Archive for the ‘illness’ Category

Boxes of old papers and photographs, stacks of books, piles of medical records and therapy reports I need to scan and organize.  The loft in our small town home has become the black hole of all the little bits of our life for which we have no clear cut place.  The loose ends, the question marks —“Do we need to save this?  What if we need this?” 


While my husband has been in school and working every weekend our time together has been limited.  Much of that time is taken up with things like, oh, parenting Nik and dealing with his ongoing health issues; there is never any time or energy left over for tackling any but the smallest of projects around the house.


Niksdad’s recent job loss turned out to be a bit of a mixed blessing this week.  He was home and wasn’t buried in the books so we had a chance to finally tackle the loft.  It’s not finished by a long shot but the work has begun; the “heavy lifting” of moving filing cabinets, repairing a sagging book case —the things I cannot do myself while also keeping a watchful eye on Nik —are complete.  The difference is remarkable; the loft feels larger already in spite of the boxes still stacked in the middle of the room.


I can finally imagine what it will look like when we have completed the project.  More to the point, I can already feel the sense of ease which permeates the space.  Where we once felt squeezed into our little corners of the room —where our desks sit tucked into opposite corners —already it seems more tranquil, more comfortable.  We both wonder why it took us so long to make this space —where we spend so much waking time— our own.  I say it was the vagaries of time and our limited energy supply but I think, in my heart, it goes deeper.




Nik’s recent bout of gastrointestinal illness has been very disturbing; not only has it gone on longer than any other virus he’s ever had, its intensity is unnerving when the waves wash over him.  He is unable to communicate the nature of the pain with more than screams and howls as he doubles over or as he shrieks and kicks his legs to seek some relief.  He clasps his long fingered hands together over and over asking us to help him, to ease his pain.  To make it stop.  We feel helpless to do more than hold him and croon soothing words as we rub his belly or his head, to clean up the aftermath of his body’s release.


This latest development, the hardening of his belly as his too slender body braces itself for the impending pain and uncontrollable outcome, frightens me.  It seems to last for hours and I am gripped with a fear that we are missing something that could mean the difference between life and death.  The recent loss of beautiful Evan sits heavily on my heart as I struggle with my desire to call his mother, Vicki, for advice and my unwillingness to ask her to relive that horrible pain.  I cannot; it would be too cruel.


My husband, the nurse, is quick to assure me that Nik’s bowel sounds are good and his belly does soften some after he’s had a bout of diarrhea —though not nearly back to “normal” enough to ease my fears.  I return to another memory packed away in my own mental loft —a place where there is not and never will be a neat, tidy, compartmentalized storage system for all the hurts and memories of watching my son struggle through so much of his early life.


The discovery of Nik’s intestinal malrotation was unexpected; he’d been showing many of the same symptoms that he has over the past two weeks and he had normal bowel sounds then, too.  Then, he was considered a “very lucky little boy”; the doctors discovered a partial volvulus —an obstruction —which they said was “a time bomb waiting to go off.”


I want to assume there is no such time bomb awaiting us now but the memories of all those times we thought we might lose Nik have built themselves up into a thick, smooth scar upon which I worry —much the same way others might rub a stone or rosary beads —each time Nik’s health takes an unexpected turn.  The history is too strong and the memories run too deep. 



I want to shed the burden but I seem unable to.  There are times it is the thing which keeps me pressing forward for answers on Nik’s behalf.  I fear the complacency.




I sit at my desk, still wedged into the corner but less crowded now.  The room is the same yet it feels different.  Attitude?  Belief?  Perception?  I am uncertain what makes the difference as I begin to make my way through the boxes of old hospital bills and NICU discharge reports.  “What if I need this?  What if Nik needs me to have this?”


I examine the pages, searching for clues —answers someone may have overlooked.  On those same pages, I see hope; for each date racked up on that enormously large hospital bill, it was another day my son lived.  Another day of getting stronger, healthier —closer to coming home.


I realize the answers I seek are not to be found on those pages.  Still, I am unable to let go.

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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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My boyfriend’s back and you’re gonna be in trouble
(Hey-la-day-la my boyfriend’s back)
You see him comin’ better cut out on the double
(Hey-la-day-la my boyfriend’s back)

My Boyfriend’s Back
(Robert Feldman, Gerald Goldstein and Richard Gottehre)

Well, Nik’s been quick to rebound from the nasty strep incident. He’s up and running and Mama’s trying to keep up! Lots to tell you about and no time to tell it.

Climbing, running, getting into mischief. Appetite still so-so but he’s developed a serious affinity for Baba Ghanoush. Who knew my child was such a gourmand? La la.

