Posts Tagged ‘pain’

If you ever doubt that nonverbal, seemingly “severely autistic” people don’t know what’s going on around them, I’d like to offer this for your consideration:

We saw a particular doctor, a neurosurgeon, several months ago to evaluate Nik’s “mildly tethered” spinal cord. During the appointment, Nik was very focused on the doctor’s stethoscope since he is enamored of all things medical. While Nik played, we discussed his symptoms with the doctor and plotted next steps including ruling out some things. We have not seen this doctor again (yet) since the initial visit.

Lately, Nik’s been having an upsurge of similar symptoms including intractable head pains. He’s also started using his device to ask to see this particular doctor. I, stupidly, assumed he was just randomly naming one of his many doctors.

Until this morning.

I asked Nik, after he had said this doctor’s name a few times, “What do you want the doctor to do?” Nik started answering with his self-scripted litany of the processes involved in taking vitals, etc. We see enough doctors that Nik not only knows the routine but has incorporated it into his play routines. It’s only recently that we realized he only engages in this routine when he feels “off” or needs to soothe himself somehow. Nik became entrenched in this line of pretend play and I didn’t know what to make of it. What was he trying to tell me.

He asked for the doctor by name yet again. Knowing how he might respond if I asked the question the same way as before, I changed my approach, asking him what he wanted the doctor to FIX. His reply blew me away,

“Fix head feel hurt.”

Always, ALWAYS presume competence and understanding. Even when you can’t put the pieces together, they are there. They have meaning even in their seeming randomness. Never give up.

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I’m still here!

I’ve been trying to cobble together enough contiguous blocks of time to actually write a post.   Nearly everything going on has been good; Nik is now on Day 23 of NO FORMULA, he’s sleeping well and he’s making phenomenal progress in so many areas.  It really feels like we’ve turned a very big corner —kind of out of a dark alley and into a sunlit park.

Nik has an ambulatory (twenty-four hour) EEG beginning tomorrow morning.  His MRI is scheduled for next Tuesday.  Since my last post, we’ve had photo shoots for Easter Seals, a meeting with a rep from Prentke Romich to evaluate different communication devices and Niksdad graduated from nursing school.  Oh, and Nik has learned how to sign and say “Papa” (he can’t say the letter D but can say P) and just started drinking juice.  The latter is a vital step toward losing the feeding tube altogether.  The doctor told me today that Nik needs to be able to drink a total of 1300 ml daily.  For anyone trying to do the quick conversion, that’s just over forty-three ounces.  Just under a quart and a half of liquid.  We still have a ways to go.

Um, on that topic, Nik has also pulled his feeding tube directly out of his stomach no fewer than four times in the past forty-eight hours.  Did I mention it was still fully inflated —about the size of a large cherry?  Yeah, imagine pulling that through your stomach wall without cringeing. 

We don’t do anything in half measures around here, do we?

In case I can’t find the words —or the time, I’ll leave you with a few glimpses of what we’ve been up to…minus the tube-pulling.  I’ll leave that to your imagination.

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I don’t know if it was the addition of some overlapping doses of Advil on top of the other meds last night (and frankly, I don’t much care right now)…

NIK SLEPT! Nearly eleven hours! 

Did I sleep, you ask?  Um, of course not.  I’ve gotten so used to waking and being up in the middle of the night that I found myself staring at the ceiling and listening to the silence.  Not a bad alternative, considering.

I still stand behind every word I posted yesterday.  Even if the Advil helped last night, we’ve seen this cycle before; it helps for a night or two then…Pfffft.  Nothing.  Besides which, long term use of NSAID’s is hell on the stomach.

So, we’re waiting to try a new course.  Still, it’s nice to be able to keep my eyes open while I’m waiting.


ETA:  The neurologist called us first thing this morning. 

One of the things I like so much about this particular doctor is his accessibility and responsiveness to families.  I also appreciate his willingness to listen and reevaluate his stance on treatments.  He agrees that we should try the migraine approach first as well as pursuing some additional imaging to make sure nothing’s changed since Nik’s last MRI done in 2007.  Because Nik can’t tell us if the pain is worse, we are left to rely on perception.  We all agree that perception, when dealing with potential brain insults, is not a great diagnostic tool.

Meanwhile, we’re going to stick with “Plan A” until early next week so we can have a full week’s worth of data before we decide which of the next possible steps to take.  We have some medications to read about, too.

