Just one of those nights

Someone thinks rather highly of himself around here.

This picture was just a small part of the ridiculousness that made up my night last night.

Let me begin by telling you that Ellie was up at 11:15, 2:25 and 4:44. I did not feed her that last time, and instead only changed her diaper. I think it's reasonable to think that she could sleep through the night at this age, so TWICE between midnight and six is--in this momma's opinion--a bit much. Had she continued to cry after the diaper change, I would have probably caved and fed her. Again. After having just fed her two hours previous. But, thankfully she went back to sleep. Until I got her up to take Jackson to school at 8 a.m. See? She CAN do it, she just hasn't had to do so very often.

In addition to Ella's frequent awakenings, Cooper cried out in fear at 4:30; he was able to be calmed down rather easily, so I was back in bed though still awake (and somewhat perturbed) by the time E's 4:44 interruption rolled around. I may have been gritting my teeth a little as I talked to her about how I had just fed her so she needed to go back to sleep. It makes perfect sense to middle-of-the-night-Megan to try to reason with a 3/4ths-year-old about her schedule.

Later, when the alarm clock rang out 45 minutes before I had planned to get up for the day because one of my boys had screwed with it without my knowledge yesterday, waking me for the forth time (stupidly, I didn't go to bed until after ella's 11:15 feeding) in my short night, I did not hesitate to turn it off and throw it across the room all in one surprisingly coordinated motion. Fortunately, I use a travel alarm clock, so the walls were relatively unscathed in the ordeal.

Now for those keeping track of the score at home, Megan-1 and Alarm clock-0, you realize what my sleep-deprived self earlier this morning did not--I now had no alarm set to get me up at the Megan-approved (albeit still begrudgingly so as I am by no means a morning person) time of 7:15. My younger kids are often awake by then anyway, so I'm usually up because of them. UNLESS they have been awake in the night, and then they unabashedly sleep through the proper wake-up time. And Jackson could probably sleep until noon every day of the week, if given the chance, so he was no help either.

It wasn't until 7:43 that I sat bolt upright in bed, uttered a "crap" to no one in particular, and began the get-ready-for-school routine. Which for today, for added fun, included a dinosaur costume.

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Now for something completely different

A post about my kids. Shocking, I know.

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Four months. That's how long it has been since my daughter had a seizure. That makes me wanna do a happy dance. Jiggity jig. That's the easy answer to the question about how Ella is doing. If you want to focus on things like development or long-term prognosis it requires no less than ten minutes of your time and an internet connection to better assist me in diagramming the brain (just ask Sara who asked about Ellie last night--thanks, my friend, for wanting to understand the full picture). I jest. Mostly.

It's complicated though. I have adopted the phrase, "she's doing great, considering. . ." and then I trail off. Because we have been to the brink and know how devastating infantile spasms can be, but it's hard to paint that picture for anyone else who is removed from the situation. I really don't want to be overly dramatic or doomy and gloomy about it. But without showing people just how catastrophic IS can be, they don't have context for understanding how well Ellie is really doing.

Even so, I've learned that other folks just want the cliff's notes version, and that's okay too; sometimes it's enough just to say, "Yep, she's doing great--4 months without seizures. Thank you for praying." and leave it at that.

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Cooper went to the dentist for the first time today. He did really well, and I am completely proud of him. I know that I'm not objective in the least when it comes to my kids, but I kinda think he makes a really good impression on other people--like his zeal for life rubs off on them and brightens their day. I could be wrong (and again COMPLETELY biased), but I think people remember interacting with him. I just love watching him work the room; it's something to behold, that's for sure.

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Jackson continues to be a little sponge, soaking up as much information as possible. His thirst for knowledge is unquenchable (is that a word? i typed it and now i'm all unsure about it). He asks about God and the world and how babies get into mommies' tummies (yeah, pretty much asked about sex the other day) and so many other things and has this amazing empathy for others all of a sudden. Like he can understand that other people experience things differently than he does and that their lives are separate from his. I don't have a sophisticated enough vocabulary to explain it unfortunately, but it's like a switch came on and he can take ideas and run with them to predict future occurrences. He asks a. lot. of questions, but they are such intelligent ones that I am really enjoying the conversations that come from answering them. So neat to see the world through his eyes. I really hope I can continue to choose to answer them honestly and not grow fatigued by the sheer frequently and quantity of them.

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Let's try not to psycho-analyze my choice to put the following news to the bottom of a lengthy post about my kids too much, but I would be remiss if I did not mention that today is our eighth wedding anniversary. God has been faithful to us, and we are so blessed. I love you, Chris! Thanks for walking through this life with me. I wouldn't have it any other way.

