Thursday, January 31, 2008

Some laughs, some thinks

This story enraged me.

Bwa ha ha.

Tuesday, January 29, 2008


Cassandra over at Lutradur and Lace tagged me for this Book Meme. I'm trying to be better about replying appropriately and in a timely fashion to such internet social niceties (hee), so here goes.

The Rules:

1. Pick up the nearest book (of at least 123 pages).

2. Open the book to page 123.

3. Find the fifth sentence.

4. Post the next three sentences.

5. Tag five people.

I went for the one that's been longest on the nightstand. The Artist's Way, by Julia Cameron. (I've wanted to read this for years and years and I am reading it, just because it's a paragraph or two at a time, taking second place to devotionals and parenting books...)

Selecting a challenge and meeting it creates a sense of self-empowerment that becomes the ground for further successful challenges. Viewed this way, running a marathon increases your chances of writing a full-length play. Writing a full-length play gives you a leg up on a marathon.

Now, five people to tag.

Out of the Gray

Tree River

Just C

Daniel John-Maxwell Spranger

The Foil Hat

And, if you're reading this, tag, you're it. (Bwahaha!!) If you don't have a blog, leave your three sentences in the comments. Seriously. I've got such a diverse bunch of readers, I want to know what the nearest book(s) are for you and what those three sentences are. C'mon! When was the last time you did something like this? College? Did you go cow-tipping? Pinging? (I'd still like to thump the people involved in that asinine little scenario.) Think of it as a trip back into your youth.

It'll be fun. Ready, set, go.

Monday, January 28, 2008


Hola. Como estas? Muy bien: we have snow.

Q and I got his new AFOs today. They're pretty spiffy. Now to find shoes that will fit over them.

(Nuthin' to tell about court.)

See ya later.

Battle cry

I lifted this from another mama of a kid with PMG. Thanks, Laura.

"People are unreasonable,
illogical and self-centered.
Love them anyway."
- Mother Teresa

Sunday, January 27, 2008


The chicken attrition has abated. (Ha! Love that sentence.) No further bloody clumps of feathers, the count holds at seven. Whew.

We're back in court tomorrow. Thoughts and prayers are much appreciated. I'll be reorganizing bookshelves in between subjects in order to burn off that buzzing noise in my head that seems to show up every time we have to do these things.

Q has his final fitting tomorrow for his AFOs. Why don't I know what that stands for? They're his rigid orthotics and they're cool: Camo. Yeah, baby. I'm sure he'll look like quite the little dude. Hee.

I'm tired. I suppose that's a big fat "duh," huh? Maybe with the help of ibuprofen, Q will sleep tonight. And if tomorrow you hear someone singing, "Jesus Loves the Little Children," under her breath, that's me. Ignore it, it'll go away.

Have a good sleep, everyone. Extra kisses for those little ones, always.

Awareness and Research

Five for Fighting is donating $.40 every time this video is viewed. Though Q's issues differ from the sweet girl shown, my heart is right there with the mama -- the emotion is pretty much the same when one has a kidlet who is compromised by his or her own brain. The first part is especially poignant to me...

Before noon

Well, one is done puking, and the other is having that lovely barking cough. Wheee. Q slept a little better last night, even if he was up nursing enough times that I lost count. Another one has a runny nose/cough going on today. Yeee-ech.

We've had a lot of sunshine lately. Every day has been clear which means cold (brrr) since it's January. The little puddles froze more than a week ago, cracked up, and are now lying about in glassy pieces. Yesterday we had some precipitation, rain being snow, snow being rain, trying on personalities. It was good entertainment for the less ambitious among us. Today we're back to cold and sunny. Apparently our rain went to California. Prayers for the people living in those burnt out canyons. That will not be fun.

The Christmas cactus popped two pink and white blush-y blooms and we were grateful. There's something about this plant that makes one want to genuflect when it performs. We've done it! We've hit the perfect combination of sun, water, neglect and attentiveness! We are rewarded! It now has at least a dozen buds. This clearly has nothing to do with any of us or our efforts. It's 100% Serendipity and we're just going to sit here and enjoy it, properly humbled by the experience.