Unfortunately, our options for migraine treatment are limited because of Nik’s age.  Medications such as Imitrex or Maxalt are not approved for use in children as young as Nik so there’s little in the way of any relief from an active migraine except for the whole antihistamine class of meds combined with analgesics —which is what we’re doing now with the Atarax and Advil.

The next course is prophylaxis —prevention.  The options there aren’t so great either; again, much of the limiting factor is Nik’s age.  Some options have cardiac side effects so Nik would have to have regular EKG’s due to his existing heart condition.  Others cause weight loss—not something Nik can afford given that he’s barely topping the third percentile as it is.  A third option, which we may try, can result in weight gain and drowsiness.  It’s really a question of evaluating and choosing the lesser of the evils.

If the imaging results are normal —by that I mean unchangedfrom Nik’s last brain imaging—and the medications don’t do the trick, our next step is to lobby the powers that be (Medicaid) to authorize a visit to either Children’s in Philadelphia (CHOP) or Johns Hopkins in Baltimore for evaluation in their pain clinics.  Since we don’t have other insurance right now, our hands are tied by what we can get covered. 

We’ll cross that bridge if and when we need to.

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Apologies if this post is a tad disjointed (and poorly written); the cumulative effects of chronic sleep deprivation seem to be kicking in a little quicker each day.

Nothing’s changed.  Nik’s still in pain and the episodes are increasing in frequency, duration and intensity.  The toll on our family is becoming too great to wait out the dietary changes.  Frankly, I’m not entirely convinced that’s the root of the problem anyway.

Before all the bio-med supporters go getting up in arms, let me clarify.  I do think that Nik will derive benefit from the GFCF diet but I do not think those benefits have anything to do with his autism.  I’ve gotten lots of kind, caring and very well intentioned emails and messages —all of which I appreciate—about articles and plans and protocols that will help “heal Nik’s gut.”  The gut isn’t the problem here.

Nik’s gastrointestinal issues do not stem from food allergies.  They do not stem from leaky gut or malabsorption or anything else because of his atypical neurology.  They are the result of his anatomical differences —his intestinal malrotation and resulting short gut.  He also has little to no transverse colon.  He does not have chronic diarrhea or chronic constipation; in fact, his bowels are pretty darn good on most days, thank you very much.  He does not have horrible stomach pains or painful reflux that we can tell; believe me, he did at one time so we can tell the difference.  In fact, his recent endoscopy in February was so beautiful many of the doctors were envious. 

What Nik does have is some sort of horrible headpain.  We now know it’s been going on for nearly two years and he has been trying his damnedest to tell us.  That’s not to say we haven’t been listening; more that we haven’t been understandingthe message.   True to form, Nik continues to crank up the volume (by increasing the severity of things) until we catch on.

We’ve spent the last two years trying to investigate every possible avenue from GI to ENT.  We even stopped his seizure medications in September because he’d been seizure free since March of 2008 and his last EEG looked great.  That one change gave us a short break from the nighttime wakings and distress for a few months.

It also gave us a false perception that this latest pain was something new and different.It was that perception which led us down the path of diet and ruling out food allergies.  [For the record, Nik’s formula —available only by prescription— is already GF, does not contain soy, does contain somecasein and is entirely food-based.  Thus far, any efforts to find a truly GFCF enteral formula has been unsuccessful so we’re giving Nik some enzymes and lactobacillus/acidophilus types of supports.]

Things have gotten to the point that Nik, bless his strong little heart and spirit, is so worn out by his own lack of sleep and his own discomfort that he’s barely functional by dinner time.  Sure, he’s present and he’s entertaining —just as long as you don’t expect anything from him like focus, communication, learning. 

Even the quality of his sleep, when he gets it, is different now; he no longer drifts off to sleep looking peaceful and content.  Now, he simply passes out in whatever position he lands in, his smooth forehead creased and furrowed as if he’s fallen asleep in the middle of some deep thought.

Thus far, no medication we have on hand helps him sleep through the night more than one night in a row.  He either doesn’t respond to it in a typical fashion (highly possible with Nik) or it’s simply not the right thing and isn’t working on the right mechanism.  The end result is the same —another night’s fractured sleep filled with screaming, face pummeling pain.

(Sometimes the face getting pummeled is actually mine if I’m not quick enough to dodge when Nik starts rearing in pain.  I’ve gotten clocked in the face a few times.  Ouch.)

