Minimal Change Disease and its Maximum Changes

I started a blog because I felt like I had something to say. Mostly so far, I've just complained about how sweaty chasing around two kids makes me. Or the small triumphs that come across our days now and then that make me feel as though I'm handling motherhood the right way. 

But the big one recently - the one where nephrotic syndrome and Prednisone and "spilling protein" became normal terms in life - is one that gives me a lot to think and write about.

Just a few months ago, my little men looked like this:

Normal, right? Baby's a little chubby, big brother's not trying to kill him for once. And then we have a fever run through them in which Humphrey and I spent an evening in the ER, and Edison spends two days lethargic on the couch. Apparently after that, he started swelling. And swelling. And swelling. By the time we noticed it, it still seemed relatively mild and even the pediatrician wasn't worried. Edison was normal - just a little puffy. We do a urinalysis, just to rule out any problems.

When the pediatrician calls you herself, and uses the word "worried," and sends you immediately to a specific hospital to see a specific doctor, you kinda pee your pants, right? It's one of those moments where the adrenaline kicks in, and you don't feel any of the worry and fear and terror until way after the moment is over, because there's someone way more important than you who needs to be taken care of. 

I remember vividly a time where I was on a family vacation, and my then 3-year-old niece stepped on a fire ant hill while we were having lunch at a rest stop. She went from running around to screaming the kind of scream that made it clear that something was really, really wrong - you know if you've heard it. I sprinted to her, ran her to the bathroom, stripped her naked and ran her under the water, slapping the ants off of her until they were gone. Fire ants, if you don't know, can send children and the elderly into anaphylactic shock when a big old pile of them start biting. We were scared out of our minds. When she was alright, and stopped screaming, and we got some oatmeal cream on her poor little legs, I lost it. Freaking lost it. It may have been one of the most frightening moments of my life, but only became frightening after it was over and I truly felt the gravity of the situation. 

That happened with my own baby, Edison. After an awful night in the ER, a visit to the nephrologist, and successful response to steroid treatment, he was diagnosed with Minimal Change Disease, which is the best-case scenario and most common cause of his symptoms (and by most common they mean 16 in 100,000), but which also made him look like this:

My swollen little marshmallow. This is where we get to the fun part. Edison's kidneys decided that they didn't want to allow protein to remain in his blood, which is essential for nutrition as well as keeping water in the blood. So he was peeing out all of this protein, and the lack of protein in his blood was allowing all of the water to seep out everywhere else, hence the swelling. Steroids make this all better, and as an initial dose, they do a long (12 WEEKS) treatment before weaning him off, because research shows that a longer beginning treatment will lead to less relapses later in life. Later in life means that he will most likely have relapses until he's in high school or college, when he will suddenly "outgrow" the disease.

The fun part is what this means for us. We are ALL experiencing 'Roid Rage right now. I know Edison is the only one truly feeling what all of the side effects are (swollen cheeks/belly, flushed appearance, extreme hunger, mood swings, and all while being three years old and unable to properly articulate feelings), but we are ALL dealing with the behavioral changes. Tantrums last four times as long and happen for no apparent reason. Happiness turns to terror in less than two seconds, and our quirky little man has been replaced with an irritable, hungry version of himself. I love him so much, and I just feel awful for him, because there are moments in almost every day where there is just nothing that anyone can to do help him. Dinners have been spent with myself or Brian holding him while he cries hysterically, outings have been cancelled because he's just too wild, and Humphrey sometimes seems as though he's Edison's punching bag. We have daily urine testing, three different times during the day where we administer steroids or meds to counteract steroid side effects, and a three-year-old who says "Mommy, my kidneys aren't working so I need my medicine." If he gets a fever, it's now a trip to the doctor instead of a dose of ibuprofen. It's a suppressed immune system and us giving the stink eye to anyone with a runny nose.

BUT. 

