Monday, March 27, 2006

Late night growls and gratitude...

Q is sick again with a hacking cough. I'm hoping he'll be better in the morning or I'll be on my way to the peds office. Sigh.

This poor little guy just can't catch a break. This is his third cold and he's only eleven weeks old! The last one had him on a nebulizer with inhaled steroids. Argh.


Since I've been feeling sucker punched and whiny lately, I thought I should maybe speak a little to the good stuff.

Tonight I am grateful for.....
...healthy (most of the time), growing kids who constantly crack me up
...friends and family who hold me up in prayer constantly and prop me up just when I need it most, every time
...flannel sheets
...really good frozen pizza from Trader Joe's
...a roof and walls and heat
...a free concert for the kids at church last night. The girls loved it (we have the video), the boys not so much--G thought it was too stupid to live through, Q was a little wired by all the activity. As the sun set, it streamed through the huge stained glass window over the baptistry. The sight of all the kids bouncing around and singing at the tops of their little lungs just below the image of Christ coming again, surrounded by angels, the New Jerusalem in the background... I was crying (because music does that to me). It was beautiful, one of those moments that freezes in time.
...chocolate. Always.
...a good vacuum (Dyson ball) and floors on which to use it, even if it's when everyone is asleep because it's just been that kind of day
...a sleeping baby. He's so beautiful, I find myself holding my breath as I watch him sleep.
...ten sweet sleeping cheeks to kiss before I retire
...a good brain that (mostly) serves my well and keeps me on my toes trying to figure out it's quirks
...the drive to do this mama thing again, every day, until the kids don't need me to anymore :o)
...this blog on which to vent and reorganize
...the shower, for crying in, when I feel like I'm going to just crack in half
...good stuff to read, and more good stuff to read, an endless supply of good stuff to read
...did I mention flannel sheets? I'm going to go crawl in between them now.

I've got to have the kids out the door at 7:45 so G and E can make it to school on time. Sighing there. I can think of better ways to be using that time, especially with a sick, nursing baby and all. C'est la vie, right? Right?

Sweet dreams. And if you're still up, why? Shouldn't you be in bed at this hour? ;o)

Friday, March 24, 2006

Well, we're back and in one piece. Whew!

After 48 hours on EEG, today's head CT and skull films...

The good news: No seizure activity. So I won't be giving Q daily steroid injections. And we won't have to even consider the alternative drug which has some problems with field of vision effect (narrowing and blindness). There is still a remote chance that Q is having infantile spasms and just hasn't developed the full-blown hypsarrhythmia seen on EEG in IS (if he were diagnosed at this age it could be considered early to have made such a diagnosis), but no indication of it for now. Woohoo! Also, the baby did not need sedation for the CT this afternoon--he fell sound asleep as we rolled into the scanner room. Thank God for all of that.

The bad news: the EEG is not normal. I don't know exactly what that means in technical terms, but I have a call in for neurodevelopmental therapy to begin ASAP at a local facility, per Rx. I should hear back from the scheduling folks on Tuesday of next week about how soon we can get in.

The neurologist stated that what can be seen on the EEG is that Q has an "immature" brain, which is causing what looks like shivers, as well as (probably) the other rhythmic tensing, relaxing. The chances for "mental retardation" are astronomically high. It is difficult to know at this point what that means in terms of real life. Q's genes provide for near genius on his daddy's side, and his sibs are brilliant, of course. So far, he's a little ahead of "normal" development, on many fronts. Today he was darned conversational--smiling, cooing and gurgling into my face, telling some spectacular story, if only I knew his language. So who knows?


I was reading in Ecclesiastes last night and again in the wee hours after feeding the babe. I once heard the book summed up as (paraphrasing) "Life is bad." I would have to agree. It was interesting though, to note that the emotion then and now, surrounding statements of just how bad life is, how there's wickedness even where there is righteousness, that emotion is pretty much the same. Exasperation. I'm tired of things looking downright awful...

So. (Deep breath--sucking it up.) The CT and skull xrays will be read this evening sometime. We go back to see the neuro guy in a month, then again in three months. The MRI will be scheduled for about 3 mos of age--sometime in the next few weeks. I'll be back to muse and fret, and write more of the story as it is revealed, and as parts float to the surface of my conciousness. (I'm occasionally having trouble tracking the details.) I've gotta try and catch a nap before the rest of the kidlets arrive back here.

Thanks for the prayers and well wishes while Q was inpatient. I'm so happy to be done with leads and glue and staying still for the camera, at least for now.

Have a blessed, peaceful weekend and hug your family extra tight for me.

Tuesday, March 21, 2006

More information, less expectation

We're all enjoying having G and E home for spring break--we'll miss them during the days when they're back in school.

I've done some reading online about infantile spasms, also apparently called West's syndrome. Last evening I had Q in for a reaction to amoxicillin. The pediatrician noted that he suspects the diagnosis of infantile spasms to be correct, based on Q's repetitive stiffening, relaxing, stiffening, relaxing, etc. as well as certain other involuntary repetitive motions. The doctor also said that it's pretty unusual for a kid to have IS if they aren't born with a host of other congenital malformations. Q has a tiny head, proportionally speaking, but is functioning like a baby about three months of age or older: rolling over, sitting up unaided the other night (though those could be part of the hypertonic features of what's up and that's not so good), tracking, smiling and cooing responsively, soothing to familiar songs and voices, bringing his hands together. He even rubbed his eyes yesterday morning.