I’ve fought the good fight and am not giving up on finding answers for Nik; if there’s one to be found I will not rest until we find it.  Ah, but now we come to the crux of the matter —rest.  The toll exacted on our entire family is simply becoming too great; it’s long since crossed the line from highly inconvenient to flat out dangerous

One of these days Nik will either hurt himself badly or hurt me; my husband and I are practically sleeping in separate shifts and his school work is starting to suffer because of all the additional worrying he’s doing about both Nik and me.  I look and feel awful and I no longer even care about it —I’m just too tired to care anymore.  It hasn’t happened but I fear the day when my frayed nerves snap and I end up doing something I would regret.  Nothing abusive or horrible like that —I would walk out the door first and call my mother to go watch Nik— but behavior I would not be proud of having my son witness.

We have become a family on the verge of a crisis.

I placed an emergency call to our neurologist on Monday.  We saw him Tuesday morning and discussed the situation.  He is of the opinion that much of what Nik is experiencing is “typical behaviors seen in children with significant developmental delays or autism.”  He wants us to try increasing Nik’s melatonin at bedtime and giving him a larger dose of Atarax —roughly a fifty percent increase over what we’ve already tried though certainly still within normal prescribing guidelines.  The plan is to try this for two weeks and see how it works.  If it doesn’twork, then he wants to talk about a trial of Risperdal at a low dose. 

I hate the idea of trying the Risperdal; I can’t put my finger on why, exactly, just that it doesn’t feel right (and I’ve learned over time to trust my instincts).  On the one hand the doctor is saying he’s reluctant to label Nik as autistic (“He’s so interactive and social with you”) —though three previous doctors have had no trouble with labels from PDD-NOS to atypical autism.  Yet, on the other hand, he is suggesting that Nik’s issues are potentially best treated with a drug used for many autistic people.  (Yes, I know, it’s not only used for autistics.  However, in the context of our conversations with this doctor, the point was made clear.)  To hedge his bets, he’s also referred Nik for a full autism evaluation by the Developmental Pediatrics group at our home-away-from home much frequented pediatric hospital.  Nik does, after all, meet many of the diagnositc criteria for ASD.

But, here’s the thing: I still believe with all my being that what Nik is experiencing is genuine, acute, physical pain.  In his head.  Migraine or cluster headaches, perhaps?  The pain certainly seems strong and debilitating when it strikes —enough so that it has woken him from a heavily drugged sleep on many nights including the last two —nights when we’ve increased the Atarax by more than fifty percent. 

My son has had a lifetime of unnatural things pumped into his little body; it’s what was necessary to keep him alive when he arrived far too early and far too undeveloped to face this world.  Little by little he’s divested himself of the need for most of his medications and it pains me to start on what feels like a potentially slippery slope of medications and side effects.  If we’re going to start down that path, I want to start with a few more systemically benign medications, you know?

I’ve put another call in to the neurologist to discuss a change in tactic.  (I’m waiting for a call back, probably tomorrow.)  Already, the side effects from just two nights of the new “plan” are evident and I don’t like them.  Nik is groggy and cranky, off-kilter and easily distressed.  His appetite is greatly diminished and his ability to focus on a meal long enough to finish it is dicey at best.  I’ve not been able to leave him alone for longer than ten minutes at a time because his threshhold for frustration is so low and his initial response right now is self-injurious; I have to be nearby to redirect him.

Ironic, isn’t it, that the medications we thought might decreasehis “behaviors” are making them worse?  That also fuels my belief that the current approach is not the right one.  I feel strongly that we need to try treating Nik with migraine medication for a bit before we skip right to the antipsychotics.


Meanwhile, expect my web presence to be sketchy and sort of hit-and-run.  I can’t possibly disconnect completely; you, my cyber friends, are part of my lifeline.  My web of support which holds me up when I am too exhausted and emotional to think straight.  You stretch out your hands to the ether and hold me up with your words of support, your posts of hope, your shared videos that make me laugh and cry.  You help me release the feelings I don’t have the energy to express with my own words. 

You are my drug of choice. *grin*

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Original art courtesy of let petit enfant blog

Original art courtesy of le petit enfant blog

You know it’s never a good sign when the nurses at the pediatric hospital (a) know you and your child by both sight and name and (b) can tell when things aren’t good just by looking at you.  Yep, true story: one of the nurses actually commented to me the other day, “Mrs. Niksmom, you don’t look quite like your usual self.  Everything okay?  You’re usually, um, more, um polished.”  She stammered, embarrassed.  But she said it with such tender concern that I couldn’t possibly be offended.  Besides which, she’s right; it’s been a pretty rough go of things around here these past few months.

