Friday, November 1, 2013

School? What's that?

Another week of our half-hearted attempts at school with more medical stuff.  It's beginning to look like this is our normal routine.  However, we are hoping to get back to something resembling a life without constant medical testing soon.

We did make a good start to the week in terms of school work, that is until Amber came down with a nasty cold.  Her immune system is just not functioning well right now.  She also still has a bacterial infection on her foot that the primary doctor addressed again this afternoon and added two more medications.

Amber did complete a lot of history work this week as it seems to be a favorite of hers and pretty easy to accomplish in terms of brain power needed.   She did a lot of her lesson reading, took notes, wrote one narration, and watched several Netflix videos on Pompeii, Greece and Egypt (even though we officially finished Egypt).  Her favorite was the Pompeii video, and I have to admit I only watched portions of it with her.  It was not rated, but the parts I saw seemed just fine and Amber said there was nothing really bad in it (not really good for anyone under 10 yrs old in my opinion).

(LEFT) Working on Biology using Timeline Builder on her iPad.
(RIGHT_TOP) Being sick and watching the Pompeii video
(RIGHT-BOTTOM) Selecting a new figurine at Michael's.  It counts as school when she has to calculate the coupon discount and tax, right?


Biology slowed down a little bit this week, but we still completed two experiments and all the bookwork scheduled for the week.  Amber is actually completing the last of it as I type this on Friday afternoon, but it will all be done shortly.

The remainder of the book work for the week was comprised of one single grammar lesson and a full week's worth of logic that was completed in the car during various drives to appointments.  We are so pathetic sometimes.

Art classes started again this week and Amber is thrilled to have a friend joining her in art this session.  Amber is using the projects from this session to make family Christmas gifts.  This will take a load off of our schedule to have so many of her homemade gifts be a portion of art class.   Both handbells and flute were attended this week even though Amber sniffled her way through the flute lesson.  Hopefully the instructor was not too offended.

Fred and I made the difficult decision to remove Amber from half of her dance classes for the remainder of the semester.  She just doesn't have the energy to keep up, especially with her private lessons / solo dance. We actually intended for it to be all of her classes, but Amber begged to keep ballet and contemporary.  We'll see how this goes, but recital is only about 5 weeks away.

(LEFT) Working on a drawing journal with some story writing to go with the pictures
(RIGHT-TOP) Mug Amber finished during the last art session. She formed it on the pottery wheel the first week of class, then had to wait until the last class for the glazing.
(RIGHT-BOTTOM) Playing on the American Girl website.  This is in no way school, but it was fun


As far as the medical testing the doctor has definitively(?) determined that Amber does not have Crohn's disease or a tumor (thank God).  The auto immune disease is still a possibility, but looking less likely.  We have an appointment with the GI practice's dietician on Wednesday, but don't have high expectations for this visit considering the doctor's attitude toward the Fructose Malabsorption which she actually diagnosed. huge eye roll...   Amber visited the endocrinologist on Monday and completed a ton more bloodwork to ensure everything is good in that area.  We do have Amber scheduled at the GI department of St. Louis Children's Hospital (Wash U School of Medicine) towards the end of November to see if they have a better handle on Amber's condition than the current GI doctor.  As it is a research hospital, we are hoping they will know more about Fructose Malabsorption and not attribute every single symptom to some dreaded disease.

We have already started Amber on the elimination phase of the low FODMAP diet to begin her intestinal healing.  She actually seemed to be doing somewhat better for a few days until the cold drainage made her tummy upset.  Still, she's not crying herself to sleep from stomach pain anymore so that's a positive.

This new diet means that I have to make from scratch just about everything the child eats.  She can't even have store bought chicken or beef broth because they contain onion and garlic which are both fructans.   On the elimination diet Amber can have no fructose (not even sugar as it is half fructose) and no fructans.  I can use dextrose in baking, so this has been an education week for me in the kitchen. The greatest success of the week, food-wise, were the cinnamon bagels I made for Amber.  They dry out pretty fast, but were completely free from harmful "things".

(LEFT) Temporary microwave.. sigh
(RIGHT - TOP) I made chicken broth from a chicken... it was disgusting. Next up is beef broth.  I think I might cry.
(RIGHT-Bottom) Amber's version of a salad now: lactose free cheese, hard boiled egg, ham (cured without offensive sweetners) and a stray carrot slice that doesn't belong.  Sigh.

