Archive for the ‘Nik video’ Category
It’s been a beastly week around here in terms of Nik’s Lamictal withdrawal. As the dose tapers downward and the cognitive abilities soar upward —well, it’s a delicate balance and something’s got to give, right? Nik’s decided sleep is the thing most easily dispensed with; only trouble is he didn’t ask my opinion on the matter. I am firmly in the camp of those who feel that sleep is non-negotiable. Unfortunately for me, he’s a master negotiator.
I’ve been tired and whiny; my body is out of kilter and my moods have been swinging like Foucault’s Pendulum in a storm of magnetic particles. Niksdad has been buried in schoolwork, clinicals, and paying work; on his one day off he is ensconced in books and —much as I love him dearly —utterly useless in providing any sort of break for me.
In a desperate attempt to minimize some of the middle-of-the-night energy surges and sensations which have been waking Nik between one and three each morning and lasting for several hours —or which simply result in starting our day at those insanely early hours— we’ve shifted Nik’s med schedule a bit. Unfortunately, it seems to have a strong impact on either the middle of the night or bedtime; a bit of a watered down Sophie’s Choice, if you will.
Today, with the shift in the schedule and the subsequent slight (and I mean ever so slight) overlap in doses, Nik’s broken out into THE RASH again. Good gracious! It’s getting to the point that I’d be just as happy to stop the meds cold turkey and tough it out for a week or so. At the rate we’re going —given the upsurge of undesirable symptoms which accompany each dose adjustment —this hell could last another twelve weeks. Unless something seriously changes, this mama isn’t going to make it that far.
Of course, the flip side to all of this is the sudden increase in Nik’s appetite, social interactions, blossoming personality, and expressive language. He’s taken to drinking Danimals yogurt drinks in lieu of a snack via his feeding tube; he’s even allowed me to feed him Greek-style yogurt (which is quite thick, like sour cream) with cherry puree mixed in —and let the spoon enter his mouth instead of just licking it. He’s learning to identify colors and shapes and sort things (some). He’s requested toys and his shoes completely spontaneously —and in context; he’s beginning to master the ability to make choices; he expresses “No!” —perhaps not so articulately as I’d like but very clearly; he’s helping to clean up his toys, taking turns, and learning to wait. It seem as if things are happening so rapidly that it’s hard for me to keep up and remember all the changes!
But the greatest gift for me in watching Nik’s rapid development is his sense of humor; he has an apparent love of the absurd. I’d try to explain but I think this will illustrate it better than my words could ever do:
I mean, who knew the letter E could be so darned funny??
Lest you think it’s all misery all the time around here lately, we’ve got new signs and sounds coming along! And Nik becomes more affectionate; less discriminating, apparently, but definitely more affectionate!
Just sharing the love!
What counts is not necessarily the size of the dog in the fight – it’s the size of the fight in the dog. ~ Dwight D. Eisenhower
As we’re weaning Nik off of naps and one of his meds, he definitely gets more tired by the end of the day. I suspect it’s a combination of increased energy and alertness which leads to greater physical activity—which I didn’t think was even possible for this kid —and greater sensory input to try to process; the result is that Nik is exhausted at the end of the day.
Today is no different.
His slender frame encased in his “footie” pajamas —the sight makes me smile as it’s the last vestige of any sign of baby about this boy —Nik chirps and sings as he toddles on wobbly legs toward the stairs. He is so tired he nearly runs into the kitchen cabinet en route.
He spies one of the cats lounging on the back of an armchair but is too tired to give chase; he acknowledges the cat with a sing-songy “mah-mah-mah,” his way of saying “meow,” as he pinches and pulls his cheeks to make the sign for cat. He continues in a zigzag line to the foot of the stairs; his feet are barely able to propel him forward. “I think you’d better carry him, honey,” I say to Niksdad.
Unassisted, Nik begins his laborious ascent. On most days, he holds the railing and walks up with great confidence and speed; tonight, he crawls on his hands and knees like a thirsty man approaching a desert oasis. He pauses about midway; sitting back on his foot, he nearly tumbles but Niksdad is there to steady him. “Nikolas, do you want Daddy to carry you?” my husband asks.
