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.
I’m back. Probably. For now. I knew this would happen. I’m the least reliable blogger. I’ve been meaning to update since Christmas pretty much and just have NOT made the time. Since it is pump day, I should at least mention that I did get some awesome pumps for Christmas. Although I haven’t worn them out of the house yet for obvious reasons. My husband bought me Christian Louboutins. The Bianca. And since I live in the great wet PNW, I haven’t let them venture past my front door. I don’t want to get into a big update-y post. But I think there are a few things to note… K has gotten significantly better at reading. M is a math whiz with great hand writing. And A is picking up on some math and sight words along with his siblings. He’s still mostly interested in coloring and singing, but what can you expect? We are considering sending the older two to a Christian school next year.
Everyone had birthdays over the last month. We’re having a party Sunday at our house. It’s set up to be quite some fun for the kids. Though I don’t have anything in mind for entertaining the parents… Oh well. We’ll pick up some snacks and just hang out.
For Valentine’s Day, I entered a contest by my favorite bra maker… and won. Which was a bit of a surprise for me… Giveaways are not usually my thing. I enter them but I have the creative capacity of a teaspoon generally speaking so I wasn’t expecting to win a contest. I got my shipping notification the other day. And in a week or two, I will have a new bra. For free. Awesome, IMHO. I also decided to try a second Polish bra company, just based on options for variety and great reviews. This I’m less sure will end up being a good fit. New company, new style (plunge instead of my favored half cup) and European sizing… Let’s call this a little adventure. That shipped yesterday. If there’s any interest, I can review both bras (although I’m not one of the people you’re going to see on the internet in her bra) after they get here. Actually, considering I don’t have a consistent readership as far as I know… I shouldn’t probably ask for interest. I’ll just review them and maybe people will stumble across the post and it’ll be helpful…
And ending my post with prayer requests…
The brakes on our car went out. We need a solution for that. A speedy one, I mean.
My husband just had a job interview… I’d like them to offer it to him with a nice salary.
And K’s numbers were up after her last labs… Let’s hope for the increase in her cellcept to bring them back down. And for remissions, while we’re at it. Her next appt is complete with an ultrasound. Hopefully things look good. That’s not until May, but I’ll keep you all posted.
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.
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?”
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.
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:
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):
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.
- Researchers discover mechanism behind development of autoimmune hepatitis (medicalxpress.com)