Three, Two, One, Vinblastine

Yesterday (Friday), Elijah *finally* had his last planned dose of chemo. In three weeks, he will have a full-body PET scan, and if it is at least as good-looking as his previous scan, then he will go to an observation schedule of check-ups every month, then every three months, then 6 months, then annually. He has about an 80% chance of staying well, says Dr. B. He would be likely to relapse sooner than later, so they will probably leave the port in for a few months. Dr. B. said after three years, his chance of relapse dramatically decreases.

The interesting thing Dr. B. said about the PET scan is that it does not have to be completely clear - just mostly clear. That takes a load off anticipating the scan. Now, after all this, am I excited? Meh. I'm quite glad the little guy won't have those nasty drugs in his body, but this hasn't really felt like a "weight-lifting" moment. Brian reminded me that it's a good thing. Our big-sigh-of-relief moments had been coming after re-inflated lungs and such. His progress has been so protracted that a last dose of medicine is pleasantly anti-climactic. Plus, we are probably holding our breath a little bit for the scans. Plus we have been in "cope" mode for so long that our leaps for joy are probably more like tentative skips. Plus we generally feel great about his condition and don't expect any surprises. Plus, the only thing that will change in our routine is the absence of medicine; we will still take monthly jaunts to visit our clinic friends.

I have a nearly-irresistible urge to skip his last week of Prednisone. I am to give him 9 more doses over the next 4.5 days, to accompany his chemotherapy. That stuff makes him absolutely bonkers. Then, there is the Zantac to protect his tummy and the Hydroxyzine to help *us* sleep, because none of us can rest with his steroid-induced Brownian motion. So, that's the hard part of 10 milliliters of repugnant liquid to get a twitchy, cantankerous toddler to swallow. If I'm sneaky, I can get the first gulp to take him by surprise. He fights the second squirt, pocketing some in his cheek long enough to convince me he's swallowed, then blow-holes it before erupting in a spirited cackle. On the third attempt, his face is whipping side-to-side so quickly, I can scarcely locate his mouth. I visualize my next move, waiting until he pauses, and I launch my medicine missile. Typically, I then shuffle to the sink to wash my empty syringe, hoping he'll absorb enough from the puddle in his ear to do the trick.

23

The Lord is my Shepherd. He has provided.
I bask in the wholeness of my family, drinking up my sons and finding in each a unique and intoxicating bouquet. Again I smell, kiss, envelop the child for whom I've trembled. He grows so strong, snuggled in his garments, the tightly-knitted prayers of a multitude. His laughter is a resounding praise to the Architect of galaxies and dragonfly wings.

I exhale into a pillow of His calm refuge. I feel warm rays of relief seep into the window of my soul.
I search my heart for the will and wisdom to teach my treasured ones Your love, for it is all that matters.

I have crawled to the edge of a ravine so fearful and desolate, at which my eyes plead to never again glimpse. Yet, when collapsed on my knees in helpless petition, how much closer I am to You. Your rod has steadfastly conquered lions. Your staff gently nudges me to safety. I am secure in Your stronghold.

I am blessed beyond measure. May I not fail to seize an opportunity to fill another's cup.

Holding hands, my husband and I take humbled, hopeful and passionately prayerful steps, guiding three precious little ones toward manhood. We rejoice that You will persue us with Your love, every breath of our lives, for we are but ignorantly wandering lambs. May we five relentlessly look to You always.

Where, Oh, Where is My Ultimate Life-Logging Solution?

I need a life-event narration conglomerator. If I could get a smart device to capture all the stories I recount by mouth, by text, by email, by Facebook status update, and by Blogger, and jam them all into one place, I'd be ecstatic. I want to include the boys' funnies, my favorite recipes and baby gadgets, our adventures and all other sorts of life bits. I'd love this to be my spot. I think. I'm mostly consumed by the thought: Will my boys care to know about themselves (and other parts of my life) some day, and where can they be assured to find this information?

I have them set up with emails that I send stories to, on occasion, so if they all have links to this, or perhaps an exported file of these ramblings, maybe that will work. Who knows where technology will be by then. Is this like saving them an 8-track mix tape? I love the feel and process of writing in paper journals, but they aren't searchable and heaven knows they would need to pay a cryptologist to decipher my handwriting.

This takes so much discipline and perseverance, and a compatible baby, who currently is enjoying a repetitive loop of nursing for 4 minutes, then playing for 2 minutes, before clawing back at me with his teary demands. Now I need to go write to the Facebook people for a log of all my posts that I can paste into this. Oh, that was a good laugh.  I'll go find 'em myself.

It looks like I have another 2 minutes to scramble. Even Ian has figured out Elijah's favorite pastime. He observed: There goes Elijah looking for more paper to eat.

p.s. I will now go *grunkle into my new life-changing device. You do not know this, but I have the power of retro-inventing. I invent things in my mind and they appear as someone else's recent-past invention. I stomp my foot that I won't get paid for it, but move on to the pre-fabricated solution, resigned to the fact that I'd have been too lazy to figure out how to make it exist.

p.p.s. This particular instance of retro-inventing might involve the use of a time machine and a brain implant that has allowed me to download selective bits of memory and Oculartography and convert them into the 2010 HTML text version.

*You will have to search my blog for the meaning of this word, if it is not apparent.

Girls can't rock?

So, the story starts with me dancing to a song in the car. Ian says, "You're not a rock star, mom." I asked who, then, could be a rock star. He replied, "Boys are rock stars. Girls sing slow songs." As soon as I got home, I was set on shifting his cute little paradigm with some good ol' Joan Jett. See if you can catch his words at the end:

Galoshes Have Other Uses Too.

Here is a comic strip that really nailed it and I have been giggling at it for a while now. It is Baby Blues from May 30, 2010.

This has been the story of most of the last 3.5 years of my life and counting. Elijah has entered the "acrobatic nursing" stage, now that he's big stuff and can crawl and is starting to cruise. He has 2 top teeth and is cutting a third on the top left. I think there are two cutting on the bottom, but it looks a little odd, so who knows what will show up. He's saying "Dada" and "Hi Dad" and has finally started saying "Mom," though I've been consoling myself with the fact that he often says "Da" from my arms, so, really, I win. I'm straining to find baby genius here, but he was making short "ha" sounds (as in hat), and he grabbed my hair and it changed to a long "ha," like "hair." If I work hard enough, I could probably decode a secret message in his floor pounding, too.

Isaac is enjoying another bout of teething too. Every now and then he pitifully whimpers, "I need mecine for my teef." Teething tablets are great! He is on the verge of being potty trained. I didn't think it was going to stick, but I stuck underwear on him again. If I had asked him if he wanted them, he would say no, but when I brought them to his feet, he stepped in without complaint. That was after leaving his diaper off for a few days and letting him watch lots of TV on his training potty. When he woke up with a start the other morning yelling, "I want big boy underwear on!!" in protest to his night time diaper, I figured we were getting somewhere. We've even ventured out with just our brave little undies on and only filled our rain boots with urine once. The training process has caused, of course, a bit of a fixation on all things potty, above what already existed. Isaac came into the living room and looked at his dump truck that had some mud on it and blared, "My truck has yucky poop on it! I can smell it!" He and Ian play the I'm Pee, You're Poop game and battle it out. Or, on evening walks, they squat every hundred feet or so blasting, "Toooooooot!"

Ian has been practicing defiant refusals, negotiations and fake crying. Sometimes he's baby dad to his little brothers, correcting their "dangerous" behaviors. Last night, he had asked for a bath, but ran off playing and when it was time to crawl in bed, he again asked Brian for a bath. Brian said no and had him lay back down in bed, igniting a grand fit from Ian. After wailing for a while, Ian recounted the situation, "I asked Dad for a bath and he said no, and I cried and cried and Dad pushed me on the bed and said bucket-dipping words and my feelings went down the bathtub drain." Boy, he can lay it on.

Rock Away Owie

In the car the other day, I heard Isaac singing a sweet little tune. Curious, I listened closer to hear him singing, "Stomp on the baby, stomp on the babyyy." Ian followed suit later that day crooning, "Destroy all the books! Destroy all the books!" My house has become Decimation: The Musical.

