Posted in ASD, autism, cerebral palsy, Christmas, developmental disabilities, ear infection, good stuff, parenting, special needs, trains on December 20, 2008 |
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Just a quick update to yesterday’s post…
Since Addie Ville came to stay last night, Nik slept fairly well; he only woke at 4:30 a.m. but that was because we didn’t give him his extra dose at 11:00 p.m. We couldn’t —he was out cold and sleeping on his tummy and wouldn’t budge even when I gently tried to turn him over.
After some fuss and furor in the wee hours, Nik went back to sleep for another couple of hours and woke in a glorious mood! He’s been playing and singing and clapping for nearly two hours now. In other words, just like a typical day around here. YAY!
So, we’ll be off to see the trains and Santa in a few hours. Did I mention the trains? Nik seemed fascinated by them last year, even with all those mind-numbing drugs in his little body. I can’t wait to see what he does this year.
Me? I’m so excited to see him excited that I’m an emotional, weepy wreck this morning. But in a good way. Might have something to do with these bloggers I’ve been reading so far this morning. See, Christmas is the season of miracles.
It’s a cold, cloudy day but there’s no call for rain until later this evening. I think it’s going to be a good day! (And, yes, Addie Ville will be tagging along, for sure!)
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If you take a moment to read this post
, you’ll have some idea of what we’ve been going through the last few days and nights around here. For some reason, Nik’s system decided that it didn’t need to be, um, regular
and that’s been causing quite a bit of discomfort for him.
Things reached critical mass this morning when even a suppository wouldn’t accomplish the job. Oh, well, that and Nik waking with a fever over 102 degrees Fahrenheit. After calling the doctor, we suspected we might be looking at abdominal x-rays after our office visit. Nik’s anatomy is not exactly the “standard issue” courtesy of his intestinal malrotation which gives him a greatly shortened tract.
Where most people’s intestines and bowels look just like you might see in an anatomy book (or like this), Nik’s doesn’t have as many twists and turns. Well, actually, it had more twists —some of which nearly did him in just shy of his first birthday —including a sneakily hidden appendix diagonally opposite where it should have been (his was up under his stomach). Thanks to a fabulous surgeon in Oakland (yep, Nik’s a Californian, du-ude!), Nik made it through but now has more of a short hairpin turn in his large intestine than the nice long U-which wraps around the perimeter.
All this is to say that Nik’s been having some troubles and a lot of pain. And, that we can’t take a wait-and-see approach all the time because we don’t know what sort of scar tissue is there and what sort of nerve damage may or may not have occurred during his surgery.
True to form, we went in expecting Thing A and came out with Thing B instead; that’s kind of par for the course with Nik.
, as it turns out is another raging ear infection
. When Doctor Mary
exclaimed “Oh my goodness, Nikolas, no wonder you’re in pain!”
we knew it wasn’t pretty. In spite of what all the ENT (ear-nose-throat) doctors say, it certainly is
possible for a child with myringotomy tubes to have an infection without fluids draining out of the ear. We suspect that Nik’s got some dried fluid or wax in front of the actual tube (closer to the outer ear) which is blocking the drainage route. Kind of like a beaver dam in a river; it doesn’t necessarily block the entire flow but it restricts it enough to change the normal or expected course.
So, hear we are, a mere nineteen days into the month and Nik has had a stomach bug, followed by strep
, and now another ear infection. Poor guy.
None the less, with the addition of yet another antibiotic (his second in as many weeks), some multidopholus powder to his formula, and the help of our dear, dear friend, Addie Ville
, we’re forging ahead with our plans to visit Santa tomorrow on the Santa Clause Express
train. We went last year and had a wonderful time. If Nik’s feeling better tomorrow, I expect it will be even better than last year!
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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!
Hard to imagine; the time has gone so fast! We’ve gone from this
in what seems like the blink of an eye!
To celebrate today, we took a special trip on the Santa Claus Express Train run by this outfit
. It was cold and sleeting when we arrived and Nik wanted to walk, walk, walk. Brrr! But walk he did…with Daddy while Mommy got some “supplies” to keep him occupied during the ninety minute
train ride through the scenic Red Clay Valley.
We weren’t sure how Nik would handle the potential sensory overload. He amazed us by being a very happy little railroader until almost the end of the trip.
As long as the train was in motion, Nik seemed to be very relaxed and content to sit on one of our laps. That doesn’t surprise me as Nik has always been a very good car traveler and seems to enjoy looking out the window on our journeys. In fact, he was probably less ram
bunctious than some of the other four year old boys on the same train! Of course, that may have been because they were all eagerly awaiting the arrival of Santa Claus in our rail car; Nik hasn’t yet figured out who the fat guy with the beard and red suit are. Maybe next year? In any event, he seemed to really enjoy himself. We did too.
By the time we arrived home, Nik was pretty tired and took a short nap before we had to head down the street to his Nanny and Granddaddy’s house for a special birthday dinner. It was really special this year because his Aunt J and (maybe one day Uncle) W, joined us for dinner. So did Nik’s cousin, E, and her boyfriend T. It was a small gathering but felt festive. And it was wonderful to watch my sister and my niece both really play with Nik. It’s been a long road for them to get comfortable with simply being with Nik —a sign that they’ve all three grown tremendously over the last year!
Nik sat in his booster and took tastes of Mommy and Daddy’s food through the entire meal. He even had some of the cake and yummy homemade peppermint ice cream —made just for him by his doting Nanny! There were gifts aplenty (more on that in another post later) and smiles all the way around.
Nik tumbled into bed and was sound asleep within minutes of getting home. Niksdad and I reflected over the last four years and how far we’ve come —both as parents and as a family.
My heart is so full that it’s overflowing through my eyes.
Here’s Nik’s first-ever train ride…
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