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.

Image

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.

Image

And here’s the finished product:

2014-04-23 09.03.47

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?

Raw

In addition to my usual household chores, I’ve spent a chunk of my morning researching raw milk. My SIL shared an article on the health benefits of raw milk. And it got me looking into local sources and prices. I’m pretty sure in the process I stumbled across my neighbor’s blog… apparently having written a post on the subject a couple years ago. Not that I know my neighbors. I live in the ghetto and tend to avoid people anyway because of my crippling social anxiety and awkwardness. Something I’m pretty sure is well masked by my cheerful, extroverted nature over the computer. I may not be cheerful. I might be sarcastic. But I think I’m nice, and I guess that’s what really matters. Anyway, I talked to my SIL about it a bit and think I might try convincing my husband that it’s worth working a trip to Tenino into the budget to get raw milk for drinking, and still using the store bought stuff for cooking. There are some local farms and stores that offer it, but $10-11 a gallon for a family of 5 is a bit much. Considering we’re making it just within our budget (if that) most months on just our usual food expenses. I’ve been sneaking us away from eating ANY processed foods (organic or gluten free included) and from grains. And since the higher the quality your meat and veggies, the more they cost, and our family is growing (the individuals, not the size of our family) our costs have, predictably, increased some.

Today I am wearing my new bra, to test out its comfort for all day wear, before doing a comprehensive review of it. Sneak peak of the review: I love this bra. Although my kids are kind of surprised to see me about the house in street clothes. I’m one of those stay at home moms who spends 90% of her days at home in pajamas. I’m a shut in. What difference does it make? Haha. I know Fly Lady would disagree, from what I’ve heard from friends. But it works for me. Especially since my wardrobe is pretty small. What if I waste a good outfit on a day I do nothing and can’t use it on the weekend?

Oh, back to the raw milk thing… Apparently there is a coffee shop in Port Townsend that serves raw milk by the glass for drinking, and in their cappuccinos and lattes. Mr. Music and I were just talking about maybe day tripping to PT soon with the kidlets anyway. You know where I’m totally going when we do. Since my littles (especially A) love Grandma’s raw goat milk, I’m pretty sure raw cow’s milk will seem like a real treat.

K’s cellcept FINALLY came in the mail yesterday. We switched to using a mail order pharmacy. It’s about the most annoying process in the entire world. And I’m pretty sure it’s staffed by morons. But it’s finally sorted out. I’m going to stick it out for now… but if they have problems with refills, we’re going back to driving to Seattle once a month. Because this is just ridiculous. Anyway, the cellcept. It came in a powder instead of a liquid. My husband informs me that shipping liquid medications has different regulations and they probably chose to do this because it’s cheaper. I’m ok with that, although I was surprised. The problem is the instructions. “Pour approximately 94ml of water into a graduated cylinder…”  Wait…. What? Who honestly keeps a graduated cylinder around? So I had to convert ml to oz to tbs before I could mix them. Overall, I’m just thankful it arrived just as we’d run out of the other bottle.

Health Background

Image

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:

Image

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):

Image

 

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.