Friday, July 8, 2016

Summer: Week 6

This is turning out to be a summer of no school instead of the bridge between eighth grade and high school.  We had a full week planned, until Amber came down sick on Saturday (really Friday evening). She held it all at bay in order to serve at VBS last week, but when that was over she relaxed herself and crashed.

Saturday, Amber wasn't feeling too awful yet, although was clearly sick with a very sore throat. She and I attempted to sort and store her myriad of assembled LEGO sets. In the end we decided to disassemble the sets she does not regularly use and store them with their assembly instruction books in the playroom for easy access. Along with a few extra bins, this gave us space for all of her current sets.

We did notice that one set, the Cinderella's Castle, was crumbling. As in the pieces were splitting, cracking, and generally just disintegrating. After a quick call to LEGO customer service, a new set was on the way and we had a pre-paid label to send the defective set back. I have to say it was a very pleasant experience, aside from the original problem. We have no clue what happened to that set, but Amber's replacement arrived Thursday and is already assembled.

Basically how she spent the week, except sometimes downstairs. And sometimes sound asleep. And this is my only Amber picture from the week.
We planned a nice calm Independence Day at home, but instead it became a comedy of errors. Amber was even more sick with what was turning into a sinus infection. I was trying to do some household chores and tidy up after the week of VBS where we did no housework. In my general clumsiness, I stubbed my right foot pinky toe and broke it - for the third time on this particular toe. I'm now the owner of a new pair of Nike flip-flops as my only comfortable pair of shoes. I'm hoping it heals quickly.

I managed a second degree burn on my thumb attempting to make gravy for dinner - notice the attempting part, along with another minor burn from the potatoes. I was in rare form. And I jostled my back to where it lost all the recovery I'd made over the weekend. Poor Fred was at his wits end and couldn't wait for me to go to sleep to end the day.

We did take Amber to the pediatrician on Tuesday morning and she had/has a horrid sinus infection that is requiring antibiotics. The doctor said she was entirely exhausted as well and needed rest. Her body just can't handle it and there is very little over the counter medication she can use because of her other conditions.  It's been slow going for her healing, but this morning she woke able to breathe out of her nose, sorta.

Biscotti.  Why yes, Milori is getting ready to jump up too. Whatever Biscotti does, Milori can do too.
Last night, when it appeared she might be coming out of the illness, Amber spiked a fever that made no sense to us at all since she had not had a fever this whole time. I think it was part mild dehydration and part a dyautonomia flare. Her body also decided it was time to sweat, as in her hands were literally dripping with sweat while she was sitting indoors. Despite all of our attempts to keep Amber hydrated she actually dehydrates rather easily because of the dysautonomia and it is a constant daily battle, even when she doesn't have a sinus infection.

I don't want to jinx Amber's recovery, but it appears she is finally going to be among the free breathing population soon. We have cancelled almost every single event this week, including her sleep-deprived EEG (couldn't see that going well), and flute lesson which was put off and then finally just cancelled. She did go to physical therapy this afternoon; it's been almost two weeks since Amber has been able to go and she desperately needed it.

Amber did try to do a little school work earlier in the week; actually it was a review of an art program that she has been enjoying. She'd planned to work on it more this week, but rest became more important. The child has been sleeping around 14 hours a day, and then resting again in the afternoon. We've watched a lot of TV together, but no video games unlike other sick days. She just didn't even have the energy for our new LEGO Star Wars game.

Sharing space, for the moment.
Next week we are back to a normal schedule of therapies, Project Write, flute lesson and hopefully a fun day out with Grandma for Amber's half birthday. This is all assuming Amber continues to heal up and is able to rest between all of those events. I guess we won't really worry about school too much next week either.

During Amber's down time, I've been adjusting our plans for next school year to include finishing a few topics I'd hoped we would complete over the summer. At this point, I'd just like Amber to finish her physical science before the end of August. She is determined to finish it as well, since she's terribly excited to move on to botany. Perhaps it's just the change of pace, or the entirely new topic, however she is freakishly interested in botany.

My biggest hurdle for this weekend is to create a rough draft of Amber's daily school schedule for 9th grade. I love that we attend co-op, but it really throws a kink in the daily schedule to be gone for an entire day each week, along with all of Amber's treatments for EDS. Wish me luck!

Happy Weekend!

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Weekly Wrap-Up 


  1. I am so sorry that you both have had such a hard week. I hope things are on the up and up. Take it easy!
    Blessings, Dawn

  2. Good luck! I hope she's up and feeling better soon.