It turns out that the pediatrician we saw last evening has close friends whose daughter, now four, had the same diagnosis when she was a few months old. She presented with the same symptoms as Q, except that her head measured normally. They did ACTH (adrenocorticotrophic hormone) treatments and then lots of neuro-developmental therapy (which Q could begin as early as next week). The treatment is hideous, but it greatly reduces ongoing damage as kids grow out of IS through their toddler years and may drop the rate of seizure disorders they suffer later. More than 50% of kids with IS go on to develop seizure disorders in later childhood. Prognosis is dependent on the underlying cause of the spasms. Usually, the spasms are preceded by neurological damage.

So. I'm still breathing. Feeling a little less shocky. Hoping that the news of the next couple of days is not the kind that makes me look for a receptacle for the contents of my reeling stomach. Before this previous year, I had no idea just how physically affected one could feel when presented with horrible news. Under the developments of last summer, I spent months feeling like I'd just spontaneously cease to exist because really, no one could survive such a horrible thing. I still feel that on occasion. This is worse.


I took the kids for pictures earlier in the evening. I've never had such a rough time getting everyone to sit, smile, be happy already, dadgummit!! I think they were picking up on my turmoil. About halfway through it hit me--what I wanted was a perfect session with my perfect babies, so I could have concrete affirmation that in fact, they are all okay, they will all be okay. I wanted a snapshot of "perfection" before I have to stare down the barrel of corticosteroids and all their nasty side effects. It occurs to me that my expectations were a bit, ahem, unreasonable. They are beautiful, lovely children. We had a heck of a day--counseling for each of the older four, lunch out, shopping, haircut, bank, more shopping--and everyone was still in good spirits by the end of it. We were exhausted, but still friends and all being very sweet to each other. It was silly of me to expect more of any of us. And the truth is, even if they aren't precisely what I set out for, the pictures are very cute. They are of my beautiful, lovely children. The same ones who all sang "Hush Little Baby" to Q so he'd settle down for the camera.

Wish me luck, send Q (and his mama) prayers. I'll be back after the hospital stay with an update.

Peace to you and yours.

Saturday, March 18, 2006

What a wonderful world...

I just cruised over to the boards and saw all the responses to my post of March 16.

I'm bawling. I can't believe there are so many bright, articulate women (who I look up to and am constantly inspired by) who have so generously offered much kindness and support. I bet that each of you is wildly appreciated where you are in real life. I am tremendously blessed to "know" you all.

Thank you. The peace that passeth understanding is pouring in right now. Thankyouthankyouthankyou...

Have a blessed and restorative weekend. I'll be back imminently to emote some more. (insert self-deprecating grin here)

Friday, March 17, 2006

The other shoe...

I've finally done it.

I've talked about this for a couple of years, but always had reservations. My motivation for beginning a blog now is simple: there are ongoing developments in my life and the lives of my five little punkinheads which I cannot bear to speak out loud more than is absolutely necessary. (Under other circumstances, there are certain people IRL who would find that utterly hilarious. Me? Wanting to be quiet?) So I will tell the story and post updates here, and everyone continues to be more than welcome to call, write, take me out for decaf mochas, whatever. But I can't tell this story over and over again.

Today my tiny baby boy saw a neurologist. The baby's head has dropped off on the growth charts from 17% at birth to less than 5% currently. The heavy thud you heard around midday today was the other shoe. It dropped. Since I had weird visual flashes of knives flying at my belly at about nine weeks gestation, wondered aloud whether or not it's possible for a babe to have seizures in utero, and saw "mild ventriculomegaly" on the ultrasound report, this is what I've been not panicking over.

The very nice doctor restated our new normal several different ways during the course of our half hour chat, because I didn't seem to get it. Perhaps I was too calm in the moment? The good news: baby is smiling responsively, cooing and gurgling, following objects. And, to keep things interesting, the bad news: the baby faces a "99% plus" chance of having some level of serious developmental and learning issues. He's having infantile spasms (a type of seizures) which require intervention in order to minimize the negative impact. He's hypertonic in some very specific and alarming ways (read: his rolling over and holding himself erect at such a young age is not precisely a good thing, even though two of his sisters did it much earlier). If his brain were developing normally, his head would be growing normally. There is no name for this. My torch titers were negative, his chromosomes normal. I am about to become an expert in something no mother wants to know this much about.

Next week, he will have a 24 hour inpatient EEG. Depending on what is seen while he's there, it may be extended to 48 hours. He will have another CT (the first was within days of birth, while he was in NICU), in part to identify whether or not his sutures remain open, as his anterior fontanel has already disappeared. Bloodwork will be done to rule out certain rare metabolic disorders.

It is my hope that I will be able to find grace and peace during the next several days and that eventually I'll be able to write about all sorts of other stuff, nifty stuff, like how nauseatingly great my kids are. (smiles) Or how lucky I am to have a gallery of the world's best friends and family and in some cases, complete strangers, holding me up and together. As you may know, this health challenge for Q. is the latest installment in what has been the crappiest eight months of my life. Throughout, I have prayed Anne Lamott's prayer, paraphrased: "Please, please, please. Help, help, help. Thank you, thank you, thank you." A friend asked how I could be praying thank you's in this and I told her that as long as the kids are okay, I will be too. I have to be. I am their mom and they need me to be sane and kind and compassionate. Functional. Someone has to be modeling that for them every single day, so I will be okay. Now this detour.

So. The littlest punkin is busy trying to keep his burps from grandma, the bigger ones are asleep, snug in their beds. The week is over, thank God. Now to rest up for what the next one brings.

Thanks for dropping by. Peace to you and yours.