 “Oh, thanks T!” I laughed, “I thought I looked pretty good considering we haven’t slept through the night since about Christmas!”

Poor thing, her jaw dropped and her eyes went wide with surprise.  “Oh, well, you’re right then,” she smiled weakly, “you do look pretty good.  But still, not your usual self.”  I was touched by her concern.  She’s known us for a few years now and genuinely cares for Nik and our family.  We’re pretty lucky that way, I think.


 Things are still clear as mud around Nik’s ever increasing bouts of pain and wakefulness.  The allergy testing was all negative and the endocrinologist we saw this week was very up front in telling us he didn’t think the answer would be found in his realm of medicine —at least, not in the traditional sense.  Both doctors hinted quite broadly that we may have more luck exploring the area of food intolerance through elimination diet and the addition of some probiotic types of supports.  Actually, the allergist hinted, the endocrinologist flat out told us. 


We’ve decided to re-visit the whole issue of gluten and casein in Nik’s diet.  There does seem to have been a dramatic increase in the frequency and intensity of Nik’s episodic headache and pain activity since we’ve been letting him eat absolutely anything he wants.  Really, anything we offer him is more accurate.  Difficult to know for sure as the correlation doesn’t always equal direct cause and effect.  Still, here we are back to the GFCF diet and trying to find things Nik can or will eat with his textural challenges.  The learning curve is steep as Nik has decided to throw in a slight monkey wrench of not wanting to bite or chew anything again. (Insert heavy sigh here.)


Consequently, Nik’s getting more formula than we’d like.  That one change seems to be having a profound effect on his pain; it seems the more formula he gets, the worse the pain.  And the itching sensation is greatly intensified—at least it appears to be an itch; when it kicks in, Nik grabs at his cheeks, his eyebrows, his belly and his legs and pulls frantically at them —as if he could remove the offending or irritated part.  The challenge is that we don’t know what is causing the sensations so we don’t know how to eliminate the culprit.  His formula (which is a gluten-free prescription medical formula) does contain casein so we’re kind of stuck until we can find a replacement or until he decides to eat enough that we can wean him off the formula. 


We’ve added some enzymes to Nik’s diet which seem to minimize some of the gluten/casein effects but it’s not foolproof.  Nik can’t say for sure if he feels different after taking them; we can only judge by his behavior or lack of pain whether it’s an improvement.   


Meanwhile, we’ve been told by a few parents who have transitioned their children to GFCF diets —and seen marked improvements in sleep, gastric functioning and a lessening of self injurious behaviors —that there was a definite detox period of roughly ten to fourteen days in which the symptoms seemed to get worse before they got better.  Hearing that bit of information was a tremendous relief for me this week as we’ve seen a marked regression in some of Nik’s behaviors.  He’s gone back to some of the self-soothing things which he seemed to have outgrown —infant toys which light and play music, vibrational input in his mouth, mouthing absolutely everything (which he hasn’t done at all in months).  His perseverations, especially with doors, seem to be very prominent again in spite of all efforts to redirect his attention. 


Interesting to note though, Nik’s cognitive skills have not slipped one iota.  Yes, he’s very easily distracted —more so these past few days than ever before— but he’s still very engaged in his environment and willing to do his “work” in his PT and OT sessions.  Nik’s keenly interested in letters and numbers and figuring out how things work.  Even when it may look, to an outsider, like Nik is simply perseverating on the animals which go with his alphabet train station —repeatedly pressing the animal into the grooves to hear what it says, what color it is, what it likes to do —I can tell he is listening intently and taking in the information, storing it away for future reference. 


I have no idea where all of this will lead us.  We’re just taking it a step at a time —grateful for the good days, praying for the bad days and nights to become fewer and farther between, and so appreciative of all the support we receive from people around us —both in “real” life and our online extended family of friends.

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I’m avoiding writing about allergy results and nighttime wrestling matches and eating and… all of it.  I just want to bury my head in the sand for a while and pretend that everything is rosy and beautiful and serene.

But I can’t.  It isn’t.  Sure, there are moments of breathtaking brilliance and dazzling progress— even a spot or two of calm.  But there are chunks of days —large portions of the week—I feel like I’m living in a two-part episode of HOUSE. 

