Big words

What a heck of a week. I feel like I've spent most of it in the van and at doctor's offices, which would be because I actually have.

G is getting glasses for astigmatism. The kids had piano and gymnastics, so lots of driving there. And Q had three appointments this week.

On Tuesday, he had an "extra" well-baby check. He was 17 lbs, 7.25 oz., 26" long. Good news there, but his head circumference has dropped off the bottom of the chart. That, of course, is not good. He's past the breathing problems for now--hurray! But because bronchiolitis sensitizes the lungs to future bugs as well as asthma issues, he'll be watched closely. His hydroceles may in fact be a hernia. Not great, but again, watching closely.

On Wednesday, he had his pediatric ophthalmology visit. His diagnosis is intermittent exotropia with hyperopia. The (really) nice and extraordinarily well-qualified doctor also noted "poor fix and follow" as Q tends to track moving objects briefly and then quickly lose them. His eyes are functioning less and less well together and he seems confused by it; he was tracking better in NICU than he is now.

On Thursday, he had neurodevelopmental physical therapy. His therapist got all excited last time when I told her I'd trained as a massage therapist and have been working on the little guy's hypertonia. She and my mom concur that Q got the "right mommy." (I hope so.) He now has tiny neoprene hand splints to wear at night to hold his thumbs out of his fists and will have lighter weight ones to wear during the day. I hope he doesn't have to wear them all the time, because it seems that he's becoming more and more aware of his hands as he's receiving work on them. He seemed to be a thumb sucker right from the beginning and still loves them when and if he connects them with his mouth--nursed baby + skin to suck on = Nirvana. So my worry is, how will he find his thumbs (and therefore his ultimate happiness) if they're wrapped up in neoprene most of the time? It's probably silly in the scheme of things, but it's something I think about nonetheless. Why? Because I'm the mama. It's what I do.

And, drum roll please... the big words for the week: colpocephaly and intermittent exotropia.

Colpocephaly: enlargement of the occipital horns of the lateral ventricles, often accompanied by mental retardation, seizures, and visual disturbances that result from hypoplasia (underdevelopment) of the optic nerve.

Exotropia: a form of strabismus in which eyes deviate outward.

Other than the fact that seizures have been at least temporarily ruled out, the definition for colpocephaly precisely characterizes what can be seen on the CTs Q has had so far. He will have an MRI about 2/3 of the way through May to further clarify his neuro issues. The exotropia will likely require surgery. Q will be seen again in three months for a recheck of his eyes and to decide at that time what/when will be done. The procedure is usually performed between 6 months and 2 years of age. Developmentally, there is a strong case for having the surgery just as early as possible. It would allow Q to have better binocularity which would help him lay down better neural pathways which would help him have better vision, and so on. Each supports or wears down the other. However, if he has the surgery and then goes on to experience some degree of self-correction, as many little ones do, he would require another surgery to re-correct his alignment.

Yikes.

So there's the news. Or all the news that's fit to print. The rest is just annoying and not especially pertinent.

I feel like I've pro/re-gressed from being held by the nape of my neck so my head can be used as a battering ram to just banging my head on a table, over and over again. If you feel the earth shaking, it could just be me, raging and sorrowing over here. Gag. Have I mentioned that free will sucks? Here we are, I would give anything, truly anything, to be able to keep Q and his sibs safe, and to make Q whole. And on go the folks who took the tremendous gift of self-determination as a personal challenge to do as much evil as possible in the span of one lifetime. They squander their lives. What is wrong with them? And why aren't we all, the good, righteous (use it in or out of religious context), kind and considerate folks who strive (and yes, we all miss the mark too often) to act only in the best interest of our beloveds, whomever they may be, why aren't we rising up and saying, "Enough crap from you. And you and you and you. No soup for you! Go sit in the corner until you can play nice. Do not pass go, do not collect $200. You. Are. OUTTA HERE!!" And? No reproducing. We do not need more of that kind. The planet is having a hard enough time without smaller versions of the crappy people running around.

Not that you asked.

Ah, well. So much for my infinite wisdom. Ha. At least next week doesn't have quite as many doctor's offices planned into it. The kids have their spring piano recital, Q has neuro PT and a speech therapy evaluation. Other than that, it's more usual stuff, thank God. I need less running around at least for a couple of days a week, so does Q. The little girls do quite well with it (again, thank God) as long as we have books and coloring equipment along. Stories to read and school type stuff to do go a long way toward making the days bearable, even great fun.

This week while we were at piano lessons, S was looking at the van door and wanted to know what that picture of her was and how come it looked so funny. I told her it was her reflection and launched into an explanation (simple version) of shapes of reflective surfaces giving back different images, when she interrupted me to say, giggling, "That's my free-lection."

