Friday, October 18, 2013

School? Maybe, Learning? Definitely

This has been a week of adjustment while we try to figure out how to feed a fructmal child who is still undergoing other medical tests.  It's not been a terribly successful week either.

We did start out on Monday with great intentions and a fairly positive attitude.  Amber took a math test, completed all the scheduled subjects and wrote two different history narratives.  We made a quick jaunt over to the medical lab for a few more requested tests too.  We even managed to make it to Amber's handbell practice on time, run to the grocery store, and have dinner at home.  It was a wonderful start to the week.

Unfortunately, that was also the best day of the week.  Monday the GI doctor's office finally(!) called with the date for Amber's capsule endoscopy (the test where she swallows the incredibly large camera pill).  She was scheduled for Wednesday, two days later.  That meant clear liquids after dinner on Monday and all day Tuesday with the bonus of another fun intestinal cleanse Tuesday afternoon.   Ever try to conduct school with a child who feels crummy, is hungry, and has to take Miralax every half hour?

Yum.. lunch.  Oh, and a popsicle.  She was beyond happy for that Jello.

Tuesday, we actually crammed some school into the mid portion of the morning, because honestly we rarely ever see early morning.  Then we ran to yet another clothing store trying to find something Amber will wear.  We met with moderate success this time, but she still was about half a wardrobe short.

Lunch Tuesday consisted of orange sugarfree Jello, orange Schwan's pops (because they use aspartame and not fructose) and Gatorade. Amber was simply thrilled to be able to eat something besides a popsicle.  Broth was also allowed but Amber was saving it for dinner and she's mildly afraid of broth since it has onions and garlic (fructan sources).

Tuesday afternoon school consisted of making a salt-dough Egyptian cartouche with carved hieroglyphics.  It turned out to be a fun activity that Amber could complete during her Miralax drinking.  Amber was originally going to write her name in hieroglyphics until she saw the animals required to be drawn for the "A" and the "M".  She decided that just writing "Egypt" in hieroglyphics was much easier.  I decided whatever made her happy with the project was going to be the best way to go.  She still needs to paint the cartouche, but that is a weekend project with Daddy.

Amber making her salt-dough Egyptian cartouche. 

The capsule endoscopy on Wednesday wasn't all that unpleasant.  The hardest part was being at the hospital by 8:00 am and then returning at 4:15 pm.  We seriously had to drive the wrong direction in rush hour traffic twice in one day.  It was about an hour trip (one way) each time.

Amber was such a trooper and swallowed the camera capsule on her third try.  I think it took me a few tries too when I did it a couple of years ago.  It's much bigger than any pill you'll ever take, but has a special coating that makes it go down easier (kinda like chocolate magic pill in the Princess Bride).  Amber still could only eat a light lunch on Wednesday. It wasn't until dinner time that she was really able to eat like normal. But what is normal?

For school on Wednesday Amber managed a whole bunch of literature reading during all the car rides, and a whole week's worth of Biology at home.  That was pretty much the sum total of Wednesday's school, except she did attend her flute lesson.

At the GI doctor's office waiting for the capsule endoscopy and wearing the recording device after swallowing the capsule camera.

By Thursday I had thrown my plans for school out the window and we were just doing whatever Amber felt like she could accomplish and learn something.  A check mark by each subject is not our goal.  Amber needs to retain what she is learning and be able to use it in future lessons.  Thursday morning it was clear that, for some reason (possibly hunger), Amber was in another brain fog.  So, what did she do?  Took a biology test, grammar test and spelling test.  Sheesh child.

Honestly, I haven't graded those tests yet and I may not ever.  I might just have her retake them next week, but it made her feel like she had accomplished something to complete them.   After the morning of testing, we went to Amber's make-up art class.  Thankfully, she was just painting the mug that she made on the clay wheel weeks ago.  This was also the last art class of the session which means we have next week off from art before the next session starts.

Thursday lunch presented another round of our new favorite game: What to feed Amber.  She chose nut butters, crackers, Pirate's Booty, and roasted almonds.  Such a nutritious lunch.  I long to stick some fruit in front of the kid,  but the mandarin oranges we tried over the weekend didn't workout well.  I actually peeled and removed from those oranges every bit that Amber considered icky.  Still the child's tummy did not like them.  Fresh mandarin oranges! No sorbitol or extra fructose.  Apparently the oranges have too much natural fructose.  (excuse me while I go scream)

(LEFT) Amber's art project - a clay pumpkin she carved then it was fired.  Then she painted it - the orange paint actually has glass shards in it.
(TOP-R) Someone is missing from this picture.  The cats were hard at work studying, but where is Amber?
(BOTTOM-R) There's Amber, working on a new Latin lesson.

