It's been a while since I've had to write a big vent about craniosynostosis. That's because I've started losing track of how far post-op we are, have stopped visiting the CranioKids bulliten board so often, and just in general have tried to put the whole ugly ordeal behind us so we could get on with our lives. For the most part, Max's head shape looks ok, and until this past week, we were pretty certain that all the worries were behind us. We haven't even been to the ER, hospital or urgent care for Max in three months. I think that's an all time record!
And before I go on, my apologies to all the other cranio moms that follow our journey, especially those that are facing a new diagnosis. No, I don't know why we are facing so many complications on this crazy journey. No, all of these problems are not routine. In fact, no, I don't know anyone who has gone through such a bumpy ride. But we don't really have a choice. So, my cranio sisters, read on if you dare, and just thank your lucky stars that your journey will be smoother.
The other night, Max was feeling very cuddly, and spent a hour laying next to me while we both read stories. I was playing with his hair and rubbling his head when I felt it. A fluid pocket about the size of a quarter on his scalp. I did as any mom whose son had had two major surgeries in the past year would and panicked. I called my husband upstairs, and he could feel it too. There is nothing that can be remotely good, or even neutral, about a pocket of fluid hanging out on my little boy's skull. At best, it's fluid from the dissolving plates and screws; at worst, it's cerebral spinal fluid collecting from a leak in his brain!
The next morning, I called our surgeon's office, and the nurse didn't even consult with the surgeon- she told us we needed to come in the next day. Now, we've been trying to talk with our surgeon via email about Max's protruding screws on his forehead and have had no luck for two weeks. But apparently, all I need to say to get an emergency appointment is "fluid pocket" and I had an appointment the very next day.
So I called a friend to ask if she could help watch my girls, (since taking them to Dr appointments actually ranks even higher than grocery shopping on the "things I would rather scratch my eyes out than do with all three kids" scale,) and I got about two words out before I started sobbing. Pregnancy hormones combined with a healthy dose of fear had me imagining emergency surgery before the weekend was out.
I probably pressed the panic button too soon, but I couldn't help it. We've had what seems like every imaginable complication, including two major surgeries. I forced myself to keep stuffing a bitter sense of dread down my throat while we waited for the appointment.
We went to see the surgeon Friday afternoon, and he was remarkably unfazed. The fluid pocket seemed to have decreased significantly, and the doctor told us is could very well have resulted from a bump to the head, and if it wasn't causing him any discomfort, there really wasn't anything to worry about. He also reassured us about the screws protruding from his forehead, telling us that when they went in for the second surgery, they found that Max's bones were on the thin side, and that forced them to place screws where they don't usually. He actually seemed a bit more worried when we told him that Max had resumed banging his head on things this week and had been unusually cranky. (Well, unusually cranky is how we described it to the doctor. "Possessed by the demons of Hell" is how we've been affectionately referring to it at home this week.)
So, when all was said and done, we left the office with the reassurance that things were most likely okay, but with an order for a 3D CT scan just to be on the safe side. Max's persistent head banging stopped abruptly after his second surgery, and just reppeared this week, and that combined with his behavior this week can point to increased intercranial pressure. So we're going to get things checked out just to be safe. And I'm trying not to press the panic button.
Problem is, getting a 3D CT scan is an ordeal in and of itself. But, we've had miracles in that department before, and I'm not doubting that we can receive help in that department again. And if there's something that needs to be dealt with after the scan, we'll have to take that as it comes.
In the meantime, I'm wishing that I had never heard the word craniosynostosis.
You've heard about those so-called "Unanswerable Questions?" You know, like "Why do drive up ATM's have braille keyboards?" and "If 7-11 is always open, why are there locks on the doors?"
Well, I have some unanswerable questions of my own. For instance....
Why does Max always have to pee on the same spot on floor right in front of the bathtub? Why can't he just wait and pee when he gets in the tub? Or heaven forbid, pee in his diaper right before I take it off?
Why does my daughter, who regularly can't remember things like putting on clean underwear, and absolutely cannot process two-step directions, (i.e. "Put on a belt and come downstairs,") never fail to remember that two weeks ago last Tuesday I said that going to the pool would be fun and can we go right now, please, please please?
Speaking of, why is it easier for my children to be the fairness police by remembering who sat by Daddy last night, who got served dessert first last Tuesday, and who had to take out the last stinky diaper three days ago than it is for them to remember to, say, pick their wet towels up off the floor?
Why is it that the minute I get into a good, satisfying sleep, (a huge rarity for the pregnant woman now as it is!) I'm guaranteed to have at least one if not more of the little people in my house decide they have to join me in bed?
Why do parents buy their nine year old children their own phone with internet access? I'm going to be selfish here and say that all it does is make my kids beg for their own cell phones, and that, my friends, just ain't happening. (And really, does a third grader need her own phone? Who is she going to call?)
Why, when it takes me 20 minutes to clean a room, does it take my toddler about 30 seconds to demolish it?
