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Archive for the ‘ear infection’ Category

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.

Thing B, 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!

Fingers crossed.

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…but it seems like Nik has hit another plateau with the decrease of his Lamictal. The ear infection is under control —last dose of antibiotic was tonight —and we’ve been giving him acidophilus to help his tummy cope with the the effects of the antibiotics.

Last night at bed time, I promised Nik I would be here when he woke; he went to sleep without any fuss —and slept twelve and a half hours straight through the night! Let’s see if he does it again tonight! Tonight’s bedtime was a replay of last night’s smooth operation and he was out cold by 7:30 p.m.

Keeping my fingers crossed!

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A promise is a promise, in my eyes
Can’t say you’re gonna just to compromise
The very thing that keeps two hearts intertwined
A promise is a promise you can’t deny, there’s no way
No way, no, there ain’t no way
A man’s only as good as his word

“Promises” ~ India Arie

As we continue to wean Nik off the Lamictal, bit by tiny, bit things are changing all over the place. Nik’s been learning a couple of new signs and some animal sounds with much greater ease and speed. He’s been working on dressing himself —to a certain extent anyway; he’s much better at the undressing part these days! He’s making progress in allowing greater quantities and thicknesses of food to enter his mouth; I daresay he’s actually doing it quite willingly.

Communication in general is on the rise. Where Nik still won’t actually point to the thing he wants —and I tend to wonder how much of that is related to his cerebral palsy and to his ability to control the muscles of his hands in so fine a way just yet — he has begun to make very clear choices when they are offered. We’ve progressed from Nik simply patting his chest to indicate yes or please if he’s asked “Would you like Mary Poppins/Signing Time/Cracker/Apple” one at a time, Nik will now wait until he’s been shown the two choices. Then he will indicate please while looking at the preferred choice. Lately, he’s actually begun to reach for the preferred thing. He’s also getting quite good at indicating no by gently pushing something away.

He’s getting much better at following simple instructions —as good as any small child with a strong will can possibly be, anyway. He’s especially grasping the concept of gentle hands and is greatly improving upon his ability to regulate his strength or pressure with his hands. I discovered this in the most delightful way just a few days ago.

We were waiting to see the pediatrician on Tuesday; Nik was sitting on the exam table and I was standing in front of him. I leaned down on my elbows and Nik began to look into my eyes very intently. I was quite surprised; I don’t recall him doing that since he was about a two years old! As he gazed into my eyes, he reached out with his fingertips and began touching my eyelashes, my cheeks, my hair. I only had to tell him “gentle hands” a couple of times as he explored. It was an intimate moment I’m not likely to forget; I was nearly in tears when the doctor walked in!

With each new decrease in his Lamictal —once his body adjusts to the new sensations and signals —Nik really seems to make new cognitive leaps. He’s finally making headway recognizing colors and sorting things. He’s much more conscious of who’s around him when we are out and about; he’s willing to try new physical activities such as playing with balls and swinging —both things he really didn’t care for in the past. He’s also developing a bit of separation anxiety and is learning how to use his emotions and behaviors to manipulate people!

Since my trip to New York a couple of weeks ago, Nik has been extremely adamant that I be the one to carry him up to bed or to put him in his crib; if Niksdad has carried him upstairs, Nik will dive toward me, wrapping his arms around my neck. As soon as he’s in his crib, Nik’s hands desperately reach for mine; he clings to me like a lifeline. Sometimes he will wrap his arms around my hand so it is pinned between his head and the mattress; on those nights I have little choice but to wait the few minutes it takes for him to pass out from sheer exhaustion.

If I commit the egregious sin of removing my hand too soon Nik twitches and whines and begins to cry. I’m such a sucker —though I much prefer the term soft touch —that I usually let him have his way. I know, I know. But we never got those early bonding experiences where he could nurse and drift to sleep in my arms; technology came between us for so long that I can’t help but feel selfish.