I'm heading back to my sickies and my feeder/grower then out to the chickens (wince). Have a lovely day, wherever you are. Maybe I'll even get back here with more later. (smiling and waving)

Saturday, January 26, 2008


Instead of writing letters to our pen pals at the Mexico orphanage (at church) today, we're at home. Courtesy of one snuffly, snotty, snuggly little mouth-breather who finds it impossible to remain in her own bed, and one puking in the wee hours ponytailed girl.

There was a racket in the night and the two chickens that had been missing are now: one dead, one presumed so. One was found in a tree, where the raccoon had hauled it. Gak. This brings us down to half of what the flock had been. E's favorite was the one in the tree. G doesn't want her to know because she'll be so upset.

Wish me luck.

Friday, January 25, 2008


We're down five chickens. Two bodies remained, with chunks missing, and there were three trails of feathers, heading out into the woods. It has been a very sad day.

Q went after the mouse earlier this evening when I sat him up on my knee long enough to check email. I took him over to this site to see what Daniel's been up to and he got his little fist on that mouse and moved that arrow all over and wanted to see more of those pictures. What a hoot.

S has gradually gotten a smidge less clingy since returning home. She is so funny about school. She's always got to be doing something to try and keep up with the bigger kids, running for Kindergarten workbooks (which she's really well done with) just so she can make herself busy like they are. Sometimes it's hard not to chuckle in the moment, which would totally not be taking her seriously and would so not go over well. Our big achievement for the week was working for quite a while on a 500 piece puzzle without getting frustrated to the point of foot-stomping. Next she'd like to play "the element game" (Element-o) some more.

K saw a very nice orthopod yesterday. She has a fracture in her back (trampoline) and is experiencing the joys of restricted activity. No gymnastics, no swimming. Poor little chickie. The doctor asked her what else she likes to do. She scrunched up her eyes and thought for a second before answering, "I like to roughhouse on the couches... with my big brother." "Ah." He had smiles and inquiries about the actual amount of roughhousing currently going on (none because she "might go upside down which would hurt") and admonitions about continuing to be gentle and off we went. She'll be seen again in about four weeks for another look at her progress and probably (hopefully) heal up just fine.

E is more of everything lately. More fun, more cranky, more (gulp) hormonal? Hear me wailing in distress? Can't we give me a minute to just sit with the little squirt who used to actually want me to do her hair instead of the big kid who wants to do it all herself and is leading her sisters astray in the same manner? (Kidding. Sort of.) Please? Wah. Of course, I'm also tremendously proud of her and how she just takes things on, much like her Daddy. That is, when she's not having to knock out her checklist of schoolwork. For some reason, all coping skills are suspended when we must diagram sentences or do multiplication.

G is suddenly his Dad all over the place. He's nearly as tall as I am and his involuntary gestures are so much his father. He's such a guy. It makes me smile. He's talking about wanting to do Marine Biology next year for science. We'll see. I've thought about Prentice-Hall curricula, but it's expensive and I don't know how linear it is for a kid who is beyond junior high science but not quite the level of self-study one would like to see in a high-schooler either. I think part of the reason he'd like to take this particular tack is because we've talked about the work his Dad did with dinoflagellates (red tide) and G's been many times to the place the work was done. I don't know if he realizes it or not, but I think he's trying to walk in those big footsteps. Awww. Sniff.

I've been so tired today that my arms feel like they belong to someone else and I'm having trouble staying warm (!). Sleep has been spotty over the last several nights, getting to bed at 4:30am, 3am, 2:20am, and only then because I was nursing the little monkey in the dark with a blanket over his head. If I can get Q down and go to bed tonight before one I would count it as celebration material. It's all a matter of perspective, no?

I was sorting through some old papers and came across one on which I'd written the date, in very large letters. It was left over from the time when the kids and I were here, a certain someone was doing a rotation relatively nearby, and my grandparents were staying in the house as well. There was some difficulty in the tracking of days with the older set (they were about to move into assisted living) so I was using the excuse that the kids needed to have the date posted for them. Clever, I know. I was also writing Bible verses at the bottom of the pages in the hopes that certain of us might gather enough strength from them to keep on keepin' on. What can I say? It was a pile of people and personalities to share the space, my grandmother was, erm, less than supportive about my teaching the kids history (including mythology) vs. straight up Bible stories, and Alzheimer's was figuring prominently in the decision making processes. I'd dislocated my kneecap (reduced it myself, oh yes I did) and was limping about. The verse on this particular sheet is also my Thought for this Week. Ready?