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Awareness

OCTOBER 11TH-17TH Providing pediatricians, child neurologists, parents and caregivers with objective educational tools which will increase the understanding of IS. Click Here to Learn More

Apparently, there was a big pediatric neurology conference in Kentucky last week, and to coincide with that some folks with the Child Neurology Foundation designated it as the first annual Infantile Spasms Awareness Week.

There's some controversy surrounding all this (if you're interested you can go here and here to read about it) namely because it is sponsored by Questcor, the company that makes ACTH--which as most of you know is one of the frontline treatments for infantile spasms.

I'm certainly not one to buck the system, any system for that matter, but I am puzzled by all of this.

Here are my thoughts: for one, we're talking about a pediatric neurology conference, no? Well, I would hope that neurologists, especially of the pediatric variety, would already be aware of infantile spasms. Sure, it is a rare disease, but I've read somewhere that it accounts for nearly 75% of all cases of epilepsy in the first year of life. Based on that, I'm pretty sure they know what it is (if not, that's incredibly scary), so this seems to me to be an instance of preaching to the choir. Wouldn't the effort be better spent in educating pediatricians (as the above mission statement seems to suggest is one of the goals), who are usually the first practitioners that see these very special children? A quick powerpoint lecture entitled "Infantile Spasms: not just another case of reflux" in peds residency programs would go a long way I should think.

For two: even in my brief time of studying IS, I've come across not one but two frontline medications used to treat it. ACTH, which "worked" for Ella as far as we know, and vigabatrin. So, it seems to me that an awareness week sponsored by only one of the drug manufacturers could have quite a slant to it. (I've read as much in other places (can't find the links now, sorry), that the awareness folks are claiming that use of vigabatrin is only indicated in cases of IS caused by tuberous sclerosis and not the greater IS population at large.)

For three: What exactly is the goal of this awareness week then? To educate whom? And about what?

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We were fortunate in Ella's case to receive a relatively early diagnosis and subsequent treatment, but even so I have some frustration about how those early days went. After we went to the ER, our pediatrician, bless him, immediately assumed that he was observing infantile spasms in our girl only to be overruled via phone by the neurologist from Children's. Therefore, Ella spent two weeks on phenobarbital (usually not very effective in IS but at least decreased the frequency of her spasms and ended their clustering) while waiting for an outpatient EEG, when really she should have been sent straight to Children's to undergo that testing and be started on ACTH immediately. If Ella were still suffering from spasms at this point, I would blame this delay entirely.

So, there's definitely a need for awareness. I just think the scope needs to be larger and more well-defined. I do understand that this is the first year for this campaign, and so I am hopeful that it will gel in future years. And hey at least we got a fancy website out of the deal.

And because I couldn't put it better myself, I'd like to share some thoughts about this awareness week from Sinead, a fellow IS parent whose 2.5 year old daughter was diagnosed with infantile spasms at the beginning of this year after a prolonged history of seizures.


"What do I want from IS awareness week?

No parent should ever have to diagnose their child on YouTube 

No parent should be told that their IS child just has colic, reflux or a delayed startle reflex.

No parents should be offered the choice between keppra and depakote as the first treatment

Neurologists should put out an agreed statement on treatment protocol

IS should be brought to the attention of pediatricians, nurses and nurse practitioners as an emergency condition that it is valid to refer a child to the ER with. 

EI therapists should have a pool of information on the best way and the best intensity to treat children and help them close the gaps."

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Cuteness to start your week off right

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Photo shoot

This is how attempts at taking pictures usually go in our house.

Not bad

Going

Going

Going

Just about gone

And these are just included for cuteness.

This little girl turned nine months old yesterday.

I can't imagine our life without her.

You are loved, LaLa!

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Deep questions

Earlier tonight, Jackson brought me into the middle of his ponderings. I don't have as much context for them as I did before he started school, so it's hard to know where he's coming from. "Mom, the earth is spinning, right?" I replied, "Yes. (trying to anticipate his next question--if you're around him enough you learn to do this) Very slowly though. We can't really feel it." He followed with, "What would happen if the earth stopped spinning?" (pausing to gather my thoughts, wind nearly knocked out of me) "Welllllll, I think that would be very bad for life as we know it." (wait for it) He: "Why?" (ah, there it is) Me: "Well, for one thing, we either would never see the sun or we would always see the sun, depending on what side we were on. And I think both situations would be really bad for all the plants and trees." And then we went on to discuss how much all living things rely on plants to live.