When Nik wakes in the middle of the night —thankfully, a waning occurrence with the exception of this latest ear infection and the first night or two after a decrease in his Lamictal —it is pretty much the same routine as at bedtime; I have actually fallen asleep with my head on the side of the crib on a many occasions to avoid the histrionics which ensue if I don’t. Yes, it would be simpler/better to let him cry it out. The challenge is that Nik is big enough and strong enough that he can not only hurt himself thrashing around in the crib —and has — but he can also break the slats if he kicks and pushes hard enough.
With his latest ear infection, Nik has been highly defensive of his right ear. If I so much as wad up a tissue and come near him —merely to blot the gunk running from his ear —Nik falls apart completely. Ear drops? Forget it; it takes both Niksdad and me to hold Nik down to do the deed. The result is a sobbing, kicking, screaming, flailing child —an utter joy to behold, yes —who then collapses against me with his little chest heaving and the lower lip quivering. Did I mention this now happens when I approach him to wipe his nose or to change his diaper? Yes, he is that paranoid about his ear.
So I decided to try an experiment yesterday. I simply promised Nik I wouldn’t touch his ear and then I kept my promise. Every time I had to approach him to wipe his nose or wash his hands or face, I simply repeated the phrase “No ear, I promise. Mommy won’t touch your ear. I promise.” And I didn’t touch his ear. By bedtime, he was less gun shy around tissues and baby wipes. A very good thing since those are my stock in trade around here!
I promise. Knock wood, I think it’s actually working! It’s a simple phrase to utter; people do it all the time —then often don’t honor it with their kids. I am making certain that Nik understands that I mean what I say. I have no clue at what age other kids catch on to the concept of promises but I can tell you this —Nik gets it. Completely.
How do I know this?, you might ask. Well, in a stroke of genius —inspired by exhausted desperation —I simply tried it last night. Nik had woken just after midnight with a painful bout of cramps from his latest antibiotics. Once I helped him through it and was certain he was ready to drift back to sleep, I got up to leave his room. Major upset ensued; I had visions of another night waking up to find the imprint of his crib tent pressed into my cheek and a crick in my neck. As Nik started to wind up for the full-blown tantrum, I said very sternly “No. STOP. It’s bed time and you need to lie down and sleep.” Yeah, that worked about the way you might expect.
As Nik ratcheted up his fussing, I laid my hand gently on his cheek; that usually settles him instantly. Then, quietly, I said, “I promise I will be here when you wake. Mommy will be here in the morning. I promise, baby. I PROMISE.” Nik snuffled against my hand but didn’t fuss when I removed it.
I didn’t hear from him again until morning.

I give you my word.

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Nik’s fever spiked around seven this morning to 103.8F and he was cranky and beyond lethargic. In fact, he went back to sleep after a very quick snack (via tube, mostly to make sure he got his seizure meds on time) and slept straight through until Niksdad got him to the pediatrician at ten-thirty.

The verdict?

Another ear infection. This one seems to be different; he’s never had a fever like this unless he’s been really ill. It may have something to do with the fact that he also had his g-tube changed yesterday afternoon; always a traumatic experience for Nik, this time was worse because of a large buildup of granulation tissue inside his stomach. (Imagine that scene in Alien…and you might have an idea of what that tube change felt like for Nik.) Again, not a typical reaction for Nik when his tube gets changed, either. But he was pretty sore and his body may have mounted an inflammatory response (which can include fever) to both the tummy trauma and his ear infection. Whatever —it wasn’t fun in the early morning hours today.

So here we are on his third antibiotic in roughly a month after rapidly eliminating the ones he can still tolerate with “normal” or expected side effects (those which don’t involve rashes, open sores, or vomiting). Oy.

But the Tylenol and several hours of sleep seem to be helping a bit. Nik’s fever is down under 101F and he is quietly playing for the first time all day.

Here’s what that looks like:

Can you say “Who drained the Energizer Bunny’s batteries??” I imagine he will be back to his rascally self in a day or two.

Meanwhile? I’ve got a post cooking on some creative uses for duct tape. I kid you not!

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For an update on Rhett and the rest of the Bird Flock go here.

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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.

NikZilla Strikes!



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…

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THE FUN JUST NEVER ENDS…

Translation for the pictorially challenged: Nik has both an ear infection and an infection at his g-tube site, and is on antibiotics which are creating a highly undesirable gastric effect resulting in extra work for Mommy who hasn’t slept much lately and has to resort to run-on sentences!

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