Driven to Distraction

I've been trying to write a post, while I'm off, for the last 5 days.  I've started two really good ideas, one meh idea and this one... and I keep getting distracted.  Not by one thing in particular, but derailed by all the things.  I have a bunny in my backyard.  I hate the way the racoons keep digging up my garden.  The kids are rioting.  There is a fly in here.  The living room is a mess.  Phone?  Whar?

It's raining!
It's sunny!
It's hot! 
Bunneh!

Ugh.

I guess on paper my reasons are as good as any:  full time job, that job is hard, I have three kids, twins, a kid with special needs, I work shift work, I never sleep, I'm always tired.  The reality is a lot simpler: I'm not doing a lot right now as I am off.  OFF, I tells ya!

See, this is what people are supposed do when they are at home and not working.  They rest.  They catch up on hobbies and connect with friends.  They read and watch TV.  You can do things with the kids, whether formally organized or not, or just hang out.  Leave it to me to assume that this is some new pathology, most likely brought on by caffeine withdrawal.  But, it's not.  It's more likely that this is what happens when I don't have things looming over my head.  It's been a long time since that has occurred.

It's been refreshing frankly (and I seem to have gotten just as much done).  I'm not stressed out for a change, which is good.  In between random observations, life has gone on as it always does.

My first day off (after my last night shift) is traditionally my "silly day" as I don't sleep until the kids go down for their afternoon nap.  Usually I pick this day for all of us to go shopping, which generally gives my husband an eye twitch that lasts him a good few days.  This past week it fell on Friday, which is a great day to get groceries before the store is mobbed for the rest of the weekend.  It's also a good day to do any errands that you want to do.  This week, on a whim, I actually wanted to visit a bookstore.  That may sound like an innocuous request, but I usually don't have time to go.  I barely have time to read;  when I do,  I order books online or have Sean pick them up for me. This time, I had worked!  I had been paid! By gawd I was going into a bookstore!

Ever seen The Sound of Music?  As I walked through the front door and the first vapours of "book smell" mingled with burnt coffee hit me, I was Julie Andrews.

The hills are aliiiive, with the sounds of rea-ding...

Dramatic?  Yes.  But totally on point.

I miss puttering through books like this... I always end up buying way too much; at least I recognize that I'm still a book addict and that I can't own all of them.  As we went to the children's section and Zoe began to act out, I realized something else:

We have started the "terrible twos".
With two of them.
I have two children in the terrible twos.

We were busy feeling for looking for Lego Mini-figs for Quinn, when she started thrashing in the stroller and screaming "Help me MAMA!  HELP MEEEE!" while leaning as far out of the stroller as her harness would allow.  I could feel every eye in the store on us as I casually addressed my daughters pleas for release.  Without looking, I could also tell that husband's eye twitch was worse.  His voice was a little more taut than usual when he expressed how glad he was for me to be there "this time" as other times people have looked at him like he was a kidnapper.

*facepalm*

We continued on with our mission.  Right on cue, Wyatt started up, leaning out of the stroller the other way (possibly for balance).  He howled whilst simultaneously chewing on his finger to indicate to us that his incoming tooth was the source of his discomfort.  With now two children kicking and wailing, one of which needing Tylenol, we had to go. 

As I loaded our finds on the counter, the cashier asked "Going on a trip"?

*blink*

Maybe it was my two wailing kids in the background but for the life of me I couldn't figure out what he was saying.  Trip?  Where? With this lot? Was he mad?  Had he any idea what was involved in such a thing? Did he not know?

After an awkward pause, during which I stared at him and wrestled with the word shapes he had presented me, I dropped my eyes and answered "no" very quietly.

"Awahh" he answered (or something similar) and having paid for my new treasure, we left the store, the kids still freaking out.  They were fine once they were buckled into the Whaaambulance and we were able to complete our shopping with a minimal amount of shouting.

The raging.  The throwing of things.  The screaming.  We went to friends' house for dinner on Saturday;  they have two lovely, well trained (and child accustomed) Vizslas.  Sadly, two out of my three children would start screaming and shaking--seemingly with rage--every time one of the dogs approached for a friendly lick or sniff.  The twins would alternate ear piercing screams at random intervals.  It wasn't out of fear after the first few encounters; as time went on it just became their stock answer to a doggie approach.  It's no wonder the wine evaporated at an alarming rate.   There is hope for everybody tho' as Wyatt reached out to pet one of the pups;  however, the sniff he got in response set off another round of Baby Hulking.  Another day, I guess...

There are some side benefits to this stage.  Wyatt is now officially in the 95th percentile for weight. You can actually see by the increase in muscle mass since his surgery.  His weight will drop dramatically as he learns to walk;  that isn't that far in the future I don't think, as he managed to slowly cruise most of the length of the couch yesterday.  Our pediatrician was so impressed by both of them last week that she didn't want to see Zoe for 6 months and Wyatt for three.  He has a fabulous pincer grasp and point... even if he is only using it to turn the TV/VCR/DVD off.  And on.  And off... 

Zoe, our youngest and most loud precious, seems to require some sort of gymnastics training or her own crime-fighting circuit.  I can feel the hairs turn grey now as I remove her from the back of the couch, the bookcases, the chairs.  She is a thrill-seeker with a temper.  She also loves to play with both of her brothers, which makes my heart smile.  She is delighted to play "blocks" (Duplo) with Quinn...and anything else she can think of, but she will also take time to sit on the floor and roll a ball to her twin (despite fighting over everything else).  They rolled a ball back and forth--with very little intervention from us--one night for over 20 minutes.  She also makes sure that he gets his snack or drink first.  "Here Why-ATT", she'll say, handing him "Why-ATT's nana" (banana) or "Why-ATT's cookie".  Although I love all my kids equally, this one is my girl.  My colleagues at work are in agreement that she is Karma's way of repaying me for, well, me, but as she stops mid-gallop to bed at night and whirls around to say "Goodnight mama" and give me a kiss (and honk my nose), I think I'll let them believe what ever they like.

Distracted.  I am soooo distracted.  How can I not be?  There is always so much to process.  There is always so much to learn and experience.  Quinn is finishing Grade 1 this week.  We have to figure out his camp schedule and discuss what we can do to socialize the twins more. After now, I won't surface and see my family except in brief flashes until Sunday morning.  I will write that post on Abilism and continue my Brief History... series at some point.  Until then, as you can well imagine, Te...

BUNNEH!

Normal

It's been well over a month since Wyatt's surgery.  I am starting to feel like my self again only now, after two sun-filled weekends at home.  According to the experts, this is a 'normal' reaction after an extended period of stress, after a perceived threat (in this case, to a loved one).  Despite my profession, I have to keep reminding myself that a low period after a time of intense stress is to be expected.   It's a natural reaction, especially when you consider that my [often precarious] work-life balance was tipped dramatically in one direction then quickly pushed back again. After the surgery, I was going along at a pretty good pace too, or so I thought... until I found myself in an empty room, unsure what to do, straining to hear anything over the silence and my own breathing.  The sudden absence of a presence, one that had haunted us for over two years, left a void that I had to fill.  Over time I did that.  I've made it my own.  After spending time with my family, after spending time in the garden, I feel better.  I feel more like myself; our family life has cautiously settled back into its own rhythm.  Wyatt's progress has been a big part of that:  his rapid healing, his adaptation, his overcoming of things like sore muscles and wired ribs that feel weird has helped us all maintain some clarity as we assume our 'new normal'.  Our post surgical normal.  Our brave new world.

The idea of "normal" seems to have became a theme in the time since my last post.  I swear, I'm running across examples and discussions about this all over the place.  This concept of normal vs broken seems to be a real thing in the DS community (if you can even call it a community any more).  When you think about it, it's no wonder really; after thousands of years of looking at those with Down syndrome and those with intellectual disabilities as "less than" or "broken", modern society is struggling to give these ideas up.  These concepts are familiar and comforting, like an old blanket.  However, it is time to evolve and "put away childish things", as it were.  People with intellectual disabilities are here, have value and worth.  Different.  Equal.  Not separate.

I will agree that the extra chromosome gives a lot of unknowns, a lot of variables.  My first, "typical" child was a "What to Expect..." baby.  Every month there would be a new list of goals, of things he "should be" doing, things he "might be" doing and things that would be coming up soon. Spoiler:  he didn't follow the lists.  Quinn was barely starting to walk at 18 months, but had the vocabulary of a child much older.  He didn't play with toys conventionally either, preferring to figure out how they worked and then make some kind of art statement out of them.  

What we've realized with Wyatt is that development is non-linear.  It is fluid.  He does not progress along a predictable path towards a readily recognizable outcome.  It may take him months to finally realize that tapping his spread palm to his chin means "mother", but in a short period of time can polish off a few skills that took his typical siblings months to reconcile. Instead of sitting still while he recovered from open heart surgery as he could no longer crawl, he instead adapted and learned to "scoot'.  Holy cow is that kid fast.