God will help you overflow with hope in him through the Holy Spirit's power within you.
Romans 15:13 TLB

Alrighty then.

I'm going to go convince Q that he wants to sleep. Have a good sleep and when you have a second, give out some extra hugs and snuggles. Mwaaa.

Wednesday, January 23, 2008


Eternal questions are pesky. Some time ago, a commenter asked:

Yikes. What happened? That is what I can not get my mind around after reading your blog. How did you both end up HERE from There? And can you make your Peace with HERE? I will pray for your children.....

Well, here's the thing. Peace I have. At least intermittently. As much as anyone, probably more than most. Still more would be fine, of course.

I don't know what happened to land us here. I have some guesses (which horrify me). Perhaps someday I'll have an uncanny dream which will crystallize everything and voila, I'll get it. That happens periodically. For now though, I think I'm just going to have to make myself comfortable with not getting it. I'm a reasonably bright person. I have decent IQ scores, for crying out loud. I function well (most of the time) in my daily life. The kids are happy, learning, and love each other (mostly). They all have health care, dental care, and get where they need to go, groomed and dressed in clean clothes which they've picked out. Q is making progress. Upon examination, all these things would tend to manifest a fairly high functionality, yes? Okay then.

As a smart person, I truly don't get how we went from my husband being all smiley and blushing over the video/computer hook-up when I sat on his lap and we held up the little kidney bean ultrasound picture to announce to my parents that baby number five (surprise!) was on the way, to this. I don't get how we went from him calling me up while walking between locations on campus to tell me that he couldn't get the silly grin off his face thinking about that little baby in my belly, to this. How did we move from ending every phone call with "Love you," "Love you too," to three days later, this? He used to call when he had a free minute to talk to me about the exact same thing I was just that moment thinking about calling him to talk over. I used to text his pager while he was in the OR with things that made him blush (they were innocent, but open to interpretation -- heh). He made me laugh. All. the. time. I loved watching him bike or play at the beach with the kids, or listening to them playing video games in the next room, extra goofy sound effects courtesy of him. Made my heart swell 'til I thought my chest would pop open. Really.

Then there was the time, on our last family vacation (the one that produced Q) when he was taking great pains to get G to give himself a pep talk, a daddy bolstering his son's little ego. I was so proud of the both of them, so proud. I sat there as he drove, listening as he talked to our eldest about what a great kid he was, thinking to myself, "Wow. Nearly eleven years into marriage, this incredible man continues to surprise me. Wow." The soundtrack in my head was often, "What a man, what a man, what a very good man..." I used to brag about him online, in person, to friends and family. You bet we had our frustrations, but he was my "studly MD hubby." Online, I'd type out "husband" instead of "dh" because I liked thinking about him and all the word entailed while I typed it. For a couple of years I thought about starting a blog so I could chronicle our family high-jinks, like the night he calmly, gently chased a young skunk out of the family room. See? Studly MD hubby indeed.

As to the MD (and PhD) part: he went to the wall for his patients, even as a med student, even when it got him into trouble with attendings or residents. Sometimes his fellow students or interns thought he was crazy for sticking his neck out. Example: he once argued with a pediatrician about whether or not breastfeeding was really possible long-term. By the time he was done with the rotation in her office, he'd made up educational pamphlets for parents which she'd asked for extra copies of, he'd held me up as a working example of effectively nursing babies (blush), and the pediatrician ended up taking us all out for dinner along with her family. He had me pick up little sticker and activity books for a young patient who was to be stuck, bored, in the hospital for a while. He worried over and looked for a homeless man he'd treated who left a clinic AMA, with bleeding that wouldn't stop.

His actions along those lines just served to heighten my opinion of him as well as the opinions of his patients. His professional priorities and heart for his work were as clear-eyed and unrelenting as his commitment to his family. His star was rising and there seemed truly no limit to what he'd conquer. Watching him as he progressed through both research and clinicals, garnering international attention and publishing his work, I was often in awe. Those things he was taking on were hard (whopping understatement), even for the people born to do them, even for single grad/med students. Yet here he was, plowing through, taking it all in stride. It was certainly not easy, but he just achieved like mad. I could go on forever; I have plenty of material.