By Thursday afternoon I had no clue what to do next and school was clearly not an option.  So, we went shopping at yet another clothing store (purchased one dress and one shirt) and then made a quick Target run.  Of course Amber became puny while we were out because who can survive on what she eats, especially after not eating for a couple of days.  She really wanted something sweet too.  The GI doctor's office told us that she'd be able to eat high end ice cream, probably.  I found that Haagen Dazs has no offensive ingredients and only regular cane sugar for a sweetener.  Good enough.  Amber got a plastic spoon from Target's cafe and started on the ice cream before we got into the car.   I'm such a great mother.

Amber still wanted to attend dance classes on Thursday so I let her and wished I hadn't by the time she finished.  She was so tired and sickly looking that I nearly cried all the way home. Again, I'm mother of the year.   At least I had a plan for dinner.  I managed to brown hamburger for tacos before dance; very, very bland meat, but taco meat.  I picked up corn taco shells at Target along with lettuce shreds and we were good to go.  Amber ate one taco... one.  I forced a second one on her.   At least she drank some chocolate almond milk (sweetened with sugar... nothing offensive) with her tacos and got a few more calories there. 

Haagen Dazs!  I hope she doesn't react to it.

Friday we plan to do more clothes shopping and skip school entirely. There are days when you clearly need to give in and take a rest.  My sister will be making a quick pit-stop at my house Friday evening with her kids and maybe she can shop through the fructose / sorbitol laden food that has been removed from my pantry. Amber may not be learning a lot of grammar this week, but she knows all about fructose, fructans, dextrose, sucrose (glucose), and what foods naturally have fructose and fructans. Test her.  She's about got the lists memorized. She also has learned even more about food label reading.

I did have one bit of excitement last weekend when I finally found the time to switch over to my new iPhone 5s.  (Squee) It arrived mid week, last week, but there was no time to deal with moving over to a new phone and setting everything up.  I'm still working through some glitches with the thing (like making the dang photostream sync with my computer again...argh).  I did think the fingerprint sensor was pretty cool, until it stopped reading all but one of my fingers.  Seriously, my thumbs did not suddenly get new skin patterns.  They are still the same thumbs.  iOS7 seems to drain the battery much faster too, but the processor is great and I LOVE the the photo burst feature.  Finally, I might get pictures of Amber dancing... really dancing.

My new toy!

I learned this week that project based lessons and literature are best suited for Amber's sick and / or medical test days. I know, not the most inciteful statement, but I figured out the details of it recently.  The projects make Amber feel like she is getting a break from school work while not quite giving up on learning all together.  Literature is something Amber loves; she willingly reads and discuss books without it being an assignment. This means I need to find a few more projects to go along with history and biology. 

I've also made a decision regarding a few extra subjects. We desperately need an unscheduled afternoon to makeup any subjects that fell horribly behind during the week. It's clear we won't have normal weeks for a while and something is always going to be behind. Therefore, creative writing, music appreciation, art appreciation, and computer programming have been removed from our schedule.  Perhaps we can add a single session of each subject in occasionally, but for nowwe simply don't have time.  Amber isn't going to suffer for the removal of those fine topics for a brief period. I'm toying with the idea of making art and music appreciation summer only topics to help with time constraints in the future too. 

This weekend I hope to have time to attempt a bunch of new fructose free recipes I've found and try my hand at making chicken broth... if I can fathom handling raw chicken parts. With that pleasant thought I'll wish you a happy weekend! 

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  1. It sounds like you did the best you can to be both a Mom and a Teacher. Hopefully life will settle down once you have some answers. Have a great weekend!

  2. IT sounds like you all did a wonderful job getting through a less than idea week. You are doing a great job.
    Blessings, Dawn

  3. I am so surprised that you got any school work done with the week you had. Poor Amber. I am so sorry she has to go through all of this but I hope it will be worth it. You are an AWESOME Mother and don't make yourself feel like you aren't. Love the hieroglyphics! So cool. And a new phone! Fun!!! Happy weekend and I hope Amber is able to eat more.

  4. Be very careful with that self-talk. You are doing a good job in a very tough situation.

  5. Considering EVERYTHING, she did wonderfully! I think if I were in the same situation, I'd simplify to the very, very basics: some reading, some writing, some math with a little history and science here and there. She must be a strong young lady! And Mom just be too!

  6. Lookslike a busy week! I hope you have a restful weekend ;)

    1. Thanks, but not exactly restful. We received a call from the GI doctor Friday evening. All is not well with Amber. I am hoping the next week will bring some clarity and a course of action.

  7. Good luck with the chicken :-) I continue to pray for Amber. I love her pumpkin this week and think she's a very strong young lady going through way more than she should have to. (If I lived close to you, I would love to take you on a relaxing Mom's night out. It's hard to be strong for yourself and her too!)

  8. Enjoy your weekend! You deserve it.

  9. It sounds like it was quite a week. I am glad you are figuring out what works and how to do school in the midst of all that.

  10. Wow! Reading about your week has exhausted me! Just figuring out what to feed Amber is exhausting. She is a real little trooper, so cooperative. You could use her ordeal as her health and science class! I hope the testing will be over with soon for her. You guys need a break!