Nik pauses and turns his body toward us; I expect him to reach for his father. Instead, he turns brusquely away. His determination makes me smile. Nik refuses to ask for help except in the direst of circumstances; this, clearly, does not qualify. He continues to crawl; his progress is much slower than before. He pauses to rest his forehead on each step before he climbs —as if he is gathering strength for his arduous task. You would think he is Sisyphus, pushing the boulder uphill, he is working so hard and is so determined!
Reaching the top step at last, Nik staggers into his bedroom and heads right to his crib. I am certain he will ask for help in getting into bed; he is so tired I cannot fathom that he has the stamina to do it in the usual fashion**.
Apparently, I am mistaken yet again. Determination thy name is Nikolas.
** Video of “the usual fashion” as of approximately three weeks ago:
Things got waaaaay worse for my poor little guy yesterday afternoon. I’ll spare you the graphic details and simply tell you that I had multiple conversations with the pediatrician’s office (Dr. Mary was out yesterday) to find some relief for my poor boy! His skin was so raw! We had to discontinue the antibiotics; the side effects were strong enough to nearly send us to the ER yesterday —no exaggeration! Fortunately, after roughly twenty-four antibiotic-free hours, Nik is much more comfortable today! Not great but so much better! Whew!
Here’s a cute video to show you how silly Nik can be —even when he’s not at one hundred percent! And, yes, in the video Nik is shirtless on a cold, snowy, icky day! Let’s just say it wasn’t by Mommy’s choice. [NB: This was taken with my cell phone so the quality is not great. The audio is really faint but there's no need to turn up your sound; it's just the sound of one of Nik's toys in the background.]
I had another video, in which Nik plays Godzilla destroying Tokyo; it’s his recreation of a fine, fine cult classic I didn’t even know he knew about! The video was too large to post (26MB) so here are some “production stills” I put together.
I don’t know, but I think he’s too darn cute to be intimidating, don’t you?
I’ve also been told by lots of people that Nik is a dead ringer for this guy! If they only knew…
The unexpected delay also meant that I stumbled upon this post this morning from Good Job, Mama. In it, she directs readers to another blog, Mutterings of a Mindless Mommy, which had this post this morning. I cannot begin to do it justice, save to say you need to read it. After reading the story, I was —I am ashamed to admit it— a tad incredulous that a teenager had truly written such an incredibly insightful and profoundly moving piece. So I did what any self-respecting reformed journalist would do —I whipped out my Google Ph.D. and discovered that not only did a teenage boy write such brilliance, it was captured on video when he delivered his speech at school.
If you have the time, please watch this video (it’s approximately nine minutes long). You won’t be sorry.
So, Adam Jasinski, your fifteen minutes of fame are about over. With friends like Soeren Palumbo I think the rest of us will do just fine, thank you very much.
Knowin’ you can always count on me
that’s what friends are for
In good times
And bad times
I’ll be on your side forever more
That’s what friends are for
That’s What Friends Are For ~ Burt Bacharach/Carole Bayer Sager
Hope yours was full of love, laughter, and unexpected pleasures.
Nik wanted to send you his holiday greeting in person…
Maybe next year we’ll just skip all the expensive toys and gifts?
You know it doesn’t make much sense
There ought to be a law against
Anyone who takes offense
At a day in your celebration
Cause we all know in our minds
That there ought to be a time
That we can set aside
To show just how much we love you
And I’m sure you would agree
It couldn’t fit more perfectly
Than to have a world party on the day you came to be
Happy birthday to you
Happy birthday to you
“Happy Birthday” ~ Stevie Wonder
Oh what a wonderful and emotional day today! My baby —my tiny miracle who came into the world far too early, who has fought so hard for everything he’s achieved, the boy with the smile that can light up my darkness and a laugh that is music to my soul— turned four today!
Well, it’s not quite wordless…