I was less than perfect, less than ideal. As was he. God help us for being human. But I knew, from tales friends told, that I was a lucky woman and he was a blessed man. We had wicked chemistry, buckets of affection and high regard for each other and we showed it, even (most of the time) when disagreeing. I wanted to be right where I was and I thought he did too.

Perhaps I was living on a different planet. I assumed that we had all the time in the world to once again be on the same schedule. For me to be once again whispering into his ear as he fell asleep what a very good man I was so lucky to be married to or telling him for the bazillionth time that I was glad, so glad that he'd picked me and that I'd picked him. I thought I'd be doing those things again as soon as the wretched year was over. I wish I'd been engaged in those things, instead of stupidly doing laundry or lesson planning or whatever until after midnight when he had to be heading out the door at 4:30am. I assumed that we'd line things up again. I even wrote out immediate, short- and long-term goals. All my lists ended with: Find new ways to show ___ how much I love him. I had assumed that whatever was bugging him was an artifact of an "ordinary," perfectly awful, General Surgery internship year.

Obviously, I have plenty of self-condemnation, regrets surrounding missed opportunities with him, sadness at the losses we're suffering. I had a piercing conversation the other night with my ten year old about the emptiness she feels at not having Daddy in the house. I told her, very quietly (I don't want them to carry my emotional details around, they have enough to worry about), that I'm so sorry and I feel it too.

These things haunt me, boy do they haunt me, but they don't decide my daily actions. At least not more than to make me strive a little more, set that bar a smidge higher, engage better and more thoroughly wherever I'm able. I don't know that I'm getting it any more right, but I am more aware of myself. For this, I'm grateful. It's just that... Losing my family seems such a high price to pay.

As to whether or not I can "move on," I move on every day. Life is what it is. No amount of wallowing in regret will energize me to better handle things. Sleep, exercise, decent food in decent quantities, good books, drinking in the moments with the punkinheads, laughter -- these things energize me to better handle things. And that is what must be done. I have these kids to walk into adulthood, along the way hopefully imparting useful skills and knowledge in relationships and academia alike. That task/bliss doesn't allow more investment of time on this subject than the odd flickers I occasionally leak out here. (added: That's only partly true. I'm always keenly aware of being alone in this. It just doesn't get to ruin me. I hope.)

Did you know that the two most important factors in determining a child's success are a.) whether or not his/her home is intact and b.) whether or not his/her mom is depressed? Talk about a short motivational speech. That pretty much decides my direction for me. To that end, I have a variety of people who know me in real life and have agreed to alert the media and/or kick my hiney should I need a course correction with myself or the kids. Since I'm lacking that Particular Relationship in which one would expect to enjoy the benefits of active, loving accountability, I've built a substitute scaffolding of the same general type. While it can't compare, it'll do. (Observation: it seems it's taking dozens of people to make up for a certain someone's absence...)

I'm trying to leave the details up to God. Once in a while, I do this visualization of tossing a bundle up into a tree, leaving the worries tied neatly in a package high up on a bough. If I need them, I can always go back for them. But carrying around that kind of worrisome "stuff" really slows a person down.

A few weeks back, I was in the midst of bedtime chaos, cleaning up puke and washing delicates, medicating Q and settling down fussy people, and I had stopped in front of the washing machine, puzzled. It was spinning. I was thinking, "Hmmm. Washing machine. Washing machine. Something about a washing machine. What is it?" Oh yeah. One gets married, has a bunch of kids who make messes with bodily fluids way out of proportion with their physical size. One cleans up these messes, one cooks, cleans, teaches, wipes, loves on those kids. One hauls said kids all over to lessons, therapies, appointments. One does this and more and there are supposed to be some perks and sometimes they are supposed to jolly well involve a certain someone and a washing machine on spin cycle. Or something like that.


And why address this now, you ask. Well, among other reasons, the sorting of the storage unit was tough. It was positively wretched, running across all those cards signed, "Your adoring husband," etc. It was a strange feeling to find the pile of (still blank) cards, most of them at least a little risque, that I'd picked up for him over the years. I'd given him some, sent him some while I was out of town, tucked some into his luggage for him to find when he was off at conferences or doing elective rotations. I liked to keep a stash in my desk, and there they were, sitting on top of a box with the rest of my blank stationery.