More to tell in the ongoing saga of the mysterious ear ailments. But that’s for another post when I can catch my breath.

Happy Monday!

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Streppin’ out with my baby
Can’t go out I’ve been up all night
Its for sure, not for maybe
That I’m all strep’d out tonight

(With apologies to Irving Berlin and Tony Bennett)

I spent a delightfully (not!) sleepless weekend alone with Nik (Niksdad had to work all weekend). We stayed up and partied all night long every night and then clung together like Kate Winslet and Leo DiCaprio on the Titanic. Well, truth be told, Nik clung and I just sank. I’ve never seen him so sick and miserable before.

Folks, we’re talking about a child who spent 209 days in the NICU and has gone through countless surgeries —granted, he had the benefit of some really groovy drugs for those. He would not let me out of his sight. He spent the better part of the past two days laying on top of me. If I had to get up to go to the bathroom or into the kitchen —both of which are within sight of the family room and are only a few feet away (hey, our house is pretty small) —Nik would follow me and cling to my pants.

When I gently pushed him out of the way of the gate as it closed, separating us for a mere minute or two, Nik would convulse with shrieks and wails, he’d bang his head on the gate and claw at his already tender ear. It was pathetic and heart-stoppingly frightening at the same time.

What on earth had become of my happy-go-lucky independent kid who was always content to hang out and play by himself? What could possibly have happened to cause such angst and anxiety in a mere five year old? I still don’t have the answer to that one. I’m hoping it’s a temporary aberration.

Today, however, after three days of antibiotics, there is a sliver of sunlight shining through. I have been able to leave the room for brief periods. Nik fussed but didn’t melt down. And, despite having been up nearly all night (I think only sleeping from 8 p.m. to 9:30, then again from 10:30 p.m. to 1:30 a.m. qualifies; I only slept the latter portion of that stint), Nik has been in remarkably good spirits. He has been content to play with his toys again. For the past two days they have all been completely ignored in favor of mama’s lap. Whew.

The fever seems to have broken but the tongue is still sporting its lovely white coat with pink spots indicative of strep throat —which he may have picked up from his cousin last week, we think. We’ll be partying with our pals Advil and Mucinex for a while longer, I think.

As for me? Well, I joked about having a party with my friends Cabernet Sauvignon, Pinot Noir and, possibly, Jose Cuervo. Sorry guys, Mama’s too pooped to party!

As you were.

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It seems like things have been moving along at a nice clip in our lives lately. Nik’s been doing really well and making tremendous progress in many areas —especially in both receptive and expressive communication skills —. He’s been eating like a champ, growing like a weed and, generally, just taking off like a little rocket!
Alas, rockets often come crashing down unexpectedly. In less than 48 hours, Nik’s gone from his bubbly, exuberant, mostly fully engaged five-year old self to this:

Saw two of his favorite doctors today and they both knew, instantly, that there was something wrong. They just don’t know what. Ears? Fine. Lungs? Clear. Sinuses? No problem. Throat? A bit red —choking on a cracker on Wednesday night could do that to a child— but nothing remarkable. None the less, wonderful Dr. Mary did a strep culture; results won’t be back until Sunday evening.

So, we’re spending the weekend laying low and hanging out with our good, good friends Advil and Zithromax. Mommy might invite her friends, Cabernet Sauvignon and Pinot Noir, over to keep her company while Daddy works. If it gets really crazy, she might invite her old pal Jose Cuervo, too!

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It’s not my story to tell but one of our own needs some serious prayers tonight as her little boy is going through emergency surgery. Please just say a prayer for the little boy who’s in surgery right now. God will know who you mean, I’m sure of it.

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Well, our trip to the doctor this morning turned out to be very worthwhile. In spite of the long drive —an hour up and two and a half hours back courtesy of summer traffic to the DE and MD beaches— we got a diagnosis and some reassurance.

Basically, Nik has (had?) something called Henoch-Schonlein Purpura (HSP) which, though I’d never heard of it until today, is apparently moderately common; especially in kids Nik’s age. It’s some kind of vasculitis caused by either a viral or bacterial infection —or sometimes from reactions certain meds. Fortunately, for us, Nik does not appear to be allergic to either his current antibiotic —a good thing since we’re already pretty limited in what he can take— or to his seizure medication.

At this point, there’s nothing we can do, really, except manage the symptoms; he can only have Tylenol for the next few weeks because of his upcoming surgery (ear tubes put in and adenoids removed on the 30th). We just have to keep an eye on the rash and call the doc if it gets worse. Otherwise, things should resolve in a matter of a week or two —or six.