What a hoot.

I wish you a blessed, peaceful, rest-filled weekend. Off to sleep quickly now before my head does fall over onto the keyboard.

Hugs.

Therapy

Q had his assessment for neurodevelopmental therapy yesterday. The therapist is really nice, very knowledgeable and thorough. Good thing, because we'll be seeing her every week at least until Q's walking.

Argh.

Of course I'm glad that we're in and doing good stuff with him, but geez--could the kid catch a break already? Maybe the break was that he's not having seizures?

Everything we're going to do now is to help him not extend so much. His little thumbs need stretching, because he clenches them inside his fingers. He's not to spend much time standing, something he likes to do. His arms and shoulders need stretching, because he pulls them tightly in and doesn't use them to hold himself up on his tum like most babies his age do. He needs to have his hands brought in to the midline for him--think endless rounds of "pattycake." He needs to be encouraged to have his hands up to his face and tummy and each other, because he's not initiating that himself. Also, he seems to be "disorganized" by lighter touch which would explain why he's still loving to be swaddled and hated it when I initiated a light touch infant massage.

He's on the waiting list for speech evaluation, because he gags spontaneously sometimes, and far too often for a baby this age is having trouble getting a tight latch while breastfeeding. In spite of that, he seems to be gaining and growing exceptionally well.

So next week is: eye appointments for G and Q, well-baby check for Q, counseling for G, E, K, S, and something else... Hmmm. I'll have to check the calendar. I hate it when these things won't stay in my head.

Off to feed the starving (not) child. :o)

Peace.

Movin' on

Q is past pneumonia, as far as I can tell. Yippee! His eyes seem to me to be tracking less and less together, but perhaps it's just that I'm looking more. Thursday morning he'll be seen for the evaluation for neurodevelopmental therapy. Next week he's at the ophthalmologist and then I call to schedule the MRI.

On the upside, he seemed a wee bit dehydrated in the midst of the pneumonia, so I fed him whenever he was awake, about every hour or so. In two days, he gained four ounces! By the time he was getting the diagnosis and antibiotics, he weighed 16 lbs., 15 oz. What a little piggy. I'm pretty sure we're barreling on towards 18 lbs. now, because he's had evenings in which he eats every hour for three hours, afternoons in which he's hungry every two hours. If he were just messing around, I wouldn't leave him on the nipple, but the boy is honest to goodness chowing down. Besides (she tells herself), extra glucose seems to have been shown to be a good thing for brains in the midst of repairing themselves, so onward we forge.

Otherwise things are more or less on an even keel. G might have glasses soon and is today enjoying a hands on field trip about entrepreneurship. E has an attitude from heck (let's attribute it all to going to school, shall we?), but is otherwise thriving. K continues to learn more words--learning to read is so much fun! S is singing songs to baby brother and "reading" him his soft books. We get to enjoy magnificent made up stories about the baby chick's family and the mommy and daddy of the tiny sheep. What a hoot.

Right now, my very favorite time of the day is waking up with Q's tum pressed up tight to mine, his head thrown back, elbows up, fists tight under his chin, having nursed himself into oblivion. It won't last much longer, I'm sure, and this is the last time through this baby business for me, so I feel a little clingy about it all. This tiny baby stuff passes so quickly, I am relishing it compulsively.

I guess that's how I feel about all of them, even though they're capable of making me completely buggy. They are children, after all, not angels. But life seems fragile, temporary, wispy almost. So I'm trying to nonchalantly grasp at every moment we're living. I'm (hopefully) calmly reveling in and allowing to just wash over me every little thing they say and do.

Sigh.

I can't wait to reach the point where again I can turn my brain toward outside activities. I used to be involved in community stuff, church stuff, lots of field trip and hands on stuff. I used to cook fun and yummy stuff, do mounds of laundry, scrub stuff, put things away, without much thought of the effort or organization required to just do it, already. Being sick while pregnant, then having a new baby throws it all off, of course, but besides that part, I don't want to cook anymore. I miss folding certain items of laundry. And most of my time is spent hauling kids to appointments, organizing appointments, and working on the little daily things--keeping everything picked up and put away enough to keep us afloat while still getting to all those appointments. I have a hard time replacing the motivation that was, if you know what I mean. Given the requirements of the "new normal," I'm just happy to have everyone upright, eating (almost) anything from each of the food groups, warm, learning, more or less clean (depending on the fascination with mud on any given day) and being relatively kind to each other. I suppose lowering a person's expectations through the floor could have something to do with my appreciation for life's little things. With feeling so very blissed out at the way a certain little person breathes, is sweet with a sibling, or another's hair falls across her face, or the fact that G is oh so proud of the fuzz on his upper lip.

