Sometimes I try to use Google like a crystal ball

When people hear that my baby girl has a seizure disorder called Infantile Spasms, often one of the first things that they ask me is whether she will grow out of it. My answer is never an unqualified yes or no, as I'm sure they are expecting. It's more complicated than that, or at least I am. I haven't quite decided which. . .

I've come to the conclusion, though, that the name is to blame for this conundrum. "Infantile" suggests something that will be grown out of once the child leaves, well, infancy. (and it also makes it sound rather benign and piddly when in actuality it is absolutely devastating to development, but I digress.) Which is technically true, but not in the way most mean it. Yes, the brain grows out of this type of spasm because it only responds to the underlying etiology (cause) in this certain way when it is immature. Unless the spasms are halted by intervention (medication or surgery), the brain only "grows out" of them usually to morph into another form of difficult and varying seizures that are not typically very responsive to treatment. Read: scary bad prospects out there.

Anyway, what I think people who ask if Ellie will grow out of infantile spasms are getting at is "how will she turn out?" Sorry if I'm projecting, but that's at least what I'm thinking exactly 100% of the time.

So my answer typically goes a little something like this (usually without quite so much medical-ease but I can hardly help myself): "Welllll, her best chance to develop normally is to stay spasm-free (nine months and two days so far, but who's counting), which she achieved after a six-week course of high-dose hormone injections last summer. She is developmentally delayed currently, but she is making wonderful strides at catching up to her peers. (and I always finish with this) I have great hope for her."

Not that it's not just a thought away at all times anyway, but actually getting to talk about the potential outcomes often makes me go home and google "infantile spasms prognosis", searching for anything I might have missed the first time around, as if in the magic of the information age some new tidbit published yesterday will finally shed light on just exactly what we're in for later in her life.

What I really want to google, if I'm being honest with you, is: Will my daughter walk? If so, when? Will she need leg braces (my newest fixation since the physical therapist at Ella's new school asked about the possibility last week)? Will she speak? Will she have obvious deficits? Will she be socially competent? Will she be normal?

I know it doesn't work that way, and really I'm not sure what I would do with that information if I had it anyway, but it doesn't stop me from wondering.

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Finally Spring Break came through with some nice weather

As I sat in the kitchen, both overseeing my daughter's lunch and watching through the window at the boys playing in the backyard, I was thankful for the much needed sunshine and the few moments of relative peace it was affording me.

Suddenly, in walks the five-year-old (how is it possible that I have one of those?), breaking me from my trance.

Jackson: "Mom, I've got good news and bad news."

(where does he get this stuff?)

Me: "Okaaaay."

J: "The good news is that I made you a circle of X's. And the bad news is that Cooper dumped out all the chalk."

Me, continuing to sit right there. "Okay. Thanks."

J: "Aren't you coming?"

Me: "Oh, you want me to, well of course you do, yes, okay, I'll be right there."

I just keep reminding myself that there will be a time in the not-so-distant future where my presence will not be requested quite so often. I have a feeling I'll miss the chaos when it's gone.

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Some of my favorites from the IS awareness shoot

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Wherein I try to appease you with some pictures

Poor neglected blog. I've got at least three partial posts tapped out but can't seem to get around to putting the finishing touches on them. There's just so many highlights from the last week or two. I'll try to finish them up soon.

In the meantime, how about some pictures?

Here's what my living room looked like a couple of nights before the film crew came, and what it still looks like even now. You believe me, right? That it still looks this way? Better not answer that.

Here's another angle, this one to show the throw pillows that Chris insisted on getting. Okay, now I'm just being ridiculous.

This next picture was taken with my phone, so it's a little fuzzy, but here is a shot of our dining room. I actually managed to keep it this way (until I returned those decorations on the table to my mother) for several days after the shoot because I cleared out a spot in the boys' room for the toys that had been stored in the corner in here, and now they really have no reason to be in this room.



Here's a picture of our new kitchen table and chairs. It is a late (because it took me forever to find THE table) anniversary present from my parents. You can't see it in this shot, but there's also a bench on the other side. I love this set. It is simple and pretty and has enough seating for all of us. I know we'll use it for years to come.

It's been kind of a big deal around here that Ella has actually shown interest in real food again and has been eating like a champ of late. She tends to get it all over her face, but I still think she's pretty cute.

















My oldest turns five today. I really cannot believe it. How is it possible that I have an almost kindergartener? (When Jackson learned that he had reached the age of 5, he immediately asked if he wouldn't be going to pre-K anymore, because I'd told him a long time ago that he would go to kindergarten when he was 5. So you see, the boy forgets nothing. Be warned :). He gets cooler with each passing day. I love his heart, his inquisitiveness, his friendliness, his quirkiness. He's very routine (his dad's influence) but NOT a morning person by any means (my influence). He is still quite the snuggler, which I love. Thank you for being such a wonderful helper to me, Jackson. Happy Birthday, I love you!