This was not the first but the second conversation we've had about how plants "work" this week. Which reminds me, does anyone have their 8th grade life science book still lying around? 'Cause it looks like I've got some brushing up to do. Waaaaay earlier than I thought I would need to do so. And I'm sure that this spinning has a lot to do with the weather too, so perhaps I should read Michael Crichton's offering on the chaos theory in Jurassic Park again. . .. My little pea brain almost explodes to try to think of every thing else that relies on Earth's rotations.


Ooo, looky, I just wikipedia'd it:

Physical effects

The velocity of the rotation of Earth has had various effects over time, including the Earth's shape (an oblate spheroid), climate, ocean depth and currents, and tectonic forces.

Now you can join me in my exploding-brain state.

As I see the world through my four year old's eyes, I revisit a wonderment that I've rarely felt since entering adulthood--Louie Giglio videos aside (the parts about the pale blue dot and the bella pulsar stick out for me in this segment but his entire Indescribable talk is amazing). I am completely geeking out that the earth rotates y'all. And not just that, but that it does it in such a regular manner that you can (nearly) set time constants by it (adjusting for tidal fluctuations and all of course. Incidentally, what did we do before the internet? I mean seriously). This is an awesome Creator we're talking about here.

Nehemiah 9:6
You alone are the LORD. You made the heavens, even the highest heavens, and all their starry host, the earth and all that is on it, the seas and all that is in them. You give life to everything, and the multitudes of heaven worship you.

Isaiah 40:12
Who has measured the waters in the hollow of his hand, or with the breadth of his hand marked off the heavens? Who has held the dust of the earth in a basket, or weighed the mountains on the scales and the hills in a balance?

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On kissing and mediating

Jackson told me the other day that he didn't want to kiss me because he was afraid he'd turn into a girl. Fortunately, it was a short-lived fear because he has already kissed me several times since then. But last week, I realized that he's now too embarrassed to kiss his brother before going into his classroom in the morning. I thought I got at least another year or two before he became too cool for school. le sigh. Poor Cooper doesn't understand and gets his feelings hurt, so there I am stuck between wanting to protect my pre-kindergartener's street cred and trying to keep my little guy from having his heart broken. I think I'm starting to see why my parents (all parents everywhere it seems) adopt the mantra of "work it out among yourselves." There really is no right answer sometimes.

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In which I brag about my eldest

I tell you what, I couldn't be more pleased with Jackson's school experience thus far. I am repeatedly reminded of what a blessing it is for him to be able to participate in such a program.

We had parent-teacher conferences last week, and I was excited to learn that Jackson is right on track in most areas. In some, he needs some more practice. So now, we're finding creative ways to incorporate such practice. He and I have been playing an ongoing rhyming game since then, for example. He seems to be getting the hang of it, but it's a pretty hard concept to grasp so we press on. It turns out that not as many words rhyme as I initially thought. Hm. So now we're focusing on "short words." :)

Jackson's really funny, mostly without trying to be. His stories and explanations are a trip. I love how his mind works. Lately, he's been telling me about his brain and all that it wants him to do. He'll say things like, "My brain wanted me to do [that], so I did it." Or, "My brain taught me that."

He is so observant. He notices changes that no one else does. He remembers everything. This means you gotta be on your toes and remember everything too. He asks a bajillion questions every day; I used to think that it was just typical four-year-old stuff, but his teacher and several others tell me his questions are more ubiquitous than most. I'm really glad he is so interested in how the world/everything works, but I have to take a break every now and then. "Buddy, I love your questions, but mommy needs to take a break for a few minutes, okay?" "Okay." Then he pauses for point four seconds and jumps right back in.

But the real reason I'm posting about Jackson in the wee hours of the morning is that I wanted to share some of his recent artwork with you. The kid could make a momma absolutely burst with pride.

Self portrait.




















Family portrait.

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Children's Books Tuesday: Guess How Much I Love You

Have we noticed a theme yet, kids? Yeah, I kinda like the books that talk about lovin' my lovelies. And they do too. Especially the ones that we can act out together. Guess How Much I Love You by Sam McBratney meets both criteria.

If you were to visit our house during a reading of this book, you just might witness some of us jumping as high as we can jump or laying down on the floor with our feet in the air or some other type of serious silliness. This book gives us much to giggle about and much to hug about. It is a quick, sweet read.

In the story, Little Nutbrown Hare tries to quantify his love for Big Nutbrown Hare, but he quickly realizes that Big Nutbrown Hare's love is just as big if not bigger. Reminds me of our relationship with God.