When we finally made it home, I had a raging headache and needed a nap. Niksdad took Nik out for a while to burn off some pent up energy from our long car ride. When they returned and I awoke —much refreshed —we took our little fish to my sister’s house for a swim. Forty-five minutes in the water was just what the doctor ordered for all of us!

Too pooped to care about nutrition, we had take out from Applebee’s. Nik is sound asleep and Niksdad is on his way home from Blockbuster with a movie.

I guess you could say we’re on the mend once more!

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Tonight it feels like I can’t catch a break even if I used a net.

My wunderkind is down again. A dear friend emailed me yesterday “apparently no one told Nik he has special needs.” Apparently no one told him he was sick, either.

Today was a bumpy day after a bumpy night in a string of bumpy nights. Then the wheels fell off the bus. Nik broke out in a very fine, pinpoint raised red rash on his back, his feet and ankles, his arms, under his arms…

What’s a mother to do when her child is on so freaking many meds and has multiple medical diagnoses? It could be from the antibiotic —unlikely as he’s taken this one many times with no side effects, but you never know. It could be —waaaay scarier —a rash caused by one of his seizure meds. We talked to our awesome neurologist this evening (he even gave us his cell phone number!) and he told us to stop the medication entirely. Not something that is normally recommended with this kind of med but he wanted to err on the side of caution as the alternative could be, um, potentially permanent.

Then again, it could be something viral like roseola. Or, possibly, something else entirely.

Yeah, Niksdad and I really relish the idea of spending a sunny, beautiful Saturday traveling to the hospital to have someone that doesn’t know anything about Nik tell us, “Um, well, we’re not really sure…” Yet, we have to cover all the bases —just in case. Nik’s fooled us in the past and it hasn’t been fun.

There’s a little more to the story but I don’t have the mental energy to try to tell it. Something about the increase in all the icky “mysterious pain” behaviors and the angst of watching my son struggle so. I tried to tell him tonight, as he cried and pulled me to him —clinging to me like a monkey —that his Daddy and I are trying really hard to make it all better. I think he understands that; I hope he does. My heart aches and I am frustrated.

Can’t we just deal with one stinkin’ thing at a time? ARGH!

And have I mentioned that I’d sooo much rather be at BlogHer with Susan, Kristina, Vicki, Jennifer, Kristen, Jordan, Stimey, and a bajillion other potential blogging friends? Or DisneyLand with my pal, Drama Mama, and her awesome girls?


(Thanks in advance for the prayers and warm thoughts.)

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Sometimes my instincts are as good as I think.

My sister and I go to the gym together at least four mornings a week; last night, not quite certain why I felt it so strongly, I sent my sister a text message to preempt our daily workout. Niksdad started a new job today —his first as an LPN— but didn’t need to leave until well after I would normally be home and showered. Nik has had a couple of bumpy days since we’ve begun to increase his Lamictal in preparation for weaning him from the Depakene for his seizures. (You may recall my recent revelations about the 18-month long saga of Nik’s mysterious, debilitating pain?) We’ve seen a recurrence of some of the disorientation and ataxia, as well as a marked decrease both in his appetite and his ability to cope with sudden, unexpected change.

Little did I know when I listened to the voice in my head last night that I would wake this morning to a very sick little boy. His usual happy morning singing and chirping were notably absent —replaced by whimpering and moaning instead. When I picked him up, Nik was burning up and his eyes were glassy. I’m fairly certain he has another ear infection —a whopper this time. His fever spiked to 103.7 degrees Fahrenheit and the poor little guy has passed out in the middle of the floor while playing with one of his favorite toys.

We see our pal, Dr. Mary, this afternoon.

Meanwhile, since I am not out racing around to Nik’s various appointments and such, I have time to catch up on a few blogging related things. You know, making lemonade and all that…

If you aren’t familiar with Alltop go check it out! It seems yours truly has “made the grade” and is included in their aggregate listings of “top sites” for autism on the web. I am honored to share the stage page with the likes of Kristina Chew, Vicki Forman, and a host of others. Just goes to show, there’s a little something for everyone out there!

Kind of makes up for my feeling like the kid who’s grounded while all her friends get to go to the prom BlogHer. I am so down that I cannot make the trip to meet up with some of my absolute favorite bloggers this side of the universe. Alas, I guess I’ll just have to continue my little boggy crushes from afar.