Even amongst children with DS, there are no set rules.  Not so long ago, pediatricians everywhere adopted a series of Down syndrome growth charts, which for chart/graph minded people like pediatricians, seemed to be a good thing.  It helped everyone to get over the idea that kids with DS were "poorly" due to their (generally) smaller stature when compared to their more typical peers.  These charts are now falling by the way side as not every kid, especially the ones with DS, adheres to a regular growth pattern.  None of my kids have, that's for sure.  Growth charts are a touchy subject with me anyway as I am the Mom of two preemies.  I've found myself shifting from foot to foot with irritation at a number of appointments, as I watch my two obviously thriving children not "measuring up" to what some chart has to say about "healthy growth".

Wyatt, even with his (previously) busted heart, is not broken or deficient.  He does look slightly different than other children I guess.  Most people that see him or his pictures want to nibble him, so I can only assume that he's a pretty good looking kid (which, as his mother I suspected all along).  None of my three look exactly the same...  Quinn is currently in a bag-of-antlers stage, with stunning blue eyes that make you want to fall in and drown. He's also in that stage where some of his teeth are loose, some are sticking out at odd angles and the new ones look like they belong to a horse.  Zoe has my olive complexion.  She has straight hair--which is a sharp contrast to both her brothers and their blonde curls--and soft brown eyes that can go from molten chocolate to granite in seconds. She can also do bridged lateral push ups between the couch and the coffee table.  Genetics are a wonderful thing.  However, due to some physiological differences, Wyatt is considered to have a "visual disability".  It is "visual", as you can see it and therefore--if you talk to a large (ignorant) percentage of the population--get to pass judgement instantly on his abilities by just looking at him.  A casual glance at his twin would not reveal that she has a lisp or delays in her speech or hand tremors that often occur with prematurity.  However, Wyatt, due to the shape of his eyes and his button nose, perhaps the way he holds his mouth or curls his toes, is immediately "recognizable".

There are no delusions about the future.  Wyatt may develop some behavioral problems, that is true.  Having been in Mental Health for years, the place where people with "outbursts" of all shapes and sizes end up, I've had my fair share of experience in this area.  I also know how many of these come about and how easily many instances can be both exacerbated or prevented.  He may not face this, either.  He may speak 'clearly' by conventional standards, or not.  Perhaps he will not speak at all.  Regardless, he will be able to communicate his wants, needs and desires quite well.  You will need to possess the willingness to listen.  It doesn't take much really, other than an attention span and patience that lasts more than a beat or two.  I also won't know until they are grown up whether any of them will have schizophrenia (as I have two cousins with this), will suffer from depression, have diabetes or cancer.  There are variables with all my kids, just like your genetic code will dictate whether your kids will develop the issues that occur in your family. 

I guess, in my mind, that's what really set the "This is Down syndrome" list of illnesses and disorders away for good.  Yes, my kid does go to a lot of doctors.  So do I, when you think about it... and I consider myself to be a reasonably healthy person.  To put it another way, here is a list of things that can "go wrong" if you happen to have Trisomy 21.  Here's a list of things that can "go wrong" if you are human:

It's a big list...

Homo sapiens are a diverse bunch, full of colours, shapes, sizes and bodies that ultimately break down, no matter how much we exercise or how organic our produce is.  Or how many chromosomes we may or may not have.  We are all broken, if that is the criteria you use to determine worth.

I think the sooner that we as a species, realize that all of us have equal value, the sooner we will stop hearing stories like this one, where a hotel in Spain refused to allow children with Down syndrome as they would be "disruptive".  We'll stop perpetuating myths that our kids with intellectual disabilities have an unholy attraction to water or wandering;  kids without DS can drown and bolt without warning just as easily.  I know this, I was that kid.  I would routinely wander off, especially in public.  My mother can tell you many stories about how I would hide in clothing racks or just get lost, period.  My mini-me daughter is shaping up to be the same too, which is going to mean a lot more grey hair in the future (assuming it doesn't just give up and fall out).  Everybody wanders and gets confused by their surroundings from time to time.  If you don't believe me, watch a security camera in a hospital for a length of time.  Trust me, I've seen some things...

Normal, as they say, is simply a setting on the washing machine.  When it comes to people, there really is no such thing.  We're all bags of quirks and "illness" and here for a very limited time.  That includes our members with developmental delays and intellectual disabilities.  There is no "less than".  There is no broken.

There is life:  messy, glorious and mostly mercurial.

The Cat in the Corner

With each moment, we draw closer to Wyatt's big day.  We use terms like "repair" and "procedure" and all sorts of sterile clinical things... but it doesn't change the fact that he is going to have open heart surgery.  In a handful of weeks, the day--that we have known about since his in-utero AVSD diagnosis at 30 weeks--will be here.  There is a wealth of emotion that I am trying to process; I would be lying if I said I was looking forward to this.   I haven't been myself, my sleep is interrupted (even more than usual) and I have been unable to write more than a few words.  There is no sense of impending doom, I don't want you to get that impression.  However, there is a tension in the room, a watchful waiting.  I can feel it there, sitting in the corner... with it's paws crossed and amber eyes gazing expectantly.  Only the barest twitch of tail announces it's existence, but it is there. Waiting.  Whether to pounce or settle to slumber, I cannot be sure.  But, it waits.  Patiently.

I have been going about my life in defiance of this new visitor.  Routine is maintained.  Groceries are bought, homework is done. Alarms are set, alarms go off.  The kids themselves are in good spirits and aside from another bug that has invaded our happy home (codename:  "Cough Until You Puke"), it is business as usual with them too.  They continue to grow and develop and surprise me at every opportunity.  Although I haven't given an update since before Wyatt and Zoe's birthday, all has been well with my three little minions.

Quinn continues to exhibit an intelligence that is very much beyond his years.  His easy grasp of complex concepts is only outdone by his sense of humour.  He was hit particularly hard this week by our newest virus, but has rallied just in time for March break.  His understanding of anatomy and physiology continues to astound me as he continues to ask questions that have me stopping to think.   Earlier this week, one of the fans on Down Syndrome Uprising posted a link to a nursing based page that had posted what they had supposed was an anatomical diagram of DS (which was more of a horrible caricature with misleading information).  As an added bonus, there was a caption encouraging 'shares' to bring awareness to "the devastating effects of Down's Syndrome" (spelled incorrectly).  The page itself smacks of "like farming", but the image was awful and many wrote to protest, including many that said they were nurses.  It was all a bit disheartening after a long day of actually being an RN and I was unaware that my eldest had seen the image until a voice spoke at my elbow.

"What is that, Mom?"

"It's an old diagram of Down syndrome" I told him, flatly.

"Really? That doesn't look like Wyatt.  What is all that stuff [in the middle]?"

I started to explain that the picture was trying to point out some of the things that could occur with Down syndrome and halfway through, he interrupted me;

"Why does it all look like that?  Why does the face look like that?"

I tried to explain that they tried to put a whole bunch of "symptoms" on one diagram.  He wasn't buying it.  His brow furrowed and he stopped me short with the following:

"But Wyatt only needs his heart fixed and then he will be better. That is not right. They should not say all that.  It's not right."

I gave him a huge hug as my eyes welled up.  My six year old can grasp in a few seconds what it is taking adults decades to get their head around.  Health teaching needs to be fair and balanced, not angled to be as grotesque as possible (or even worse, completely insubstantial).  That starts with teaching health practitioners correctly in the first place. He gets it and he's only six.  I can only imagine what else he is going to understand in the future. 

We try to find little things for us to do together, which doesn't always work out with our schedules.  Quinn and I have a project coming up that will hopefully sprout seedlings for our garden this year.  I can't tell you how much I am looking forward to this.  We're recycling Coke bottles for self watering planters, so it should be a fun little science experiment.  Botany, physics and ecology all in one lesson, what more could you ask for?  If all goes well, we'll get to (literally) eat the fruits of our labour later this summer.

Zoe just keeps getting funnier.  One of her latest endeavors is learning the 'spit take'.  She would take a long haul on her juice cup and then mist it out in a giant raspberry and laugh hysterically.  I thought it was funny the first time, until Wyatt started to imitate her a moment later.  They went back and forth in a flurry of 'thhhhppppttttthhh!' as they, the floor and everything around them slowly became soaked with juice.   It's happened a few times since then and I have to stop her as she starts up, or it becomes a spit take-one-upmanship contest that only ends when the ammo runs out.  She'll then declare the whole thing "AWEthome!" and move on to her next demolition project activity.

Wyatt's development continues to move forward in leaps and bounds.  He is wanting to stand at every convenience;  although he can't quite get there from a full sit, he can stand up from sitting on a stool and when placed in a standing position is quite content to stay there.  He loves this new view on the world a lot, actually.  If I'm on the floor he will crawl over and half crawl up my arm.  I'll help him up and he will causally look around and survey his kingdom.  More often than not however, he will lean in and put his head on my shoulder.  He'll often sigh in contentment and snuggle in even tighter, sharing this new thing with me, his feet firmly planted on the ground.

