Friday, September 25, 2015

Finding the Positive in Life

This has been one of those weeks where I'm inexpressibly grateful we homeschool. Amber and I spent some precious time together just being us, as well as some unexpected recovery time. None of that would have been possible if she was in a school away from home. We've had several discussions this week about the many positive aspects this life style affords us.

Amber and I chose to take Monday as our September Amber-and-Mom day, which means no school! We trekked to the mall 30 minutes away in search of clothing for the ever growing girl. She found a very few acceptable tops and couple of jeans at Hollister, as well as a few non-clothing items at the LEGO store. It was a fun time despite our small purchases. We then had a leisurely lunch about halfway home, yet still close to the Children's Hospital Specialty Center where she had PT later in the afternoon. 

Lunch after a fun shopping trip; LMO using her dad's computer, again.
Physical therapy was a nightmare though. Amber's therapist had gone home sick and the other therapist who specializes in EDS was busy, so we were given a randomly available fill-in. He knew nothing about dysautonomia or EDS. As usual Amber wanted to go back to the therapy room without me, which was another mistake. She did not speak up when the therapist put her on an elliptical machine right off the bat. It triggered an episode of tachycardia that lasted almost 24 hours despite medication. Her entire session was activities specifically forbidden by both the local and Mayo dysautonomia doctors. The therapist also worked her joints so incorrectly that Amber could barely walk Tuesday as a result of the extreme knee pain. I did call back Tuesday and speak to the office about our experience. Amber will now only ever have the one of the two EDS knowledgable therapists, or they will kindly call and reschedule her appointment. 

For the rest of Monday after PT Amber played LEGO minifigures online, rested, and watched Stargate SG-1 with me. Fred had a late video conference, which meant we were even on our own for take out pizza dinner.

Kitty therapy after a long day Monday; Salad and Chocolate Thunder from Down Under (Outback) for a very very late lunch on Tuesday. Some days you can't get much sicker, so why worry about food reactions.
Tuesday was a fairly awful day. Amber couldn't sleep Monday night because of the tachycardia and labored breathing. By Tuesday morning she had a fever. We spent the day resting and hoping she could recover before her flute lesson and confirmation class on Wednesday. I'm happy to report she made it to both activities on Wednesday! And since this was the last class of the module, it means she completed the entire first confirmation module of the year without needing to reschedule for a private afternoon lesson!  The next active module isn't until January and we're hoping it's equally successful. 

We did finally get Amber's heart rate back down to a more manageable rate by Tuesday evening and her fever had abated. She still slept in very late on Wednesday, however she was much improved over Tuesday. She continued to have breathing trouble throughout Wednesday though. We aren't sure of the exact cause, but the sensation of being oxygen hungry and chest pain always coincides with prolonged periods of tachycardia. Despite the rough therapy, Amber says Monday was a great day together and she enjoyed our restful Tuesday, except for the sickly part. She's really working at keeping a positive attitude.

Doing much better on Thursday. She was a little puny after co-op classes, but still greatly improved.
Amber did complete a few lessons on Wednesday - poetry, spelling / vocabulary, German and her final confirmation test (it was harder than any other school work). She's also attempting a full day of school today after a full day of co-op classes yesterday. We're still not worried about the slow progress in September as August was extremely productive. We've also learned over the past year to take recovery days instead of always foraging ahead. While Amber might have been able to complete a couple of lessons on Tuesday, it would most certainly not been her best work and, more importantly, could have delayed her recovery by an additional few days. 

Amber loves Autumn with all the lovely spice smells and decorations. We noticed a dramatic improvement in her mental outlook after we decorated for Autumn a few weeks ago, but the house still smells like recycled air-conditioner air. However, on Tuesday we finally figured out how to bring back the scent of Autumn to our home.

Silly cat - we still see you; 
Spelling work today. Amber had been looking all over the house for her buddy, Milori. All she had to do was start school and he joined her.
We always had the large brooms of cinnamon in the Fall and at Christmas, but after getting Biscotti 4 years ago we had to give them up because the cats eat the cinnamon. Tuesday afternoon we managed a desperate grocery store run and saw the cinnamon brooms in their usual place. Amber loves the smell and was quite downcast over them. I said, "If there was a place we could ensure none of the cats would get to it, we could get it. I just don't know where to put it." Amber  did know where and now our main level smells of cinnamon without the Bath and Body Works air spray.

Amber's playroom door
So while this week has been fairly unproductive with book work, we've had lovely time together and learned some valuable lessons for therapy sessions and even dysautonomia crashes. This weekend we are still relaxing, possibly seeing my mom and sister's family, and hoping to start well again on Monday because it's a crazy week coming up with many out of the house appointments and activities.

Happy Weekend!

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  1. I'm so sorry Amber had a hard week. She always looks so beautiful in your pictures. I love the picture of Milori on her desk! I hope you had a wonderful weekend and a good week next week despite all your appointments and activities!!

  2. I am sorry to hear about the brutal therapy session. I am glad that the problem has been resolved. One year Margaret spilled an entire bottle of cinnamon. I vacuumed it. The whole house smelled like cinnamon for a couple of weeks. I like the idea of the cinnamon brooms but I have never seen them here.

  3. I love Amber's play room door decoration! Autumn is my favourite time of year and it has definitely reached us here - I slept with 2 duvets and a blanket last night and I could see my breath in the air!

  4. What a horrible experience at PT. I am sorry both of you went through that. What a wonderful gift to be able to homeschool.
    Blessings, Dwan

  5. Amber is truly a trooper! Despite everything she keeps going with determination, looking at positively at the "little things" in life. I hope she's feeling better after the weekend!

  6. What a beautiful girl!!! Rough week. I just found your blog through the link-up. My 6 year old just had an ablation done in July for super ventricular tachycardia. Tachycardia is soooooo stressful on mom and child. I'll pray for you!!!