My World Is Upside Down

This seems like the place to share all my feelings… being my blog and all… But I’m not ready. Instead I’m just going to give you this link. Please help if you can. Pray if you can’t.

http://www.youcaring.com/other/bring-our-kids-home/240996

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Spring Treats

 

So a couple days ago I decided to make some “spa water.” I was chopping fruit for the dehydrator anyway. This is the flavor combination I came up with. Cucumber watermelon strawberry lime and mint. Decided we needed something without sugar  but less boring to drink around the house. I also decided to order some water kefir grains on Amazon. My SIL is in love with fermenting things and she suggested I try it after we talked about how I needed to get started with kombucha again. She’s mailing me another SCOBY, and last night I got a shipping notice for the kefir.

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Dehydrate all the things! Here’s my beautiful dehydrator full of apples, strawberries and watermelon. The apples are destined for other places (snack mix) but the watermelon is for eating plain like candy. The strawberries already ended up being eaten along with some yogurt, but I originally planned to use them for granola bars.

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And here’s the finished product:

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That’s all for the “pretty” stuff. Bright and early my MIL texted my husband that the goats (and she herself) have cryptospiridiosis. Ok, so not so bright, considering it was before sunrise, but definitely early. She’s VERY concerned. Although in a healthy person, a few weeks (up to a few months) of diarrhea is inconvenient, it’s not really something to be too worried about. And eventually the parasite is expelled on its own. In an immunocompromised person (such as someone with Celiac or Autoimmune Heptatitis) or someone taking corticosteriods or immunosuppressants, the parasite can be quite persistent. It can be impossible to get rid of, and will eventually deprive them of nutrients and hydration to the point of death. On the bright side… K doesn’t seem infected. Although M does. So all the kids are being secluded from each other today. We need to pick up hydrogen peroxide and wormwood. Thankfully, we have a WCV scheduled for M tomorrow. So we’ll get everyone checked out then. And perhaps they’ll say it’s nothing?

Whole 30 Weekending

 

 

 

 

 

I occasionally enjoy reading other blogs. One of my favorites (although my husband doesn’t understand the appeal) is The Bloggess. And the other day I went into my kitchen to find this beautiful practical joke from my husband. I love that man.

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It’s been sunny here in Washington. We decided to make the most of our 3 day weekend. Friday we went to the dentist to get K’s cap put back on her tooth. Then we went up north to run a few errands and had lunch at Famous Dave’s. You can make this Whole30 by ordering what I did… The Cedar Plank Salmon (no sauce) with steamed broccoli and grilled pineapple. Just make sure not to get any bbq or honey. 😉 My middle son tore into his hunk of bone-in chicken like a real caveman.

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Picture above is Saturday’s “brunch.” Scrambled eggs with tarragon, smoked salmon and red onion. This was good. The kids really enjoyed it. Saturday we went out for a paleo picnic at the park. I brought more smoked salmon, mesquite smoked turkey, grapes, strawberries, raspberries, baby carrots, hummus, and the kids picked out their own drinks. VitaCoco (coconut water) in pineapple and lemonade flavors. Pictured below is an example of Whole30 stir-fry, in case you aren’t planning a picnic. Don’t use soy sauce. Because I haven’t dropped into Whole Foods for coconut aminos, I made this using thai fish sauce and balsamic vinegar. Sounds weird, but believe me. Top it with a little homemade chili garlic sauce and you wont even know the difference!

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After our picnic, we went to the mall and let the kids drive around on one of the “zoomers” that they rent out at a kiosk inside. They chose the dinosaur and had an absolute blast for the next 30 minutes. And we finished up the day by grocery shopping. And I’m pretty excited to make a few of the things I’ve got saved to my Pinterest boards. Strawberry banana granola bars, apple pie trail mix, fruit snacks… We didn’t pick up any processed goodies for the kids this month. I’m considering making the kids some paleo themed shirts. I’ve got some great ideas. I’ll post them up when I’m done, and of course, because I’m nice, I’ll be willing to make and ship some to anyone who is interested at cost. Because profit is lame. 😉

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Sunday morning we went to church. Which we do every week. It was Palm Sunday and our church was having baptisms. Pastor Kevin preached on The  Bystander Effect as part of his There Is More series. It was a good one. K decided to get baptised, and now I plan to sit down with her during our Bible lessons and make sure she truly understands the importance of her life decision. At only 7, it seems like a 50/50 chance she only did it because she knows Jesus did. After church, our goal was to have a relaxing day in. Our water heater, however, had other plans. And the stupid bottom rusted out at water shot out from anywhere it could possibly escape and has flooded my laundry room. I’m still waiting for a call from  the people who are supposed to replace it. Thankfully, this happened right after I had finished all my husband’s work laundry, and washed the dishes before dinner. The dinner dishes will just have to be done with boiled water (after I’m done with this post.) And I wanted to share one of the AMAZING paleo dinner discoveries I’ve had. Even my kids loved it. Bacon Beef Butternut Squash from The Civilized Caveman. I like this so much, I’m going to post the recipe right here with the modifications I made. DON’T use the cheap packaged bacon. It’ll be too greasy. Grab it from the butcher. Or a Applegate bacon will work. It’s usually reasonably priced at Fred Meyer.