He had a Speech and Language assessment a week or two ago where we set have a whole new list of language goals.  He continues to sign and say "dada" and "dah-dee!" but Mama is still a no go (except for that one time...).  That is, until the speech therapist pointed out to me that he says "baba!" a lot and asked about his ears.  It's possible, if there is fluid in there (remember all that a few weeks ago?) that he cannot hear the "M" sound properly and is repeating it as "B".   If you watch yourself say both in the mirror, there really isn't much difference.  He has been saying Mama, in fact it's his most common word.  I just wasn't really hearing him.  He's still using his own sign for "parent" and he uses it for both of us.  Instead of touching his thumb and spread palm to his forehead (where he signs "Daddy"), he taps it on the top of his head.  We're continuing to work on "more" and "thank you" and a few more signs.  He can say "tah-doo!" when you hand him things, so he is already giving us his version of thanks.  They were impressed with his sudden leap in activity;  we just can't discount the effect that his VSD closing has had on his overall ability.

It may seem to the uninitiated that Wyatt cannot communicate well, as his words/signs are limited compared to say, his chatty twin.  I want to banish this notion completely as no one that meets him seems to have an issue understanding him.  The other day for example, he did something that was pretty remarkable.  We have a small dresser in the living room that holds things like wipes and diapers and movies and things.  Zoe has discovered the bottom two drawers and routinely likes to pick up toys/random objects and hide them in there.  Lately, Wyatt has emulated her, which has resulted in some pinched fingers here and there.  We were all in the living room and I turned around at the sound of Wyatt crying loudly;  he was holding up his hand for me to see.  I asked "What happened?" and still crying, reached behind him, placed his hand on the drawer, snatched it away like it was hot and cried louder.  He had perfectly mimed getting his hand caught in the drawer.  A quick assessment and a few kisses later, all was forgotten.  We've both learned a valuable lesson with this:  he, not to play with the drawer and I have been made more aware of just how good his communication really is.  His twin sister, who can talk, has done the same thing and cried so hysterically that she could not be understood for a few moments (and needed much calming down afterwards).  He on the other hand, quickly and efficiently conveyed what the problem was and went right back to playing after being comforted and validated.  Sha-ZAM!  That's m'boy.

It seems that Zoe is the latest one hit by Cough Until You Puke.  I was awoken groggily a few times by the sound of her coughing during the night, but it was Wyatt who brought it to our attention.  After a long hack session about 4am, I heard a telltale gag and immediately Wyatt started to cry.  I stumbled into their room to find a bewildered Zoe in a mess in her crib with Wyatt kneeling up against the rail of his crib, obviously distraught at the state of his sister.  I flicked the light on and started about the business of stripping her bed while Sean popped her in the tub.  Wyatt was pretty patient for a few minutes, as he sat with one eye open, but had obviously had enough as he eventually reached as far as he could to snap the light off before laying down again.  I laughed and went across the room to turn the lamp on, to which he groaned and sat up again, grumpily.  His language could not have been clearer if he had actually said "What the hell, guys?  I'm TIRED!" 

I guess it is time to finally drop his crib down as he can now open the door.  We are used to leaving their door open a crack, to help with air circulation and whatnot.  Sean got up very early one morning to use the washroom and in walking out of our room, noticed the door of their room open.  He thought "What the...?" and in walking towards to investigate, a little head popped up over the edge of the crib and squealed good morning.  We figure Wyatt was able to grasp the edge of the door and flung it wide, in the hopes of seeing one of us.  We started shutting the door at naptime that day, only to hear what sounded like the doorknob rattling shortly thereafter.  He is unable to get out or fall out of his crib still, but to be safe, I think it has to drop down a level.  That will be a big milestone for us, as he is definitely no longer a baby, instead he is very much a little boy.


Life goes forward, regardless of things like surgery dates.  Although April 3rd crouches in the corner over there, I am aware of it and regard it warily in my peripheral vision.  My concerns are not really based on the procedure itself, but rather all the planning and preparation involved and other intangible Mommy-like things.  It is comforting to know however, that when the fear starts to grow and loom in the shadows, I have many things that bring me comfort and stop it in its tracks.  My kids.  My goofy husband.  My friends, both online and IRL.  My colleagues (of all stripes) who banded together to let me know that they were supporting us with our upcoming journey and the individual ones that have approached me since to offer private words of encouragement.  With all of this I may just muster the courage to look it directly, maybe even extend a finger or two.  Maybe, if I remain still enough, a well placed pst-pst-pst can coax it out into the light.

  Don't forget to vote for Down Wit Dat - The Group as Favorite Special Needs Online Community!  

Every Little Thing

As those of you that are on Facebook with me/follow my Facebook page know, Wednesday was a bit of a surprise.  I came home from my last night shift on Tuesday morning to a phone call from Sick Kids hospital, asking to move the appointment for Wyatt's sedated echocardiogram/ECG up.  Way up.  Originally the appointment was for April 3rd;  we had set it up a week ago and I just submitted the paperwork to ensure that I had that day off.

Nope.

Instead, it was to be the next day.  According to Sick Kids, Wyatt's regular cardiologist (the one with the fish) was a little annoyed that the appointment was to be so far into the future.  It was also one of those situations where it was either going to have to be Wednesday or the following one, where I was working nights, so the decision wasn't much of a stretch.  However, we're still not fans of the "how about tomorrow?" appointment, because the last time that happened, Zoe ended up having surgery.  Going to downtown Toronto isn't all that easy for us these days either.  We have three kids, a giant-ass van that does not like underground parking much and a drive that will range from an hour to three hours, depending on traffic.  Sean and I hummed and hawed over it, considering our logistics.  However, it was a needed thing, so to my way of thinking, it was best to seize the moment and get it over, like ripping off a band-aid.

We went for the band-aid, trafficky, potentially van scraping option.  A dear friend kindly offered to look after the Zoester and Quinn for the day, which eased things a bit.  The night before, we hatched our plan:  we had to be there for 8:45, so we had to drop the kids off between 6:45 and 7, hit the highway and pray that the rush hour traffic gods were kind.

Not surprisingly, they weren't.  At 8:30 we were well ensconced on the Gardiner "Expressway" and had no idea how much longer we were going to need to get to a hospital that was 10 minutes from that spot.  Despite the gorgeous view of the rising sun filtered by the steam devils spiraling up off Lake Ontario (with a few silhouetted leafless trees here and there), I wasn't happy.  I called ahead and cooly slid into the registration desk around 9:25.  I was in much better shape than our last Sick Kids appointment a year ago;  Sean scored some decent parking across the street for the Whaaambulance and joined me a few minutes later. When he caught up with us, Wyatt and I were firmly entrenched in a game of "socks", where he pulls off one of them (he had already lost his shoes in the van), laughs, wiggles his toes and waves the sock around, daring me to grab it.  Which I always do and put it back on his foot, because that's what Mommies do.  It's a lot of fun and his giggles were infectious. 

We were eventually called in and Wyatt was weighed, measured and dressed in a little flannel gown.  He was hooked up briefly to get a set of vital signs and you could hear the warning-panic in the nurse's voice as she called out to her colleague "He's SATing at 94!"  I calmly explained to her that this is normal (for him), no, he doesn't require oxygen and he has an AVSD;  eventually she settled down and went about her morning.  Wyatt checked out his new digs while I answered all the pre-sedation questions.  He burbled happily and was very interested in all the grown up goings-on around him. 

My kids are used to getting oral liquid meds, especially after our last round of colds/flus that rampaged through our house in the late fall and early winter.  A nurse handed me an almost full 10 cc syringe and Wyatt opened his mouth expectantly.  They asked me if I needed to wrap him (to restrain him) and I just looked at them, astonished.  This had never occurred to me, even though I restrain people for a living.  I can count on one hand the amount of times I've had to hold his head for medication and then after the first taste, he stops protesting and finishes the dose.  I waved their offer away and went to give it to him.  He can only take a little at a time to make sure that he swallows it, so this was going to take a few moments.  After the first little squirt went in he naturally made a face (chloral hydrate tastes awful, I put in in OJ for my patients), but opened his mouth again trustingly for another round.  After the second time, he turned his head away and I was in the middle of coaxing him back for more when the one nurse suddenly grabbed his face while the other grabbed his hands.  

Naturally, he fought back, but I managed to get the needed amount in there.  He's cutting three teeth on the one side of his face, so I'm sure that was throbbing by the time the one nurse let go.  I was shocked to be honest...  As I've said, I do this all the time with adults but I am telling you now that I give even our most ill of patients more time to make up their mind than that.  I understand things were behind schedule and that lots of kids probably need the cat-wrap method of medication administration, but mine isn't one of them.  Not surprisingly, he was completely pissed off, hurt, was not compliant with anything else and he let everyone present know exactly how incensed he was for a very, very long time.  The nurses disappeared in a swirl of curtain and we were left with our screaming little boy.  We walked, we jiggled, we did the parent dance.  I would sing to him quietly and his crying would taper off a bit, especially as the medication started to kick in, but he would still screech at random intervals.  He became very selective with his song choices as he would react poorly to certain songs and be super happy at others.  His favourite seemed to be Twinkle Twinkle Little Star.  Even the ABC's or Baa Baa Black Sheep was not good enough,  it had had to be Twinkle Twinkle... (as a side note, this is Zoe's favourite song).   He would request it, throwing his hands up in the air to mimic the "up above..." part and throw his head back and half laugh/half scream and almost catapult himself out of my arms.  He did this over and over and over again as I sang in my early morning "I need coffee" cracking middle aged voice.  You could almost hear him say: "Twinkle, Twinkle, dammit!  SING IT, Mama!  WOOOOO!"  As it turns out, my wee son is an angry drunk. 