It could be so much worse. The terms that are used with Minimal Change Disease are similar to cancer sometimes. His positive response to steroid treatment sends him into "remission." But he doesn't have cancer. And he's not (finger's crossed) going to suffer any permanent damage. And he won't die from this. 

He won't die.

I am thankful for this baby:

This baby is alright. His cheeks, hunger, and behavior are absolutely ridiculous, but he's alright, and he's going to continue to be. He has two parents who were practically throwing their kidneys at him as soon as a disease was mentioned, and a brother who loves and adores him despite being punched, kicked, and pushed throughout the day. Not to mention a ridiculously smart nephrologist who specializes in all of this.

I am happy today for medicine, love, and the best outcomes possible.

What friends?

The first time I started to really feel like a grownup was when my friends started having babies. The very first one happened to be a close friend, and I was thrilled. I was going to go to their house, stay up all night with the baby so they could sleep, and it was going to be great having little cheeks to pinch in addition to hanging out with my buddy.

Or so I thought, for a few months, until the little man was born, and everything changed. Not in a bad way - it was just...different. There was no more driving way too fast on the way home from the beach, blaring R.E.M.'s "Everybody Hurts" while waiting in insane lines on the parkway, hoping everyone would just do as the music video did (remember those?) and hop out of the car and walk away. There was no late-night partying in the city, and really just no more of anything as it once had been. There was this adorable little person, a set of tired parents, and a different set of priorities in life that no longer really included me.

Losing friends to babies, as it felt at that point, took adjusting. Hanging out happened mid-afternoon during naps, spontaneity no longer existed in these relationships, and it took months of planning to figure out when to hang out, and then dates were usually cancelled because it was too stressful, or someone was sick, or everyone was just too tired. 

Then it became my turn. 

I've been on the other side of the road for two and a half years now, and I think it's equally awkward. A few friends have stuck around and been patient enough to actually stay in the insanity of our household for a few hours at a time, suffering through dinners during which food may or may not have been thrown across the room. Some of them even pick up the baby, and play with the toddler, or at least don't look at us or our children as though we've become these insane, alien-like creatures now that we say "poopy" and we use the potty instead of calling it crap and going to the bathroom. I love those friends more than I can say, and look forward to being able to pay it back when they're the ones with screaming humans and flying food.

I've also had a childless person walk into my home, eat a meal cooked from scratch that I made while juggling both kids, look around, and tell me I needed a maid. No joke. I secretly hoped that the baby would spit up on this person's shoes before they left, but they didn't really bother to offer to hold the baby, or play with the toddler, or any of those things that the Helpful do when they visit. 

I've had the in-between relationship adjustments, too - the people who mean really well and invite me to dinner at 8:30 at night, with 20 minutes notice. They want to hang out still, but they want to hang out without responsibility. I always want to pinch their cheek, give them a knowing smile, and say "Oh, you just wait." Instead, I explain that it takes about six weeks' notice for me to plan a dinner date, and that I'm usually partially comatose on the couch by 8:30 so it would be best to make it closer to 6.

Where I'm getting at is that having kids changes friendships, and some of it is painful, but a lot of it bring new and unique joy. I'm not nearly as close to most of the people that I've called a "best friend" at some point in my life, and I'm sorry for that. It's my fault, and it's not, and really let's just blame it on the kids. I've also built new relationships with people that I would never have had any reason to get to know other than the fact that they have a small human in their life that's a similar age to one of mine.

So, to those of you with kids, I'm sorry if I was one of the non-Helpers before I had my own kids and had no idea how tired you really were. I now know how helpful it is to have the dishwasher loaded or the rug vacuumed or just to take a shower without worrying if one kid is trying to kill the other. And for those of you who've stuck around since we've had kids even though you don't have your own, thanks. Someday they'll be big enough to ship off to Grandma's for a couple days and we'll go on a cruise or bar hop like we're 21 again or have a ladies' weekend in Vegas.

I think moms and dads really are the same people deep down inside - you just have to peel through several layers of laundry, baggy eyes, and dirty diapers to find them.

