Posts Tagged ‘update’

You may have noticed that my writing has fallen off here. Quite a bit. Yeah, I know, I know. I don’t need to beat myself up about it, it’s my blog, blah, blah, blah.  The truth is, I haven’t been writing because I haven’t known how—or what—to share about the changes happening with my son. The words are jammed up inside my head, warring with the feelings inside my heart. I have discarded multiple drafts in an effort to find the words I need. I wrestle with what I want to say and how much I feel comfortable sharing. I still don’t have the answer; I am outside my comfort zone.

The irony is not lost on me.  Ever the consummate over-sharer— not afraid to tell my story to anyone who will listen, I have struggled with what to reveal. I’ve been grappling with finding my own truth and having to confront my own biases all while trying to find a new equilibrium. I have been forced to examine and to reframe my vision for the life I thought we would have.

The life I thought he would have.

It’s very much a work in progress as we continue to redefine, reshape and work our way through the morass of emotions and information.


When my son was born extremely prematurely, he was substantially smaller than his gestational age and had a number of identifiable health conditions in need of immediate treatment –either with medications or surgeries. Life—mine and his—became about surviving another day, making it through another crisis.

Over the course of his 209-day hospital stay, and even after he came home, the focus was on making it through; through another season, another health crisis—whatever curve-ball life threw our way.  At that point in time, there was no way to predict how the cards would fall and no way of knowing what his future might hold.  Many professionals told us there were still so few children like ours who were old enough to really have enough data to be able to predict with any degree of certainty. So, we simply hunkered down and did the best we knew how to do with the minimum of supports we had. All we knew was that we were not quite out of the woods but not quite fully in them.

“When we let go of hope fear wins.”

Through the years, there have been so many well-intentioned people –from health care professionals to total strangers—who confidently told us not to worry, our son would surely catch up. They patted our shoulders in sympathetic displays and told us stories of their cousin’s friend’s uncle’s daughter or their neighbor’s son who were “born early, too; they caught up by the time they were in elementary school.”

When you don’t know what you don’t know and the prospect of knowing certain things is, well, scary, it’s all too easy to want to believe the well-wishers and the miracle-sellers who predict your child’s miraculous growth and feats of development. So, you put on the blinders and tuck your chin down and simply soldier on—hoping for and working toward the best, whatever that turns out to be. In the absence of even a hint at the longer view, we simply clung to hope and pushed our worries aside, taking it a day at a time, an issue at a time.

When our son was ultimately diagnosed with PDD-NOS, it gave us something to hold on to and provided a new context through which to view everything else. As time progressed and some of the more emergent health issues began to resolve or remained stable, we hit a kind of developmental sweet-spot.  Our son began to make tremendous progress and was rapidly gaining many skills which had been so severely delayed. In a seemingly short time, he blossomed from the child who couldn’t even sit up or roll over and who relied on a tube for all his nutrition, to a child who could walk and run, climb and eat, and who had taught himself letters and was showing signs of spelling and early reading skills emerging.

With that swelling surge of hope, we began to really push for supports and look for signs of academic progress.  Some early literacy skills were emerging, multiple word sentences constructed on his speech device – there were glimpses; glimmers of dazzling progress.

Until there weren’t.

Which is where we have been for a while now. I’ve struggled to understand for myself and to try to articulate for others, the degree to which things have stagnated; there’s been some significant regression in some areas. It’s best summed up in a brief conversation I had with our developmental pediatrician this week.

ME: So, if I have three different evaluations, done by two different entities over a two-and-a-half year period – and not shared between each other—and they all show pretty much the same thing, including almost no change over time…

Can I pretty much assume that (1) my son doesn’t test well and the tests aren’t completely accurate and (2) that there’s probably *some* kernel of accuracy there which speaks to a larger issue? The one we think we are seeing?

DR: (wrinkling her nose in a sympathetic grimace, nods her head) Yeah, I would make that leap. Let’s make an appointment to talk about it and find a new way forward.

Hope is important; it is vital. But so is the ability to see beyond the heart’s desires, to peel back the thin veil over your fears and really look at what is in front of you. I’ve been in that process for a while now –none of this is new data; it’s just data my husband and I have finally been ready to see in a different light.  The process of getting to this point has been emotionally messy. It’s been painful to confront our own prejudices.

