A quick update--Mildred and Ella

My grandma Mildred passed away on Tuesday evening, the 22nd. Therefore, we will be traveling for this holiday weekend after all. I'm in the throes of packing and organizing, so I haven't really begun to process what this loss means to me; I will save the bulk of what I'd like to write about her for another day. I am sad, and I will miss her greatly, but more than anything else I'm just so thankful that she has been such a huge part of my life.

Ella's EEG yesterday did not accomplish what we had hoped. During the four hours, we did not observe any facial movements or other overt seizure-like activity. I'm actually not sure what is next for her at this point (and the clinic is now closed until Monday, so we won't know anything until then). On the one hand it's good that she isn't having anything frequent, but on the other hand she is having SOMEthing going on that we will eventually need to see on EEG in order to know how to treat it. So, she may still need to go back to Arkansas Children's Hospital to be monitored on the video-EEG there.

Just as I was typing this, Ella pushed up to sitting all by herself!! I celebrated like crazy with her, and she starting jigging and jiving knowing that she had done something good. In the face of great adversity, she continues to blow me away with her amazing progress.

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Catching you up

So, here's the deal. Ella's been having these strange facial movements for approximately the last month. I haven't mentioned them here previously for several reasons. For starters, they were isolated enough in the beginning that it was hard to know if I was just imagining things; enough time would pass between events that I would convince myself that it was just rare and normal baby stuff. Also, let's be honest, I've been in denial. Lastly, and this one's hard to explain, when you have a (not sure what to call her but let's go with) chronic child, it's difficult to be objective about what you see; you don't want to automatically assume the worst, but you know that the chances of what you are seeing being more of the disorder are fairly high so it therefore shouldn't be ignored. Oh and one more thing, when writing about aforementioned chronic child on my blog, it's important to me that I'm not constantly crying wolf with regard to her status because I know that many others are invested in her well-being too.

Instead of blathering on and on here about what Ella's face may or may not have been doing, somewhat sheepishly, I first called about these facial movements (along with the few potential head drops I had seen) to Ella's neurologist right before Thanksgiving. Dr. B had me increase Ella's dosage of Keppra (her only remaining anti-seizure med) and then saw her in the clinic the following Monday. At that appointment, the doctor asked me to tell her what was going on, and I described the events as best I could. She also asked about frequency, and I felt completely silly having to admit that it hadn't even occurred to me to keep track of that (again, I think denial played a role here). I couldn't even ballpark it for her. Dr. B told me that we would continue with the new dosage of Keppra and follow up in 2 months. She also asked me to try to get this stuff on video, which I hadn't thought to do. Another duh! moment for me.

It took me more than two weeks to catch anything on video because the strange movements are brief and infrequent. Two nights ago, though, I finally did observe several in a short time frame and ran to get the camera. I filmed her for about a minute, then I uploaded the clip to youtube and promptly sent the link to our local neuro Dr. B and Dr. C--one of the foremost experts in infantile spasms. I asked them what they thought she might be exhibiting. What I really wanted to say was, "Please tell me the infantile spasms haven't come back, please tell me the infantile spasms haven't come back."

Dr. C emailed back within a few hours. My admiration for this man grows with each interaction. He said that Ella was adorable and that he could tell she'd made developmental progress since the first video. His guess is that it is either seizures or a movement disorder. He recommended a video EEG to determine which one. In a second email, I asked Dr. C if they did end up being seizures whether he thought they were infantile spasms. He replied that he suspected them to be partial seizures instead. So that's a relief for the time being (though partial seizures can evolve into IS). He also further clarified that he was not terribly convinced that Ella had a movement disorder--which is usually a genetic malfunction in nature and has nothing to do with her brain malformation--because it would be unlikely that she would have two rare and completely unrelated problems. Seizures just makes a lot more sense. He then reiterated the need for a video EEG to confirm.