Maybe it's taken all this for me to get to the place where I can revel in the ubiquitous grace in spite of the obvious and equally ubiquitous pain. Or maybe this is who I always was, just now I'm feeling it urgently?

Baby's fussing. So much for getting a shower. Oh well--this too shall pass, and all too quickly.

Peace and blessings.

News...

So Q had a fever today. I took him in, concerned because he's been coughing now for two and a half weeks and having more nebulizer treatments since Sunday, and he ended up having a chest x-ray. The pediatrician says bronchiolitis/pneumonia, and he's on antibiotics.

And then there's the rest of the story: As the doc is looking at his face, she kind of jumps back, startled. She looks more closely, asks if I've noticed that he's moving his eyes independently. I tell her not much, no, but the sibs have. They think it's funny that he can move his eyes in "different directions." She says, "Oh dear. No, it's not."

The term is "esotropia." It would appear that Q's is the congenital type, as he's manifested it so early in life, which almost always requires surgery to correct. There may also be eye patching, therapy, glasses.

(Insert Yiddish curses here.)

I have a list of excellent pediatric ophthalmologists in the area. I'll be contacting some tomorrow to get at least one appointment set up for as soon as Q can be expected to begin feeling better.

Of course, the earlier one catches this sort of thing, the better the outcome, but geez Louise already. Could we do something else for awhile? The doc and nurse and I today decided we could name a wing of the office after our family since we seem to be in at least once a week lately. The nice doctor even apologized for having to send us off to another specialist.

(More Yiddish cursing. Kicking of inanimate objects. Cursing. Kicking. Screaming. Etc.)

I'm going to try to will the child to sleep now. He's a little wired from the neb meds. (Like my one-handed typing abbreviations?) I'm tired. This is the place where I start to lose feeling in my arms, my head spins without permission, and I become barely coherent. Argh.

Peace.

Musing

(I don't know how to edit this, but the date should actually be April 22.)

So I was doing a little preliminary copy editing for a friend who is about to self publish her second book, and I thought to myself... Shall I write a book? It's percolated around in my cranium for years now, but I've never had a subject or the time. Still don't. But it sounds both intriguing and terrifically maddening, so maybe a few years down the line? Maybe when I run away to Tahiti. Titles? Subject matter? "They" always say, "Write what you know." I don't know that I could do that without ending up in a lockdown unit. I might actually kill me. Or maybe it would save me, who knows?

As I mentioned previously, I'm working on getting G evaluated for ADHD (inattention only?), and am feeling so torn about how to get him through school successfully. Meaning: sane, compassionate, and educated. I think those are straightforward goals, perhaps even admirable? But how to do this without making waves? If the kids don't return to the school they're currently enrolled in, it won't be the fault of the school. The administration is working waaay outside their comfort zones in order to accommodate the students already, something most institutions don't do well. They have my admiration for their efforts. Nonetheless, they exist to serve the needs of the group, not the individuals. My kids are individuals and they only get this one shot at childhood and learning how to be good people. Argh. Or urf.

Any thoughts?

Church has become a marathon event. We drive 45 minutes to a lovely place: intellectual, but not condescending or stuffy; cheery, but not nauseating; warm, but not cloying; busy, but not impersonal. The music is awesome, transcendant. We love it. It's just durned hard. I'm blessed to be tag teaming the service with another mommy (or two) sans daddies, for different reasons than myself. It's just that when we have nine children, ranging in ages from brand new (nursing complicates things) to 10 yrs., and only two or three adults, well, it can be a contact sport. Especially when the kids would really benefit from at least stern looks from their own dad when trying to cut up. Still, for the most part, we manage fairly well. And no one has thrown up their hands yet, so on we go. I think we've made progress in getting them all to sit and with less and less fuss. Suggestions?