Down But Not Out

This whole stay-at-home-mom thing is no joke. After 8 months, I have half a shred of sanity left, think everything smells slightly of poo, and have almost no adult human contact with anyone other than my husband. 

I've been interviewing for jobs lately, and I've actually really enjoyed the interviews, simply because I've been able to have intelligent, adult conversation. No one is screaming at me about wanting to do something himself, no one poops their pants at the conference room table, and an accomplishment is seen in increased revenues and prospect identification rather than making it through Target without a tantrum. The offices are clean, there aren't any cloth diapers lingering near the toilet, needing to be sprayed, and when you leave, you don't step on any Lego's, which are the worst kind of hurt possible.

I'm not built for this. I don't know how any humans are. For the parents who do this, and not only survive, but enjoy every moment of it and feel great at the end of the day...good for you. You are amazing, and strong, and I applaud you. Me, on the other hand...I've gained 10 pounds of the baby weight back after losing it. I haven't worked out since my first trimester with Humphrey. I haven't slept more than 6 hours straight in 11 months. At the end of the day, after putting Edison to sleep, my body crumbles, and on most days, the most I can do is grab a beer, slink into the recliner, and vegetate for an hour or two before going to bed. The kitchen is a war zone, there are six loads of laundry on the couch, and the cats may or not have been fed some time this week.

At the same time, I give a whole lot to the kids, as all parents should. I am with them 24/7 (give or take a few hours when they sleep...and with Humphrey, it's never more than a few hours at a time). We go to the beach, to the mall, to the park, to the bay...wherever Edison decides, really. I wear Humphrey in the Ergo and give Edison a piggyback, and sweat the extra 50 pounds hanging off of me. And we have quality time. SO MUCH quality time. I feel fortunate that I've had this time at home with them, so that we could really get to know each other so well (I went back to work after 6 weeks when Edison was born, so this is foreign territory). 

Because of my own needs and professional selfishness, I am hoping this quality time won't last forever. I need grownups and tangible goals and alone time. Maybe the right job isn't here yet, and that's okay. In the mean time, starting Monday, I will interview and hire a babysitter and join Weight Watchers. Maybe even take a really long, really hot shower. Or get a massage.

I am a little down in life right now, because my body and my heart have been committed to someone other than myself for more than three years (literally...we got pregnant the week after Edison weaned). BUT...I am not out. It's time to regain control of my body and my life!

Poo

Tonight, Edison used the "big toilet" as he calls it. Kind of.

We've been waiting to do the 3-day potty training bootcamp until we're sure he understands the mechanics of taking a whiz into the toilet, and so we want to have it happen once before we wait awhile and then throw him into the ring of fire. Who knows if this is the right thing to do or not. If you have kids, and have suggestions about whether this is a good idea or will make our child traumatized and wet the bed until he's 14, please weigh in. Honestly. I haven't done this before. I may claim to and act like I know everything in the entire world, but it's all a facade. 98% of the time I have no idea what I'm doing in most scopes of my life.

So...he occasionally expresses interest in using said toilet, but once he gets up there, he thinks it's funny, and it seems that when something may actually happen, he wigs out and wants to get down. He's admitted that it's scary for him, which is fine. We try to be comforting, but encouraging of the toilet's use, as well.

Tonight, the kid needed to poop. You can tell when it's going to happen in the evening because he wants to get down from the dinner table so he can go to his play area, or his room, and have some privacy to take care of business, even if it means that he doesn't consume anything for dinner except two bites of turkey chili and a swig of milk. Yes, we're at that stage where they go hide behind a chair in the living room, or a mannequin in target, etc. Thankfully, though, he doesn't seem to poop anywhere except in a house anymore, which makes diaper changes easy. Changing a two-year-old's diaper in public just feels a little weird now. Maybe the same as seeing a four-year-old sucking a pacifier while their mom pushes them around in a shopping cart. There I go, judging again.