Last night Ian was riding his bike around the house and he crashed into a wall. Brian tried to consoling as Ian yelped in pain. Brian asked, "Would you like me to kiss your knee?" "No." "Would you like Mom to kiss your knee?" "No," Ian replied as he walked across the room to his toy guitar. "I just need rock 'n roll." [Proceeds to jam]

We're having a blast this weekend. Aunt Ashley is visiting for a couple days before she goes to her NASCAR race. She's the first person they've voluntarily spent the night with. She is Isaac's buddy now. Isaac cries about nap time and says pitifully, "I want Ashwee." That was strange to have enough room to sleep. We drove up to Atlanta and met an out-of-town friend and his bride for lunch, as they were in town for DragonCon. Next I took Ashley and the boys to the new World of Coke, since she hadn't been to the new location. We frightened the boys with 4-D movie experiences and drank ourselves sick on carbonated sugar from around the world. And just for the record, Beverly is not the strangest drink on the list. A number of times I said "ew" more passionately with other flavors.

In the car that evening, Isaac pitifully stated, "I'm nerbous." We asked if it was the movie and he said it was, but he also said it was about dinner and about his sandals, so I think he was just feeling agreeable. He wouldn't take his eyes of the movie earlier, though I did have to surgically excise him from my arm when it was over. I think it was the loud hissing of air that bothered him most.

We tried to take some cute/silly pictures today before Ashley leaves. I'm getting less effective at getting the boys to look at the camera or to smile, not to mention both at the same time. So, we have a collage of shots with Elijah flashing his best GQ and Ian tasting grass, while Isaac showed his lack of amusement.

Actually, we did get a few really cute shots.

I'll Be in the Powder Room

He's crawling! I would probably call it official since Friday. I'm in for it now. They can officially take off in three different directions. Prior to Friday, Elijah was "migrating." By lunging and turning and sitting, he would get around a little bit.

His last chemo visit went well. His blood counts were basically normal and he had another dose of  IVIG. The doctor said his levels were rising enough that he might not need it again.

You'd think I was intentionally averting my attention from my 2 and 3 year old, just to see what interesting thing they'd do, based on the stuff they accomplish. That's tempting on some level, but, no. They have plans ready to execute, the moment I nurse a baby or take a shower. The other day, while I was holding Elijah and folding laundry (doing neither very effectively), Isaac got the baby powder out of  the changing table pocket, and powdered the entire kitchen and himself. I sent him upstairs to play and, planning to clean the kitchen when Brian came in from mowing, I sat down to nurse the poor, famished baby. Ian sneaked in, and thinking Isaac's project hilarious, he snitched the baby oil and painted over top of the powder. I only caught him when he poured the oil all the way to the living room and started shaking it on Elijah's head.

Usually, I'm good about waiting until the last minute to mention plans to the boys, but this time, my mixture of excitement about Disney and wondering if it will thrill or terrify them, has weakened my resolve. Now, every time we pull into a parking lot, Ian asks, "Is this Disney?" Last week, he put on a Handy Manny costume from 2 years ago and vowed to wear it to Disney. After two straight days, I was starting to think he was really going to leave it on until our trip. It wasn't until I got him pirate and fireman pajamas that I convinced him to take it off.

I'd like to take the boys to the Bodies exhibit. I went before and it was really amazing. Since Ian has been asking all about bones and muscles and all, I think he'd really get into it. I tried to get Brian to go last weekend, but he came up with lots of reasons not to. It turns out he just doesn't share my fascination.

Two Steps Cleaner, One Step Disaster

I turned on my computer and Ian announced, "It's time to plaay FAM-il-y Feud!" Am I addicted?

The boys had a lot of fun today, but in the way that mom...well, not so much. While I prepared Elijah's dressing change supplies for the home health nurse, I hear the boys sounding dangerously happy. I entered the kitchen to find Isaac pouring water out of a bottle I had left on the counter and Ian was stomping in the puddle with his galoshes.

While I was preparing some black beans, I saw Ian grab some grapes out of the refrigerator.  I didn't see Isaac grab the strawberries. Now I have a carton full of strawberries with one bite taken from each of them.

The ultimate offense took place as I was putting Elijah down for a nap. I had spent hours folding about two years-worth of laundry and stacking it on the ironing board, my most recent attempt at keeping my folded laundry out of "their" reach. Yes, they dumped it over and were playing Pirate Ship in the pile.

Yesterday, Ian renamed everyone. Of Elijah, he said, "I'll call him Flapjack." Isaac is Captain and Ian is Luckie. That must've been only yesterday's names. I haven't heard them again.

Brian tried to round Isaac up for a change and Isaac ran off bellowing, "You'll never find me now!!"

Elijah is preparing to join the fray. Whilst he cuts teeth 3 and 4 on the bottom, he is trying so hard to crawl. He goes from sitting to reaching out to just barely on his hands and knees before he either returns to sitting or lands on his belly. He's also pulling up on things to his knees or feet. Oh boy, I'm going to be in trouble!

Well, the house is creeping into presentability, in spite of them, and I can't wait for my date on Thursday!

If you start using the potty, I'll laugh at your poo with you.

Scrubbing poo out of the carpet before breakfast is not the best marker of a good day. That's OK. I'm keeping my eyes on the Prize.  We are planning our escape to an undisclosed location *.* at an undisclosed time. Having bumbled through the morning with my free-day-at-the-children's-museum virus, I put the kids down for a nap. Tip-toeing to the toaster (sing that in a squeaky voice), with my non-napping baby in one arm, I almost wish someone was witness to my deftness as I yank the toaster lever up, sending my horribly wonderful toaster pastry prize into the sky, high enough for me to snatch it with the same hand. Mmm. The only thing more rewarding than evil treats is managing to gobble them without the boys noticing.

Junk-snacking is not a great idea. This bug already botched my new workout routine after only one trip to the gym! I figured I'd be nice and not share our boogers with them. Interestingly, it seems the last time I had a bug was also the last time I blogged. I'll try not to make that a habit. I've also been "partying" with an over-clocked thyroid, which doesn't make me the friendliest mama on the block, and...also has me constantly seeking a sugar fix.  Oh leetle vacation, where are youuu?

If anyone is keeping a list of things moms/wives don't care to hear, I have a few you can add.  They range in severity from "*sigh*" to "OMG I don't ever want to hear that again."

1. Toddler saying: Mooooooom! Change me! Change me! (accompanied by a squishy trail of special effects)
2. Husband saying: Your toothbrush is awesome!
3. Toddler saying: Dad! Let's play poop! (proceeds to crawl between dad's legs, saying "poooo-oop!")
4. Toddler in bath hollering to me in next room: He he he! I'm tickling myself mom!
5. Toddler to dad: Take! I taked your penis and now you have a 'gina! (I think we're a little obsessed with "down there" right now)
6. Pre-schooler saying proudly: Look! I made a golf club. (holding up carefully torn page from a book)

So the other day, my sweet love sent me a business-romantic meeting request for a 7-hour "special event" that requires a sitter. I don't really care at this point if it's grocery shopping. He's made it so...intriguing, so...mysterious. I'm ready to grab my cart and go! Actually, he's a great "picker", so I know it will be cool.

Guess I'll go Neti the Drooling Yeti (i.e. irrigate my sinuses).

I need a Tuesdayectomy

Apparently the unpublished price of admission for Vacation Bible School is one fever for each participant, to be distributed immediately to said participant's doting mother. Well, I haven't had Ian and Isaac's fever *yet* but I did acquire a sore throat and a certain bleariness. I suppose it was worth it to observe Ian's carefree joyful participation, albeit his own version of participation - mainly consisting of bunny hops and skillful dance moves around his peer group.

Elijah has been working on some sort of rash for a couple of weeks. At first I thought it was a heat rash because he had little red bumps in his elbow and neck creases. However, since then, its covering his whole body and he's itching like crazy, since last Friday night, at least. Not sure if it's an antibiotic allergy, a virus or just dry itchy skin. The skin under his Tegaderm is breaking down and he scratches at that a lot too. We've experimented with different dressings - Bioclusive and now some Duoderm under his Tegaderm.  I've also wrapped his chest in 3" Kling and made little "wife beater" tanks out of some tube gauze to keep it all contained. All wrapped up like that and sporting some socks on his hands to disable the grabbers, he looks just like a little prize fighter.