This little guy turned 3 on Sunday. I don't have a good picture of him sitting still, precisely because he rarely does so; instead, I had to go with the stuff-on-his-face shot. I love my Coop to pieces. He's my rock 'em sock 'em, grab life by the horns, do everything with 110% effort, spitfire of a boy. Somehow though, he manages to combine all that with an endearing tenderheartedness that melts me. Thanks for inviting me to all your dance parties, buddy. I've really enjoyed them. Happy Birthday!

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Progress

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Highlights of a Busy Week

After working nights all weekend, sleeping a little Sunday morning, showing the duplex three times Sunday afternoon/evening, and crashing back into bed Sunday night, I sleepily hit the ground running Monday morning. I dropped J off at school, then made it back home to check references, schedule carpet cleaning, gather utility information, tweak the wording in a lease, and the like. All because WE GOT THE DUPLEX RENTED!


Interspersed among all that activity, I was also readying the baby clothes for a local consignment sale that's going on right now. I don't even want to think about how much time I spent on that, but it is done, and we are making money from the decluttering efforts. And going through all of that gave me a chance to reorganize all of Ella's clothes and take inventory. Turns out, she still fits in some things that had gotten buried in the back of her dresser drawers.


Tuesday morning, I was able to paint in the living room at the duplex, while my dad watched the youngers. It was a bit of a risky venture to paint in a unit that had no running water, but I did alright. There was just one teeny tiny place where I tagged the whitish carpet with the blue paint, but I was able to get most of it out by improvising. Spit may or may not have been involved.


On Tuesday night, I dropped the clothing and other kid items off at the convention center and went home with an empty laundry basket, only to fill it back up the next afternoon. Because I consigned some items, I was able to shop early, only made possible because my mother in law was able to watch the kids in between the time I left and when Chris got home. It was awesome to go at that time because it wasn't very crowded, not too many things had been snatched yet, and the checkout lines were not long. When I came in at 6 p.m., Chris couldn't have been more pleasantly surprised at how early it was. I told him I had this shopping at the Rhea Lana sale stuff down to a science. I scored some great deals! I'll do a more detailed post next time about what I found.


Earlier on Wednesday, I did the school drop, got back home to work on the lease, and then met the new renters at the property at noon to give them the keys. I also needed to get their garage door openers working, which was a little intimidating in its potential for difficulty, but I manage to do it right on the first try. Then I went back home, fed and changed babies, and quickly turned right around to go back to get Jackson. I had enough time at home to pick up some toys and other things, and get Ellie down for a nap, before I headed out to the sale.


Yesterday was even busier than Wednesday. School drop off, grocery store, therapy, school pickup, haircut for me--first one in two and a half years, cooking, ack! It doesn't look like a lot when it is written in a short list, but every place requires me to get 2-3 children in and out of the vehicle and keep them alive between van and door--no small order with my Cooper I assure you.


And now, I am gearing up for a busy but hopefully energizing weekend of cleaning and organizing in our house. We are getting ready to host a film crew on Wednesday morning that will be chronicling Ella's I.S. story as part of the upcoming Infantile Spasms Awareness Week this Fall. I asked the producer today if we would be able to see the finished product, and he said he would provide us the link (which makes me think it will be posted on the website) and/or send a DVD. I'll certainly share it when we get our hands on it. I am excited to think that Ella's story might be able to help others with early recognition of IS and quick treatment in order to give many more babies the best chance for optimal development.


For those of you who have made it through to the end of this journal-y post, I offer you a glimpse of the new 'do. Please don't hold me to being able to style it like this ever again, but it's nice to know that my hair can behave when given a little attention.

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Stir Crazy

Warmer weather, please come quickly. I promise I won't complain when I get too hot (at least not very loudly anyway). I really can't take the dreary cold anymore. I'm tired of keeping up with so many hats and mittens for so many little heads and hands. I look longingly out the back door, ponder the dead grass under a gray sky and the still too cold temperatures. Wishing the kids had somewhere to be but underfoot. Some days, I send them out anyway.

In a weak moment, desperate for some fresh air and perspective, I even put the boys in the wagon when the temperatures tipped toward 50 one day last week and pulled them around on the sidewalks in our neighborhood. With Ellie strapped to my chest no less. It turns out that the gently sloping hill just past our street is in actuality a never ending death trap. When I came to my senses and realized just how far I had wandered DOWN the hill and that it was the exact distance I would have to manage going back UP, I turned us around immediately. Under my eleventeen layers and the warmth of a baby, I got all overheated and began huffing and puffing like the Big Bad Wolf only not as cute. As I approached the halfway point, I had the distinct pleasure of walking past a gaggle of high school students that had just gotten off the bus. Awesome.

Stay in school, kids. Because one day, if you study hard enough, you too could be like me.

So you see, I need the warmer weather, so I can keep my wits about me and not scare the neighbor kids with too much reality.

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