Poop doesn't happen, so we move on to the always exciting and eventful Bath Time. While I'm arranging the baby safely in his new tub seat, Edison comes running in, saying he wants to pee on the potty. My husband then tells him to go get a book to read while he's waiting for the pee to come out. When Edison comes back, he really wants to get up there. Excitedly, Brian rips the snaps open on his cute little diaper, only to show that the kid is already mid-poop. Ga-ROSS. The rest doesn't need any explaining, but the kid you know, finished his business ON the pot.

It totally counts in my book, and we gave him all the love and praise in the world for it. Hopefully, even though it really was probably only a half-poo on the toilet, it will make the experience a little less scary for him, and he'll venture into the deep, dark world of urinating into a toilet.

On a serious note, I cannot handle my child being scared of anything. ANYTHING. Even peeing on the toilet. I'm that wussy, faint-hearted mother that will let her kid wear a diaper until he's six just so that I do not cause him fear. Because knowing a child is scared sucks, and is incomprehensible to my mind and heart.

Where's Edison?

Tonight I did a quick check of the 'ole Facebook, and came across a super cute picture of Edison's old buddies in Indiana. I showed him the picture, as I usually do when new ones come up, and his first reaction to seeing a picture of the three little musketeers was "Where's Edison?" For almost two years, he had become accustomed to seeing himself in pictures with these other children, and didn't understand why he wasn't there now.

My heart broke, and I felt like a terrible mother who had made a terrible mistake by relocating her child. I know this isn't going to be the last time we ever move, but if it feels like this now, what's it going to be like when Daddy finally lands "the" job, and we make a very permanent move while Edison's applying to college, or has his first girlfriend, or really likes his soccer team?

His life hasn't really been destroyed by our returning to the east coast. He's closer to family, and is particularly thrilled to see more of his cousins, but he doesn't have "friends" yet. At this point they're still just "friends" instead of friends, because if I didn't frequently jog his memory of his old buddies, he wouldn't ask about them or realize that they weren't there, or that he wasn't there with them. He knows the names of his old buddies, and some new ones, and his classmates, but he's still just as easily entertained with talking to his baby brother or Skyping with his cousins.

I've been on a bunch of playdates since we moved, to make sure Edison is still learning to socialize properly, but the moms are a lot different than in Bloomington, and I've found that while I miss Edison having companionship, I also miss my mommy friends.

The moms I've met here feed their kids Nutella and apple juice and think that they're meeting all of their child's daily nutritional needs because the Nutella was smeared on high fiber bread. Some of these moms give their child a strict diet of chocolate PediaSure shakes because they just aren't willing to make the effort to teach their son about fruits and vegetables, and the doctor told them it was okay. I've attended a baby "playdate" during which the host mother never put her baby on the floor with the other babies. I've been almost sneered at when someone noticed my kids were in cloth diapers (because it creates too much laundry, of course, because you're not already doing tons of it with two kids in the house anyway). I have turned off the television at someone else's playdate, because I was not attending a watchdate. Even the nurse in my pediatrician's office gave me a very shocked look when she asked how many ounces of juice my child drinks a day, and I told her zero.

I've also met a bunch of women and children who were super nice and down to earth (I even met one, yes one, other mom who breastfeeds), but on the whole, I don't fit in just yet. It still feels like there's something to prove, and that I'm playing catch-up on relationships that are solidly established. It's cliquey, and a little snobby, and it drives me to retreat back into my house to keep my kids at home as a family of hermits. I feel like a crunchy hippie with these moms, because compared to them, I am.

In Bloomington, I most certainly wasn't. It was the norm to give your baby mostly organic food, and to breastfeed (in public, no less!) for as long as you could or wanted to. Bloomington even had a store that was almost entirely dedicated to selling cloth diapers. A store like that would be put out of business here in about five seconds. Bloomington was full of doulas, and prenatal yoga, and a great Parks & Rec system with beautiful, clean parks. The moms were easygoing, friendly, and supportive of each other.

