One more week down…

K hasn’t discovered a great love of reading yet. But the boys have picked up a few site words, so I will call that a victory for reading this week. Another blogger posted a comment suggesting some read-a-long audio books. So I think a trip to the library this weekend is in order. I have some books to return this week anyway. Maybe K can get her own card. Then when I forget to turn things in on time (which is pretty much an inevitability) they wont fine me. haha.

All the kids are making some great leaps with math. And Chinese. A is especially great at sponging up this new language. Mr. Music pointed out that as a 2 year old, likely it seems only as much like gibberish as my using new or big words in English. The older kids are more concerned about what the lyrics of each song translate to. A wanders around my house singing in Chinese non-stop these days. I caught a video for facebook the other day. Which I may have already mentioned here… Sorry if I did.

The kids are slowly but surely memorizing the 10 Commandments. And have been enjoying Bible stories and songs every day. And I started teaching them the days of the week. Since they don’t have the best concept of time. They used to think it was a new day every time they took a nap. And had no idea what “yesterday” or “tomorrow” really were. So we’re miles ahead of that, at least.

My bestie suggested we do a field trip soon. Of course I’m a jerk so I’ve already forgotten what her idea was. But field trips are always a great idea! So hopefully we’ll plan that out. I’m looking into a local pumpkin patch to visit. For fun. Any ideas for making that more educational? I’m thinking “writing prompt” for my 6 year old.

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Sick Day

We have a sick day going. The kids have been doing well up to this point. We found the 10 Commandment Boogie by Go Fish and have been working our way through memorizing them. And we added body parts and counting to 10 to the list of things the kids can do in Chinese. Plus a few more songs. A was singing Wo De Peng You Zai Na Li the other night in bed. I couldn’t figure out why he kept calling our number magnets “E” and “R” and then I realized he was just using them in Chinese. 1- Yi and 2- Er.

As far as our sick day goes, A woke up with a cold yesterday. Which isn’t particularly unusual. They are small kids. It happens. The unusual thing is that K is sick too. I know she has a chronic illness for which we keep her immune system suppressed… But she NEVER gets sick. I can count the number of times  she has had the sniffles in the last 6.5 years on one hand. I have to admit to a mild fear at the knowledge that she is sick. Migraine. Fever. Nausea. This is new territory with K. Honestly, our family hasn’t had the flu except when I got it while pregnant with A. We don’t do really sick. I’m hoping a little tylenol and a day in my bed will sort her out.

Week 2 (the first half) In which there are fish

We have a pretty good schedule going, in my opinion. The core subjects are done every day. And then we alternate in science experiments and lessons, time with puzzles and just whatever catches our interest. The kids are catching on with their Chinese faster than I anticipated. And in ways I couldn’t predict. My two year old has been singing songs and using phrases he picks up on Kai-Lan when he’s just watching TV, and I think it’s because we have had a lot of extra language exposure the last week. They can easily sing all the words to Ni Wa Wa, and Two Tigers. Recognize a few others. And can identify weather, living room furniture and some body parts. So I started teaching them a body parts song. I figure we can start playing Simon Says.

K has yet to show much of an interest in reading. She does her best to avoid it. But she’s good with her sight words on flash cards. So we’ll just keep working on it. I figured she’d love to read because I do. I told her that Belle loves to read, which is why The Beast gave her that library. I’m hoping that inspires her. It probably wont. She has no problem sitting down to do her math workbooks though. And she’s trucking through them with relative ease.  We also do counting songs. Count to 100 by 1s, 2s, 5s, and 10s. The boys are easily counting to 20. Everyone recognizes the alphabet in lower and uppercase.

School seems to be going well thus far. Not nearly as frustrating as I expected. I imagine that will come later. Especially after a conversation with K in Costco the other night…

“What kind of salmon is that?”

“It’s not salmon. It is tilapia.”

“What kind of salmon is tilapia?”

“It’s not salmon at all. It’s a different fish. It’s tilapia.”

“Well what kind of fish is it?”

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.

 

Week One

We didn’t do a full week of homeschool this week. Instead opting to copy our school district and start on Wednesday. So far, the children seem to be really enjoying themselves. I allow the boys to come and go from the table as they please (as long as nobody is sneaking crayons, glue or scissors away when they go) and keep K focused on her activities through the morning.

Day one was a little nerve wracking, to be honest. But we got up at 7am, as per usual, and started school at 9am. After coffee, breakfast and meds were had by all. Which is not to say everyone got coffee and medicine. I got coffee. K got the mmf, prednisone, ursodiol and bactrim. Everyone had breakfast. We started school with Chinese. I’ve found that doing the two short “Follow Jade” lessons on YouTube yields quick results. We also listen to a few songs. Day one I taught the words to Ni Wa Wa. And did some Living Room vocab. After Chinese was Bible Study. I introduced the story of Moses so we had some context for learning the 10 Commandments. This included coloring pages. Then we read alphabet soup, did a puzzle with upper and lowercase letters, and K wrote her name a few times. The boys just did the first letters of their names.  For math we counted to 100 (the boys stop at 20) and then the counting by 10s song. The boys wandered off after that, and K and I moved on to her addition and subtraction workbooks. For science, we covered the 5 senses. The boys came back. We did cut and paste from a magazine for examples of each sense. And then a fun little blind taste test. There may have been sriracha. We did lunch (the kids watch Magic School Bus while I cook) and then it was nap time for the boys so I let K play on Starfall on the computer in my room.

Day 2 was more impromptu. I followed the same basic schedule. But after a stormy night, decided to focus more of the lessons on that. I taught the kids about rain, thunder, lightning and the water cycle. Our new Chinese words were cloudy, cloud and rain. We made pictures of rain clouds with construction paper. Our bible story was Noah’s Ark. And so on.

Day 3- The children were less enthusiastic about starting today. So we stayed in our pajamas. We did our Chinese. We kept on with Ni Wa Wa but also learned the Two Tigers song. I had to look it up because my littlest had seemingly picked it up from Kai-Lan and I wanted to know what he was singing. We worked on the 3rd Commandment. Learned about seasons. And made a (fall) tree out of construction paper cut outs of our hands. K did her workbooks. And there were a lot of puzzles. Lazy day.

And so concludes our first week. Tomorrow, I’ll blog about health stuff.

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-