For years we have both felt like we were sort of straddling two different disability worlds and not feeling like we solidly belonged in either one. Was our inability to settle in, to identify with any one group, born of denial and shame? Why is it so much easier for me to say, publicly, that my child has “mild cerebral palsy and autism” yet I cannot bring myself to declare just as casually that he is intellectually disabled—mentally retarded?  (Yes, I know the term really isn’t used anymore; that’s my point—I’m calling myself out on my own biases and misperceptions.)

Different words will not change my beautiful, smart, funny, loving child. Nothing will.  And yet, the truth of those same words cuts me to the bone, laying bare the fears and grief I’ve held at bay for most of my son’s life; I am the one it changes. I am the one those words challenge.

I hope I am able to meet it with half the grace, determination and heart with which my son has lived his entire life.

Read Full Post »

So, um, yeah…about this Autism Awareness Month? I do have something to write about how my local Home Depot has completely embraced not only awareness in the month of April, but, well…I’ll tease you and tell you you’ll have to wait another day for that post. It’s worth the wait, I promise!

I was all set to post pictures and write pithy verbiage much sooner than this, but, well… Nik, apparently, had other ideas.  More specifically, his brain had other ideas. It began misfiring a few weeks ago with some breakthrough seizure activity. We upped his medication and thought we had it under control.  We were mistaken.

The past couple of weeks we’ve been not only monitoring Nik’s seizure activity, but increasing meds again and watching the seizures (or seizure-like activity) transform. We’ve had some unplanned phone calls and office visits with our fabulous neurologist and we have a plan in place.  It’s a short-term plan, but it’s a plan; it includes another ambulatory 24 hour electroencephalogram (EEG) in the immediate future. We need to know if we’re dealing with increased seizure activity or a severe movement disorder.  Think tics which occur at such a rapid and constant rate that they interfere with nearly all functioning and definitely with Nik’s safety and you’ll have an idea of what we’ve been dealing with.

Yesterday morning, we watched Nik lose consciousness for the first time in a long time. Then he napped for more than two hours. We’re pretty darn sure that wasn’t just a tic. So, we’re looking at options for short-term treatment until the EEG. Good times, my friends. Good times.

In the meantime, this week also threw us another curve ball in the form of Nik’s hearing; his hearing is getting worse and he now needs hearing aids.  Those will be fitted in just a couple of weeks.  That news was a bit of a kick in the gut at first, but I’m getting more used to the idea; I just hope Nik will cooperate with wearing them because we’re running out of options. The issue is not volume so much as loss at certain frequencies which fall right in the ranges necessary for speech comprehension.

This new knowledge about Nik’s hearing explains several things with which Nik has struggled during the school year— including attention, following directions, and reading skills. It’s difficult to know what is being asked of you if you can’t understand the words being said.  This change opens up a whole host of questions about what additional supports Nik needs that he is not currently receiving and whether the current placement is best for him. We’re left wondering how to deal with the significant vision impairment and hearing loss and autism and cerebral palsy in a way which allows Nik to play to his strengths versus remediation of weaknesses and in an environment which doesn’t become isolating.

We have no answers yet… just a lot of really good questions. I’m sure I’ll write more about this as it unfolds.

Our biggest goals and strongest desires for Nik are that he learns to read and to communicate more independently. I feel that if we can give him those skills, the rest will either come or he will find ways to compensate. Without those skills, his shot at independence is incredibly limited.

So, on the heels of a very emotionally difficult week (which included a scare about a broken iPad and a 2 hour trip to the nearest Apple store) —and because I may be just a smidgen of a Pollyanna, I am holding on tightly to this little nugget I shared on my Facebook page tonight:

OMG OMG OMG!!! I completely forgot to share this news:

Nik READ the word PRETZEL on a sign yesterday. I was like, “Sweetie, where did you see that word?” He pointed right to it on the sign. Then he promptly asked for ice cream. (We were at Rita’s so it wasn’t an odd request.)


Yin and Yang. Yin and Yang. The journey continues.

Read Full Post »


Image Courtesy of Church of the Banana (http://www.churchofthebanana.com)

It’s been a really crazy time around here.  I already whined about last week here.  Turns out the weekend did not bring good health to my little one.  Monday had us back at the pediatrician’s for what we suspected was —and turned out to be —an ear infection.  And bronchitis.  So, Nik’s back on antibiotics and nebulizers, more advil, cough meds and decongestants, and we’re canceling appointments right and left.