Why is it, when we sing lullabies to our son every night, enroll him in semester after semester of Music Together classes, and expose him to violin music every day of his life whether he likes it or not, that the first song he actually sings is the most annoying cub scout song possible? And why does he have to repeat it 542 times a day? And why do we need a song about a dead moose anyway?
Why do my kids appreciate macaroni and cheese with little cut up hot dogs infinitely more than the meals that I spend hours planning and preparing? (Nothing like hearing "This is the best dinner ever, Mom!" when it came out of a Kraft blue box.)
What in the name of garden produce happened to this tomato? Early jack-o-lantern carving practice? Tomato-sucking vampire? A case of mistaken tomato identity?
Like a lot of good Mormon girls my age, I took piano lessons growing up from the piano teacher down the street. I learned to play passably, and once I could play all the hymns in the hymnbook and became more interested in violin and everything except piano lessons, I quit lessons and went on my merry way.
But as any Mormon who even pretends to play the piano knows, once anyone knows you play, you will be playing piano in meetings frequently, whether you like it or not. And I really don't mind playing the piano so much.
Then there's this beast.
I admit to being more than a little terrified of this monster.
Many people believe that just because you can play the piano, you should be able to play the organ. In front of a lot of people. During sacrament meeting. Um, not true. First of all, there are usually multiple keyboards, which has never made sense to me. How are you supposed to play on two at once without getting completely lost? And I have to confess, as many times as I've been told, I still can't for the life of me remember which is the Great and which is the Swell. And then there's the mysterious foot pedals. Seriously, how in the world is a girl like me, who can barely walk a set of stairs without falling supposed to play an instrument that requires two hands and two feet? And all the buttons with names like "Great to Swell" and "Flute 8'"? Seriously, it scares me.
Now don't get me wrong. I'm not knocking the organ. I have a good friend who is an amazing organist, and has tried to teach me something about it more than once. I think it's a beautiful instrument when in the right hands.
Problem is, those hands aren't mine.
In college, my bishop decided that it was time for me to learn to play the organ. After approximately fifteen minutes of instruction from another pianist-turned-organist, I was set loose on my unsuspecting ward.
One of my first Sundays on the organ, I realized I couldn't see the foot pedals because I was wearing a long skirt that was covering my feet. I made a move to adjust my skirt, and slipped off the bench. (Told you, I have a problem with coordination!) Just as a bishopric member was sustaining someone in the ward, and asking "Any opposed?" my feet fell on the pedals, honking the organ and sending everyone in the congregation into fits of laughter. The bishopric member handled it wth grace, and responded by saying "Anyone opposed besides Stacy?"
And still my "career" as an organist continued.
Another Sunday, in another ward, I was accompanying during a congregational hymn that had four verses. I was playing along and thought that we had finished. I played the last chord, and started to scoot off the organ bench. Problem was, the congregation kept singing. Turns out I had decided to stop after the third verse, and the congregation had collectively failed to read my mind. The speaker that followed wasn't at all phased, and began his talk by saying "You know, I think I'll just take after Sister Smith today and give three-quarters of my talk and sit down." I was more than a little mortified.
Then their was the Sunday I was playing the sacrament hymn, quietly and reverently, like a good little organist. I was even managing the pedals fairly well, until I misjudged, and hit one of those metal knobs that sit right above the pedals. I didn't even know what those were for. Well, we all got an education that instant, when the organ changed from a soft and mellow, appropriate for the sacrament sound to "Let's sing 'Called to Serve' at Stake Conference" blasting organ. I think I continued blushing all the way through our three hour block that day. And I've learned to stay far, far away from those metal knobs.
When we moved into this ward, it took the bishop about 5.2 seconds to find out that I played the organ. That tends to happen when he's the one that moves the piano into your house and asks your husband if you play organ too. I haven't yet managed to convince my dear husband that I don't really play the organ. I think he enjoys the sacrament meeting entertainment. The bishop told me that this ward had about eight organists that rotated duties, and I was thrilled, assuming that I wouldn't be needed. I avoided the organ rotation for almost a year, gracefully declining when the poor unsuspecting music director asked me if I would be interested in playing the organ in Sacrament Meeting.
A few months later, just as I was gloating in my organ-avoiding successes, I had a really hard time telling the Bishop "no" when he asked me directly if I would start taking a turn.
My first Sunday, I thought I had avoided complete humiliation, until my Bishop shook my hand afterwards and jokingly said "Sounds like you might be a bit rusty!" Um yeah, Bishop, this might be as good as you get!