We also had the added joy of our microwave ceasing to function on Halloween.  I tried to heat Amber's lunch and it would not warm up.  The microwave appeared to be working, but nothing warmed.  Since we have an over the range microwave it's not as simple as buying a new one to stick on the counter.  Instead of baking bread Thursday afternoon, I was out shopping for a new microwave.  I settled on a GE Advantium (convection + microwave) that I've wanted for a while, however it won't be in stock and installable until mid November.  Fred suggested that we purchase a cheaper counter model to use until the Advantium arrived and then we would have as a backup microwave in the future.  So, now I've lost a portion of my counter space to the temporary microwave.

Amber did go trick or treating on Halloween and went to every house on our street with the lights on.  She may not be able to eat most of the candy (only Smarties and hard Sweet Tarts), but she is trading the rest of it in at the dentist next week for a $1 a pound.  The dentist is participating in Operation Gratitude, so Amber knows her candy is going to the U.S. troops and she gets something for her effort too.

Amber went as a "huntress" but actually it was a female Robin Hood. She really really liked Robin Hood.

Today, I had a regular checkup at one of my specialized doctors and Amber wandered a local mall with my mom while waiting on me. The mall is fairly close to the hospital where several of my doctors are located, so the two of them utilize the mall often when I am at the doctor.  It's fun Grandma and Amber time for them, and less driving since it is about halfway between our house and my mom's.  Today, I had to send Amber with a care bag of snacks in case she got hungry because she can't eat anything from the mall restaurants, tissues, and sugar free cough drops.  It's like when I used to pack a diaper bag full of things for my baby / toddler.  Hopefully, things will get better soon.

We have a restful weekend planned and I might even get some Amber approved food made for the coming week.  I'm hoping next week Amber will be feeling more like her old self and we will accomplish more of our planned school.

Happy Weekend.

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7 comments:

  1. Hi I found you on Homegrown Learners Collage Friday.
    Give yourself a break about school routine. Life is school and it sounds like your littles are learning a lot right now. Blessings to your family.
    I would like to invite you over to "This Week..." at Great Peace Academy http://www.greatpeaceacademy.com/2013/11/this-week-fall-break.html

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  2. What a wonderful mother you are. I am glad your bagels came out and that she was able to do a little bit of Halloween. I am sorry she had to stop some dance classes. I know that was a hard decision for you all to make. Our son who has so many allergy and digestion issues can only have Hershey chocolate bars and kisses with minimum reactions. He is highly allergic to dextrose and all things corn. So our two are opposites. Praying that all goes well next week and your sweetums get over her cold.
    Blessings, Dawn

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  3. I made turkey stock with the carcass from our Thanksgiving turkey. I was planning on freezing some of it but I had so much turkey left I used it all as the base of my chowder. So why did you call it disgusting, Flavor or Process?

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    1. Definitely the process. I have issues with raw meat and such. I can only make and eat chicken if it is boneless, skinless, individually frozen chicken breasts. If I have to so any cutting of raw meat or dealing with bones, then I can't eat it.

      I'm going to cook a turkey too when it's closer to our Thanksgiving. I'll need to take food for Amber to our family gathering and then will have turkey broth too.

      It's a testament to how much I love this child that I cooked chicken with bones. Lol.

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  4. I can't wrap my head around making everything from scratch. I'm thinking you are a wonderful mother going to such lengths for Amber -- and I'm praying you get answers at the children's hospital GI Department. I know this has to be BEYOND frustrating for you.

    Oh -- and your house is VERY clean. I'm impressed!!

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    Replies
    1. Thanks! I'm obsessively neat and tidy and with 3 cats, 2 of them still kittens it is about all I can't take. Lol. Ask Amber. I have 2 sharks so that I'm never without a charged one. Some days I feel like I just follow the kittens around with the shark.

      Hopefully, Amber's intestines will heal quickly and she will be able to tolerate more foods. Right now we can take her out to eat if she orders plain meat and a baked potato. It's almost harder to keep the food log than to make he food. I have to track everything that goes in the kid's mouth, plus her blood sugar and how she feels.

      But yes, beyond frustrating is a good way to put it. :-)

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  5. I'm so very glad that Chrohns and a tumor were eliminated, but so very sad that Amber is still suffering and then to get a cold on top of it all! Not fun, I'm sure. She is a real trooper though. God Bless her! I hope and pray that tomorrow's report is a good one!

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