Alltop, all the cool kids (and me)

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Celebrate good times, come on! (Let’s celebrate)
Celebrate good times, come on! (Let’s celebrate)

There’s a party goin’ on right here
A celebration to last throughout the years
So bring your good times, and your laughter too
We gonna celebrate your party with you

Come on now

Let’s all celebrate and have a good time
We gonna celebrate and have a good time

It’s time to come together
It’s up to you, what’s your pleasure

Everyone around the world
Come on!

Yahoo! It’s a celebration

Celebration ~ Kool & The Gang

Lots to celebrate here this week!

Our anniversary. Hurray! Niksdad and I actually got to go on a date on Friday night —candles, wine, good food, and a drive in the country to reminisce about the wedding night we spent in this quaint little bed and breakfast. It was really wonderful to reconnect and relax. Of course, we did talk about Nik’s CT scan results —a lot. But we had a lovely time. I think it was the first time we’ve been out for a nice dinner (and without Nik!) since before Nik came home from the hospital. Hmmm…I think we need to get out a bit more, don’t you?

Family. In my family, the span from Mother’s Day through the Fourth of July is insane. In addition to the Mother’s Day/Father’s Day/Independence Day celebrations, we have eight birthdays and four anniversaries. So, this past Sunday we got together at my sister’s for a family barbecue and pool party. This year, to add to the excitement, we also celebrated Niksdad’s passing his LPN board exam, my eldest niece landing a great internship she’s been hoping for (in the music/recording industry), and my sister’s engagement! It’s her second time around; we all really, really like the guy she’s marrying. I especially like him because he adores Nik and makes sincere efforts to meet him where he is. He doesn’t ever ask stupid or insensitive questions and he’s always willing to lend a hand watching Nik so we can eat, swim, or whatever it is that everyone else is doing that we usually sit on the sidelines. He’s a great guy and I’m very happy for my sister.

Changing Insurance for Nik. Hey, this is a biggie! We changed managed care organizations (MCO) through Medicaid and have recently discovered some pretty nifty perks. Our pediatrician is apparently rated as a “gold star provider” which means that any referrals written by her do not require any authorization. That’s right —NONE. So those prescribed twice weekly PT and OT sessions which the previous MCO denied on the basis of “Nik should be in school so school would be providing these services” (never mind they’ve been deemed medically necessary and truly are)? Covered without a blink of an eye. We start our new schedule with Miss D and Miss T in just a couple weeks and we are all so excited to see how Nik blossoms even more as he gains new skills.

Nik is thriving and happy again at PT/OT. Don’t know what the turning point was but Nik has now decided he loves PT and OT again. No more tears. In fact, yesterday we couldn’t get him to leave! He actually ran away from me when I told him it was “time to go zoom-zoom home.” He’s been so much more engaged and lively; he’s really been seeking interaction with people so much more lately.

Our visit to the ENT today. You know, sometimes we get so accustomed to all the weird, unusual things that go on with Nik (well, okay, in our defense his history is pretty chequered!) that we tend to see bogey men everywhere we turn. And, given the questions we’ve been asking for a year now about Nik’s head pains and ear problems, it was a natural leap to make when Dr. Mary called on Friday afternoon. But this time, it really isn’t a big deal after all. Normal, ordinary childhood ear stuff.

Turns out that none of us knew Nik’s myringotomy tube in his left ear had worked its way out (which is normal) quite some time ago. Unfortunately, Nik also has a significant propensity toward fluid build up in his left ear. And his adenoids. In other words, as the doctor put it today, “If you do a scan on a kid with a snotty nose, stuffy sinuses, and fluid in his ears, you can get a scary looking scan. But you have to look at the clinical presentation, too.” No signs of infection —whew! But then, we kind of already knew there was no infection.

So we’ve discontinued the nasty antibiotic. Not a moment too soon, either, since it’s begun having awful gastric side effects after just a couple of days! But we are looking at surgery to put in new tubes and to remove Nik’s adenoid. It’s not a guarantee that Nik won’t have pain or ear infections —there is so much surrounding the ear that it’s possible the pain is actually referred from somewhere else —but it will most likely minimize the snotty sinuses and will help with Eustachian tube function so the fluid shouldn’t build up so much. It’s not a magic answer —we didn’t expect one— but it does give us a measure of comfort we didn’t have before. Niksdad and I agree; we would rather have this surgery than put Nik on yet another medication which has significant long-term repercussions and side effects.

And, frankly, since we’ve decreased his daily Depakene level by a third, we’ve seen such a tremendous shift in Nik’s attention span and level of interest/engagement that we are loath to give him something which might dull his senses again. We really enjoy the little boy that is starting to emerge and can’t wait to see how he does as he begins to feel better.

As for all this celebrating? I feel a bit rusty at it but I’m sure I’ll get the hang of it again.

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