The dose he got would have knocked out quite a few adults, but he fought the sedation for as long as he could.  His eyes would close, his breathing would change and I would think "he's out..." and he would suddenly cry out and try and sit up and yell at us some more, almost as if to say "...AND ANOTHER THING!..." He would swing out at us blindly and generally let us know that we were all a bunch of jerks (and he wasn't going to stand for any of it).  Four times I watched him do this... the third time I laid him on the bed and held him with my hand at the back of his head, stroking his forehead and singing softly to him.  The tech that was to do the echo wheeled in the machine during all of this and appeared to be quite put out that he wasn't asleep yet and should he get more sedation?  I explained (over the howling) that he was pretty annoyed and that he had quite a lot of sedation already , but she didn't seem to get it and pouted off.  The fourth and final time, a full forty five minutes after we gave him his meds, Wyatt was finally down for the count.  I exhaled, exited the curtain with Sean and told the nurses that we would be back in another 45 minutes, the length of time the tech told me the test would take.

We went downstairs, had breakfast, doused my (now sore) voice with some tea and relaxed for a few minutes.  We were punctual and a little concerned to see the curtain still around Wyatt's crib when we returned.  Ten more minutes, we were told, as the tech waved us away.  We went outside to the waiting room and came back ten minutes later to be told it would be yet another few minutes.  I chose to sit at the bedside, which turned out to be the right decision as it was apparent that Wy was starting to wake up.  The tech said she was finished, we wiped off the goo and started about the business of getting him sorted out.  She whipped back in a moment later and stated she needed two more angles;  the nurse and I rolled our eyes at each other as Wyatt was now very much awake.  He was given a small bottle of baby juice (which he never has;  we give him diluted regular juice) and not surprisingly, he and his post-sedation cotton mouth LOVED IT.  The look on his stoned little face said it all after the first sip:  This was the best freakin' juice EVER!  It also kept his hands busy for the 5 minutes that was needed to get the last two shots.  She shut off the machine, went to speak to the Dr., and we set about getting our still drunk, but now happy, boy cleaned up and dressed.  He was sticking out his tongue and laughing at people, not to mention trying to blow raspberries (which wasn't that successful, yet still hilarious).  We were having a great time when the tech came back and insisted that there were "just two more pictures" that the radiologist wanted.  The nurse and I exchanged looks again as I unbuttoned Wyatt's shirt and fed him more juice.  I let the tech know that this was the last time and if the doctor wanted any more views, he could come get them himself.  Again, she pouted off, but I was beyond caring.  I wasn't a fan of her "make it stop moving" attitude towards my son and for the love of all that is holy, I could have done that echo faster.

Still giggly-wobbly and working on his juice, Wyatt went back into the stroller and we set him on a 45 degree angle.  It was now almost noon, our appointment with the cardiologist was supposed to be for 10:30 and for some reason, the tech didn't have time to do a simple 12 lead ECG. (?!)  We went over to the cardiac clinic and hung out in the waiting room for a bit.  We ended up being called in prematurely and had to go back to the waiting room to wait for our ECG, but finally, around 12:30, we got to see the Residents. 

I don't make it a point of outing what I do and who I am, but there are occasions that definitely call for it.  An assessment of your son by a second year Resident can be one of those times.  She was quite nice, but a bit flippant and hadn't quite hit her health teaching/talking to people stride yet.  (Or, maybe I was tired and hypersensitive to her body language... or both.)  About the point she started talking very slooowly I let a few bits of jargon slip.  When she asked why he had never landed in the ER, I told her flat out I was an RN.  The conversation changed dramatically after that.  I swear she even sat straighter in her chair.  That completed, her and her colleague attempted to do a physical assessment on Wyatt, who after his morning ordeal, would have none of it.  He playfully dodged all their attempts at distracting him with various medical equipment and wouldn't allow them to do a damn thing.  At one point he expertly blocked the stethoscope with one hand and yanked it off her head with the other.  I was thoroughly enjoying this until he started to get upset when one tried to hold his arms, at which time I went over, let him grab my fingers and we babbled to each other quietly while she attempted to auscultate the backwash of blood through the holes in my son's tiny heart.

The mood changed again a few minutes later with the arrival of the cardiologist.  With an expert touch, he said hello to Wyatt, held his hand, touched my son's chest and got 'permission' to use the stethescope.  He was so smooth that you barely saw it happening; he was finished listening and well into teaching the Residents about the Wyatt's various heart sounds like it was nothing at all.  Each of them got to listen as well, which proves once again that a respectful approach to children (and a little bit of patience) works like a charm and you don't always have to break out the restraints.  I still hold the hospital in very high regard, as should all of you.  However, I think with our comedy of errors that day, we got the "B" team.
 
The cardiologist had reviewed all the data and there was some good news.  The VSD part of his AVSD (the hole between the ventricles) had closed and was no longer an issue.  He was surprised and I was a bit smug, as it had done exactly what he told me it would not do (and what I said it would).   The two holes of his ASD however, still need repair and his shared-but-kinda-not-really valve(s) need complete separation.  His surgery could be done now, or based on the current results, could be quite comfortably done a year from now.  Sean and I looked at each other.  My husband raised some very valid concerns about Wyatt's development, his potential for back sliding and how it might actually be less detrimental now than a year from now when he is (hopefully) walking.  The Doc looked at me and I shrugged, validating Sean's concerns and indicating that I looked at this reasonably mechanically and that the sooner it is fixed, the better he will be and the sooner we can put all this behind us.  He nodded to both of us and agreed to present Wyatt's case to the surgeon, who will ultimately decide on a surgery date of either now or a year from now, but quite probably, we will receive a phone call in 3 to 6 months for his pre-op appointment.  His surgery would be shortly after that. 

This is going to sound silly to some of you, but one of my major fears all along is that somehow, at some random time, his heart was going to destabilize and be in big trouble.  I have been living with this fear for two years ago this month, when I found out about his AVSD in the first place.  This fear seems to have gone for the most part, in the large sigh I let out as we wheeled my once again unconscious son down the hallway and headed for the elevator. We still have scary-open heart-surgery fears looming on the horizon, sure.  There are also a lot of 'maybes' in this schedule, which for me, has to be planned pretty much in advance to ensure that I have enough vacation time, etc.  But, it is more than we had going in.

Wyatt was pretty sleepy for the rest of the day and would nod off at regular intervals.  I had to physically sit with him on the floor when Sean went to get the other two kids as he would fall asleep sitting up and bowl over.  Both of his siblings missed him; Zoe apparently started saying "Wyatt! Wyatt!" the moment she laid eyes on the van.  When the open door didn't reveal her twin, she looked around and then turned to her father, asking "Wha Wha Wyatt?"  Sean explained to her that he was at home and she immediately began to pout and well up.  On arrival, I could hear her at the front door continue with "Wha Wha Wyatt!" and her shoes click across the hardwood.  She strode into the livingroom, locked eyes with her twin... and strode on past him with barely a nod.  She missed her big brother, but she's just too cool to make a big deal out of it, apparently.  She's not very good at maintaining this little charade however, as she has been bringing him toys and addressing him by name very frequently since then.  Of course, this only happens when she thinks we are not looking.  Wyatt has suffered no ill from his experience and has returned to his normal, happy self. 

When I got back in the van after dropping the kids off Wednesday morning, Three Little Birds came on the radio.  I updated my Facebook status, hoping that it was an omen for our trip (as Sean and I were doing anything but smiling with the rising sun).  As it turns out, it was a portent of sorts.  Things did turn out to be okay, despite all the stress and shenanigans.  We have a kinda-timeline and a better understanding of what is happening with our son.  Wyatt will need surgery, but it is for another day.  As I said to the cardiologist on Wednesday, we were expecting him to go into CHF shortly after he was born... and he didn't.  We expected it by three months, by six months, by a year and instead, he has defied everything and is thriving.  With the closure of the VSD, he has been given an extra little boost.  His lungs are clearer and he has more energy to explore his world and learn new skills.  (Which he is, as he is trying to pull himself up at any opportunity).  As his Mom, who knows a little too much for comfort, I have been waiting for the other shoe to drop for two years.  With our trip downtown, 'every little thing' was not perfect, certainly.  For the the first time in years however, I feel like things are finally going to be all right. 