And then there's the fact that I think I can only mourn one thing at a time. While working without pause on the daily micro parts, the macro portion of the loss of possibilities with my youngest babe has been really tough to wrap my brain around. Especially so when trying also to understand and function in the midst of this. (Review: there are so many opportunities for Awful in life, why do this?) So maybe I'm mourning this now. I don't know. Maybe I'll be clearer on things in a few years. I don't exactly have oodles of time to devote to processing it all in a big chunk, so it may take me the rest of my life. (Which is fine, I guess. What are my alternatives?)

So. If you're still here, you've survived this field trip through my head. We won't be doing this regularly. But if you don't mind me dropping sporadic references to very good memories, stick around. In the meantime, Q's got lots to tell and he will, probably in spurts. The big kids are a riot and provide plenty of material for belly laughs. There's a ton of information-sharing to be done. Homeschooling is always good for discussion. Sometimes I even have an intellectual hiccup that can't quite be suppressed.

Things are complicated, hectic, messy and often painful, yes. But I am a citizen of a first world country, mother of five gorgeous kids, drawing breath on a beautiful and imperfect planet, and thus, blessed.

Saturday, January 19, 2008


So. About Q.

At the last neuro visit in early December, I mentioned that I'd been thinking about giving Q Ambrotose, from Mannatech. I explained what it is as I understand it: "essential sugars" which give a little assist to the neurons in their efforts. Much as glucose is important to fueling the brain, these sugars, no longer readily available in our depleted diets, should facilitate neuronal activity. Or so the theory goes. I mentioned that a neurologist friend is impressed with the science behind it, though she herself says that no research has been done.

The neuro doc said then that, "I'd like to say that if it's worthwhile I've heard of it, but that's not always the case. I mean, somebody had to persevere with neurodevelopmental therapy when we didn't know why it worked, just that some kids were seeing gains, or it would never have become an accepted, clearly beneficial therapy. There are many things to consider in these kinds of situations. The main drawback I can see to all this would be that sometimes excess sugars can cause loose stool or diarrhea which in Q's case is unlikely and wouldn't necessarily be a bad thing." (Dontcha love this guy?)

So as I was leaving the office, I was thinking about this. I read somewhere that fully half of our neurons are in our intestines. Thus the "second brain," "gut feeling," etc. Q suffers from Polymicrogyria, a neuronal migration disorder. The first indication of there being anything "wrong" (other than my gut feeling -- ironic, no?), was when the ultrasound tech saw "abdominal ascites" at 20 weeks. A brief review: remember in high-school chem when you mixed two clear liquids together and they created precipitate? Snowflake like things floating in your previously clear liquid? The "calcifications" which on ultrasound indicate abdominal ascites are sort of like that. They indicate that something is where it's not supposed to be or something is out of order in development. In this case, the pediatric surgeon thought it likely that as Q's liver was forming, the bile duct leaked. Less likely would have been leaky intestines. Just in case, Q was 48 hours npo in NICU, while they ran a series of contrast x-rays on his belly. (He had a dextrose IV -- the thought of not nursing my newborn still makes my stomach clench. The girls were at the breast within minutes, though G had a little time with NICU people -- looking for aspirated meconium. Ah, the memories...)

So Q has issues with his neurons. The waves of neuronal migration which happen in a typically developing brain were somehow interrupted in his. One might logically assume that the same happened in his belly. Hmmm. Do the two regions of neurons each migrate? Do they follow the same general pattern? Might people with IBS, etc. also have neuronal migration issues?

I'd thought about Ambrotose for a long while, but it's expensive. A friend passed on part of a container she had left over from a relative's generosity and Q started having it in his yogurt early in the same week we left. He's had it every day since.

So we went off and had our trip. The plane ride down was good, even with nearly 2 1/2 hours on the plane at the gate, waiting for a signature on a maintenance record. (I heard a mechanic on the phone as we were boarding and thought to myself, "Uh-oh." Yeah.) Q and his sibs charmed the socks off everyone within smiling distance, even with the fussy teething issues. The flight attendants brought me several little cups of half and half so I could stir it up with his Gerber DHA-added oatmeal and make him all happy -- starch and fat, who wouldn't be? He fell asleep as we were taking off and slept nearly the whole flight. The bigger kids were fabulous helps getting things on and off and the airline didn't ruin his chair. Woohoo.