Ingredients
Instructions
  1. Preheat oven to 350 degrees fahrenheit
  2. Cut squash in half and scrape out the seeds
  3. Place face down in a pyrex dish with 1/2 inch of hot water and cook for 30 minutes
  4. While its in the oven, cook the bacon in a pan until crispy, set aside and leave the bacon fat in the pan
  5. Add 2 of the sliced onions and celery to the pan and then add the beef
  6. Season with salt and pepper to taste and your cinnamon
  7. Continue stirring until the beef is finished, remove from heat and place in a bowl
  8. Remove the squash from the oven, when you can handle it scrape out some of the guts, leaving ~1/4 inch of squash, add squash to bowl with meat
  9. Crumble your bacon and add that to the bowl as well
  10. Mix well and then stuff your squashes with the beef mixture and place back in the 350 degree oven for 20 minutes
  11. While your squash are baking, add your reserved onion to your sauté pan (drained, add 1 TBS olive oil… or keep just 1 TBS of animal fat) and cook them over low heat with your balsamic to caramelize them
  12. Remove squash from oven, top with caramelized onions and Enjoy!

Whole 9 Life

My SIL introduced me to Whole30 last year and it really worked wonders for our family. And I’m getting super excited to start our second one after we do our grocery shopping. Which will be next week some time. This weekend we’re going to have to go pick up some meds for K. That mail order stuff was so annoying I have honestly decided it is more worth it to drive up north once or twice a month. It’d be something else if her meds weren’t compounded or were more readily available at pharmacies in child-sized doses… or if her insurance would do more than one month supply at a time… But no. That would be too easy. The worst part being that now they’ve staggered our refill schedule by taking their sweet time filling and sending prescriptions. So I’m not even sure I’ll be able to pick them all up. I’m calling today so wish me luck. Tangent. Sorry. My point being… Since we’ll be up in a more metropolitan area, we’ll be stopping into Whole Foods and Uwajimaya to look for a few things I just can’t seem to find locally. And maybe hit TJs on the way home for some Kerry Gold. It’s seriously so much cheaper there that I’m questioning how grocery stores determine prices in the first place…

I’m stock piling Whole30 friendly recipes on Pinterest. Pinterest is my addiction. You know… besides coffee. And the scale. I admit it… I stepped on the scale again today. But it was down 5.5 lbs so I’m ok with that. I imagine it’s mostly water weight but whatever. Down is down! I don’t know if it is working out or my love of new foods but it’s improving my mood. I can’t wait to go shopping, stuff my fridge full of good food and just get cooking. Although I may have to resist the temptation to make Nom Nom Paleo Cracklin’ Chicken several times a month. I made roasted broccoli (or cauliflower) with Whole30 friendly homemade chili garlic sauce, olive oil and a pinch of Himalayan sea salt… Seriously. My favorite meal ever. The trick to softer oven roasted broccoli, btw, is to toss a TBS of water on the pan halfway through. My family doesn’t like their broccoli crunchy.

Anyway, because of this lifestyle change, I’ve been checking out prices on meat. I’ve looked at stores, farmer’s markets, farms, and butchers… And I’ve seriously decided I ought to raise my own meat. I’m currently working on getting my husband on board and just hoarding information on (you guessed it) Pinterest. Eventually I’d like to have a couple goats, ducks and chickens. Maybe a cow one day. But for now I’d like to start gardening and then raising some rabbits for meat. If you know me, you know I tend to just kill plants. So that’ll be the hard part. Rabbits will be easy. Not so much the killing. That’ll take some getting used to. I’m looking into New Zealand Whites. My daughter will be happy to have the breeders… as long as she doesn’t realize we’re killing the others.

Health Background

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K is my oldest. She was born at 27 weeks. She weighed just 2lbs 6oz a birth. Which was actually big for her gestational age.

n 1% of premature babies are born before 28 weeks. But their odds of survival are getting surprisingly good. We had no complications and she was able to come home after just 10 weeks in the NICU. And I was able to breastfeed her until she was 2.

Last year,during a day of fun in Seattle, we noticed that K looked yellow. Being that I am not particularly white, my kids have inherited my slight yellow undertone, and it wasn’t immediately evident. But I called Daddy over to come take a look at her eyes in the light. The whites were yellow. So we scooped up our crew and went straight to the Seattle Children’s Hospital ER. They couldnt tell us much of anything after the first round of tests. It wasn’t cancer. Her liver and surrounding organs were definitely swollen. Had she been vaccinated for hepatitis? Was she exposed? (Yes. No.) Had anyone been sick? The boys had had a cold the week prior… But how could that possibly matter? After a few hours, they could only send us home with a referral to their hepatologist.