Medical Monday - The Brain and Down syndrome: Part 2: The Brain and Trisomy 21 (31 for 21, Day 22)

As we explored last week, the brain is a complex organ with highly specialized areas that control almost all of the body's functions (both conscious and unconscious).  This week I hope to shed somelight on the differences between a 'typical' brain and one with Trisomy 21.

Anatomical Differences

Lateral surface of left cerebral hemisphere
of the 'typical' brain

Through autopsy, MRI imaging and related studies, many anatomical differences have been noted in the brain with Trisomy 21. There is:

• Statistically a brain that is 18% smaller by volume 
• A smaller than average occipital lobe and brain stem
• Alterations in the layers of the cortex (cortical lamination)
• A simplified appearance to the sulci (the furrows or wrinkles in the surface of the brain.  The inside of the furrow is known as a sulcus, while the crest is known as a gyrus)
• A smaller cerebellum, which could account for the hypotonia, motor-coordination, articulation, fluency, syntactic, language and cognitive issues with Down syndrome.
• Smaller frontal lobes (although in proportion to the rest of the smaller sized brain) could account for cognitive deficits, executive dysfunction, inattention, tendency towards perseveration.
• Smaller temporal lobes than the average brain, although larger comparatively when size corrected for the smaller overall size of the brain with Down syndrome.
• Larger white matter volumes within the temporal lobe which could attribute to cognitive dysfunction
• Adults with DS have been found to have a larger parahippocampal gyrus (the fold of the cerebral cortex that lies over the hippocampus that is normally composed mainly of grey matter). One study found an inverse relationship between IQ and parahippocampal gyrus size. 
• Smaller hippocampus volumes have been found in adults with DS which may contribute to memory and language deficits



A brain with DS, noting the 'boxy' shape and shortened
superior temporal gyrus (Image courtesy of
Virginia Commonwealth University's Department of Pathology)

•  A comparatively smaller superior temporal gyrus which could significantly contribute to language deficits as it is the location of both the primary auditory cortex (region responsible for sound) and Wernicke's Area (region responsible for speech and language recognition)
• More grey matter in the parietal lobe.  This could account for the strength of visuospacial processing and visuospacial short term memory.

There is also a general larger volume of grey matter in the subcortical region. There are several theories surrounding this. One, it could suggest a different rate in development for the cortical and subcortical areas. For example, no abnormalities are seen in fetal brains with DS until the third trimester; by then the majority of the basal ganglia are formed. The cerebral cortex, however, continues to grow and develop beyond this time, which suggests that the subcortical regions are mainly unaffected by the onset of the abnormalities. Another theory is that programmed cell death (apoptosis) is not effective, causing a large number of basal ganglia to continue to operate long after they become dysfunctional. Some children with DS also have vascular dysplasias and focal calcification of basal ganglia

Histological Differences

There are also differences in the cells themselves in the Trisomy 21 brain:

• Neurons have a reduced number of dendrites, less synapses an are often clustered irregularly. Early in development, a infant with DS has a rapidly growing dendritic tree, which connects neurons together. Within the first year however, this growth slows.
• Oligodendrocytes, a type of glial cell, create the mylen sheaths which insulate the axons of a nerve cell. There is some dysfunction with these cells in Down syndrome which is seen as delayed mylenation in the frontal and temporal lobes
• There are more microglial cells found in Trisomy 21
• There can be a presence of nerve cell heterotopias in the white layers of the cerebellum (which could indicate some disturbance of cell migration in the embryo)
• A decreased amount of granular cells throughout the cerebral cortex
• A decreased amount of neurons in the occipital cortex and hypothalamus
• Larger amount of astrocytes in the temporal lobe

Other theories:


It is possible that over expression of the T21 gene affects apoptosis or programmed cell death. This could potentially account for lower numbers of neurons in specific areas of the brain and the prevalence of leukemia in the DS population. Also, compounds known as Reactive Oxidant Species could contribute to neurodegeneration by oxidation.

Other factors to consider:


Beta-amyloid expression in children with Down syndrome is no different than in normal children. However, it disappears after age two then reappears in adulthood.

The accumulation of beta amyloid deposits, senile plaques and neurofibrillary tangles starts at approximately age 40 which may represent or lead to an Alzheimer's like neurodegeneration


[Next week: Down syndrome, Alzheimer's and a Very Special Mouse]

Becker, L., T. Mito, S. Takashima, and K. Onodera. "Growth and Development of the Brain in Down Syndrome." Progress in Clinical and Biological Research, 373 (1991): 133-52. Web.

Lubec, G., and E. Engidawork. "The Brain in Down Syndrome (TRISOMY 21)." The Journal of Neurology 249.10 (2002): 1347-356. Web.

Pinter, Joseph D., Stephan Eliez, J. Eric Schmitt, George T. Capone, and Allan E. Reiss. "Neuroanatomy of Down’s Syndrome: A High-Resolution MRI Study." The American Journal of Psychiatry 158 (2001): 1659-665.

Teaching Tuesday: Learning and Down syndrome (31 for 21, Day 16)

Children with Down syndrome learn differently than their 'typical' peers.   Most of this can be attributed to the developmental and structural changes created by Trisomy 21.  Today's Teaching Tuesday is dedicated to how children with Down syndrome learn.


The overall development of the child with Down syndrome:

• Can be viewed two ways:  as a "delay" or slowing of normal development or a separate, different method of learning all together
• Includes most of the usual childhood skills, however these generally occur later than with typical children

Factors that impact learning/commitment to teaching include:

• High initial failure rates (time to learn new skills extended)
• Language and communication problems in Down syndrome
• Possible difficulties reading social cues
• Lower expectations compared to typical children (including stereotype of happy, docile, yet dull witted children)
• Old or outdated information re: Down syndrome (such as believing life span only 30 years, etc)
• Not understanding the benefits of inclusion beyond social and emotional development
• Adopting counterproductive leaning strategies (such as increasingly relying on others, a resistance to trying new and more difficult things)

Children with DS typically:

• Have strong interactive skills from early months
• Have a delay in motor skills
• Become mobile and independent with self-help skills
• Have delays in speech and language
• Understand and reason more than can be effectively communicated
• Have short term memory impairments
• Are visual learners (and learn to read early due to this)
• Have more difficulty with numbers compared to reading
• Are less likely to develop difficult behaviours than other children with cognitive delays 
• Have an increased risk of visual and auditory impairments which would impact ability to learn

Strategies to enhance learning for those with DS include:

• Being aware of and assisting with any physical differences such as with vision and hearing.  
• Any communication systems (such as devices or sign language) that are used should be familiar to everyone
• Using verbal cues and visual supports.
• Limiting distractions
• Providing comfort:  being aware of sensory, physical or size issues
• Using adaptive materials (such a specialized scissors, pull tabs for zippers, etc)

Buckley SJ, Sacks B. An overview of the development of infants with Down syndrome (0-5 years). Down Syndrome Issues and Information. 2001. 

Johnson, Carol. "Teaching Students with Down Syndrome." Canadian Down Syndrome Society. N.p., n.d. Web. <http://www.cdss.ca/>.

Wishart JG. Motivation and learning styles in young children with Down syndrome. Down Syndrome Research and Practice. 2001;7(2);47-51.

Therapy Thursday: To Sip or Not to Sip (3 for 21, Day 4)

There has been a lot of controversy and discussion around self-feeding, especially when it comes to bottles and "sippy cups".  I myself am smack dab in the middle of this with my twins at the moment.  On one hand, we have to do what is right for them and their individual development.  On the other, we have the needs of the family.  What's right?  What's wrong?  More importantly in terms of my kids, what am I going to do?

First, consult the experts.  According to several (including our own OT and pediatrician), the following is recommended:

• Introduce a cup a month or so after introducing spoon feeds (6+ months)
• Use thickened liquids at first to help with swallowing

How to teach your baby to use a cup:

• Ensure the baby is sitting up and well supported.
• Using a small cup, place the rim on the child's lower lip
• Let a small amount of the liquid flow slowly into the front of the mouth.  (Do not pour it in!)
• Ensure the tongue is above the rim of the cup
• If your child has difficulty closing their mouth when swallowing, provide some jaw stability with your thumb and forefinger by placing them around the chin
• As time goes on and the baby gets better at it, leave the cup on the bottom lip and allow the child to take small sips on their own

Regular spout sippy cups are not advised as:

• they encourage a poor latch-style mouth shape, 
• they encourage jaw protrusion
• they encourage chewing on the stem
• there is a high incidence of dental cavities among children who use or have used sippy cups.
• they encourage an "open bite" (misaligned teeth)

Several sources recommend:

• a "coffee style" or recessed hole opening cup (as it helps keep good posture and a good mouth shape).  This is favoured by our OT.
• the "Doidy" cup (a slanted handled cup available in the UK),
• a cup with a nose cut out (??),
• Mr. Juice Bear, 
• juice boxes as you can squeeze juice into the straw to aid with sucking

That, in a nutshell, is it.

However, what I am about to say may shock a few people:  this is not exactly what I am doing.