The last page is just awesome.

It ends with: "I love you right up to the moon--and back."

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Hop on over to Sue's blog and check out some other great children's books!

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Getting away is a great thing!

Chris and I drove to Dallas this weekend to watch the Razorbacks play in Cowboys Stadium. By. our.selves. Yes we did, and it was glorious. And our Hogs won, which makes it infinitely sweeter.

Our parents took such great care of our babies and the dog. We are so grateful to have this opportunity and much-needed chance to get away for a few days.

I missed our kids, but it wasn't as hard for me to be away from them as I feared it might be. Really, the only problem and the biggest hassle for me was finding time and place to pump all weekend and then storing the milk afterward. I even pumped before kickoff at the game. I can't prove it, but I may be the first lady to pump while standing in a bathroom stall at the brand spanking new stadium. I'm sure they probably have some kind of room set up for nursing mothers, but I didn't want to take the time to find it. As it was, because we were in handicapped seating, it was quite a feat just to get to our seats, so it was enough just to find a bathroom even remotely nearby. It was funny because Chris thought I might want to pump right in our seats so as to not to miss any of the action and wondered if I brought my nursing cover to do so. I told him not a chance. I already knew that this wasn't feasible especially since we were front and center in our section, but he didn't really get why I wouldn't want to do this until he saw our seats in person. We had a good laugh at me trying to be discreet in the middle of everything. Heck, we made it on the big screen twice from there! Of course, I wouldn't have been the only one to flash the big screen that day, had I been so inclined to pump in my seat. Apparently, there was a "wardrobe malfunction" for one poor A&M fan that happened to occur the very moment that she was being broadcast to the entire crowd of 70,000 plus. What are the odds?!

We saw the very inner-workings of the stadium as we wheeled to our seats. Saw the club where the Cowboys run through to get to the field. Rode the elevator with the Razorback mascot and a handful of cheerleaders. Saw Jerry Jones in his element. So many stories. So many laughs. Such good times.

Here are some pictures from our trip:

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Must-have baby items (take 2)

I'm reposting this to participate in Kelly's Show Us Your Life bloghop. It's still so true for us with Ellie as it was with Cooper and Jackson, and I've updated it where necessary.


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Ahhhh, baby products. It's funny how many of my conversations these days are on this very subject. I feel like I've become quite the expert in the last four years and seven plus months. Namely, I talk about my Ergo a lot. I wish I had a dollar for every time a mom has approached me when I'm out and about to ask me what kind of baby carrier I was using; even our (male) pediatrician took a moment to inquire once. In general though, I'm pretty passionate about all baby stuff--what works, what doesn't, what you shouldn't leave the house without. And I can pack a mean diaper bag! Let's just say you only have to pack an empty wipes box or forget to bring diapers once, and you'll never do it again.

Below are some comments I shared on friends' blogs about the same subject.

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okay, i have some thoughts on this subject, but let me just say that you will come to learn what works for you and what doesn’t, and it’s just a little different for every family.

Things I personally wouldn’t go without: two diaper bags–a small one for just running out the door for a couple of hours and a larger one for longer (or overnight) trips/leave with the grandparents when they babysit kind of thing. I didn’t learn this until baby number two, but it has been a huge help! Medicine: I always carry a bottle of tylenol infant drops because ya never know when teething or fever will be an issue (but you can almost bet you won’t be at home or near a wal-mart when it is). Diaper cream: good to have with you, but not necessary with every diaper change (yay!). We just use it when one of the boys has reddened skin on their bottoms. A baby carrier (like one that you wear): again, something that I didn’t find until the second child, but I use our Ergo carrier almost every day, especially when I go grocery shopping or to church. I recommend the Ergo specifically, or if you feel the price is a little steep (which is understandable), some kind of sling-type carrier. I would steer clear of baby bjorns or the snuggli type carriers because they put the baby weight on your shoulders and you tire quickly. I don’t know how the slings work, but they seem to be versatile enough to accomodate several different carrying positions and so is the Ergo. We have a stroller too, and it is very useful to us. But the baby sling/carrier is nice for those times when you need to get in between aisles or are already going to be pushing something (like a grocery cart). They are also nice when you need to see to some housework but the baby wants nothing else but to be held. A little wipes box: about an inch thick, it can hold about 20 wipes or so, and I NEVER LEAVE HOME WITHOUT IT! I really don’t know what I did before having one :). Diapers: all disposable diapers are about the same really. I usually get whatever is on sale, though I prefer pampers swaddlers best. I like the kinds that have stretchy tabs because they seem to fit better and leak less. Diaper pails: I agree with the above comment about diaper genies. We have a diaper champ (target carries them), but we still keep it in the garage because it just doesn’t keep the stink in. Often I just use wal-mart sacks and a regular trash can too, still out in the garage of course. I’m for changing tables, or at least some kind of flat surface that is closer to waist-height. It’s much easier to change a diaper if you’re not all hunched over. Infant car seats: I like the ones that double as a carrier, but if you have big babies you can only use them for about 6 months or so before they outgrow them. This is something that would be good to borrow. Otherwise, a convertible carseat that accomodates children 5 to 100 pounds is a good investment and is useful for many years. Clothes: onesies for around the house, pants over the onesies to go out, and footy PJs to sleep is how we roll for boy babies. I go a little fancy with Ellie when we go out just because it's so much fun. Shoes are not really necessary until walking (socks are just fine for keeping toesies warm), but if you can find a cute cheap pair they are nice as accessories.
Okay, now, about baby equipment: high chair, bumbo seat, boppy pillow, vibrating bouncy seat, swing, exersaucer, and the baby gym mat all have proven to get lots of use in our house. But most, if not all, of these things were gifts. I think the high chair is a neccessity and all the other things are luxury. However, I do recommend at least one piece of equipment to put the baby in where you can have your hands free but be nearby (again, housework and, gasp, eating can be accomplished this way). And of course we have a crib. The first few months, though, all our kids stayed in a little bassinet next to our bed when they were nursing so frequently. It’s nice to have a little travel crib like that too so you can, well, travel with it.