Between Isaac's fever and Ian's fever, we took our first overnight "micro-cation" since Elijah was born. We drove up to Dalton Saturday night and stayed in a hotel so we could spend the next day in Chattanooga. Ian had been begging us for  weeks to stay in a hotel. We grabbed Chick-Fil-A on the way up and arrived in time to swim in the pool before bed. The indoor pool deck was incredibly slippery and Isaac slipped and fell three times while walking carefully. The last time, he hit his head and we decided we'd had enough of that. We instead went "swimming" in the room. Our room had a giant whirlpool bath in the corner of the room, so the boys splashed in there for a few minutes.  We actually managed to get Ian to sleep in his own bed. When Brian rolled in the spare bed, Ian thought it was the coolest thing ever and immediately claimed it. The boys jumped on it a bit and when Brian said it was bed time, everyone tried to pile into our Queen-sized "King" bed (we were told it was a King, but sure seemed small). We had to resort to the conniving tactic of starting to offer the extra bed to Isaac to engage Ian's jealousy switch. Ian ultimately decided to take the bed and slept there all night, though only under the condition that I draped an arm down over him.

Sunday, we had a non-adventurous brunch at Five Guys, before continuing to Chattanooga. I forgot to mention, we chose Chatt because Brian's dad is doing some work in Murfreesboro, and it was a good halfway point to hang out. However, he, unsurprisingly was quite a bit faster readying himself than our circus of five, so he actually met us at our hotel. In Chatt., we grunkled** into a walking bridge, so we parked at one end of it for $3, loaded every possible contingency item into our stroller and headed for the bridge (**The term grunkle is a word of Skinner-family origin, meaning to fortuitously encounter something while traveling). It was so hot we were afraid we'd been forgotten at the Second Coming.

Near the foot of the bridge was a sign for a glass bridge to the right. I had to experience that. I hefted the stroller up the ramp and onto the bridge. I paused at the apex and told Ian to climb out of the stroller and look down. I wish I could describe all the thoughts his expression conveyed, but he very quickly found and planted his feet on a spot supported by a steel beam. He was intrigued, but cautious. It really was an interesting experience to stand on such an elevated glass floor. I wonder how that Grand Canyon walkway would be.

We went halfway over the walking bridge and decided it was far too miserable to be outside, so we turned back and decided to go to the aquarium nearby. On the way to the aquarium, we collectively tripped and fell into an ice cream shop. While there we asked a local what our boys might like to do and they pointed us to a kids' science center that was in "walking distance." That was "walking distance" like our bed the night before was a "King." It was a cool place though, and the boys had a blast. The first area had some water activities and a play structure and they could have happily stayed there all day.

For dinner, we went out of our way to go to Famous Dave's. It was glorious and amazing BBQ when we ate there in Omaha, but now we see why so many have closed down. Oh well, that's out of my system now.

On our way home, we were reminiscing about our day, and all the fun we had. We asked Isaac if he had fun that weekend and he said, "yes."  We asked him what his favorite part was and he exclaimed, "Chick-Fil-A! Num num num!"

Yesterday went by in a blur. Not often a day goes so quickly. At one point, Ian was keeping Elijah and me company while I nursed Elijah to sleep. Ian told me, "When I growed into a little baby, I had to go to the doctor and he measured my heart beat and I almost didn't need a poke.  Then I camed home and got bigger and growed teeth and now I have 20 jokes and I need to grow down to a little baby again." I'd like to hear the professional analysis of that. Too funny.

Today has more than made up for yesterday's quickness. Last night, not even a good dose of Benadryl gave Elijah a good sleep. It was one of those nights when I question if I got any sleep at all. Isaac is definitely Two. Lots of big Big BIG emotion. Sometimes he starts wailing and I have no idea why and he won't or can't tell me and will only shriek, "hold me hold me hold me." If I set him down so I can do something so selfish as pee, the wailing starts up again and doesn't stop until I pick him up again.  It gets a little hairy when both Isaac and Elijah insist on being held.  This evening, after Isaac woke up from his nap doing his perma-wail, I finally had to "bribe" him with a peanut butter and chocolate (Nutella) sandwich. He quietly breathed "mm hmm," at the suggestion, so I dove into action. I had previously tried to assess the situation to no avail. "Are you scared?" "No." "Are you hurt?" "No." "Are you lonely?" "No." "Are you hungry?" "No." "Tell me what's the matter, sweetie." "No." So, I had to pull the chocolate out of my bag. "Mm hmm."  Yes! A "yes!" Quick! Somebody get me the Nutella!

The anticipation of a gooey chocolate sandwich apparently did some magic, because I'd no sooner put my knife to work when Isaac cracked a giddy smile and said, "You're happy, Mom!" He ate his sandwich in his typical solemn demeanor. I took the opportunity to change Elijah's diaper and as I turned toward the trash can, I stubbed my toe, yelping a little in pain. Isaac exploded in laughter.  Enjoy, Captain Schadenfreude. This one's on me.

Veggie Table

I've been trying the participation method of garnering the boys' interest in veggies. I find them a job to do in hopes that they will want to eat what they helped make. It's been successful with at least the first bite.

I planned some steak and veggie skewers for the grill and thought up the perfect jobs for the boys. They helped wash a bowl full of peppers and mushrooms and then I set them at the table and assigned their next job. I gave Isaac a basting brush and a small bowl of seasoned olive oil and told him to "paint" the veggies. I gave Ian a pack of wooden skewers and demonstrated how to fill them with veggies. I figured they might have that done by the time I sliced and skewered the steak. As I assembled my last steak skewer, Ian proudly announced, "Look, Mom! I made a scarecrow!" Sure enough, he had made Tinker Toys of the sticks and veggies and had built a tall stick man. I wish my hands had not been all meaty and I had caught a picture of it.

Today I gave each of the boys a baggie of crackers to crush. I figured they'd love that destructive job. I showed them how they could squeeze them and pound them into small crumbles. I put some pecans in the food processor and turned to check their progress. I saw two little boys happily munching on crackers.

They left me speechless with our snack yesterday. I sliced up some red, yellow, and orange sweet chilis and set them on the table with a bowl of hummus. I called it a rainbow snack. They actually ate it. The peppers - multiple peppers - went into their mouths and were summarily chewed and swallowed. Miracles happen.

Ian has reached a new level of independence. For some reason, now it is OK to try new foods or previously snubbed foods. He even gets up and completely dresses himself. I'm loving this phase. Well, most of it. The other evening, after our nightly insistence that he try to pee before bed, he comes bouncing back into the bedroom, looking like Pooh Bear, with nothing more than a shirt and a permanently sticky face. I requested, "Ian? Can you get some undies?" He replied, "I can bark like a dog," and "woofed" on out of the room.

Even The Calgon Ran For Cover

Yes, last week was just that scary. If stars could've had a role, they would have completely un-aligned. Murphy's Law nearly bore my namesake. I completely blame the Chiclets - the ones Elijah is pushing through his gums. I'm still waiting to see if the bottom tooth is a new tooth or a piece of a tooth he lost in the hospital. He nursed so much I'm surprised an adhesion didn't form between his lips and my breast. I got this [ ] much sleep and, boy, was I grrrrr-umpy! The grumpier and/or busier I am, the more destruction the older boys bring down on the house and each other.

I went to bed moping with guilt each night for me beastly behavior, hoping the day wasn't burned in their little sponge brains, forever to damage their self-esteem. Isaac woke up crying a couple nights. One night I heard him crying (and I think clicking his ruby slippers),  You're a nice mommy. You're a nice mommy. Ow! He just stuck a spoon in my heart! I made a sniffly, dribbly vow to myself to restrain my delirious grumpies.