Before the pitchforks and torches arrive however, I would like to preface my personal choice for Wyatt with a little refresher on his back story. My twins are preemies, delivered by emergency C-Section at 34 weeks, 4 days.  They were six weeks early and every single development has had to be adjusted accordingly.  Every age given to a physician or specialist since they have been born has had six weeks subtracted from their age and the suffix "6 weeks corrected" added to the answer.  It doesn't sound like much until you consider that they are almost 2 months behind full term babies born on the same day.  When you look at Wyatt, you add a little more time as he is a boy (who, statistically take longer to develop than girls).  You can also add a little more time for his extra 21st chromosome and even more time as he was born with a hole in his heart.  I can't really guess at his developmental age (and I shouldn't be either);  what I can say is that he is right on with some things and a little behind in others.  In terms of motor skills he's about where his neurotypical older brother and younger sister were at about 10 or 11 months or so.  The twins will be two in February.   There is a developmental gap in this house, that is true.  Most of the time, it really isn't an issue except when it comes to feeding.

Feeding them is an especially tender topic as I had to teach them to eat when they were born.  Most babies come out with rooting and sucking instincts, my little people did not.  Also, being so tiny and early (Zoe was 4 lbs, 1oz and Wyatt was 4 lbs, 13oz), if they attempted to eat, it would have exhausted them.  Zoe was tube fed for most of the first two weeks of her life and Wyatt for the first month of his.  I had to patiently teach them both to suck.  You can read more of that here.  Once they were able to latch properly and breast feed, they did, with top-up bottles afterwards to help them gain weight.  Zoe, with her strong latch, preferred Avent, while Wyatt, with his unusual latch, did better with the Medela bottles.  Feeding time around here is a huge issue; if you think keeping track of what one baby is eating and doing, try doing it with two babies.  And a six year old.  Also, you will probably be alone as I will be at work.  Things get interesting for my husband and I.

Right now, they are eating pretty much the same things.  He has smaller chunks than her, takes longer and we have to make sure he isn't over stuffing his mouth.  He "chews" with his back gums and moves food around in his mouth like a pro.  They've been off puree for a very long time now;  they've been self feeding the same amount of time.  Unless we sneak in an applesauce or pureed fruit dessert, we rarely use the spoons any more.  Most of the time, we let them play with them, to get used to handling them. 

We have tried various shapes and sizes of covered drinking cups with Wyatt as we have a stack of them left over from our first son, Quinn.  We loaded up many different designs over a couple of days to see what kind of reaction they would get.  Zoe had little or no problem with anything except one of the new straw models as the straw was too small in diameter.  Our Wy guy, however, was totally overwhelmed and would cry and cry when he saw the sippy cup or straw or what-have-you.  The straw would poke him in his palate, the others would pour down the front or he would choke.  His oral muscles are not as big of a problem as you may think as he and his sister were breastfed for 17 and a half months.  Trust me, dude can eat. I'm also not totally anti-sippy cup for two other reasons:  one, we do not let our kids run around with anything other than water.  They have milk or juice at meals and milk only before bed.  Which, is still in a big bottle and fed to them individually before putting them down as bedtime is also a big production (no, we don't put them down with bottles in their beds...).  Sippy cups aren't to blame for the increase in pediatric cavities:  parents and constant access to sugary drinks are (the sippy cup is just the mode of delivery... like they say, don't shoot the messenger).  I've got a mouth full of "why you don't walk around drinking acidic things off and on all day long at your leisure when you are already dental compromised".  Even when my kids do get juice, it's 1/3 strength (so, juice boxes are on the no bueno list for the wee ones as well).  Two:  I'm sorry, but no matter how cute and useful Mr. Juice Bear is, I will never be able to look at my darling child using it without thinking that he is drinking out of a bong.  I was also having difficulty rationalizing spending almost ten dollars on one cup with one straw that looks like it is just a re-vamped honey bottle.  I am assured that it isn't.  In fact, one of my dearest friends recommends it highly as it helped her daughter transition to drinking after the NG.  Her testimonial is enough for me;  Mr. Bear gets the official seal of "Awesome".  However, she's in agreement with me:  it still looks like a bong.

There were two versions of drinking cups that Wyatt did manage to use with some success.  We found an Avent sippy cup with a soft Nuby like protrusion on the top that wasn't exactly nipple like and not exactly a spout.  The other, my first choice, was a Nuby cup with a soft straw like top.  Sadly, I was afraid he was going to chew it off and the cup itself was so large he had to tip it back to drink out of it.  We went with the Avent with the soft spout and I had a chat with my OT and pediatrician.  Our pediatrician is a hard core old fashioned cup advocate, however we can't practice with cups safely (and sanely) with both of them unless both of us are here.  What I decided to do, for the best of everyone was to slowly wean him to an open cup and my secret weapon. The soft nipple went away after a few weeks and was replaced by the medium one.  It is soon to be replaced with a hard, smaller one, once he gets used to the valve not being there (as I have removed it to simulate more of a cup)  He will then go to some kind of straw.  In the meantime, when I am home, we will do proper cups.  Once we get the hang of that, we break out the secret no spill weapon which, in the absence of the "coffee cup" type covered cup, has gotten the thumbs up from Wyatt's team.  It's this:

Say hello to my little friend...

This is the Advent "Natural feeding cup" which has a valve only to stop the liquid from pouring out once either one of them throws them on the floor (as, if you read yesterday's post, they do multiple times a day each).  The top is indented to allow for the nose and by indenting the middle circle on one side (as the top lip naturally would, with the jaw in alignment and not thrust forward and the tongue where it should be), the liquid easily flows out.  Stop pressing, liquid stops.  It's elegant in it's design.  You drink out of it like you would a proper cup.  If you don't, it doesn't work. It also has handles. 

So far he hates it.

However, two wait patiently in the kitchen, one for each of them. 

I wouldn't recommend doing what I am.  However, I would recommend doing what is right for you, your child and your family.  Not everyone has my circumstances, that is true.  However, for those that do, you may want to rethink a few things.  But, and I can't stress this enough, run it past your team first.  Perhaps there is a way to incorporate good practice for your family that fits into your life.  You won't know until you ask.

No matter which method you choose, raise your cups high.  Salut!

Perez, Jennifer, and Gwenyth Gorlin. "Feeding & Swallowing in Children with Down Syndrome." Lecture. Allen C. Crocker Family Lecture Series on Down Syndrome. Children’s Hospital Boston Feeding & Swallowing Program. 24 May 2010. Boston Children's Hospital. Web. <http://childrenshospital.org/>.


VanVuren, Marinet. "Developing Good Drinking Skills in Children with Down Syndrome." DownSyndromeCentre: Information and Services for Parents of Children with Down Syndrome. DownsyndromeCentre, 27 Feb. 2009. Web. <http://www.downsyndromecentre.ie/>.

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Moment to Moment

"The ability to be in the present moment is a major component of mental wellness." 

--Abraham Maslow

Many people aspire to "live in the moment".  In today's world it has become cliché.  In Team Logan's world, this is our reality; we live in a series of moments, strung together like beads.  There are many reasons we do this; we do this for happiness, we do this for survival.  We do this out of a need for stability, even for a need of self-actualization. Most of the time it just boils down to 'because we have to'.  There is always a lot going on which makes planning and projecting almost impossible in some ways.  The past few weeks have contained some very significant moments.  Some are happier than others.  Many, especially those from work, are best forgotten all together.   There are the game changers too... those are the ones that we have learned truly matter.  We have learned to parse through all our moments and live in the ones that mean the most.  It's not about hiding or being in denial;  it's about staying focused and enjoying ourselves as much as possible.

A very significant moment occurred a week ago Thursday.  That morning, I found myself once more staring at fish.

Unlike the last time that I found myself tranq'ed by this particular tank, my daughter was buzzing around the room, occasionally stopping to gaze up at the waving tails within.  Her twin, my son Wyatt --- the reason we were here --- was perched on my knee.  I bounced him absentmindedly as he watched his sisters antics and grasped my fingers with his chubby fists.  The bubbling of the aerator was soothing;  once more I found myself falling into a trance when we were called into the cardiologist's office.

The uncertainty of Wyatt's heart has been looming over us for so long.  Like the Sword of Damocles, it hung in the balance on the barest of horse hairs .  So far, so good:  no CHF;  no meds;  no cyanosis.  No coughing due to fluid in his lungs.  No infections outside of the two colds the kids have endured.  No antibiotic use outside the NICU.  We've been lulled into a sense of comfort by our lives, we've tricked ourselves to not see it.  Occasionally, we look up and remember.  Sometimes I can almost feel it's keenness whisper across the back of my neck.  Whether we want to admit it or not, we are "cardiac parents".  Our son would be farther along in his development if he didn't tire so easily.  This day we will get answers.   We find out if we're continuing along, or if we're steeling ourselves and actively planning for his surgery and subsequent recovery.  There is a lot hinging on the next hour or so, ranging from the usage of accumulated vacation time to Christmas plans to our future in general.