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here’s my two cents (well, more like two dollars):
on the nursing bra thing, whatever brand you get, avoid the hook and eye closure at the top!! You pretty much have to use two hands to fasten them and if you’re nursing a baby, you never have more than one hand free (if that!). I discovered the tank nursing bra (thanks, Aim!) with my third, and it makes nursing in public SO much easier because you are so much more covered.
on bottles, we use avent and like them quite well. they are wide-mouthed, though, and are not compatible with most breast pumps. this is not a problem for me because i use and love the avent isis hand pump (the one with the “comfort petals”–don’t knock it ’til ya try it!). i think i’d like to have some of those playtex ventaire bottles for trips because they seem like they would work better when my baby is sitting upright in the carseat, as opposed to being reclined. when i work, i use my electric pump–medela is by far the best on the market (and is the brand all hospitals use). if you need electric, i have the pump-and-go model by medela, and i recommend spending the extra money to get the “backpack” version that has the zippers. i’m in my thirtieth month of pumping and the cheaper bag with the velcro has long since given out!

other things to take to the hospital: for mom-to-be, take a robe and slippers. you won’t feel like wearing street clothes at first but you’ll want to be more “dressed” than those hospital gowns allow for. and do take maternity pants to wear home. you will have lost some of your baby weight, but your body is not ready for pre-pregnancy jeans just yet! :) you'll still look 4-5 months pregnant afterward. for the baby, i like to take a little stuffed animal or lovie blanket to keep in the hospital bassinet with the baby; that way when great-aunt bessie is looking at all the bundles helplessly unknowing of who to coo at, you can tell her that your baby is the one with the pink bunny (or whatever). i also recommend taking a pair of baby nail clippers. their little nails grow in the womb. both my boys drew blood when they scratched their faces within hours of being born!

and that reminds me: both my boys and my girl LOVE their lovies. i had no idea what they were with my first (and if you don’t know: they are little silky squares of blanket, some have a flat stuffed animal look). i just happened to have purchased one in the crib set i got at a garage sale. i decided to try it out one day after my older son had been in the world a few months, and he took to it right away. he’s gonna be three in march and still takes it when he sleeps or needs some extra comfort during stressful situations (like the mother’s day out drop in the mornings :).

and just to reiterate silly me's points:
paci to the hospital–yes, yes, yes. we found the first years soothie brand (at walmart) with our second and he LOVES them. mam is a good choice too, and they make a great paci clip–this is a must have when you go anywhere because the babies do not keep them in their mouths (and fuss at YOU about it) but at least with the clip it’s not falling on the floor a bajillion times.
smaller than you think outfit to the hospital–again yes! and you’ll want it for the hospital pictures too. if you have a special blanket, bring it as well because they can use it as the backdrop of the photo.
the onesies brand DOES stretch more than others, and the material is thinner. not my favorite, but i use them as undergarments when layering and that works pretty well.
ergo carrier–i use it everyday! a friend who saw me in wal-mart once said that she didn’t remember what i looked like without it.

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