The poor boys were scraping and bruising just about every inch of knee and brain case real estate. It didn't help that the floors were thick with a lava of playthings from the daily toy box eruptions. Even Elijah took his first spill. I watch him like a hawk, but this one happened so quickly that if I were able to shake the guilt off of any particular baby bump incident, this would be the one. The boys were hovering around the tub, awaiting a bath. I set Elijah in a swing, close enough that I could turn my body and bend over to scoop up a handful of toys from the tub. In that moment, Isaac gave the swing a hefty push, which I realized only after I heard the scream from the Elijah-sized heap on the tile floor. I dropped the handful of toys back in the tub and offspring-preserving part of my brain sent me dashing out of the bathroom with Elijah to inspect the damage and be out of thwack's reach of Isaac. Surprisingly, it was just a red mark, hardly raised at all. At first, I was relieved, then I recalled a conversation with a nurse, back when Isaac got his infant head bump from Ian, that a bump going out is much better than a bump going inward. That raced around my mind for a minute, then I reasoned out that the swing hovered not even 6 inches off the ground and he probably didn't hit very hard.

I survived that week, and we had a very nice weekend. I can't seem to bring to mind what it was we did, but a certain pleasantness lingers about it. Monday started off nicely, I had almost finished reading the Abs Diet for Women and semi-started compliant eating habits. I was feeling pretty good about what I could do for myself. The day was just starting to fall apart (i.e. the kids were tired of me trying to clean the house) and Brian's dad showed up just as I was about to roll out the door to go grocery shopping. Yay! Here comes the cavalry! That turned out to be one of the smoother shopping trips I'd had in a while and I hardly knew what to do with all the grown-up conversation.

Today....I'm hungry. I'm not supposed to be hungry. I just haven't figured out how to eat. I blew one of my snacks by being awakened at 0530 by a little munchkin who still seems fixated on his teeth. I was ravenous so I ate. So far, using the provided recipes, I've been hungry an hour after eating. That tells me just how much I would have been eating, say, last week. I'll have to find that page where it tells me what the "free" things are so I can stuff my face some more. I've worked through the hunger, though, and tried to drink water instead, and clean the house. And re-clean the house. Why is it still messy?

I feel like I've been playing nap Whac A Mole with the boys. One is down, two are up. Two go down, one gets up. I noticed it was raining, so while the bulldozers sleep, instead of taking sweet advantage of a great opportunity to repair the house, I sat on the porch with Elijah. Ooh. Sitting is nice. I listened to the soft whisper of the gentle rain and cool breeze. I admired the curious tweets of the birds. I picked at some flaky cradle cap. Thinking, Hey, a quiet moment to blog, I deposited Elijah in his cradle and took his Kickin' Coaster out to the porch (Hey, did I ever mention what a cool seat that is?) . I put Elijah in his seat, grabbed my laptop, and plopped down in a plastic chair. As if on cue, the rain stopped, the breeze stopped and the sun banished its cloud cover. Humph.


whac a mole
i want to use my apologize

Cluster Feeding and Flustered Pleading

I think I'm regressing. I dreamed last night about building a really awesome GeoTrax layout. I guess creativity can strike anywhere. What the hay, I went ahead and gave it a shot and it actually was pretty cool.  I barely got it finished before I had to get back to my cluster-feeder.

Elijah surprised me by sleeping all night, two nights in a row and then began his rampage for milk. For the last 3 days and two nights I've rained milk hourly upon that boy. Somebody please send out the dove! If he's not nursing he's crying from exhaustion - no, wait, that's me.  Meanwhile, the house has collapsed and I think I will too. The "big" boys are bouncing off the walls and employing some desperate attention-getting tactics. All the toys are spilled and all the noises are shrill. Gotta love those growth spurts.

Brian made a funny office joke today and I ran with it.

The Cube-liette (The Cubicle Dungeon): Improving productivity through misery.

Two weekends ago we were trying to decide what we wanted to do. We ended up driving to the theater to see the Disney Oceans movie, but by the time we got there, the boys were asleep so we went to Ikea instead. That night Ian was very disappointed to return home without having seen the movie. This weekend we asked Ian what he wanted to do and he said he wanted to go see the fish movie. We were surprised he remembered it (I don't know why we would be surprised - he remembers everything). We took them to the movie Sunday afternoon and it was pretty good. I think Discovery had better narration and cinematography in their Earth and Life programs. What most amused me was listening to Ian's narration. It was an hour and a half of comments like:

That's a sad song. He's lonely for his mommy.
Ian got distracted with some popcorn and I pointed to the screen, saying, "Manatee." "Yes you may," he replied.
That's Nemo! That's lots of Nemos!
That's loud! Then quiet. Then loud. That's scary loud.
Mom, I can't burp real loud.
Two crabbies! That's a happy crabbie.
I want to leave the movie. I'm done now.




Isaac has better diction than Ian, but then again, Isaac is our little Mockingbird. I was changing Isaac and Ian comes up and says, "Hi Igick." Isaac replies, "I-zick. Can you say 'I-zick?'" Isaac enjoys discovering sound effects and thinking of words to say. He will be puttering with a toy and say, "Say 'pillow'." Ian repeats, "piwow." "Say 'pil-LOW.'" "Piwow." "Say, 'business.'" "Igick, I'm building a dangerous house." He babbles so much, it's unfortunately easy to tune out, so Isaac has turned to saying something, waiting a split second and following up with "I tode-ju...!" Sometimes he even talks over himself to say it. For instance, a 1-minute period may go like this: Fire truck fire truck fire truck. Good night ladies. Good night ladies. I'm go'n leave you now. Ring roun da rosie. Pop goes Isaac! Dinosaur is eating man. I'm going to jump. May I jum - I TODE-JU MAY I JUMP?!


Ian is our Thinker-Builder. He makes curtains for his trolley cars.

He makes toilet-paper capes for his cars. He uses his blocks to build houses with couches and TVs and lamps and slides for his little block "people". He is the boy that sits and pats his friend's back while his friend is being disciplined. Instead of talking about what he will do when he grows up, he says, "When I grow down, I will be a little baby and you will 'nuggle me and hold me and I will laugh and cry, 'wahhh' and nurse you and do all the fings I can do. He went to "check" on "Bebe 'Lijah" lying in his Kickin' Coaster (an AWESOME baby seat, by the way) and inspected his toes and said, "This piggy went to market, this piggy stayed with Dad, this piggy laughed, 'ooh hoo ha ha,' [skipping a toe] an' dis piggy runned away."

I've been loving my crazy new birthday shoes.

I actually exchanged these for ones with more foot coverage, but you get the idea. They are called Vibram Five Fingers. I won't go into all the foot-health benefits they claim, but they are fun and about as close to painless barefooting one can get without years of rigorous callous-building. I run around with the boys in the backyard with them and feel a little giddy. I glide (at least in my mind) across the bumps and dips of the terrain and feel agile and sure-footed, unlike the guesswork of running in regular shoes. We went to Line Creek last weekend and I tromped seamlessly from rocky-rooty trail to slipery-cool streambed. I couldn't resist sneaking out of the water for a moment to hit a creek-side trail like a swift ninja. Nevermind the 32-year-old mommy-body bounding down the path with more undulation than typically present in a ninja. That was somebody else.

This week has been a blast

Spring is here and the diapers haven't even melted yet. Every morning I've been playing Waffle House with my new cast iron two-burner griddle. The item apparently on the boys' menu is pancakes. I mixed it up one day and made them SpongeBob Eggs.

Isaac ate his right up, but Ian only wanted to talk to his. I finally cut it into pieces and said it was a Sponge Bob puzzle for his belly to do.


Elijah had his PET/CT scans last Tuesday. They looked quite clear and he will start his maintenance course of chemo on next Tuesday - yay!  That means we have to go up only once every 3 weeks.


I'm a million years behind on my documentation, so here is a quick run-down of items for the personal archives - no story line, no fancy transitions - nothing.


One day, I hear from the shower, "Bong! Bong!" "Ouch, Ian! That's not a bell!!"  I'll let your imagination fill in the details.


Ian has the most adorable new word.  I'll use it in a sentence.  "Ian, where are your shoes?" "I don't underknow." He does have a way of phrasing things quite effectively. We've had the pleasure of entertaining a stomach virus at our house this week. Ian told me his tummy hurt. I asked him if it hurt like he had to poop. He laid on the floor and said, "It hurts like I want to lay right here until I get up." That's pretty much exactly my sentiment.


I taught Ian about Elijah's soft spot on his head. I described that it is a place on his head that has no bone yet. When Brian came home,  Ian said, "Elijah doesn't have any bones there. I gived him one of my bones so he could be safe."


