how can we make that edible?

The current challenge: I am not allowed to buy anything at the store that is not milk, fresh fruit, or Bernie's lunches...because he can only tolerate my madness for 1 meal a day...for...well we will see how long this lasts. I have this problem where I think something looks fun to try and then it lands in the back corner of the freezer and gets all ignored until it is a very expensive ball of ice. And then I have to throw it away and it makes me feel guilty and sad. The freezer is this pile of stuff that pushes the 4 things we actually use over the edge every time the door is opened. And the extra storage shelf downstairs has canned goods on the brink of expiration hiding behind the same varieties that always get cycled through. Do you know how long it takes canned goods to expire? Freaking forever. So I started with a freezer re-org. The kids go-to meals get a shelf and the 45 opened bags of frozen vegetables get a shelf, as do the 4 varieties of fish and 3 opened bags of chicken. Tomorrow I plan to tackle the canned goods. If I get super ambitious I could come up with some meal plans to make the evenings go a bit smoother, but the 'pick an ingredient and go with it' strategy has been serving us well so far. Three meals in to the freezer rejects project and we have found some interesting combinations that actually might someday be repeated. Its like free food that we already paid for:


Tilapia Ramen
Ramen noodles (no sauce packet)
1/2 a bag of stir-fry vegetables w/ assorted sauces
broiled tilapia filets w/ garlic powder, chili powder, onion flakes

Crock-pot Turkey Chili
ground turkey (I ignored the date that was rubbing off the freezer bag)
kidney & black beans
diced tomatoes
onion, green pepper, garlic, salt, pepper
chili powder, cayenne pepper

Fish Pasta (we will be eating a lot of fish...and pasta)
Spaghetti
Tortilla crusted cod
Stewed tomatoes (why I have 4 cans when I have never used a one is beyond me)
onion flakes
crushed red pepper
shredded spinach

The real challenge will be when we finish off the meat and pasta and are left with 38 pounds of frozen vegetables. Oh the anticipation.

Practicing patience (and a little vocab) amongst 22 month old maniacs

Yesterday the blender sent the crazies into mass hysteria. I hadn't turned it on yet, just pulled it out from under the counter. I wanted to make us a smoothie. I did not get to make us a smoothie. Ella is clinging to me with all fingers and toes then hysterically pointing at the thing gasping 'bye bye, away'. That is a three word sentence. Well done Ella. Clayton is clawing at my leg saying 'up up up'. Probably we are a little dramatic. Mya's pump is beeping (uh-oh) that its done and I look over to discover air all the way down the tubing, which means she has been eating air for some undetermined amount of time. That would be a pump - and mommy- fail. So I manage the blender 'away', fix some meatballs (which means equal parts meatball and ketchup) and vent the bloated child all while holding an average of 1.5 tearful toddlers. DADDY where ARE YOU! That was me calling, not them. We aren't ready for 4 word sentences just yet. Holy moly. I hear the crying deal gets better at around 4 and a half. Pray for our souls.

Some of our favorite words at 22 months:
car
bye bye
pwweeeease
momma
dadda
more 

Some of my favorites: 
capatiller (you can probably translate)
Mymy (for Mya) 
Mamas home 
ees (for yes)

Who taught you that?:
When a minivan drives by: momma
When a sports car drives by: dadda
When Clayton is bored with your presence: Bye Bye
When you are in Ella's way: beep beep

Who do you love?

Mama! That's how I was greeted last night as I came up the stairs for the hospital shuffle. Daddy worked on that over the last couple of evenings. My people are too cute. Ornery. But cute. All 4 of them.

Mya came home this afternoon. We don't have ketosis yet but ketones are registering so hopefully we can get there over the next few days. After that they say it could be a few weeks or a few months before we know if the diet will have any effect. She is still seizing. A lot. It is hitting us that this isn't just a little change in routine. The nightly pill crush will take longer, measuring formula to the gram is a lot different than pouring it from a bottle, just priming the formula left in the tube after the bag empties until the machine farts out is not going to cut it anymore. She has to get every drop. We need to feed her on time and remember the shot of oil beforehand. We can't run to Walmart to get more food at 10 pm if we grab the last batch without registering we need more. But I want this to work with all of my heart. I want my little girl back. The one that smiled at me every single morning when I got her out of bed. The one that had an awareness in her eyes most of the time, not just on occasion. The one who wasn't so drugged up that she couldn't sleep, or couldn't wake up. The one who didn't cry every single day from the chaos in her brain. I know its a lot to ask from a can full of oil. And I know we don't always get what we want. But if I get a vote, I vote this works.