But there's the rub. As far as I know, long-term video EEGs (the kind of EEG he's talking about which typically run for a minimum of 24 hours) for children are not performed in Northwest Arkansas. So, if our local neurologist (who apparently isn't an emailer) requests a video-EEG (and I certainly hope she does) (after I take a hard copy of the facial movement video to her tomorrow), I think we would have to return to Arkansas Children's Hospital for that. Which is three hours away. During the week of Christmas. Not great. But God is good all the time, so we'll manage, with Him as our strength.

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To sum up: Ella's having new facial tics, caught on video and sent to doctors, partial seizures suspected, needs EEG confirmation, waiting for actual order from OUR doctor, may have to go to Little Rock (and if so, most likely sooner than later), God is still good.

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There is another story to be told here, one that involves abnormal labwork from Ella's hospital stay and pending follow-up testing for some pretty serious disorders. But it is late, and I'm having trouble keeping my eyes open. Besides, other than the lab levels that were outside of normal limits, she's had few if any signs or symptoms of the disorders in question. I'm fairly confident that her follow-up tests will come back normal. Specifics on this to come later.

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Eleven months

Easy-going,

Laughing,

Loveable,

Adventurous

What are you up to this month, Ella?

You go with me everywhere, including dropping off and picking up your oldest brother at school five days a week. Even if that comes during what would otherwise be a feeding or a nap, you do not seem to mind too much. Especially if I wear you in the Ergo baby carrier.

You've been letting me put a winter hat on your head, and you keep it on too (unlike your brothers did), but you won't leave a headband in place for any length of time at all--it's just too enticing and chew-worthy for you. You wear sizes 12-18 months in most things, and maybe even 18 months in pants, since you are so long. I've been having to get creative with your outfits since most of your pants are too short, so you've been wearing baby leggings to keep your lower legs covered. You are wearing size 3 diapers, but after polling my Facebook friends about it, I think I'll move you up to size 4 next time I go to the store.

You still take a pacifier, you still nurse almost exclusively, and you will take a bottle IF it has breastmilk in it. You seem to know right away if any formula is present, even if it's mixed with breastmilk. We're working on getting you to try other liquids because it's nearing the time when I would like to wean you. You take baby food for a few less-than-happy-about-it moments, and then you're done. You take small bits of soft food, but you tend to get choked on it. I just don't think your ready for much in the way of actual table food. I think you will be evaluated by a nutritionist and/or a speech therapist soon, so maybe they can clue me in on what is going on with your eating. You certainly are not losing weight, though :).

You still wake up during the night to eat, once and often twice. I'd love for this to not be the case, but I'm not sure how to work on it. There's a baby sleep book I'm hoping to get my hands on that will surely give me some ideas; I can't tell if it's because you're sleeping too much during the day, if you're not eating enough solids and therefore are legitimately hungry, if you are just looking for comfort, or if it's some combination of all three.

You have eight teeth, and I love your toothy grin. I think your gumline is changing shape in the back suggesting that perhaps you are working on your molars; if so, they aren't causing you much pain that I can tell.

You are making more noises lately. You have a chew-on/play-with-toys noise--which is kind of an open-mouthed hum with a few "ahh"s and "duh, duh, duh"s mixed in there, and you have a similar humming noise when you are in the process of putting yourself to sleep; the difference is subtle, but I got you figured out, babe :). You grunt and growl at toys as well. And you have a sing-song, squeal-y "da-DA-da" that you use when you are really into what you're playing with and when you hit two toys together, which is a new skill. The boys make you laugh; the louder they are, the funnier it is to you. You have a squeal that is reserved for excited talking, especially if you've woken up in the crib and are waiting to be rescued.

A non-comprehensive list: you sit unassisted, army crawl (faster all the time), grab your toes, bear weight through your feet when you stand assisted, rock back and forth in all fours, and are getting better with your core-strengthening exercises. You've been sleeping on your stomach a lot lately, but in general you're just all over the crib now. It's always an adventure to see where you've ended up after a night's worth of sleep.

Basically, I just love you to pieces. I'm so proud of you and so thankful to be your mommy.