When we arrived at what was to be our homebase for the next 16 days, Q was anxious to get down on the cushy carpet. I lowered him, with support. He put out his hands in an all-fours position and promptly tried to crawl. Crawl. He finally got so excited with his efforts that he shot forward onto his face and didn't even care. He was just anxious to get back up on hands and knees and go again. So we worked at it a very little bit. Being all cantilevered is a tough position for me to hold and still keep him in good form with hands angled correctly, fingers out, arms and legs alternating.

The first couple of days he was eating less than a third of his usual. It was so bad that I thought I'd have to haul him down the road to the nearby (hallelujah) Children's Hospital and have someone install a G tube on the spot. By the third day, he was almost back to normal (good thing, since this was my intervention deadline day in my head), and following that he really took off again. So I threw in lots of organic cream, full fat coconut milk, some cottage cheese and Yo Baby and he seemed to be a smidge more energetic.

He quickly acclimated to the new people (he recognizes the "mommy tone") and made friends with everyone who crossed his path. Time passed quickly. He chortled and cheered when his sibs showed up for his birthday party and again when they were all around him, holding him at the airport. He'd spoken with the kids on the phone several times while they were away, always looking for them when the conversation was done, always happy and giggling to hear their voices.

When we got home again, he had the same response to the grandparents at the airport. Was happy to be home. Cheerfully went with grandma and grandpa to play while mommy assumed the fetal position under every available blanket in the house. By the following day, he was ready for mommy snuggle time again, but has such a great affinity for the rest of his family that he'd had no complaints until then. (I am so glad. I don't know what I would have done if he'd wanted to play clingy little baby monkey while I was shivering and unable to stay awake.)

So the week moved on and he went to therapies. Here's what he's doing:
He's making faces, using his lips, babbling in those front of the mouth sounds.
He clearly wants to crawl.
He's walking more. Supported, sometimes stepping on his own toes, but alternating his feet most of the time and he seems to be pretty clear that he wants to go, to get somewhere and he'll be needing us all out of his way, thankyouverymuch.
He fed himself those little Gerber cherry bites star-shaped thingies the other night. (I know!!) I put the first couple in his mouth and then the rest between his thumbs and forefingers and he just went right to his mouth! And he chewed them! And he moved pieces around in his mouth so he could finish chewing them before swallowing!
In speech therapy on Tuesday, he had a little help to use a sort of spork-like thing and put dabs of food into his own mouth. After the first couple of helped attempts, he'd wait for the utensil to be twirled in the food and "loaded up" and then, zoom, right to the open mouth. Aaaaa!! (See me dancing and shrieking like I've just won a million bucks?)
In OT, I told his therapist what we'd been doing and showed her the motions he'd been making that led to an almost crawl, which was definitely him creeping toward a goal. She was working with him and described his tone as much better. I said, "It's almost like he's a different kid." Her reply: "It's not almost, he is a different kid." She showed me how to use a twin flat sheet to help him get up, supported, into the hands and knees and rocking positions and use the sheet to then help him switch from side to side for practice sitting up. He loved it. I did it at home with his weight-bearing mitts on and he had some fun acting like he'd just be off and running. When he figured out that he could push hard and get his feet under him to really go, he didn't want to be on the floor anymore and so we just walked around the living room with the sheet supporting him.
In PT, we spent most of the session getting his chair adjusted -- he's grown and the chair wasn't so useful the way it was. Hard to get him in and out without bopping his head, uncomfortable in the femur length/ischial area ("sit" bones). We'll have more adjustments next week, but it's already much better. The rest of the time he was flipping around on the big ol' orange therapy ball and loving it. He kept getting into tougher than normal positions and checking back over his shoulder (not arching but turning!) to see if the therapist was noticing how cool this was. Big grins throughout.
He's making jokes with everyone who will play with him with their faces. He takes grandpa's glasses off and thinks it hilarious. (Those giggles are infectious.) He put his arm up to hide my face the other day when I was trying to get him to raise his chin and play Peek-a-boo. I'd been saying, "Where's Q?" When he nailed me with his forearm and a huge sidelong grin. I asked him if he was hiding mommy. The grin got bigger. So I said, "Where's mommy?" He dropped his arm and giggled. I said, "Boo." More giggles and the arm comes back up. We repeat this four times, then he wiggles around to do it in a different position. Aaaaaa!! We've done lots of peek-a-boo, but this thing of him initiating play is new. Love it!
He was lying on the bed, playing with his face when suddenly his fingers are splayed on his cheek, close under his eye. "EYE," he says. Aaaaaa!!!!! He's done this before when asked, when primed with: here's your nose, here's your mouth, can you say eye? But not on his own, spontaneously.
His head control is much better. His trunk is far more erect when he's upright.
As long as he's properly hydrated, his Miralax use is minimal.
He is harder and harder to entertain, just like a two year-old would be when perched on a lap in church -- immobile is hard at this age, apparently even for Q. He'd rather be getting into stuff, even if he needs some help creating the messes. "Like a two year-old," as his speech therapist observed when watching him go after his mouth and food with his hands while feeding.
He's eating the small curd cottage cheese instead of not being quite sure what to do with those unmelted chunks, no longer looking around like: Mom, didn't you check this for texture before you gave it to me?