I'll admit it - when Brian was accepted to IU and we decided that we would go, I wasn't necessarily happy about moving to Indiana. Bloomington really is in the middle of nowhere. But...Bloomington is an AWESOME town in the middle of nowhere. You may have to drive 20 miles to get to the next town, but Btown offers so much that you don't really need to leave all that often.

If you know me, you'll know that I am a judgmental person. Not my favorite trait, but whatever, it's there. I was Judgey McJudgersons most of the time I lived in Indiana, but now that I'm gone, I realized that, for the most part, what I had there was fantastic. Great friends both for myself and for my children, and a super positive, natural environment for my kids to grow up in. The grass is always greener, right?

Nina, Justina, and Catherine, I miss you. A lot. And I miss your babies. And so does my baby.

I Don't Know How You Do It

Tonight I took both kids to the mall by myself, as my husband was down in Philly for a concert. I normally don't leave the house after nap to begin with, but we had stayed home for the entire morning, so I was ready to put on a real bra and breathe something other than diaper air.

Much to my toddler's chagrin, I told him we were going to have to go to that dreaded place that had a kids' play area and a merry go round. How could a kid not love the idea of this? Every single time I ask him if he wants to go, he looks at me like I've just asked him if he would like to eat a giant turd for dinner. Anyway, I convinced him to go by putting his coat and shoes on and putting him in the car. I'm very persuasive.

We got there just in time for baby to need to nurse again, so we hit the play area, specifically designed for children 5 and under, which is always heavily populated with children 5 and over, roughhousing and running around and nearly taking the lives of the toddlers and little ones who actually belong there. Don't you worry, I give the parents of those older children dirty looks the entire time. If you are one of those people with a seven year old running around in there, shame on you. I get it that you may have a younger child who DOES belong in that area, but make your older child sit there on the bench with you, or closely follow the younger child, but don't let your kid run around knocking over babies who've just learned to walk. It drives me and every other mom with a child within the age and height limits nuts, if you haven't noticed.

Back to our journey at hand. I make it through to the play area without ramming into too many people with my giant double stroller, give a few stink eyes to a particular family who had not one, but two older boys running around (seriously?!), and sit down to nurse my baby. This coincidentally took place after I had pulled into the mall with my favorite radio station talking about this very subject - breastfeeding in public, and how people feel about seeing it or doing it. It was hilarious to hear two grown men talking about this, and saying things like Lactation Consultant and "proper latch", and actually yelling at a woman who was "disgusted" by seeing a mom who just whipped one out to feed her baby while shopping at Target.

I'm not going to throw my two cents into the conversation about this. I nurse in public, but I do it with a cover or a blanket, and try to be discreet about it. I may have flashed a boob here or there, or thrown the cover off in frustration after the baby and I are both sweating from the enormous heat bubble that a nursing cover can create, but largely I try to keep it private. I will, however, go mama bear if you look at me funny or even think of asking me to go do that somewhere else. No one around here is going to be having lunch in a bathroom stall, my baby included. Whatever, moms. Do what you want, feel how you feel. I don't care if I see your boob. You're feeding a kid, which is the important part. And as they said on the radio, it's probably the same amount of boob as you'd see on the beach, and at least it's serving a purpose here.

Returning from the sidetrack. I feed the baby while also standing up several times to make sure my toddler doesn't fall off whatever he's trying to climb, and also to protect him from the giant monsters running all around him and threatening to make him teeter off of the pretend pony he's riding. No one cries, no one sweats, and when I ask the eldest if he'd like to leave the play area to go find dinner, he simply says "yes," runs to the cubby where his shoes are, and says "here you go, Mommy," so that I can slip his shoes back on. I look awesome enough that some other mom actually looks at me and says "I don't know how you do it!" I smile at her and, giggling inside, say "I don't know either!"