It's a familiar place, this office.  I like the doctor very much.  His wife is also lovely and works as his sonographer.  Both are very highly regarded in their field.  However, my stomach is in knots and my son can feel it.  He is not himself today.  Although a little tired, he should still be more outgoing, friendlier.  Even when exhausted he waves at strangers and smiles toothy grins at old ladies in the supermarket.  Today he is in "Michigan J. Frog" mode.  Somber, half gazing around him, shoulders slumped.  Looking every inch the stereotypical archetype of Down syndrome.  I too am going through the motions as I robotically move about this appointment.  Wyatt is weighed and measured:  10kg, 70 cm (22lbs, 27.5in).  He's a little heavier in the few weeks since the visit to the pediatrician.  We go on to consult with his physician. 

History is gathered, Wyatt is assessed.  We return briefly to the waiting room before being called in for his echocardiogram.  For the first time here, Wyatt is sedated, given a tiny drop of midazolam in some chocolate milk.  As it takes effect, he becomes slower and looks drunk.  He stayed awake through the entire procedure, calmly gazing around and occasionally focusing on the Dora the explorer tape the sonographer had popped into the overhead TV.  We went back to the waiting room one more time, before I was called in to see the results.

As always, the cardiologist played the recording for me.  In real time, I watched my son's tiny heart as it beat within his chest.  The ventricular aspect is almost indistinguishable at this point;  to my untrained eyes it looks like a simple narrowing in the septum.  Two valves opened and closed with each beat;  above which the atrial septum was distinctly absent.  The beat was strong, regular, steadfast.  The back flow through the valve highlighted in colour.  "A few stitches" would ease this problem, nothing more.  I nodded, smiled appropriately, waiting and attuning myself to his every gesture, his every nuance so that I would not miss or mistake the information that was coming:

Pre-op appointment in 8 months.  Surgery, most likely within a year.

It is not bad news, it is not good news.  It is news that allows us to breathe again.  To plan.  To have some kind of idea what the next little while is going to look like.  It may seem like an incidental but there are so many things at stake.  Vacation time can now be planned and the current accounts that were held back "just in case", used for their intended purpose (and alleviate my current level of exhaustion).  Anniversaries, birthdays, Thanksgiving, Hallowe'en... these events are allowed to exist again.  Although their exile was self-created, it is impossible to imagine the future while that blade could fall any minute.   It's still there, but is supported by much stronger stuff.  We have a plan. We can do this.  This was an important moment;  this is one of the moments that allow us to live.

A few days before our trip to the doctor, we were eating dinner in front of the TV and Zoe was doing her best to cruise for tidbits.  The night before had been complete hell for both her and us as she was awake and screaming a great deal of it.  She has quite a few teeth coming in at once and I have no doubt that her mouth is terribly sore.  So much so that her appetite has decreased overall and she is more apt to eat soft squishy things and drink her milk.  I'm not adverse to giving the kids food off my plate either as I want them to eat and to experience different flavours and textures.  So, she was travelling back and forth between Sean and I and taking bites of our pizza.  At one point I made her use her sign for "more" and half jokingly said "say please".  I didn't get my please, but what I got was even cooler.

She said "Mama!".

I have been almost torturing her for months with "Mumumum".  My eldest son did not call me "Mum" until he was much older.  He was speaking in full sentences by the time I actually got a "Mama" out of him;  up until that point he had called me "Lady".  Zoe's "Mama" was typical of her;  sudden, it caught me off guard and was accompanied by a grin that would lead you to believe that she could do this for months but just didn't feel like it.  I tried not to freak out but still scooped her up and danced around the living room a bit while covering her with kisses.  It was awesome.  All the kids joined in the fun as Wyatt screeched and giggled on the floor nearby while Quinn shouted "woo hoo!".  Truly a banner moment.  She has been doing it sporadically since then, but she is aware that it has impact, the little minx.

Nine days later, the babies and I were in the kitchen as I was feeding them dinner, while Sean prepared ours. Wyatt was across from me in his high chair and both babies were babbling away in between courses.  At one point he said "um um um" and I smiled at him and said (like I had a million times before) "say Mama". 

So he did.

Not only did he say "Mum mum" but he held up his spread hand and tapped his thumb to his chin, making the sign for mother as well.  Suddenly, things got pretty blurry and I was lightheaded as I choked back the scream of delight that would surely have scared the daylights out of him.  As it was, I still pounded my feet on the floor and a few tears rolled down my face as I squeaked "He said Mum mum!  He said it!  AND THE SIGN!"  I covered my little guy in kisses as I had his sister;  he just laughed at me and reached for his dessert.

These are the moments that you live for as a parent;  as a special needs parent, doubly so.  We have no room for complacency on Team Logan; each new feat is celebrated to the max, each new skill rewarded.  All the sleepless nights, all the fatigue, all the hours of therapy, all the pain is gone in an instant and replaced instead with a supreme joy that I doubt I could explain fully.  Imagine a hundred pipe organs exploding into fanfare while fireworks rocket overhead and you will not even be close.  These are the moments that make everything worthwhile.  These are the moments that make you feel alive.

We will have more moments of note in the near future.  Our eldest starts Grade 1 on Tuesday.  We will have new words, new signs, new methods of locomotion and expression.  There will be more teeth, more texture and more variety to meals. There will also be the sleepless nights, frustration and tears... some of which might actually be from the children. 

Hear, Hear!

Listening to you, I get the music
Gazing at you, I get the heat
Following you, I climb the mountain
I get excitement at your feet

--The Who, See Me, Feel Me

Last Thursday, amongst two night shifts, two trips to the dentist and getting our ducts cleaned, we took Wyatt to the audiologist.  Like many preemie babies (with and without Down syndrome), he was referred for frequent monitoring of his hearing.  Those with DS are watched especially closely as there are a variety of hearing issues that can occur. He's had his hearing tested several times since birth , starting with our first trip when he was 4 months old (corrected).

Hearing issues are a common problem at birth (about 1-2% in the general population).  Many populations of infants are at high risk;  those amongst the highest include the premature, those with lower oxygen levels at birth, jaundice, irregularities of the head and face, infections, low Apgar scores and conditions such as Down syndrome.

Testing infants, as you can imagine, is a little trickier than testing a larger child or an adult that can easily indicate or describe what they are experiencing.  Also, there is the source of the potential hearing loss to consider;  is it a conduction issue or a sensorineural one?  Luckily, there are two different methods to test hearing in the little ones.  Both are automated, non-invasive and do not require the infant to react to anything.

ABR (or BAEP)

The Auditory Brainstem Response (ABR) or Brainstem Auditory Evoked Potential (BAEP) test monitors electrical impulses between the auditory nerve and key portions of the brain.  Electrodes are placed on the scalp and the activity is recorded as a series of clicks are delivered to the infants ears via small earphones placed in the ear.  Using this test, it can be determined what range of hearing the child has. 

OAE

The Otoacoustic emission test  (OAE) measures a sound bounced back from the inner ear and tests the functioning of the cochlea.  An earpiece containing both a microphone and a sensor is placed in the ear and a series of clicks and tones is measured once it has been processed by the inner ear.  Sounds that are required for understanding speech are tested and based on this criteria, the child either passes or fails. 


Wyatt has always passed with flying colours in his right ear, but his left was presenting with some odd results.  During the OAE, we were either detecting fluid in the inner ear or a small depression on the eardrum itself.  This time, as he is older and now able to be conditioned to a stimulus, we had a new test; he was taught that after he heard a sound, a mechanical toy would light up and play for a few seconds in a shadow box.  Tiny microphones, identical to the ones he wore in his ABR tests, were placed in his ears and he was given some toys to occupy his attention when he wasn't being tested.  He loved this test, was conditioned after two tries (!) and passed with flying colours.  So much so that he has been discharged from the high risk program at Erin Oak and will only have to return if we encounter problems (such as suspected damage from ear infections, etc). 

We were happy to get this news;  not only is it one less appointment to worry about, but knowing that his hearing is perfect and speech ready is a weight off our shoulders.  We kinda knew that anyway... That kid could hear a cookie wrapper opening in the next room with the radio on and his brother and sister noisily tearing about the place.  However, now we know his hearing will not hamper his language development.  Which is important, as I long for the day that he can finally say (using a word or sign) "Mama".

----------------------
Hyde, M., Newborn Hearing Screening Programs: Overview, The Journal of Otolaryngology, 34:2, August 2005.

Mersch, J., Kibby, J., Newborn Infant Hearing Screening, MedicineNet, 2012

Special Thanks to:

Infant Hearing Program, Mount Sinai Hospital, Toronto.

Erin Oak Centre for Treatment and Development, Ontario.
 

Olympic Spirit

As much of the planet knows, we are smack dab in the middle of the Olympics.  My news feed has been awash daily with national pride, good natured ribbing and sadly, some not-so good natured politics.  My favourite posts so far are from the parents who are winning silver in their hair from the "sports" that their kids are reenacting in living rooms around the world.  We too have been affected by the spirit of the 30th Olympiad, but not in a way that you might think;  there have been all sorts of medal winning moments here as of late but you won't see any of them replayed on the news.