Also, though things continue to improve in practical terms as far as being more and more able to haul kids, feed kids, etc. with less and less hands on help, I do wonder how I will manage to shepherd these little ones toward being kind and compassionate thinking adults without completely losing it. As much as I love them and would not trade the privilege of mothering them for anything, it's hard work and it lasts about nineteen or twenty hours a day most days. I tell G all the time, as he's fussing over math or something else that feels insurmountable, that he must do this like one would eat an elephant: one bite at a time. I'm sure that's the case with child-rearing (or adult-rearing, depending on how one views it). Still, it's tough to keep things fresh and exciting. I'm glad that I read about this and so much more. I'm glad that I have like-minded friends with which I can discuss this all--really sane, articulate people who aren't afraid to call it as they see it, good or bad. I'm especially glad that I am the beneficiary of prayers from literally around the world. I could not walk around under the realities of life without divine intervention called down by earnest people everywhere. (You know who you are and I and my babies thank you.) I think the eating the elephant one bite at a time thing is an example of that. G was feeling really bad and needed something, I didn't know what. I opened my mouth and out came the elephant analogy. He thought it was hysterical and could pick himself up and go on. (The charm is wearing off, though, so suggestions are appreciated.) Any helpful hints on how to keep this up?

Q seems to be losing patience with the thumb and arm/shoulder massage. Poor baby. I wish he could just be okay without intervention, but I feel bad even thinking about complaining. There are so many mamas out there who would give anything, truly anything, to be able to intervene on their baby's behalf. Q is alive and mostly happy, growing and smiley, when he's making eye contact or hears my voice. I wish he didn't have this crap to go through, but I am blessed to have him and get to love such a sweet punkin. I have thought many times that he is the grace note in my life. If I didn't have him and his sibs to be striving for, I think I'd be face down on the floor. Ironic that at least half my agony exists solely because of the kids--the consequences they suffer in all this.

Well, I could go around and around on that topic forever. It seems to only make me feel worse and never come up with any new answers, so I'm going to bed as quickly and quietly as I can. Or not--there's the baby. He "heard" me!

Hug those little guys. Sleep well, y'all.

Revelations of the day...

I have discovered that I am wholly sick of living in the midst of a trainwreck and that I'd like my legacy for my children to be something other than that of their mom forever heartsick.

We have vast spaces of grace and snuggles and stories and, you know, quotidian type stuff. It's almost all good. Really good. Today we covered more of WWII during our travels to appointments. They now know a little about the politics of nuclear war, both on the Japanese and Nazi fronts. (K wanted to know if I had been alive in "the big world war" because how else could someone know so much about it? Funny girl. It was the perfect opportunity for me to launch into my lecture on the benefits of reading. See me rubbing my hands together in glee?) We discussed Hitler and my favorite quote: "Evil persists when good men do nothing." And G and E went on to ask questions and have commentary--at ten and eight. It is deeply and supremely rewarding. So maybe they don't quite sense the trainwreck/heartsick feeling?

Hmmm. Perhaps I'm having more success than I thought.

____________________


I'm waiting to hear back from the children's therapy place about when they can get Q in. There's a waiting list of about two weeks, so perhaps around the 19th?

In the meantime, I'm looking into how to get G evaluated for ADHD, inattention only. I've read about this for years and just suspected that something was leading us in this direction. I even inquired about an IEP in the last couple of years. I ache for him, watching how his brain flits about, struggling to settle on the task at hand when it's owner demands it. He got that part from me. It makes me buggy in my brain and I suspect it's making him buggy in his brain too. He's such a bright little penny, loves to read, especially science, but has to be led through math. It's not that he doesn't get it, he just can't focus without help. Shutting out stimulus is a problem. He's often scattered in his work unless he's walking through it with someone.

Both of us are articulate enough to look smart and like we must just not be "trying" very hard when it comes to grades, schedules and general order. Au contraire. I've managed to figure out how to filter some things much better in my adult years, as most of us do in order to get along and make our way in society. My grades in high school and college were abysmal, but I flew through over 800 hours of massage school, even anatomy. The kids have been clean, fed, clothed, taught, nursed in sickness, played with in health, and mostly on time (through six moves) for the last 10 plus years, so I've clearly managed to figure out something about scheduling. ;o)

I would so love for my oldest to not have to reinvent this wheel. Surely we can shorten the learning curve here a bit? I'm working on it, anyway.

And goodnight. Tomorrow's travels last about nine hours. It will be fun, it will be fun, it will be... :o)

Peace and blessings to you. Hugs for the kiddos.

Help me out here...

I've got some hypothetical questions. (Not rhetorical. These I want answers for, but let's just say they're, well, hypothetical.)

1.) Is it possible for a person, once their heart has been broken, to remain so forever? Not permanently incapacitated or anything. Just maybe sort of chipped around the edges? A little cracked? Forever? Even if that person didn't want to be and kept thinking that there has to be some sort of end to it?

2.) Got any good swear words? I find myself wanting to cuss a blue streak rather frequently lately, but none of the usual words could possibly pack the called for punch. I need some ten ton swear words or phrases--you'll have to make them up and/or define the original ones you already have. It would help if I could say the word or words and they would be totally incomprehensible to my children or any curious onlookers (say, folks who might think I shouldn't act like that in public) but be verrrry specific in intent, at least in my head.