♦

Dec-ehh-mber

I think I am kind of tired of December. I mean, it's my birthday month and of course there's Christmas, but otherwise I'm not a fan. Mostly it's financial reasons--something always seems to go awry during this time of year. For example, two out of the eight Christmases we've shared as a family were peppered with unexpected layoffs. We've had two major repairs to the heaters at our duplex in the last two months. We have renters that sign contracts in the late Fall, so when they move on, we are left to get new renters at the end of the year. If we are unsuccessful and the duplex stays empty, January 1st demands another mortgage payment whether we have the rent income or not. The hospital tends to have fewer patients during this time for some reason, so I get called off at work a lot more too. I love being home instead of working, but then those paychecks come in and it's just not pretty.

All the while, the world around us is in a fever-pitch of rampant commercialism known as the holiday shopping season. Against my better judgment, I went to Toys-R-Us yesterday to see about some presents for my kids and was quickly overwhelmed by the whole scene. I'm glad I was by myself because I don't think the boys could have handled it. As it was, I had to find a quiet corner just to regroup and take stock of my choices. The one thing that Jackson has consistently asked for this year is a Buzz Lightyear watch. I already found one on eBay, and it--along with a comparable Woody watch for Coop--is hiding in my closet waiting to be wrapped. I've been excited to give it to him because I like getting him things that he asks for. But yesterday, as I was looking at other Toy Story stuff to go with an emerging theme, I saw a way cooler Toy Story watch (in it's own collector's tin even), and I got to feeling inadequate about the watch I'd already bought. I had to talk myself down about it right there in the store. "He's four; he's gonna tear up or lose most anything you get him right now." "He doesn't know about this better watch and therefore won't miss it." "There's no way you can send back the watch you already have, so it'd be silly to buy another one." I prevailed and left the watch for some other parent to buy, but the worry about whether he'll like the one I got him enough remained. It's not like I want a child who requires only the biggest and the best and more of them, but it's hard to separate my good intentions from years of effective advertising and a deeply rooted love of stuff. Remembering the orphans helps; I hope I can keep all this in perspective for their sakes and for my own children's sakes.

Finally, there's the weather. I need sunlight. NEED it. And in December, I only see it for total of about 3.76 hours. That's not even remotely enough. Besides, the sunny days seem to be the most frigid, so I can't really even enjoy them when they're here.

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Trying my hand at posting a video

On the off chance this works (and it will be a small miracle if it does), I'll preface this by saying that it is from a recent Razorback basketball game wherein we discovered Ellie really likes to hear people whistle.

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Memory card Monday--Cribz edition

The only thing constant about our bedtime routine is that it's constantly changing. A few months ago, when I was having a rough time putting my boys to bed and having them stay there, I decided to convert Cooper's toddler bed back into a crib for the time being. It has been better since, with Cooper remaining in the crib for the duration of the evening. Around the same time, after finishing up another brief stint in the tent, Jackson decided to join him there. Love!

Ellie has taken to sleeping on her tummy more often than not, all the while kicking off every last sock and blanket given her.

Here she is, the masterful sitter. She's come a long way in physical therapy and is getting stronger all the time.

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Coo Cooks

I guess it was bound to happen. It is part and parcel of growing up, so I hear. Cooper has been asserting his will and is really wearing my patience thin lately. The transition seemed to occur overnight. One morning, he woke up on the whiny, demanding side of the bed and hasn't been quite right since. I'm not the only one who has noticed, which makes me breath a little sigh of relief to know it's not just me. For instance, I ran into a friend of mine from the New Life Ranch days at Sam's yesterday. My two youngers were in the front of the cart. Cooper was almost completely obscured behind a double-sized box of Lucky Charms and working hard to keep himself there (out of shyness? where'd THAT come from?), when he wasn't fussing about his sister touching him (does it really start this early?) that is. I said, "Can you say "hi"?" He quickly shouted in response, "No!" And sweet, understanding Marla replied, "Ohhhh, you're two, aren't you? I have one of those at home."

This is new territory for me. Jackson didn't have The Terrible Twos until he was three, and even then I'd consider them merely Mildly Troubling Threes. Though I have vague memories of not enjoying his fits of stubbornness or tearfulness over the slightest thing, it just didn't seem as big of a problem as Cooper's strong-willed, demanding, sullen ways of late. Like that's his default mode now. Makes me sad. I find myself saying "Can you just be happy, Coop?" frequently these days. Oh, and because I like hopeless causes, I also can often be observed trying to reason him out of his fits. Yeah. It's going as well as you might imagine it would.