Except,  the second episode —the one where House and his fabulous but troubled team figure things out in the eleventh hour and the patient has a miraculous recovery —either hasn’t been written or produced.  Or maybe it’s the season finale —the nail-biter, the cliff-hanger.  What we’re left with is the unrelenting symptoms, the questions with no answers or the answers which beget more questions in different directions. 

Unfortunately, television shows seldom, if ever, show the unremitting reality of the lives of the patients’ families.  The daily tasks that have to be pushed aside ad nauseum, the trips to the gym that are sacrificed, the laundry and house cleaning which piles up, or the sleep which is forever lost.

They damn sure don’t show the cracks and strains on the relationships.  The angry words uttered out of sheer exhaustion and frustration over a situation you neither asked for nor can control.  The fear-driven anxiety which creates an atmosphere of such intensity that even sleep —when it comes— is no longer refreshing.  The utter despair— born of watching your innocent child suffer— that makes each partner feel lonely and isolated and creates doubt in a once solid foundation.

The foundation is still solid because we eliminated quitting on each otheras an option all those years ago.  No, truly, we consciously and deliberately did.  Some days it is the only thing that carries us through.  That and our vow to never go to bed angry or leave the house without a kiss and “I love you.”  To accomplish those things takes a shitload of time and energy and willingness to suck it up and compromise when all you want to do is rant and wail.  But it’s exactly that commitment which allows us to find our center again in the quiet moments.  Thank God for that.

But today? Today hasn’t been pretty. Triggered by unholy frustration and anxiety over Nik’s ever increasing pains, tensions have been running high.  Last night was, unquestionably, the absolute worst it’s ever been for Nik and it trickled over to the morning.   The bright light of day reveals more bruises on Nik’s sweet face and a few more to the collective spirit of his mama and daddy.

The good news?  There are no apparent food allergies.  The bad news?  There are no apparent food allergies.

The good news? Nik’s ileus seems to be resolved and his gastric issues settling down. The bad news?  Same.

The good news?  Nik’s eating like a champion lately!  The bad news?  The more he eats, the worse the episodes of face-pummeling, head-slamming pain seem to become —both in frequency and intensity.  Apparently not gastric in nature and apparently not allergy-driven either.  Yet, it seems that there is some obscure connection that no one can suss out just yet. 

It just feels like the more we get information the farther we are from answers.  And the more we may simply have to accept that there might not be a knowableanswer.  That latter bit doesn’t sit well with either Niksdad or me so we soldier on —each on our own front and sometimes together, always trying our best to maintain some semblance of normal. *sigh*

Now we have more avenues to explore and options to consider.  Metabolic? Mechanical?  Neurological?

Neurological avenues include medications to prevent migraines.  Those medications have significant side effects and potential long-term effects on the tremendous gains Nik has made.  We want to keep that as a last resort but it feels like it is closing in on us faster and faster.  We don’t know how much longer we can let Nik go on like this while we search for answers.

Metabolic causes?  Possibly.  If the episodes are driven by food “intolerance” then it becomes an issue of whether or not he has an enzyme issue which may contribute.  There are definitely signs of autonomic nervous system “overdrive” when these episodes happen.  Could there be some hormonal or other imbalance?  Who knows?  I think it’s definitely time to schedule an appointment with an endocrinologist.

Mechanical issues?  Signs of sinus and congestion issues that don’t seem to be virus, bacterial, or allergy-driven lead us to wonder if Nik may be somehow refluxing micro particles of food or if there’s something aberrant in his swallowing mechanics.  Previous swallow studies looked okay but they were all done long before Nik developed any real intentional, focused tongue movement.  I’ve already talked about this with Nik’s wonderful speech therapist, Miss M, and she is looking into scheduling a swallow study.

Meanwhile, spring is in the air and it carries a whisper of hope on the breeze.  I’ve got my blinders on and my butterfly net at the ready.

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push_me_pull_you_llamaIt’s been a seriously rough patch over here at Nik’s house — a very, very, very rough time here.  I don’t think that is understating things at all. 


We’ve been battling against the mysterious pains for so long now that they are starting to feel like a part of the family —kind of like bad in-laws that came to visit and ended up moving in.  Then we had the detour to the hospital for Nik’s ileus.  Now we’re trying to figure out whether his new found obsession with love of eating is compounding things with the possible advent of food allergies and maybe even celiac disease. 