The one appointment we kept was with the developmental pediatrician.  Despite Nik’s less than stellar health, I think the doctor got a pretty good sense of how he is on a day-to-day basis.  This was our first time seeing this doctor professionally; I’ve known her for a couple of years since we served on one of the Governor’s councils together.  We had seen her partner twice before and just didn’t get the warm fuzzies we needed.  We’re glad we made the change.

Even more glad that we kept the appointment; the wait list for established patients is already in the six to seven month range.  Feh, what can I say?  They are the only game in town —in the state, actually.

We discussed Nik’s latest diagnosis —ADHD — and how it fits with his other issues, and how best to handle it right now.  Meds were discussed, educational options, increased speech therapy, behavioral supports at home, even more evaluations.  It runs the gamut.  Right now we’re sitting with the information we discussed today and will wait for the doctor’s written report and observations before we decide anything.  Once we’ve got some sense of options and what’s right for Nik and for our family, I’ll share more.

Today, I’m over at (Never) Too Many Cooks sharing my GF, allergy-friendly banana bread recipe.  It”s so easy even a, well, monkey could make it.  Swing on over for a taste!

Read Full Post »

Monday: Nik got a new diagnosis which we are still processing and will be discussing plans with the doctor if/when we see her on Tuesday.  Nik choked on a magnet and I performed the Heimlich on him.  Nik fell off the window sill and smacked his chin pretty hard.

Tuesday is a blur. 

Wednesday:  Nik was a tad “off” and felt like he might be running a fever.  He developed a slight cough and a bit of laryngitis.

Thursday: Nik woke with a fever, runny nose and cough.  Laryngitis was worse.  We took a trip to the pediatrician (not our regular, beloved Doctor Mary) to discover that Nik is sick.  Well, thank you very much for that stellar diagnosis.  Too soon to tell whether it’s flu or cold.  Or both.  But he did get his H1N1 vaccine since his fever wasn’t in evidence at the time.

More of the same fever and coughing ensued throughout the rest of the day and night.  Very little sleep was had by a stuffy, coughing cranky boy. Or his mama.

Today, Friday:  More of the same only wider swings of the pendulum. Higher highs for short spikes followed by long periods of near-normal temps.  Gotta love the wonders of Advil, Sudafed PE and Delsym.  The appetite, though?  Fuggedaboudit!  If it wasn’t slushy or thin liquid, Nik had no interest.

By dinner time, my boy was sporting oozing green and gunky eyes, too.  A call to the on-call doctor confirmed my fears: pink eye in both eyes! UGH.  Apparently, this was enough to push Nik over the edge, too.  He hit the wall hard and fast after dinner and just crumpled into a sobbing heap on the sofa at 6:30 —while I was at the pharmacy picking up his antibiotic eye drops.  His fever spiked again to 102.3F  Better than last night but still not encouraging.  The only saving grace (knock on wood!) is that his chest still sounds pretty good; all the goopyness is in his head.

Thank goodness for the weekend and a chance to lay low and, hopefully, regroup and recuperate.  Wishing you and yours a good weekend.

Read Full Post »

…is cooking over at (Never) Too Many Cooks!  I hope you’ll stop by for a bite.

Meanwhile, life has been gathering speed like a greased pig on a sliding board.  Yeah, you know, like those long spiral water slides with blind hairpin turns? Uh huh.  Some of it’s just the daily routine with Nik —all the appointments for all the therapies and such.  Some of it is definitely not routine.

This week, thus far, has included me having to use the Heimlich on Nik, Nik falling off a window sill and smacking his chin, and the addition of a new diagnosis for Nik.  And that was just Monday!

There are lots of posts brewing in my head but nothing seems to be making it onto the actual screen to share; sorry, some weeks are just like that I guess.  Thoughts of new diagnoses, new medications, dietary changes, behavior issues, remodeling part of the house (for Nik!), H1N1 precautions in the face of no available vaccines, language and communication hurdles, feeding issues and an upcoming visit to the developmental pediatrician.

Eventually it’ll all make its way to a post —or three or four.