I still have much to find joy in, however. The boy is brimming with life. Notices everything. Is completely fearless (gonna be the death of me, this one). Jumps up and down when he gets excited about something, which is often. Says things like, "Mom, this is 'licious!" "I see uh 'Bama flag (thinks the American flag is called "Obama" and I have no idea how he made that connection, but I think it's pretty smart.) "Look, Momma, it matches. Like the 'nother one matches." "'Kay, mo-ore, Momma." "To fini and beyond!" "Momma, I miss budder." And perhaps my favorite right now 'cause it's fairly new: when I say I love you, he responds with a breathless and very serious, "too." He's quite the conversationalist, employing that same seriousness, when talking on the phone too.

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My hair is ridiculous

A post in which I started to write about my hair but then realized I had a far greater purpose to write about today. Instead of trying to split them up into two separate posts, I put 'em both in here, with barely a segue. 'Cause that's how I roll.

(with lots of parentheses thrown in)

(and some hyperlinks) (sorry, couldn't resist)

First of all, yes, my hair--specifically the bang-al region--has achieved new levels of ridiculousness that must be witnessed to be fully appreciated. I would take a picture to demonstrate this ridiculosity for you, but unfortunately the camera battery is currently charging. So you'll just have to trust me on this one. After the baby was born, my hair did that mass exodus thing that many of you have also experienced, and then it began growing back with a vengeance. The bangs, dear goodness the bangs; how can I describe them to you? Let's go with: part lion's mane and part Flock of Seagulls. As I mentioned on facebook last week, they have achieved near living, breathing organism status; so much so that Ellie is reaching out for them and (what one could only be described as) trying to talk to them. I really have tried to do something about these crazy bangs (on the rare occasion when I've passed in front of a mirror and make the time), but no amount of product has been able to spackle it back into place satisfactorily. So, I have just embraced this new (hopefully temporary) look of mine. I choose to consider it a daily test in living out the principles of 1 Peter 3:3-4--

"Your beauty should not come from outward adornment, such as braided hair and the wearing of gold jewelry and fine clothes. Instead, it should be that of your inner self, the unfading beauty of a gentle and quiet spirit, which is of great worth in God's sight."

At least, that's what I'm telling myself anyway.

Second of all, sorry for the bloggy absence last week. We traveled south to visit family for Thanksgiving, and internet access was not available. It was actually kind of a nice break.

Fun fact: Ella's pediatrician could be the stand in for the dad who plays opposite Julie Bowen on Modern Family. (If you aren't watching this show, why not? It's hilarious!) I stopped just short of telling the good doctor that because if he knew what I was talking about he just might have been slightly offended. See, the character is somewhat of a boob, though that's not why I believe there's a resemblance.

And now for the serious portion of this post:

This month, as part of the Megaphone of 1,000 Voices movement, I will be blogging about Children's HopeChest. It is an orphan care ministry, currently partnering with orphanages in Africa and Russia, in order to give these special children "confidence to fly and a safe place to land." My participation in this all stemmed from reading a based-on-real-life-can't-even-fathom-living-this-way novel that I won last month. The book is called Scared, and it focuses on one hardened journalist's journey to AIDS ravaged Swaziland and a precious little girl who gives poverty a voice. The book is written by Tom Davis (CEO of HopeChest). I will be giving away the copy that I won later this month in my own (first ever) blog contest.  And soon, I hope to have information to share with you about another, even more exciting giveaway.

Today is World Aids Day. Prior to reading Scared, I probably wouldn't have given this much thought because the problem seems daunting and what can little ol' me do to help? Well, here's a good place to start. I encourage you to get involved in whatever way you can in releasing children from poverty and the devastation of the AIDS epidemic. Sure, it seems overwhelming, but if even one child benefits from your efforts, you will have made a lifetime of difference.

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