But I do know. You know how I do it? Caillou. I used to be against television in our house entirely. Before turning two, I think my toddler had watched maybe two hours of television in his entire life. After baby 2 came along, and Daddy got a bunch of jobs that made him disappear for 18 hours at a time, and I became a stay-at-home mom, I gave up. I let the kid watch a show. He picked Caillou. We watched Thomas for a bit, too, but after a few weeks I think he figured out that those trains are creepy weird, and never asked to watch it again. Thomas' voice is really, really annoying anyway.

So Caillou. It's a harmless show, except that Caillou is super whiny and doesn't have any manners when he speaks, and his mom seems to NEVER be paying attention to her kids (there's actually an episode where she tells Caillou to stop playing so loudly because she's trying to read a book). It's still less annoying than Barney, and less trashy than Spongebob, and one of the few wholesome shows for toddlers that isn't very long. These 26 minutes (a day - none on a good day - twice on a bad one) save my life and allow me to be human. I can put the baby down for a nap, take a shower, and start a load of laundry all in one episode of Caillou.

We got to the mall because Caillou let me take a shower, feed the baby, dress the toddler, pack the diaper bag, stuff the stroller into the trunk, all without too much screaming, throwing of food or toys, and demanding this or that. We were all happy once we got into the car. Happy to be out of the house, happy to be together, and happy that we were all alive and generally clean. Mommy being showered, baby being well rested, and toddler being entertained are how we do it, mall lady. And we have silly little Caillou to thank.

Laundry Couch

Today's entry pays homage to my dear friend, Laundry Couch.

Laundry Couch provides me with much needed space on which to store the many loads of laundry that I produce in a week. Laundry Couch may look like a space to sit on, but that only applies to you if you are a cotton or polyester blend, size 2T or 3-6 months.

When we moved into this home, it was...err...partially furnished, and not to our asking. It's a 'free living' situation provided to the minister of music (a.k.a. my husband) at our new church. It was formerly the parsonage for the church, but the parsonage has since officially moved to another town, as the pastor didn't always want people knocking on their door with questions, comments, prayer requests, etc. This is now our burden to carry, although I do believe I've taken care of that - we haven't had any unexpected guests since the last time I answered the door, in my underwear, holding the sleeping baby, whispering to the women at the door and looking around suspiciously, hoping not to wake up the sleeping toddler down the hall. When I answered, I honestly thought my husband had just forgotten his house key and was home from work. Oops.

So, we moved in to the old parsonage, and were 'blessed' with a whole lotta furniture and religious relics that we really weren't interested in retaining. It since has all been removed, except for a baby grand piano yet to be dealt with (anyone want it? Not worth anymore more than its ivory keys, but it has genuine ivories...please???), and a couch and recliner which we chose to keep. The couch has since been named Laundry Couch.

It's very, very easy to do laundry throughout the day, as it takes about 3 minutes total involvement - throw the laundry in while the water fills, toss it in the dryer, hang up a few things here and there, and voila, it's finished, warm and fuzzy in the dryer. Folding and putting away laundry, though - that's another story.

I do at least a load a day - sometimes three or four if I'm inspired and if I've worn the same pair of yoga pants three days running and can't find anything else to put on my lower half. It's also pretty much impossible to get through a day without doing a load when you have this on your hands (as well as an infant who regularly spits up all over himself):

Laundry Couch happily houses my laundry while I'm unable to get to it other than to quickly sift through for yet another onesie, or my next stash of burp cloths and bibs. It's amazing, and I want to thank whoever left it for providing me with the best laundry storage area ever.

I get around to folding the accumulated loads probably twice a week. It's one of my favorite evening pastimes (not really). A pile, as you'll see below, contains five or six loads and takes me probably about two hours to fold, but I can get two and a half episodes of something watched while I do it, which is lovely. I usually kick back with my friends from Lost, categorize and fold the massive pile, and put what I can away, which typically means I look at the folded laundry, relish in my powerful domesticity, and say, "Ahh, whatever, I'll put it away tomorrow." The folded laundry will remain neatly stacked for a day or two until more loads need to take their turn on the deep, wide cushions that just look made for holding them.

Here's to you, Laundry Couch. I look forward to sitting on you.