For now, I’ll leave you with my thoughts on Murphy.  You know, the law guy?  He’s a sadist.  Just when Nik finally sleeps through the night AND sleeps late the next day, I allowed myself to get lulled into a false sense of security and stayed up way.too.late.  I figured, “Ooh, he’ll sleep late again; I can stay up past ONE A.M.!”  (Yes, color me idiotic; you know where this is going, right?)  Well, Nik did sleep through the night but he was up at 5:30 today.

Pardon me; I need to go make some more coffee.

Read Full Post »

Long story short:
Went to the pediatrician yesterday for a routine ear and weight check. I’ve never seen the place so crowded with so many sick children! I forced Nik to actually sit in one place while we waited and wouldn’t let him touch anything. (Um, yeah, hello Autism and ADHD…) He was a pretty good sport about it.

The good news: Nik’s ears looked great and he’s gained some more weight!

The bad news: His chest sounded junky and he needed a nebulizer treatment —something he hasn’t needed in nearly a year. Generally, he only needs those when he’s either super sick or we’re trying to hold illness at bay.  Our pediatrician usually tells us to trust our instincts and to listen to him from time to time if we’re not sure; she trusts us.  Not this time; this time she stood firm.

We came home with a strict schedule of neb treatments for the next week. We’ve all had our regular flu shots but Niksdad hasn’t yet gotten his H1N1 mist. Since he works with very young and medically fragile children he has to have it. We were on the fence about getting the shot for Nik but this clinches it for us.  His health history is too complex and his ability to fight major infection/illness is not as robust as the average child.

As a precaution, I canceled all of our appointments for the remainder of the week.  Looks like pj days and Mary Poppins (or Signing Time which is back in rotation lately) and, if I’m lucky, some extra snuggles.


ETA: I finished this post last night and then forgot to publish it. Oops!

However, you’ll be pleased to know Nik is doing well and we’ve had a lovely day together.  I’ve even gotten some snuggles!

Oh, and the boy likes his nebulizer waaaay too much.  See for yourself:

Read Full Post »

Untitled 0 00 32-21

The latest casualty in the explosion of new skills? All the decor on the walls in my family room.

I thought for sure this quilt was safe for a bit longer.  I was foolishly mistaken.

Untitled 0 00 35-28

Read Full Post »

DEAR CROSSING (note the feet!)

DEER CROSSING (note the crossing feet; it's a new skill!)

FUEL (First time ever that he ate the same thing as the adults!)

FUEL (First time ever that Nik ate the same thing as the adults!)

FRUIT STAND (This means CHEWING has been achieved! TODAY!)

FRUIT STAND (This means CHEWING has been achieved! TODAY!)

Slippery When Wet


Parade Route





NO TAILGATING ALLOWED ('cause Nik's *watching* you!)

NO TAILGATING ALLOWED ('cause Nik's *watching* you!)

Read Full Post »

EUREKA!  At last we have stumbled upon the answer to Nik’s current nocturnal pain.

Oddly enough, it’s the same thing that caused him pain a mere eight days ago: an ear infection.  As it turns out, the anitbiotic didn’t  knock out the infection and it came back.  With a vengeance.

Today, Nik spiked a fever of 102 F and lost his appetite entirely (!!!).  Truly, I’ve never seen a child who wanted to eat more than Nik does.  But today, all he could muster was a token bite or two before he simply started licking the flavor off of things and putting them back on the plate (or the floor of my car).  Such a sad little boy.

We’ve started another round of antibiotics and now added drops to both ears.


Hope you all have a joyful and safe holiday weekend!

Read Full Post »

Today was a perfect storm sort of day.  We would either have a day full of frights and horrors from beginning to end or we would have a day of unparalleled delights and successes. 

We recently had one of the former—a day in which Nik pushed the limits to breaking.  He figured out how to open the lock on the laundry door (using careful analytical skills and brute five-year-old force), purposely defecated on the family room floor (making nary a mess anywhere except in a very neat little spot), and pulled his feeding tube out multiple times in the span of just a couple of hours.

The last time he pulled the tube, he chewed on the silicone balloon until it burst into small bits—which could have choked him —and which rendered the tube unusable.  Did I mention we’ve gone through six tubes in as many weeks?  Yes, we’ve run through what should have been a six month supply already.  (Hey, we don’t do things in half-measure around here!)

A perfect storm was definitely brewing. 