This week standing next to her hospital bed with nursing students and doctors and dieticians and other specialists in and out and poking and prodding, I was so proud of her. She was calling out and smiling and carrying on. She was precious and spunky and a little bit ornery. She was having at least 20 seizures a day and her personality was just shining through. Man I really want to see what this kid can do without them holding her back. Mya, I love you with or without the chaos in your brain, I just think it would be pretty great to try without for a while.

We have ketones!

Mya is making a slow and so far uneventful transition into ketosis. It will probably be at least another day before we have full ketosis and a ticket home. I am finding the diet pretty interesting. Yesterday I learned how to measure formula with a gram scale and adjust a feeding when she takes anything by mouth. Say she gets 2 tablespoons of applesauce and yogurt. Then she has to follow it with a 5 mL olive oil chaser into her tube. Any of the applesauce/yogurt combo she doesn't eat also has to go into her tube to keep the ratio precise. We came up with a chocolate chip/butter/coconut oil combination that actually sounds pretty tempting. I have a feeling we will be going through g-buttons pretty quickly in our house because how well can water really flush melted chocolate and coconut oil? When they put in the button they gave us all kinds of rules so the tube doesn't clog like no blenderized food, no crushed pills, liquid over powdered formulas. And we are pretty much breaking them all. 

Mya was pretty famous yesterday in the 2-year med student circle. She met 6 of them. She showed off her reflexes, demonstrated how tone in a sleeping CP patient is very different from an alert CP patient and taught them all about TTTS and IS. Well done madam. I myself ate a whole bag of white chocolate dipped pretzels. So that was quite an accomplishment. I am wondering if I can make a recipe of that for Mya. Pretzels have a lot of carbs though so that would be quite a chaser.

What is more exciting than untangling wire hangers?

Everything. The answer is everything is more exciting than untangling wire hangers. Okay illness and disease withstanding. And maybe long division. But I generally like long division. My consignment saling (sale-ing?? word? Blogger says no) endeavors have left me with hundreds of clothes to hang. The word on the triplet street is Jiffy Lubes and other assorted oil change places have them (they wear uniforms, they toss the hangers, yada yada). So I found myself delivering tires to various tire shops last week (long story involving snow tires in the garage and a stranded husband far from the garage) and thought, 'I need hangers and I am already here'. First stop I got 6. Second stop, after convincing the dude at the desk I was not up to general malfeasance, I got hundreds. In the back of my van. And then I forgot about them and proceeded to drive around town for a few days. Really bad idea. Yesterday I am walking to the van with my Trader Joe's bags and press the sliding door opener and wire hangers start flinging themselves out of the car.  Oh yeah, I guess I should clean this out before we have to load a kid in there tomorrow. What I learned: It would be better to get them 6 at a time because, though you may make 20 stops, you will not have to face the giant hanger ball. And, when you get frustrated with the tangled mess, shaking them only makes it worse. Do they have hidden magnets in there somewhere? Like seriously, I have a degree and there are several sets in the trash right now I just could not conquer.

Something else that is not exciting: sitting in the hospital with a healthy child awaiting ketosis (also not a word? That one I am pretty sure about). There must be a better way. I think it would be cheaper to send a nurse to my house 3 times a day for the week to take her blood and check her urine. I am rarely consulted on such matters. And I hope I didn't just jinx you kiddo because I know bad things can happen when you change how the body does important stuff like produce energy. We do not want excitement. Please do not provide excitement. Glucose level is 67. It was 81 earlier. I am off to figure out what that means. I'm guessing it means her blood sugar is dropping. Because we aren't giving her sugar. See we don't need to be here, I am brilliant. Hey I am bored ---> you are bored. I can hear the click of my readers unsubscribing. I will work on some better material.

Countdown to the lollipops - the accountability post

When we were fighting like crazy to keep Mya off a feeding tube I remember my motivation; when we do not have to do this, I will not feed her by mouth. I know myself. This day is busy enough and if something has to give, it will be oral motor. Bingo. So she eats once a week when OT is here, and in between I TRY to give her 'chewy' once a day to keep her tongue loose. Chewy is a little yellow 'T' shaped tube made out of rubber. You chew on it. Well, not you, although Clayton likes to sneak it now an again. Yo, bud, that's Mya's. I have lingering guilt. But who has time for guilt. We even made a dry-erase dot system on the fridge to keep ourselves accountable for the 5 daily-ish essentials (AFOs, Stander, Stretching, Chewy, & Eating). Still no. Once a week. You can judge me, that's cool.