While playing outside one evening, Isaac looked up at the crescent in the sky and exclaimed, "The moon is chomped!"


Ian likes to make random announcements to invisible spectators. One time while playing blocks with him, Ian stood up and faced his audience saying, "Hi, my name is Ian. I'm building a tower and this (motioning) is my best friend, Mom."


While on a walk, we acknowledged Ian's friendly gesture of waving to a passing car. He said, "I was a gentleman!"


Actual Seuss line: This one I think is called a Yink. He likes to wink. He likes to drink. Ian's version: ...he likes to drink and have fun with the guys.


Ian coughed & said. "I'm ok." He coughed again and said, "I'm ok again." He coughed a third time & said, "I'm ok a six time."


I'm really anxious for Isaac to decide to potty train. Every so often I bring up the subject. During a really messy change, I asked Isaac, "Would you like to try using the potty? Having poop in your diaper must feel so uncomfortable." "No." "What if I got you a little potty just your size?" "No." "We have a little green potty and a little white potty with stickers!" "(pointing to the supplies) Get mine clean diaper!"


One time Ian inspected Elijah's toes and kissed his head and hugged his belly and said "I'm just right for him." And, he sure is! He adores his baby brother and takes the best care of him.


I think that about covers it.


Brian's dad has had the enjoyment of rolling into town during our "potty relay" week. We're probably loads of fun, but I'm sure glad he's here! He's keeping the boys alive while I lie curled up in bed, trying to contain my innards. When the big boys woke up yesterday, I told Ian to go find Grandpa and he'd make them breakfast. Ian replied, "No, I'll find you and you'll make me breakfast."  I tried to remind him that Grandpa loves cooking and, "he'll make it just like you like it." "No, he won't!" Ian protested. "He'll make it too spicy!" Later in the kitchen, Ian was still not convinced, as Grandpa started some pancakes. "Look, Grandpa is making you tasty pancakes!" "No! He'll make them crunchy!" I'm not sure why that would be a problem. As I mentioned in a previous post, he seems to have a taste for blackened pancakes.


The three oldest men in the house have gone off in search of Pedialyte and Preggie Pops, two delicacies for our nauseous, dehydrated selves to enjoy. I was going to nap with Isaac and Elijah, but Elijah decided I would stay up. Ahh, the best-laid plans. 

Three For Me

Wowee Kazowee, I think I've nearly survived my first day solo with my three munchkins. To go back a bit, we brought Elijah home on Friday, March 26, with his NG tube, his apnea monitor and an overwhelming list of care-taking instructions. A home health nurse met us that evening to set us up with our tube-feeding pump and to make sure we were comfortable with flushing his CVL and changing his dressing and fortifying breast milk and giving his meds. What a strange first night.

It was our intention to actually use the apnea monitor - not as frequently as suggested, but maybe for some peace of mind at night. Well, we never left a tube feeding unsupervised, so we didn't use it then. We thought he might sleep well, since he was used to crib sleeping in the hospital, but he was apparently done with that, and with the amount of breast feeding that he and I both wanted to do, I ended up leaving him at my breast all night, just as I had done with my first two. Even two feet away in the cradle, I couldn't hear him breathe (yes, yes, that's what the monitor was for), so I had much more peace of mind with him snuggled up close.

As I had  hoped, within a week, my milk supply was up 'n at 'em and we decided to "risk" removing the NG tube. It would be time to change it out soon anyway. He did fine with exclusively breast feeding. He had no spit ups and seemed to only need the tummy medicine during and shortly after his chemo medicine days.

It was SUCH a lifesaver having Brian's mom here. She provided the stability for the boys that we couldn't have given them, and she kept the house together too - and she made it all look so easy!  She even graciously stayed an extra "extra" week so we could feel more comfortable that Elijah was going to do well. Sadly, but understandably, she drove home today with Brian's dad.

The first thing the older boys did this morning was try to run upstairs to see Grandma, even after I reminded them that she had gone home. Later, Ian heard a noise and asked who made that noise and said, "Maybe it was Grandma." Maybe it'll sink in after a couple days.

The boys were used to Grandma's tasty Jiffy pancakes and wanted them again this morning. I got them going on my new 20" cast iron early birthday present. With impeccable timing, Elijah decided to need an immediate diaper change. I don't know if I felt relief or dismay when Ian requested more "black pancakes."

While nearing the end of the drive home, Grandma called and talked on the answering machine for Ian and Isaac.  Ian picked up the phone and started trying to talk to her, so I helped him turn the phone on and he took off on quite a conversation. I'm not sure what all was said on the other side but I was hearing something like, "Oh! Did you call me one the phone? Oh! I'm doing fine. I'm not crying. I played with Miss Emily and Luke [yeah right], two cars over here, 6 cars over 'ere and all 'ese fings. Elijah is good. Igick is good. Are you 'ere, Gramma? Oh. Elijah is drinking mommy's milk. Mommy is a fweet girl. She is feeding Elijah. He is so hungry and so firsty. [picks up toy phone] I can talk with two phones. Laaaaaa la laaaaaaaaaa laaaaaaaaa laaaaaaaaaaaaa. [forgets about real phone and starts playing with toy phone]" "Ian, is Grandma still talking to you?" "Hello are you there, Gramma? She's not there." I take the phone and say hi. Grandpa answers. O.K., I guess technically Grandma wasn't there.

Speaking of Grandpa, the other night Ian was enjoying a Juicy Juice soda. He took it around to everyone to offer a sip. When he got to Grandpa, Grandpa politely declined, saying it had too much sugar and he can't drink sugar. Ian slurps a sip of soda and hands the can back saying, "Here you go. I drank off the sugar for you." I'd say that's a very marketable talent he has.

So, congrats to me. I actually managed to feed my older boys twice today, and the youngest multiple times, and it all happened without anyone screaming or wounding themselves. I even got the two youngest to sleep at the same time, thanks to my use of Grandma's jaw-dropping method of simply telling Isaac to go take his nap (who woulda' thunk that would actually work?!). I never feel great about the quality of time I spend with the walking, talking children until the baby can at least sit or crawl or otherwise become less time and effort intensive. My tactic for now was corralling everyone in a room with strategic use of the television when I had to tend to baby. I'm sure in no time I'll be back to my old self, storming the town with my barely-controlled posse of pre-schoolers...and their new "Baby 'Liijah."

Wait Lifting

As I wait again in the family waiting area for a NICU surgery to wrap up, I'm reminded of the difficult lessons I'm learning. The first is patience. I'm learning that God has a timeline and I'm better off letting go of mine and embracing His. I have a matryoshka doll of "waits" bobbling in my mind. I have the big waits of wondering when my baby will be healed and when he will be home. I have littler waits nested within of when will the chest tube come out? and when will the doctors trust our breastfeeding to grow his body? There are surrounding waits of when will the NICU let us back in so I can see my baby? and when will the doctor tell me about the last scan?

My whole day is a succession of waits, big and small. I'm not good at waiting, at least not through all these unknowns. If God could just send me a messenger to say, "Elijah will be fine and you will be home together soon," I could wait in peace; If I knew it would all work out, I could endure almost anything in the meanwhile. Over the last 8 weeks, I think I've been decompressing a bit. My 6-week hopeful mental deadline came and went with no homecoming. I've let go of trying to guess when we'll have him back and have relaxed into knowing he is where he should be. He'll leave when the time is right. I'm trying to lift my waits to God and believe that the "whens" don't matter next to God's will. Our world is in His hands.

As I sit here moping, I tear up a bit when I see a father across the room hang up his cell phone and burst into a relieved cry, "She's okay!" The family circles up for hugs and a prayer of thanksgiving. It was his daughter's surgery I was waiting on to get back to see my son. He was waiting for her life. As my waits are put in perspective, I want to jump up and join the group hug to celebrate with them.

My second, and equally-challenging lesson is relinquishing my self-reliance. Floods of offers for help have come in from friends, family and acquaintances. For the first weeks, I couldn't think of what I needed, aside from stability for our boys, which family was providing. I wasn't sure there was anything to need. I felt bad because I could tell people genuinely want to help, but I've been so autonomous I couldn't come up with anything. Finally, someone, not knowing the wisdom of her actions, practically forced help upon us. We, very uncomfortably, accepted lunch for a week from near-strangers.