All this since the Ambrotose started. I'm not ready to declare it a miracle, or even to say it 's all the supplement. But, shoot. When my lovely friend put two jars in a gift bag for me on our trip, I nearly cried.

I'm sure I'll think of more as soon as I hit publish. I'm off to pick up a refill of Q's Trileptal -- for some reason the last bottle had only 180 ml in it instead of the 210 ml we need to get through a month, so he's out.

This is cool stuff, no?

There's still all this to deal with, but the boy is curious, has a certain spark which makes him a favorite of his therapists (and everyone else who comes into his space), and just seems to be going places. Much like his sibs. More about them later.

Hugs and kisses.

Friday, January 18, 2008

C'est la vie

Nothing to tell about court. (Surprise!) We go back next Thursday*, this time for custody/visitation. I may take up crocheting so I can stop biting my nails, twiddling my hair, fidgeting nervously. (You know this is a bit of an exaggeration, yes? I don't have time to sit down unless I'm nursing, much less obsess so avidly over something where I have little control. See, I have these busy kids...)

My mom is home recovering nicely from surgery -- a hernia repair. School is picking up again. Q "did tricks" today with some help. I'm waiting to see what his PT says tomorrow and I'll be back to post about his new developments. The regular rhythm of things, such as it is, is steadily resuming.

Which means the decompression is in full swing. I had quite a conversation with E last night about the losses we're all suffering since Daddy isn't in the house anymore. I'd rather crawl naked over broken glass than to have to shepherd the kids through this hell. Especially, I suppose, since I can't justify it to them in any way.

I'm going to take my head out of that particular vice and toddle off to bed, rejoicing in the fact that the phlegm continues to recede. Who knows? Maybe tomorrow people will even recognize me on the phone again.

*Addendum: Actually, it will be 1/28, to deal with everything, not just custody/visitation.

Wednesday, January 16, 2008

Waving, not drowning

Hey, again. Thanks for all the good wishes, everyone. Now I'm all teary.

G was such a help getting through the airport. I was such a mess that I couldn't hoist the car seat and other bags up over my head like I had on the way down. The boy noticed, all on his own, and came and took them from me and then positioned himself behind his sisters so he could watch and make sure they were fine as we walked on to the baggage claim. My mom drove home, thank God. I collapsed (truly) into bed just as soon as we got home and didn't get up for twelve and a half whole hours. The last time I did anything like that it involved a certain someone hauling me to ER for rehydration, major meds, and an ultrasound. Thankfully this bug was more mucus and sleep-related. Or rather, lack of sleep-related. So I'm ambulatory again, even if I do sound like a herd of frogs is camping out in my throat. (Cough, hack, choke.)

Q was so very happy to be home again, positively chortling at the grandparents in the airport. I need to post quite a bit about his times and what his therapists are saying. It's pretty exciting stuff. For now, though, I've got to get the kids to bed so we can move on with more school in the morning. It's been tough to get them reoriented to something like a regular schedule. Lots of complaining this morning when they had to be out the door at 9:45 for piano lessons. See me rolling my eyes? The silly monkeys.

We're back in court again tomorrow. As always, good thoughts and prayers are appreciated. Boy. I wish I knew what to say about all this. I guess we'll just stick with the thoughts and prayers part. Breathing deeply...

Thanks again, everyone. I can't tell you how much it means to be remembered by such a cadre of kind, funny, super people.


Sunday, January 13, 2008


We're back. There've been some tears. Q did very well, considering. I'm sick and wobbly, so I'll post more later. Back to bed and thank God for grandparents.