A few weeks ago, I was playing prelude on my appointed Sunday, and Tom left the heathens girls with instructions to watch Max while he went to do whatever it is guys needs to do before Sacrament Meeting. (Does anyone really know what that is? Seriously, I would like to know!) I was innocently playing prelude, trying not to make the organ honk, when I noticed my toddler running gleefully up the aisle. Apparently, Max decided he wanted to get down, so the girls let him. Ok, that makes perfect sense. So, I continued my prelude playing while shooting rays of death at my girls, trying to will them to come get their brother before chaos ensued. No dice. Max was not only thrilled to be on the stand, but more excited to see that Mommy was playing the piano, and decided, of course, that he wanted to join me. I really need no help making a mess of things when I'm playing the organ, but with Max's accompaniment, it was worse than usual. I faced the choice of stopping the prelude right before the meeting started and taking my screaming little boy out, or letting him continue to bang on the organ. Just as I was about to risk Armageddon by removing Max from the organ and the meeting, my husband strolled up on the stand, picked up Max and took him out, with Max screaming "My mama! My mama!" the whole way out of the chapel.
At this point, I think my ward looks forward to the Sundays when Stacy plays the organ, because they're guaranteed some cheap entertainment.
I think I should be allowed to stick to the violin, and at least minimize the potential for complete humiliation.
Thanks to Becca for letting me shamelessly steal her idea...
Friends who call and, for no other reason than being an awesome person who should probably be translated, offer to take our kids overnight so that we can have a getaway before the next baby is born. I need to be a friend like that.
The clean house that results from a friend coming over to spend the night. There are even clean sheets on my bed. As long as she doesn't open the closets, she should be good.
A walk to the 7-11 in the middle of the afternoon for a Slurpee. I don't think I've had a Slurpee since I was a teenager. Mine was wild cherry flavor. You better believe we'll be doing that more often!
Violin students who practice, and seeing the joy on their faces when they accomplish more than they imgained they could.
Bountiful baskets. Is it silly to be excited about enormous amounts of produce every Saturday? I hope not.
My little boy climbing in my lap to read a story, then demanding that story over and over again.
The (few) moments of peace and giggles when my girls are actually getting along.
Remembering leftovers in the fridge, excited that I'm not going to have to be creative for lunch again.
Laying out back-to-school clothes in neat little piles for each kids, realizing that they will likely never be that clean or neatly folded again.
Hearing that your soon-to-be third grader's teacher emphasizes reading like crazy, and hearing that he has transformed many a reluctant reader into kids that disappear into their rooms for hours, reading a novel.
Sleeping in until ridiculously late because my 8:00 am violin lesson cancelled.
Text messages. From anyone.
Watching my violinist daughter win $100 in a talent contest, and feeling (for a minute) that all the hours, frustration and tears were worth it.
The promise of a ward campout next weekend. It's the only way I can get hubby camping, and the kids love it!
How was the Girls' Weekend, you asked? Ok, so maybe you didn't ask, but I'll tell you anyway.
We stayed here. (It was paradise, really!)
This massive Elk was our protector- secretly, I think he was laughing at us.
We did a lot of this. (and if it looks like we were all lounging around doing nothing, it's because we were!)
And we did some of this, (which is more pictures of us sitting around gabbing like crazy with the important distinction that we got up and changed our location!)
And here we are doing more impersonations, giggling, swapping stories, and entertaining ourselves the way only girls can. My husband was incredulous when he found out we didn't go anywhere the whole weekend. "You just talked?" "Yup." "You didn't go anywhere? You didn't play any games? You just talked for the entire weekend? How boring!" Except it wasn't. And as all girls know, you never run out of things to talk about.
Oh, and we hung out in the hot tub. And everyone stayed fully clothed the entire time. Including me. Especially at 2:30 in the morning. Uh huh. Yup.
So now I'm home, missing my girlfriends, and trying to re-set my sleep schedule. And to convince Tom that overnight trips with the girls should be a monthly requirement or so for sanity purposes.
What else is going on, you ask? (Just play along and pretend with me, okay?)
Well, I had the two incidences of spotting that I wrote about, then nothing. I then had some wicked contractions that had me reaching for the stopwatch. Just as I was about to panic, everything stopped and hasn't started since. Good thing, because we still have months of cooking this baby before the timer goes off. At the midwife's appointment today, baby is measuring right on, heartbeat is good, and so we're back to business as usual around here.
Oh, and Max is now refusing the binky with all the disdain his 21-month old self can muster. His new security object is now this little blue alien. Whatever works.
Abby is eleven and in fifth grade. She practices like crazy, love performing, and "really, really, really" wants to be in the symphony someday. She loves ice skating, riding horses, and has more energy than both of her parents put together.
Ashlynn is nine years old and in fourth grade. Ever since her arrival in the front seat of our minivan on the side of the freeway, Ashlynn has always done things her own way. She keeps everyone in the family laughing, and is always there for a hug, a smile, or a cuddle. She loves gymanstics, playing the piano, and frequently is found bouncing off of one piece of furniture or another.
The Big Brother
Max is a four year old ball of energy and fun. Obessed with the iPhone, Toy Story, and Phinneas and Ferb, he regularly has us laughing hysterically at his antics. Max was born with metopic craniosynostosis and has had two major skull reconstructions, and has come through with flying colors.
If there's trouble to be found, two year old Ian will be in the center of it. Ian is charming, articulate, funny, and incredibly determined to make the world exactly the way he wants it. He loves his brother, climbing on the counters and waking up at obscenely early hours.