I felt very humbled, if not a little uneasy, to have meals delivered to the hospital each day by people who spent the time, effort and money to cook or order them. Quickly, though, the blessing manifested itself. The warmth of a tasty meal, delivered in love, nourished our hearts and bellies. We had something wonderful and reliable to look forward to each day. That gave me the courage and humility to ask our devoted church members for a few meals we could keep in our deep freezer for those evenings when we don't have enough juice left to cook. Someone passed out 42 casserole pans in church and from that day we have not had to cook a single dinner!  What a blessing and a relief!

I don't know why I developed my independent nature. It's been too important to me to solve my own problems and meet my own needs. It doesn't make much sense to me, because in the other direction, I'll do just about anything for just about anybody for the sheer joy of helping someone. I like to be a contributor. So, why is it so hard to be a recipient? Why is it so uncomfortable for me to feel so indebted to so many people and to know I could probably never repay each person, and *gulp* could probably not even list each person that has helped us. Why do I feel the need to repay deeds that were done without expectation, and perhaps even causing offense if I tried? If I were to think as a giver, I would want my recipient to feel at peace with my gift - to feel relief from the burden that has been lifted by my gift - and to go about her day, free to focus on what matters.

As I write these words, I'm seeing a big blinking arrow pointing to some important truths. People need people. We weren't meant to handle everything on our own. Sometimes a harder lesson than learning to give is learning to receive - to accept what we need from those who freely give. Most importantly, I'm reminded to daily accept the gift of life that God had freely given. We each need to accept it with gratitude and peace, understanding that we will never deserve it, earn it, or be able to repay it. We owe no debts; we've been freed to focus on loving Him and each other. What a blessing and a relief! 

Pleasantly Bored

Okay, so how many different ways can I document my daily routine? Got up. Pumped. Got dressed. Ate. Stuffed frozen milk in a cooler. Got kisses from the boys. Said goodbye. Said goodbye some more. More kisses. Said goodbye one more time. Drove to hospital. Pumped. Woke up munchkin at 11:45. Changed diaper. Detangled wires. Attempted breastfeeding. Put sleeping munchkin back. Pumped. Went to lunch. Woke up munchkin at 2:45. Changed diaper. Detangled wires. Attempted breastfeeding. Put sleeping munchin back. Pumped. Mildewed (Huh? OK, when I was growing up, every time I asked my dad what he was doing, he said "mildewing". I never "got" it, but I think I'm catching on now). Woke up munchkin at 4:45. Changed diaper. Detangled wires. Attempted breastfeeding. Put sleeping munchkin back. Pumped. Got slightly reprimanding looks for encroaching on shift change. Grabbed drink and snack from caf. Drove home. Ate dinner. Pumped. Crammed in playtime with boys. Got ready for bed. Pumped. Read stories. ZZZzzz.

The awesome part is sometimes I mix it up a bit and change a diaper after breastfeeding or get a lunch date with a brave and kind soul who stopped by. There are also cool little details I didn't bore you with, like, I took his temperature. Ooh today he gets an Xray. Say, maybe I'll change his clothes.


At the hospital, a boring day is a great day. Today is a really, really great day. The less action this boy can stir up, the sooner he'll be home.

Home. Home. Where my other funny little boys are. I have more fun with these little guys in the sliver of time I get with them during the week. Last night we read The Monster At The End of This Book. That was always one of my favorites as a kid. Last time we had read it was shortly after Christmas, and I think Isaac was a little scared of it. Maybe it was Dad's voices that did it. This time, Brian read it once and Isaac took it and "read" each page, saying "Monter at end of tory. (Looks at Brian) Turn page?" After a few more stories and clicking off the light, snuffly little Ian volunteered to pray. "Dear God. Fank you for God. Please bless everyfing. I want mommy to clean my nose. Bless the trucks. Aaaamen!"

Daddy's A What?!

Here I sit in my favorite (*gag*) waiting room, shut out of NICU once again for a surgery, bored, but grateful it's not for Elijah. Two TVs are blaring sports and trash TV. Really, I couldn't be less interested that you don't know who the father is. Might as well use this time to write an update on my new strange life.

I just signed consent for a new chemo treatment (which apparently we're not going to do after all), and am contemplating lunch. I had a very pleasant day yesterday. All the staff are nice, but I really clicked with this particular nurse. We shared our obsessions with new pens and paper, containers, and high-fat candy bars. I lamented about my milk supply. She meticulously documented the day. While mixing one of Elijah's feedings, she inadvertently dribbled some milk out of a syringe. "No worries, I have plenty," I playfully jabbed. "Oh, snap!" she replied with a wince. Good times. She was the first nurse we interacted with when Elijah was transferred to Egleston, and she really helped put our minds at ease and instill confidence in us about his care. She's the only one we've had who pulls up a chair and leans in and ask questions when a doctor comes in to consult with us. Consequently, she's often there late to finish her charting, but we really appreciate her attentiveness and skill, in addition to her fun personality.

The boys at home seem to be settling into the abnormal as the new normal. Every evening, when we come home from our respective "jobs" - Brian from work & me from the hospital, the older two are sitting on the steps by the door, waiting to say "surprise!" or are dashing through the entryway, happily cheering, "Mommy! Daddy!" Grandma Cummings has one of the generously-donated pans of food heated up in the oven and tells us all about their day's adventures. She is not alone in her interest to get Isaac potty trained.  That boy's sport is the defecathalon. Trying to gauge his interest, I asked Isaac the other night if he'd prefer to poop in the potty or in his diaper. Ian chimed in with, "Igick wants to poop on Daddy. Daddy's a potty." I learn something new every day.

Grandma was particularly impressed yesterday when Ian used Lincoln Logs to add head lights to his monster truck. He used a long one across the doors as a cross beam and placed short logs on each end as lights. He did a demo for us when we got home. It actually was quite cool. Then he lined up some Hotwheels and drove over them. Later on, he rigged one of his Jamestown settler's cannons under the hood so his truck could blow smoke. After we crawl in bed at night and turn off the lights, Isaac tells us he's afraid of monster trucks. Ian corrects him that monster trucks are not scary; they're nice. And they like to be petted.

Ian's 3-year-old imagination grows more vivid every day. One time, after accidentally leaving the door cracked open, we caught Ian coming in from the garage. Brian asked him if he'd gone into the garage by himself. "Yes." "What did you do in the garage?" "I did cartwheels in the garage. And I hurt myself." Most days, when we ask him what he did that day, he replies that he "played at Miss Emily and Luke's house" or "played with Collin and Jayla". We know he can't reach the gas pedal on the car yet, so he's full of wishful thinking.

Apparently, even 22-month-old Isaac can get his fill of Ian's embellishments. Ian was trying to tell us last night about how sad he had been. He said, "I was sad. Very very very very very...very very..." and after the umpteenth "very", Isaac curtly interrupted with, "very sad."

Trying to add normalcy where we can, we took the boys to church last weekend. That probably wouldn't be their first choice of normalizing activities. OK, I'll drop the baloney - it was for us. The service was infused with the sweet songs of several children's choirs. I thought that would spark Ian's interest, so I stood him on my knees and enthusiastically whispered, "Look! The children are singing!" Always the diplomat, Ian bellowed, "The children are hurting my ears!" Sometimes, Ian is a little more clever with his words. The other day, Ian held out a toy he was done with and said, "Hold this, Dad." "Please," Brian suggested. "Yes you may!" Ian cheerfully replied. Foiled, Brian took the toy.