3.) When the kids are grown, am I "off the hook" at all for this mothering thing? In eighteen years, if I kiss them all and move the broken heart to Tahiti, will that make me a bad person? (For the record, I'll probably have grandchildren by then and won't want to up and leave, and I really am expecting things to improve on at least one of a dozen fronts, but just in case...) So--can I do that or does it make me look, uh, nutty?

4.) Got any comments on the notions of "praying without ceasing" or having an "attitude of prayer?" Both have been on my mind a lot lately and I'd love to know what other people think about these things.

I've got more questions, but I'd better head off to bed so I can marshal the troops again in the early light. I really am the luckiest mama in the world. Even tho' the little monkeys were time-change crazy today and were bent on taking me with them on their wild, wild ride. :o) Truly, I am a better person for getting to be their mom. Besides, what else could I possibly do with my time that could be this big of a deal? Nothing, that's what.

Hug your babies and sleep well.

Reading up...

So I've been Googling. I have seen the CT and xray reports (what the radiologists write upon reading the films). Also the EEG reports, which are full of very big words that boggle the mind. It took some doing, but I've been able to deduce that "synchronous sleep spindles" are a good thing, that Q has them, but the amplitude isn't what it should be. Whatever that means. Maybe nothing.

One of the terms that was a little easier to nail down is "colpocephaly." It is defined as "a brain disorder in which there is an abnormal enlargement of the occipital horns of the brain. This enlargement occurs when there is an underdevelopment or lack of thickening of the white matter of the brain." It is characterized by microcephaly and mental retardation. So I look up microcephaly. I'm aware that I may be deeply in denial, but in the midst of the definition it says, "Microcephaly is often equated with developmental delay and mental retardation. However, not all children with microcephaly are mentally retarded."

Well. That's a good start, right?

Q's microcephaly is congenital. It is defined as "An abnormally small head due to failure of brain growth." According to the neuro guy, this is precisely what's going on. The issue of colpocephaly complicates things further as it's an obvious and specific defect in brain development, though the precise implications of any of this are as yet unknown. I do know that my titers for any possible intrauterine infections (rubella, toxoplasmosis, cytomegalovirus, etc.) were negative and Q's karyotype came back exhibiting "normal male chromosomes". There are contiguous gene syndromes and genetic disorders which could cause this, but none seems to be indicated at this time.

The bad news: "On average, life expectancy for individuals with microcephaly is reduced and the prognosis for normal brain function is poor." Hmmm.

And still the little guy continues to coo and gurgle. He's started focusing on the mobile above his swing. He's discovered his nose. (I love that face they make when they're trying to back up and get a better look at the thing that's sprouting from between their eyes--mouth scrunched, eyes crossed, chin tucked in. Too cute!) Yesterday he watched intently as his arm went by his face. Today he's twelve weeks old. So what is he supposed to be doing that he's not? I keep thinking that there must be some mistake--yet all the tests say in the "reason" section: developmental delay. Maybe I am just in deep denial.

One very interesting article I found on MedicineNet.com (all quotes are from MedicineNet.com) discusses a study on intelligence in children. Apparently, the amount of gray matter is not the indicator of intelligence, rather, it is related to "cortical growth patterns." It would seem that having a thinner cortex in the very beginning of one's life (which then grows and thins again in a specific pattern) is associated with being scary smart later on. Q has a thin cortex over the occipital horns.

Who knows what any of this means? Perhaps reading all of this is just something for me to do instead of losing my mind?

In the meantime, some happy things:
E sang with her class for church this week. She and her compatriots were marvelous. Exuberant and practiced and marvelous.
The girls and Q and I participated in communion. I think the girls actually kind of "got it." Very cool. Q hiccuped loudly through the whole thing--cracking up the nice couple next to us.
G loves his little brother so much that he's willing to make up verses to "Hush Little Baby"--the little guy's favorite lullaby--when Q is fussy. No machismo there yet. :o)
K is sight reading about twenty words, sounding out more. Yay!! I love this stuff.
S is S. Silly and bouncy and chomping at the bit to do all the stuff her sisters do. Now if I could only influence the child to keep the scissors away from her head and to hold still long enough to eat a little more at mealtimes...
Strawberries and ganache for breakfast this morning. You should come visit. :o)
My folks, housing the kids and I through all this insanity and being so supportive in all the other ways too.
My sweet brother and sister-in-law who took the kids to play and shop today. Wow.
Sleep.

G'night. Sweet dreams to you, wherever you are.