Thankfully, today was the antithesis to that other day.  Nik woke —dry and still dressed in his big boy pants.  He refuses to wear a diaper or pull-up overnight and we decided it wasn’t a battle worth fighting.  He’s happy and we do a bit more laundry than we’d like some days, but so what?

My super trooper woke up hungry as a bear.  Seriously, the first thing he did when he popped up into a sitting position in his crib in the early morning hours?  Signed eat banana.  I kid you not.  So we trundled downstairs in our jammies and proceeded to eat Cheerios and bananas and —for the first time ever— a juicy, fresh peach.  Really, the peach was for me but he wanted to try it.  I never got it back.

Our schedule was jam-packed for the day: PT followed by a developmental play group then lunch and the long drive to the hospital to see both the ENT and the GI doctors to figure out what to do with his ears and his feeding tube.  If all went well with the ENT, there were plans to squeeze in a hearing test, too.  The piece de resistance: the drive home in rush hour traffic with time to spare for dinner and bed.

So many opportunities for disappointment, frustration or meltdowns of epic proportions for my little guy.  It felt like we were walking through an old mine field without any clue as to where the next booby trap might lay.

Nik sailed through an awesome PT session and a delightful play group where he did things he’s never done before— or things he once screamed and resisted doing— with an ease and a confidence that made everyone remark on how far he’s come and how much he’s developing.  It was, I confess, a morning which made me burst with pride.  More importantly, it was a morning which made Nik squeal with glee and sing with unfettered joy.

The trip to the hospital took longer than we thought so we weren’t quite prepared with enough food to stoke our little eating machine; he did have one hunger-induced meltdown late in the day as we waited for the cafeteria to open so we could get dinner before driving home in rush hour traffic.  Once Nik realized he was going to get to eat, he calmed pretty quickly —and ate like the rapidly growing boy that he is.

Our visit to the GI was really just to have her check the measurements of Nik’s stoma site to make sure we have the right size tube.  We’re going to try a different product and see if it doesn’t hold up to Nik’s abuse a bit better.  The new device has to be ordered so we’re stuck with the dreaded Mic-Key button for a bit longer.  Meanwhile though, they gave us a backup tube to take home —just in case!

It was sheer delight to be able to see the look on the doctor’s face when we told her Nik hasn’t had any formula since the end of April.  Her jaw dropped and then her whole face split into a grin.  “That is fantastic news! You’e worked so hard for this you must be so pleased!” she said in her typical understated fashion.

Then it was our turn for a collective jaw-drop.  After taking Nik’s height and weight, the nurse informed us that Nik’s grown just over half an inch  in the past six weeks.  (I’ll wait while that sinks in…)  That certainly explains why he’s got an insatiable appetite and why he’s not gained any weight.  I know he’ll be built like Niksdad —tall and lean— but I was sort of hoping he might wait a few more years  before he tries to catch up to him!

Our visit with the ENT went better than we expected.  Okay, other than the part where the audiology department forgot to check us in and we waited too long for a hearing test.  The bottom line is that Nik’s hearing is in the normal range, there’s no sign of infection or other cause for alarm and the ENT is going to investigate the mysterious mastoid fluid build up.  He wants to see Nik in three months and may order a CT scan then.  He also asked us to send him copies of the MRI’s so he can review them as a series.

Basically, as long as Nik’s hearing is okay and there’s no sign of infection, the approach is to wait and watch.  The alternative would be a mastoidectomy which none of us is prepared for.  We are, however, probably looking at a new set of myringotomy tubes this winter; this will make Nik’s third set. *sigh*

By the time we finished with the back and forth of seeing the ENT then getting the hearing test and seeing the ENT again to discuss the results, Nik was pretty tired.  But not too tired to eat his way through the hospital cafeteria once it opened for dinner at 5:00 p.m.

In addition to his old standby, peanut butter sandwich, Nik scarfed down a banana, some cantaloupe, some pineapple and several bites of my baby lima beans.  My God, the boy can put it away!

By all rights, Nik was fully entitled to a cranky ride home and a fussy time before bed.  Nope.  He sang and chattered and played with his LeapPad book and then willingly put on his pajamas and let us brush his teeth.  He was asleep before we even closed the door to his room.

Serendipity?  Perfect Storm?  Whatever it is, I’ll take a few more like this, please!

Read Full Post »

Older Posts »