The Elijah Cannon: Part 4, Treatment Begins

I was amazed by the size of the CHOA Egleston NICU, the quietness of it, the professionalism, and the hosptality. We could tell immediately that they had "it" figured out here. They understood that the experience was more than a baby in a bed - that each baby comes with a family, and each family comes with fears and needs. We were almost immediately grateful for the transfer. We came to realize that we never really had that "left to dangle" feeling. It seems like down almost every hallway, someone would stop to introduce themselves and genuinely address our emotional and physical needs. A social worker spoke with me first and let me cry out Elijah's story on her shoulder. She addressed the issue of finding a way to spend time with each of my children that I could feel good about. She provided us resources for trying to find a place to stay and ways to try to get financial aid. Then a chaplain met with us. Then an ambassador. They've all been very accessible and in regular contact. Every nurse and doctor explains what they are doing to Elijah, as well as what steps they are taking to ensure his comfort and safety. If we are away, they call us on our cell phones to keep us posted. They treat Elijah with gentleness and compassion and us with respect. They encourage our involvement in his care and help us feel important to the process. They've done the neatest "extra" things too. They gave us a journal to write in, and occasionally, the nurses write a note in it from them or from Elijah. I was also given some Mommy Love Squares - crocheted squares I can wear close to my heart and leave with Elijah so he has my scent near him when I'm away. One nurse also made Ian a big brother book out of photos she had taken of Elijah, and wrote a story in it and illustrated it with some stickers and scrapbook supplies.

The facility has sleep rooms, handed out nightly on a lottery basis. We tried that for a couple nights, until we decided it was more beneficial to sleep at home. They have showers, lockers, laundry machines, a work out room, pumping rooms for breastfeeding moms, a business center, a snack room, a library, classrooms and more. Parents get very discounted meals and parking, and breastfeeding moms get free meals.

By the following Monday, Elijah had a Central Venous Catheter surgically implanted, a bone marrow biopsy taken, and an X-Ray, PET scan and MRI. Tuesday, he started chemotherapy with Vinblastine to be given weekly and Prednisone given daily. The tests confirmed lung, lymph, bone marrow and possibly spleen involvement. That was hard to swallow, but by then we already knew that the initial treatment would be the same, regardless. We also understood that this chemotherapy was different than cancer chemotherapy, in that with cancer, treatment starts aggressively, whereas with LCH, treatment is started slowly and built up as needed. His side effects were expected to be minimal with the low doses he gets.

Elijah had been intubated for the surgery, but when they tried to extubate him, he didn't do very well, so they put the breathing tube back in. A bronchoscopy showed significant swelling and lesions in his upper airway, which were restricting his breathing ability. He also got a blood transfusion to try to give his system a boost. After his first dose of chemo, on Tuesday, January 26, his skin actually seemed to look a little worse, which wasn't an unusual response. Wednesday night, our pastor and some church elders came in to pray with us and Elijah for his healing, and read from James 5. It's ironic and reassuring that the passage speaks of the great prophet Elijah's faith.

I don't know why, of all the times I contemplated it, I chose that night to finally show Ian and Isaac pictures of Elijah. I'd been trying to hold off for Elijah to look "good", but enough people convinced me that at least Ian could understand and "handle" the idea that Elijah needs some special medicine and help from the doctors and nurses. I did choose one of his earlier photos, when he had more spots, but just a feeding tube. The boys loved the pictures and didn't seem at all concerned about how he looked. It felt so good to "introduce" their new brother to them. Ian said, "Come out of the picture, baby Elijah!" He hugged the picture to his chest for quite a while, occasionally looking at it or kissing it. The next morning I got some tape and Ian taped the photos to the wall. Throughout the next days, he would occasionally move them all to a different wall. Sometimes one of the boys would pull down a picture and carry it around for a while.

Shortly after, we were talking to one of the neonatologists, and he arranged to sneak Ian in for a visit. Ian thought it was very cool to wear the special mask, and he climbed up on the chair at Elijah's bedside and gently touched his leg and belly. He seemed captivated. He looked all around at the machines. Elijah was on a ventilator at this point and Ian pointed to the screen and said, "This goes all the way to baby Elijah". He got down and inspected the bed and the drawers and wheels and buttons. He stayed so quiet and gentle. It's frequently hard to tell what Ian thinks of something. When we asked him what he thought of Elijah, Ian said, "He's good."

Friday was the first time I'd really seen Elijah smile. He must have grinned because he was hatching a plan. That night, he surprised us by losing a tooth we didn't realize he had. Then, on Monday, he extubated himself and was breathing more calmly than I'd ever seen him breathe since he was born. By Tuesday, his nasal canula was removed and he was breathing great on room air. That day, he had his second dose of chemo. Wednesday, he was moved into a regular crib. His tube feedings of breast milk were gradually increasing. Friday, we joined our church family in a day of fasting and prayer for Elijah's healing. That night, he was moved to the step-down unit. On February 9, he had his third dose of chemo and the next day, his Morphine was discontinued, since he hadn't needed any in a while.

By Friday, February 12, Elijah was in great shape. He was up to full gravity feeds and was having success with small bottle and breast feeds. He was spending a lot of time alert, happy and active. I felt pretty spoiled, coming in every day and holding him for hours, talking to him, singing to him, smelling him, and soaking him up. Very early Saturday morning, we got a very surprising call. Elijah was back on the ventilator. They weren't exactly sure what the problem was, but Elijah had been cranky, breathing hard, and grunting. They suspected sepsis. Hours later, we got another update that he was not septic, but instead had a pneumothorax. One of the LCH "bubbles" in his left lung had burst, causing air to escape from his lung into the space around his lungs, collapsing his lung. They aspirated the air out with a needle and observed him for a while, but eventually inserted a chest tube. Later, we were shown the X-Ray, and were amazed to see that the lung had collapsed over so far it was pushing his heart into the right side of his body. His body had compensated really well for the event; apparently he had gotten just a little pale and mottled, but didn't have a really severe reaction. That probably had a lot to do with the staff being so attentive and moving quickly to his aid.

Saturday, we had a big snow, for our part of the state. We couldn't safely get to the hospital to see Elijah, and maybe it was just as well, since we would have felt the need to go, even though he would have been sedated all day and not looking so well. Sunday, Brian, his mom, the boys and I all drove up to see him. We took turns keeping the boys distracted while the grown-ups visited with Elijah. He was pretty alert and seemed as comfortable as could be. We pretty much plowed through the fact that it was Valentine's Day, and Elijah's 1-month birthday. Holidays have pretty much shriveled up into meaninglessness these days. Brian and I did make a point the week before to try to have a dinner date, but we couldn't really shake the cloud over our head. We just talked about our poor little boys the whole time.

Monday, the 15th, around noon, Elijah was extubated and has handled that fine so far. The next step is to get the chest tube out, when the X-Ray shows no more air in the wrong spot. His chest tube is currently on water seal, which means the suction is off. He handled his first full gravity feed, since his pneumothorax just fine.  I imagine, or at least the hope is, he'll progress to back where he was last Friday, and we'll start those scary/exciting discharge discussions again. It's relieving that this happened while he was still here, but it's very scary to think there might be other time bombs in his lungs, that we may carry home with us at some point.

My brain doesn't really know what to do with all of this. I'm craving a home life with the 5 of us together, but I fear it too. There will probably be months and years of wondering if he'll ultimately be okay. He's been a strong boy since birth, yet so fragile too, at the mercy of the beast in his body. I have no doubt, watching him go through all of this, recovering so well over and over, that God is holding His little boy in His hands and has plans for him. It crushes me to see what he has endured, not seeing an end on the horizon, knowing he's been a month on this earth and has experienced only the sights and smells of the hospital. I crave for him to know what it's like to have two bigger brothers kissing on him, and to spend his days and nights nursing at his mother's breast and dancing in his father's arms. Some days I feel assured it will happen. Other days, I make the mistake of reading too much about other kids' losing battles with LCH, forgetting that their fate has nothing to do with his, and dread that there will be a terrible backslide. He is an amazing little boy with an awesome God. I cling tightly to the promises that God is my strength and my refuge. I remind myself to be still and know that I am God. I feel fairly certain of what I can and cannot handle, but only God knows, and He will carry us through this journey, as He carries us now. He will be glorified through this.

I can already see some of the beauty in this. Completely unrelated social circles of ours, as well as those of our friends and family, have united to support us and pray for this little guy. Strangers and acquaintances from a web board I frequent spent a week bringing us lunches. Our church is still blessing us with dinners that we can pull out of the freezer and heat. We have received cards, emails, prayers and prayer blankets from around the country - the world even. We've been told of people who do not customarily pray, who are now praying for Elijah. Heaven knows this child's name! I choose to believe that little Elijah is surrounded by a bastion of mighty angels, sent from the Father, who loves this boy more than I could ever aspire to.