Here we are 2 days out from keto when it will become infinitely harder to just drop in a little feeding work. My goal for the weekend: feed the child. She enjoys it I believe and I want it to be a skill she keeps. So my pledge: I will feed the child. At least this weekend. We are going to start with yogurt and applesauce. Pulling out the grinder requires an extra step. I will leave that for Sunday.

Eye on the prize

It is 4:17 am. You are your third diaper into the start of this your 3rd feeding of the night. You spent the last two and a half hours on the futon in their room trying to fit your 5'9" frame under the baby sized blanket that adorns the back of the chair and readjusting because you get up every 7.5 minutes to hold a pacifier in someone's mouth. They are 2 months old, they are a blessing and you can only think of one thing: please God, let these be babies who will one day sleep through the night. And they are! Fast forward 20 months. It is 11:17 am. In the last 17 minutes you have picked up the playroom, mopped up the spilled milk, filed the mail, moved the laundry and told the dynamic duo that IT IS NAPTIME about a dozen times. As you give up and retrieve them from their cribs with visions of the afternoon that are far more chaotic that the meltdowns of the morning you can't help but think, when do they get to go to preschool? Oh, I know, in 8 months!

I just signed Ella and Clayton up for preschool. (!!!!!) My mom asked if I was hyperventilating when this happened. NO! I was like...think of what I can do with 2 hours! I'm thinking Mya gets stander time, maybe some food that goes through her mouth and not her belly, I can vacuum my floor on occasion, hit the store. Heck, I might even work out. Okay, probably not. But I could. Two hours is forever in toddler-free time. I mean, look at what I accomplished in 17 minutes this morning. The church at the end of the street has a Mommies Day Out for 2-year olds that is two days a week. And we are pretty much at the end of the street so we will be walking there. Basically that is the only reason this will work b/c one of the two days they go is a day I work and our sitter does not have a car big enough for all three of the kids. I am not prepared for the logistical nightmare that is our future. Mya will go to our district's Early Childhood Center starting on her third birthday. She will be provided bus transportation, so assuming we get comfortable with the idea of putting a three year old on a school bus (yikes) it might be feasible to have kids in 2 different preschools. But we have another year before we cross that bridge. For now I am excited to expose them to life outside of this house and to peers who are more than likely going to challenge them developmentally. Oh, and for my 2 hours of crazy-free time. Come on September.

(And sorry about the excessive exclamation points. But preschool people!!!! I mean, they are practically in college!)

Lessons in Dental Hygiene from the 21 month old maniac

Oh Clayton, how I love you. I love your smile with that goofy grin. I love your belly laugh and how it is contagious. Your antics are trying and I love a challenge. I love that you dish it out but cannot take it for even a minute. I love that you bring a comfort toy to a crying sister. I love your kisses when the slobber runs down my cheek and your hugs when you refuse to be let down. I love that you play night night at all hours of the day and haul your blankie around like Linus. Your dance is amazing. I love how intensely you love cars, how you rarely waiver in your quest for a cracker, how quickly you learned that a cup goes up but still don't hesitate to throw it down. I love how you mastered the art of the trade. And I especially love how you brush your teeth.

Operation Organization

I have been feeling a bit claustrophobic. It could be that we were at maximum capacity in this house. And then Christmas came along. I bust a toe nearly every time I walk into the laundry room, which is our only storage room in the house. Our spare bedroom/office has become a dumping ground. Our kitchen coutertop is rarely seen.

So pinterest has been educating me on the virtues of organization. Well that is great, I usually think, but a person has to follow through for it to actually work. I struggle on the follow through. But I did pull a few take-aways out of the beautifully organized spaces I re-pinned: have a space for everything and clutter attracts clutter. And I created another: have temporary housing if you know you won't get it to where it really belongs. Because really that is where most of our counter-top clutter comes from. We open the mail and know we need to file it, but the filing cabinet is in the basement, under the piles...where I have to bust my toe. Or we open a bill and know we need to pay it and then somebody steals somebody's toy and it is set down on the corner of the counter, where it makes new friends.

So to tackle the basement I am following through on my goal to sell at the Spring triplet consignment sale. I have already made it half-way into organizing the outgrown clothes. The crazies' closet is looking a hundred times better already. In fact, pretend closet naps are Clayton's new favorite pastime. The quiet time that has brought this house has been worth the effort in itself.

And to tackle the kitchen, introducing my new, nearly complete, organization station:

The key, I think, is the filing folders so that everything has a home, even if it is temporary. I am in search of a little blue fabric basket to hang on the key hooks in place of the bucket to collect the little things we use that usually sit on the counter top, like Myas chapstick and chewies and the digital camera. So you will have to use your imagination. If you find yourself inspired, because I aim to inspire: Target. Now we will see how long this lasts.