A couple weeks later, we met one of the doctors. She ordered a round of blood tests on a suspicion. She said it might be an autoimmune disease and she needed to look for the markers. It came back positive. Autoimmune Hepatitis Type 1. Her AST and ALT were each about 2500. We would need a biopsy in a few weeks to confirm, before starting aggressive treatment. But if we were right, we caught it very early. Giving K the best possible chance to get healthy.

K was a champ for her biopsy. My mother bought her a bear which she still sleeps with and has dubbed Princess Beauty. Princess Beauty will likely be present in many pictures to come. Image

Autoimmune Hepatitis is a rare disease. It is thought that it MIGHT be related to genetics. The trigger is different from person to person. In our case, I’m pretty sure it was EBV. But it can be many things… Food allergies, vaccines, stress… The diagnosis normal comes after years of symptoms. Which include itching, flu-like symptoms, fatigue and jaundice. By the time  you get jaundice, you’ve normally experienced some cirrhosis and may need a liver transplant. K has no cirrhosis. She likely won’t need a transplant. At least as a child. Despite the overlapping Sclerosing Cholangitis. I do know more about both diseases, including statistics, but I imagine it is less interesting to people whose children don’t have it. Suffice it to say, it’s rare. All of it. And without treatment, K would be dead before the decade was out. Treatment include immunosuppressants, corticosteriods, and something called ursodiol for her bile ducts.

We started K out on 30 mg of Prednisone, 25 mg of Imuran, and Bactrim. At first the prednisone gave her stomach aches. And she even threw up once. I caught her a few times spitting her pills back out into her milk or hiding them under her pillow. (Yes, my children swallow pills early. Unlike their mother who didn’t until 12.) But I stressed the importance. And her AST and ALT began to come down a little at a time. Giving us the opportunity to lower her prednisone. It’s now 2.5mg a day. When her stomach aches continued to get worse, I called. And called. And called. And we finally realized she has PSC overlap. So we added the ursodiol. There is no curing PSC. But when it is caught this early, the ursodiol seems to keep it at bay. We went in for weekly bloodwork for a while. Then twice a week. Once a month. Now we just go before each follow up appt. Since she had one Tuesday, the next time wont be until November. K hates blood draws. Like, vehemently loathes them. You’d think she’d get used to it… Anyway, her GGT continued to rise. So in July of this year, they added something called Cellcept. Or MMF. It is a stonger immunosuppressant. There was immediate improvement. So they stopped the Imuran. Below are the most recent labs:

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K hasn’t really grown since we started the steroids. Not surprising to me because she wasn’t big on growing before… But her doctor is keen on getting her off the prednisone completely as soon as possible. So we don’t miss her opportunity to have a growth spurt that puts her at normal size for a human being. 🙂  Here are her most recent measurements (keep in mind that she’s 6.5):

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Yeah… We got her tall shoes for our trip to Disneyland for the kids’ birthdays this year. And they let her on all the big rides. Shhh. She’s old enough. And loved it. So that’s K.

Child number two… M. M was born at 33 weeks, after I started funneling at 28 weeks and got to spend 5 weeks laying in bed trying to keep him in. He was 5lbs 3oz at birth (also big for GA.) He was perfectly fine until he started eating solid food. And then when he stopped breastfeeding at 14 months, he stopped growing. He was 19lbs until he was nearly 2. I tried eliminating everything I could possibly think of from his diet. And still there was blood, and diarrhea and no growth. They diagnosed him with FTT. And we started a probiotic and pediasure. Eventually, a friend of mine went GF with her son and a lightbulb clicked for me. So we had him tested for celiac and immediately went gluten free too. Immediate improvement. I recently discovered Whole9 because of my sister-in-law, and have been flirting with the idea of going Paleo for the whole family.

A is healthy. Haha. I feel bad giving him the short story, but we sewed that kid in. He came out on time. And he is the little blond picture of health.

 

About The Musics

Tomorrow I intend to post about our first week of homeschooling. I thought I would start the blog today with a little bit of an “about me” post about our family. I am a 26 year old, Christian mother of 3. My husband is a courier. Music Child #1 (K) is a 6 year old girl. She was born at 27 weeks has Autoimmune Hepatitis Type 1 and sclerosing cholangitis. So every morning starts with a cup of coffee for me, and a slew of meds for K. Music Child #2 (M) is 4. He was born at 33 weeks and is allergic to gluten. Music Child #3 is our blond bombshell… A. He was my first full term baby and is healthy as a horse. You know… the ones they don’t turn into glue.

We didn’t choose to homeschool because of the health issues (although that’s a perk) or because we are right wing christian nut jobs (though we totally are ;-} )… We did it because it felt right for our family. I worry a lot that I will be bad at it. I’m not worried my kids will be unsocialized weirdos. We are attempting to school on a small budget. The  blog is mostly to keep record and hold me accountable. I welcome tips and comments if you feel like following along.

-B-