The Elijah Cannon: Part 3, I Always Knew Polka Dots Were Trouble

After delivery, it took a while for me to get transferred to a recovery room. What a different experience it was to be offered even crackers and juice. I wasn't terribly hungry, but I ate them slowly out of principle.  I felt like my blood sugar was low, or more perhaps like my blood was low. I also suspected my lungs and stomach had become lazy, because when I'd sit up, I felt a sensation like my upper innards were trying to fall into my newly vacated abdomen, and that was a bit nauseating. I was very anxious to go see Elijah, so when Brian told me I could come to the nursery to try and breastfeed, I summoned the will to keep my organs in place while I transferred to a wheelchair.

My parents were in the nursery adoring our polka-dotted Elijah and talking to the nurses. Mom and Dad are both nurses, so they speak the language. They were helpful to us in a thousand ways while they were here, and one of them was their ability to break the ice with the staff. Brian and I would leave the nursery sometimes not quite sure what to make of one of the nurses and we would return after leaving my parents to work their medspeak magic, and voila, the nurse in question had become friendly and hospitable.

Elijah had an oxygen mask nearby, to occasionally give his Oxygen saturation a boost. He was breathing fast and his chest was retracting. We tried to nurse, but the poor guy couldn't breathe through his nose. The inside of his mouth looked mangled with sores. The little toughie was staying remarkably calm, though.

I can't remember exactly how or when his transition to the NICU occurred, but he was moved there in fairly short order and fitted with a feeding tube, IV and nasal canula for oxygen. I remember becoming very fixated on pumping. Since he was starting off with soy formula, providing him healing and protective milk was very important to me, particularly in my helpless-feeling state. Nobody had a clue what was wrong with him.  We were suspecting these sores were in his nose and throat, causing the airway constriction and discomfort, but we weren't really considering anything internal at this point. I was not sure how to think or feel. He was strong in utero and handled labor and delivery like a champ. His APGARs were 8 and 9. He did not seem like a sick baby. My mind framed him like a healthy baby with a stuffy nose. He just needs a little help until these sores heal. I sure wanted to hear a name for these sores.

Three days of round-the-clock pumping, holding, praying, kissing and rocking passed for me. Three days of pokes and prods, tape and bandages, scans and exams passed for Elijah. It was time for me to be discharged. I broke down, not knowing our options, mourning the inability to be wheeled out of the hospital in an overloaded wheelchair, proudly displaying my new little bunny. This was the first time it really sank in that this could take some time. This was when I started to feel like a completely inadequate parent to all three of my children.

We were graciously granted accommodations in a "room-in" room across the hall from the NICU. It was a very small, very basic room. It had one small bed for both Brian and I, and now we are Spooning World Champions. There was also a small closet to keep all our belongings and supplies in. Thank you, Tetris. Completing our cell was a bathroom, bedside table, recliner, television, and a clock that perpetually said three o'clock. A really awesome nurse hooked me up big time. Think of it like being a female washing up on a desert island with a crate of Maxi Pads - not a situation you'd hope to find yourself in, but one you'd come to see the value in once you'd come to terms with your fate. SuperNurse brought in towels and all sorts of post-partum care supplies, eliminating my concerns on that front. My parents came in with tons of groceries that kept us fed three meals a day for the remainder of our stay there.

Allow me to digress for a moment to rain praise on my family. Almost all of our immediate family lives in Florida, except my brother, who flies from California to all parts of the world and back, as a medical escort and flight nurse. However, I know as fact that he would have jumped on this wagon in half a second, were he nearer. My parents, my husband's parents and my sister all volunteered a week of their time to come up to Georgia, and they set up a rotation so that we would have nonstop help for weeks after Elijah's birth. Other members of the family have supported this rotation in other ways from home. They have deep-cleaned and organized our house, and maintained it through the 2- and 3-year-old "storms" we have at home. They've kept our boys at home, in their routines, in good company, and drove them up to see us each day while we were cloistered. They shopped and cooked. I can't imagine the additional stress we would have felt without their help. My parents have provided a special level of support, because, as I eluded to in a previous section, they went through a very similar situation with my sister.  My sister was born with a heart condition that required major surgery as a newborn. My parents have been able to empathize with the fear, helplessness, loneliness, grief, stress, frustration and pain of having to leave my new child's life completely in the hands of God.

Not to get ahead of the story, but my husband's mom has provided an invaluable support to us too. We wrestled with all sorts of arrangements, trying to figure out the perfect balance to divide our time between Elijah and our boys at home. We live 6 miles too close to get into the Ronald McDonald house. The boys are forbidden from the hospital for flu season. We had strangers offering up basement apartments and friends offering extra rooms in their homes. Finally, we spent a night or two at home and were moved by the healing powers of dinner at our own table, a soak in our own bath, and sleeping snuggled up with our boys in our own big bed. The boys responded so well to that arrangement; they handled goodbye in the morning so much better than a midday goodbye at a park, because they knew we'd be back for the night. But we still needed an arrangement for the day. Brian's mom responded by moving her home-based business up to our house to stay long-term until we are settled back home with Elijah.

Now, back to our time in the hospital cell. I found it a little bit comforting to be in a teeny room. Maybe it's like a scared animal quivering in a log. Something felt safe about its smallness. I don't care to relive in this account every dreary-long day in that room, nor do I care to spill the poison of the mistreatments and injustices we felt. It was quite a roller coaster with frequent ups and downs of fear and hope. I was pumping every three hours around the clock. It was a chore, but gave me a feeling of involvement and duty. The pump, though high-grade, was inefficient and uncomfortable. As soon as I finished (after 30 or 40 minutes), I would dash the milk over to Elijah's room. I would change him and hold him for at least an hour, believing strongly in the comforting and healing abilities of kangaroo care.  The nurses spoke many times of how he screamed and was in terrible pain, but I never witnessed that behavior the entire time I held him. That convinced me that he needed to be held as much as possible. After a few days, I was completely bleary-eyed and the lack of sleep was heaping mud on my emotional train wreck. Brian and I started off trying to be with him together, to have 4 ears to listen to the updates, then soon switched to alternating schedules to give the other some nap time, even though I still had to get up to pump. Even that was not sustainable. After regular lectures from the nurses to get some sleep, I painfully chose to allow Elijah to be formula fed for one or two feedings at night. I felt like a terrible mom for it, but knew I wouldn't be much good to him if I ended up sick. My milk supply was keeping up almost exactly with his feedings. Finally, after 4 or 5 days, my milk really came in and I started getting ahead so he would never need formula.

All sorts of specialists from around Atlanta were in and out of Elijah's "room" - Infectious Disease, Dermatology, and more. Finally, one doctor said "Blueberry Muffin Baby". An extraordinary number of tests were run on the little guy. One by one, they'd come back negative, and each sigh of relief would carry us through the rest of the day. Finally, they decided he wasn't contagious, so no more harassments about gowns and gloves. A chest X-ray showed what looked like pneumonia in his lungs, so he was on antibiotics just in case there was infection.  After a few more consults, another doctor said it looked like a form of Langerhan's Cell Histiocytosis. Since his skin was healing so well, they were hoping it was Congenital Self-Healing Reticulohistiocytosis - something that would just go away on its own. That was a huge, though premature sigh of relief.

My face leaked constantly that first week. I cried out of fear. I cried out of relief. I cried when I left my older boys. I cried when I left my new one. I cried when I pumped "just" 10mLs. I cried when I pumped a "whopping" 60mLs.  I cried when Elijah got poked. I cried when he smiled at me. I cried that our boys had not yet met their new brother, and tried desperately not to wonder if they ever would. I cried hardest of all when Brian returned to the room from his visit with Elijah and told me a specialist from Children's Healthcare of Atlanta at Egleston looked at Elijah's case and was pretty sure the LCH was in other parts of his body and that he wanted him transferred to CHOA Egleston and would probably need chemotherapy. I immediately pictured my fragile newborn looking even more hairless and emaciated, suffering worse from caustic drugs. They moved quickly on the transfer, that same Saturday. We didn't even have time to pack. I went with Elijah on his Angel II Neonatal Transport ambulance. Brian packed up the room and followed.