2015

Cousins Spring Break Fun

We knew going in this was going to be a long week with much patience and grace needed for Amber.  Apparently, I'm still not able to judge Amber's capabilities as evidenced by my many mistakes this week.

Our seven year old nephew arrived for a multiple day stay on Sunday afternoon.  The weather was nice and our back yard beckoned to the kids (including the almost 4 year who was just helping drop his brother off).  I assumed Amber could monitor herself and stop when it was too much.  I was wrong.  She attempted soccer in the yard with her cousins and worked her heart up to over 200 bpm.   And that's how my nephew's visit started.

Games at Brunswick Zone, playing Disney Infinity 1.0 (because it has Monsters University) and floating card magic tricks. 

Needless to say, Amber had lots of aerobic exercise this week.  She tried bowling with her cousin, but even one game was too much.  She did play in the arcade with more success.  We also spent a day at the St. Louis Science Center.  Thankfully, there were lots of places for Amber to rest and my mom went along so we could tag team the kids.  Amber didn't last near as long as hoped and didn't recover from that day in a timely fashion.  Actually, she's still somewhat recovering from the whole experience and we even left my nephew with Grandma (my mom) after the Science Center Tuesday evening. 

At least I was realistic and had no plans for school this week until co-op on Thursday, but Amber did show some initiative by reading the introductory material for the Renaissance on Wednesday.  Today we are trying to hit most subjects while not pushing too hard. Amber did not quite recovere before co-op yesterday which exhausted her again. She also has flute recital tomorrow evening.  I think I overestimated Amber's ability to recover.

Using a robotic arm; deciding which roof type is better in a hurricane; building a truss bridge; Running in the hamster wheel that powers the ball contraption.

Our standardized testing supplies arrived last weekend and now I need to block off the time for Amber to test.  Normally we take a couple of days and Amber finishes the tests easily.  Now, I'm not so sure if that's a good plan. We might have to spread it out over quite a few days to ensure she is at her best for each subsection.  Testing of any kind is not required for our state, and in fact there is no one who sees the scores except her dad and I.  This process is entirely for our own benefit, but we choose to complete them so Amber has experience in testing and we have proof, other than our records, of Amber's progress.

I did finally order and receive the entire Home School in the Woods Time Travelers set.  We will add in some portions of the New World Explorers this year when we study Renaissance era explorers.  I was on the fence if I should order just a couple of the topics or the entire set. They are listed as appropriate up through 8th grade and we definitely won't get to World War II again until high school.  However, Amber is quite enamored with these products so I'll probably try to incorporate them into her high school history as well.

Radaring traffic on the highway below (the Science Center has two buildings connected by skywalk OVER a major interstate); Playing a memory game; Digging for dinosaur fossils; Amber couldn't go any farther

The Mayo Clinic still has not scheduled Amber's approved visit to the autonomic dysfunction clinic, but I did call them again to verify everything was a go.  Their calendar block simply is not open yet.  I desperately hate waiting.  I did hear from Amber's local dysautonomia neurologist though.  Every two weeks I am to email him an update on Amber with detailed vitals from orthostatic testing done at home, any new symptoms, her impression of how she's doing, and my impression of how she is doing.  He was not yet pleased with Amber's standing blood pressure or heart rate even with the recent increased dose of midodrine, so it's being increased again.   This makes me a bit nervous, but her blood pressure is still quite low and can stand to go higher without any problem. I do need to monitor her blood pressure a little closer now with the higher dose and she has a greater risk of side effects.

Amber's welcome to her cousin on our dry erase wall and the schedule for his visit.  They love to check off items and update it.  Then, Amber on the way to flute a DAY after her cousin left.  She was still pretty exhausted.

Besides the flute recital this weekend, I must must must finish Amber's Narnia costume so that's not hanging over my head.  I managed to bake quite a bit of food for Amber on Wednesday which clears up this weekend for sewing.  Just in case you are interested in gluten free cooking / baking, I posted a list of our current 15 favorite gluten free recipes.  Of course there are many foods and dishes that are naturally gluten free, but our list is of foods that would not normally be gluten free.

Next week it is back to a regular school schedule for Holy Week and I'm hoping that a few of the standardized test subsections will be completed in lieu of new lessons. 

Happy Weekend!

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  1. I am sorry it is so hard to figure out the recovery times for Amber. However, I think you are doing a great job.
    Blessings, Dawn

  2. How's Amber doing this weekend? I'm sure it's hard for her (and you) when she can't do all those things she wishes she could. But look at all that she enjoyed? accomplished? What a busy week for her!

  3. I've been checking out Time Travelers. How much WORK is it to print all that stuff out??

    1. It's really not bad. For the Project Passport sets I printed up front a few things we would use for the whole year. Then I just printed what we need by project. Sometimes we decided not to do projects. I also put the text from the lessons on Amber's ipad so she could read it without using my computer or needing it printed. I actually printed the timeline figures on large sheets of mailing label - the ones that are an entire sheet of sticker. That way amber could still color it if she wants but we don't have to glue. She cuts out the figures for the current assignment and peels off the backing. Easy peasy :-)

  4. I'm glad Amber was able to have some fun with her cousin in between episodes. How frightening and frustrating for you all. Thanks for sharing your recipes. I'll be checking them out! We have to test every other year after 5th grade, but I usually do every year anyway just to be sure things are going good! I hope it's not too hard to schedule Amber's testing so that she functioning at her best!

  5. I'm happy to hear that Amber had a great time with her cousin but sad to hear that it completely exhausted her a bit longer then you had anticipated. Don't be discouraged Christy because you are doing an amazing job with her. You are a wonderful mom and each day, each activity is going to be different for Amber so there really is not knowing how much time she will need to recover. It will always be something different. Just keep doing what you do. How is she doing this weekend? I hope she's doing much better. And GFU that you make her take the standardized testing. I'm positive that she is going to do a great job.
    Have a great rest of the weekend my friend!

  6. Sounds like a fun week. Don't be too hard on yourself. I think you are doing a brilliant job under tricky circumstances.