We’ve gone from sleeping peacefully on most nights to not sleeping at all many most every night.  The bruises on Nik’s poor little face and legs (he kicks himself in the right shin with his left heel) are so bad that it makes me cry and makes my husband feel ill.  Just when one set starts to develop the soft blend of yellows, greens and purples, Nik gives himself some new ones to overlap in angry shades of blackish-purple.  They are all very distinct in size and shape; I can pretty much map out which knuckles hit where from the patterns on his face. 


Nik’s suddenly decided that going anywhere with his Daddy is only okay as long as I am there, too.  The mere idea of getting into the car without me sends rivers of tears coursing down Nik’s cheeks and he begins a plaintive chorus of “Ma-ma-ma-ma!” —complete with outstretched arms and clutching at my shirt when I lean in to kiss him goodbye.  My radar is pinging frantically as I try to figure out a possible cause for this new behavior.  His father and I know it is a communication but we are unable to figure out the underlying message so we simply muddle through.


It seems that just as things settle a bit and we feel a little easier —Bam! —the other shoe drops and we’re back in the fray.  I hesitate to write much these days because things change so quickly that I can’t keep up; I feel like I am writing fiction when I’m trying relate  all the good things that have just happened and Nik is in the midst of blackening his own eye as I write or we’ve had seven consecutive nights of no sleep.  I guess you could say I am experiencing a bit of cognitive dissonance in the process. 


Somehow, even in the midst of the worst days, there are tiny glimmers of hope shining through.


Nik’s desire and ability to eat have absolutely skyrocketed!  We were finally able to get his blood allergy testing done last Saturday and began giving Nik Allegra to help minimize any symptoms.  [side note: It’s not having any apparent impact on the accompanying symptoms.]  Since then, we’ve pretty much let Nik eat whatever he wants; within the span of one week, Nik’s gone from eating a mere five percent by mouth to inhaling consuming more than fifty percent of his daily nutrition orally. FIFTY PERCENT!


It’s not just the increase in quantity either; that alone would make us very happy.  No, Nik has simply decided: it’s time and he knows how to eat.  With a fork and spoon.  Finger foods.  Textures.  He’s teaching and challenging himself as he goes; we have not tried some of these things with him before and yet he has mastered them.  It still boggles my mind.


One of the nice things about Niksdad losing his job recently is that he is now home on weekends and we have opportunities for some wonderful family time.  We had brunch at my parent’s house on Sunday.  Nik decided that would be a great day to show off his eating prowess for his grandparents. 


 As I was setting up his booster seat —and apparently taking too long to suit him—Nik launched himself head first into one of the cushy arm chairs at the table (we were dining on my parents closed-in porch with their generously proportioned patio furniture).  Rather than try to wrangle him while I was fixing his booster, I simply handed him one of his cooked pancakes.  Really, I just assumed he would lick it and tear it into pieces that would end up either on the floor or the table to be cleaned up by the cat after we had gone.  You can imagine my surprise and utter delight when he tore off a piece and stuffed it directly into his mouth! 


I still get kind of choked up thinking about it; it’s been a long, hard journey to get here.


 I thought the “pancake incident” was the pinnacle; it was just the beginning.  During the course of the past few days —in spite of his horrible nocturnal (and now occasional day time) episodes of pain —Nik has surprised us by feeding himself without any assistance on more than one occasion.  It’s not perfect —and it’s certainly not neat —but the confidence he exhibits and the gusto with which he eats is nothing short of amazing.  And his palate seems to be limited only by the textures of the food; he’s actually managed to bite into a piece of dry cereal without prompting —or freaking out!


Believe me when I say this odd juxtaposition of tremendous breakthroughs coupled with the debilitating pain is keeping us all more than a little off balance.  Just when I think I can’t take anymore, something happens to slow the pace a bit. Or, as was the case last weekend, something so wonderful happens that it helps restore some perspective and provides a boost of energy needed to keep going.


My wonderful friends —and I do consider them friends though we’ve not (yet) met face to face —sent me the most perfectly timed and thoughtful gift.  I still cry when I re-read the note.  With this amazing gift I have started to allow myself to think about doing things or having things I wouldn’t otherwise allow myself to.; I’ve gotten so good at sacrificing my needs for my family’s needs.  I don’t mean that in a martyred, feel-sorry-for me sort of way.  It’s just what happens when you are the full time caregiver for a child with as many challenges as Nik has had in his short life.  My friends, you totally get it and I love you for that.  I am so grateful for the words of love and support and for the desire you had to reach out and remind me that we’re all in this together.


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