Last Monday we trekked to the pediatrician's office.  Fortunately for everyone involved, it wasn't a repeat of our previous trip.  We decided to be ahead of the game by confirming the appointment properly twice and arrived over 15 minutes ahead of schedule.  For our efforts, we were rewarded by getting in early;  the secretary mumbled bitchily about the people ahead of us being late, so our appointment time would be moved up.  (Sha-ZAM!)

Zoe, our little mighty mite, is now 10.06 kg (22 lbs) and her older brother Wyatt is 9.06kg (20lbs).  Zoe's weight for her (corrected) age scores her within the 50-75th percentile , while Wyatt is bang on at the 50th percentile for his corrected age on the Ds charts.  Their length has also shown improvement as Zoe, at 75 cm (30 inches) holds her ground at bang on the 25th percentile, while Wyatt has jumped up to the 25-50th percentile at 73 cm (29 inches).  That's great news as I was beginning to fear that they would be tiny forever. 

I found myself irked at a couple of questions that the pediatrician asked.  Such as "does he know his name?" I had to stop and count to ten at these moments and remind myself that she only sees him once every 3 months.  He has come so far since our last appointment that she has a lot of catching up to do.  As we went through the list of accomplishments and goals that we and our ICDSP worker have for him, the subject of the sleep study came up.  We did not receive any results of any kind after his ordeal study and to be honest, I was a little annoyed by it.  As it turned out, she did receive results (in June).  According to the report, Wyatt's apnea levels were within normal limits at all times.  However they did note that he was some snoring at various points, the cause of which was difficult to assess due to... [are you ready for it?]...  "loud parental snoring".  I think I laughed and quipped something about a family of large tonsils, but I could have quite nicely crawled under my chair and died of embarassment.  Did you see the pallet I had to sleep on?  Puh-leeze.  In any event, there are several things with this: 

1) Any higher pressure in his lungs is not due to sleep apnea.
2) He does not have sleep apnea so surgery is not going to be as scary. 
3) I'm betting they will move his surgery date up (due to the pressure being caused by other things).  

Finally, my favourite:
4)  Wyatt may not have sleep apnea, but I probably do. 

We've been chuckling about this for quite some time, despite my mortification.  Sean was more than happy to regale our ICDSP worker when she arrived Monday.  I was in and out with Quinn as we were in the garden staking up our tomato plants, but when not listening to Sean's stories of my snoring, she worked on several things with Wyatt.  He's had a little plateau as of late with the mobility, so I could almost hear the frustration in her voice as she said "He's so close to sitting up, he's got all the parts, he just needs to put it all together".  I agreed and then we discussed working on his ball rolling and sitting exercises.  

The very next day, Wyatt decided to take matters into his own hands.  Mid morning, Quinn looked over to find Wyatt sitting up in the corner.  Excitedly he pointed it out and we all clapped (including Wy, who instead of clapping, raises his hands and waves/Kermit the frog flaps yaaaaaaayyyy! ).  I didn't think much of it as he was right beside a lot of objects that he could have pulled/pushed himself up on.  Later on, in the middle of the floor, he did it again!  And again!  Four times in one day, twice witnessed!  It was amazing.  That was a gold medal performance if we had ever seen one.  It didn't stop there either: the next morning as the babies were exploring the living room, Wyatt was really straining to peek up over the edge of one of the toy baskets.  I casually remarked "Geez Wyatt, if you want to see what's in there, you should sit up!".

So he did.

He leveled his gaze at me, pushed backwards with his arms and pushed himself into a sit.  Then he grabbed what he was going after out of the basket.  It was phenomenal.

Wyatt decided to go for the triple play when he learned to roll the ball later on that same afternoon.  We were sitting with our legs in a V-shape, to allow the ball to roll between us.  Now, previous to this, we would start rolling a ball and Zoe would zip by and run off with it.  It would not matter what type of ball it was either;  large, rubber, tennis, O-ball, we have them all.  We'd start with one, she'd plop herself down in my lap, intercept the ball and be gone!  I'd look at Wy, take another ball out of the basket and roll that one to him.  He'd eventually hit it back to me and whoosh!  Here's Zoe again, going off in a different direction with a ball in each hand.  I thought initially "she's got both her hands full, now's our chance" and went for the third ball. Naturally, I was wrong and she, believing what we had was better, dropped one of the balls and went after the new one.  This would continue on until the basket was empty and she had a stash of balls over in the corner like some sort of obsessed sporting goods squirrel. It also wouldn't matter if I grabbed up one of the ones she'd already taken, as she'd take those back as well.  However, that particular afternoon, Quinn managed to keep her occupied for a few minutes.  We were using a ball with a rattle in it, so for the first bit, Wyatt would just pick it up and shake it.  Then he would rattle it a few times then push it towards me with the back of his hand.  Then he would just roll it towards me.  We were only playing for a short time, but it too was outstanding.  I tried to mix it up a bit with telling him to "shake it!" then "roll it", which he did, flawlessly.  Once again, he has shown us his own unique learning curve of "nothing, nothing, nothing... mastery!" He has shown us again to never lose hope.  He will get there, you just need a little more patience.

Zoe is breaking family records left and right for her physical prowess.  She figured out one day not too long ago that she could climb me like a rock wall.  She digs in her tiny fingers and will use her teeth and toenails if necessary.  It's cute, scary and, well, painful (for me) at times.  Once she figured that out, it was only a matter of time before she made it up to the couch.  Then the couch became a trampoline.  To her credit, she's only vaulted off the couch twice, but I can't tell you how many times I have grabbed her off the arm of the couch as she tries to use it as a pommel horse.  Never mind the silver, I may not have any hair left by the time this one reaches adolescence.

She's also shown a little more interest in her twin as of late.  They are always aware of each other, but other than a fleeting moment here and there (such as her trying to pull him up to a stand by his ears or removing some cherished object that he is currently enjoying), they as most children their age, tend to parallel play.  I've found them working together on several instances, an idea that I have to admit that I can find a bit unsettling.  One of their newest tricks is what we call "boosting the signal".  Before, if one cried, the other would look over as if to say "what's your problem?"  Like this:

"WTF Dude?" (2 days before their first birthday)

Now, if one cries, the other will do the same to make sure they get heard.  I've watched the other look at the crier first to assess the situation and then respond with a yell of a similar pitch, volume and timbre.  It is... freaky.  Especially when there are no tears on the second twin and the keening stops the absolute second the first twin does.

I've also found Zoe sitting down next to Wyatt and chatting to him.  We were coming in from one of our many shopping trips the other day and I had only managed to get Zoe out of her car seat in the living room before having to quickly run back to the door (to assist Sean with some armful of awkwardness he was trying to bring in).  By the time I had walked the 30 feet back to where they were, Zoe had sat down on the floor next to Wy in his car seat and was babbling away at him.  At one point she leaned in and patted him on the head as if to say "S'ok.  Mom will be back soon.".  On my return however, she wobbled off pretending she had more important things to do.  Typical.  Wyatt however, beamed at her from his chair and said "Zazazaza!".

If you're keeping track of Team Logan's teeth tally, we currently have Quinn at -1 (+3 adult), Wyatt at +2 and Zoe at... somewhere between 8 and infinity.  Seriously, it's really sharp in there and there was a period of a week where I was trying to peer in/feel around for a total.  I finally figured out that if I dangled a cookie up over her head, she'd open her mouth and look up.  Works for both toddlers and pets.  I discovered then that she has 11:  eight in the front and three molars.  Apparently, cuspids are still for losers.

Quinn is having all sorts of adventures that only a boy of six can appreciate.  He's discovered that he loves day camp, which is awesome.  They swim every day, hike, climb the rock wall, do crafts, archery... all sorts of outdoorsy sporty stuff, which he likes very much.  We like the fact that it gives him a break from the babies, puts him with kids his own age and then runs him bloody ragged.  He tells us of his day in a sleepy voice once he gets home and assuming he stays conscious through his dinner, he retires early to do it all over again.  It is awesome.  He is growing up so damn fast; at least this way he has some great summer memories that don't involve the TV or waiting patiently for one of us to finish something so that it can be his turn.

When he's not exploring the great outdoors or playing with his siblings, Quinn continues to draw.

On my beer fridge, yet.

When I found this international salute, I was stumbling blurry eyed to my Tassimo, which sits on top of the mini-fridge.  I called him over and asked him about his artwork;  he proceeded to whip out his globe and not only show me each of these countries, but also the capitals.  Wow.  That's a lot from a 6 year old, especially before 8 am (and more specifically, my coffee).

We are not a sporting family, but we have won more than our fair share of victories here lately. They probably seem not much to most people, but to us they are world class performances.  Wyatt works harder every day than other kids his age.  Right now they are all doing their own thing as they grow:  Quinn is picking at his dinner in larger quantities and is now going to bed early, Zoe eats everything that isn't nailed down and has given up sleeping at night and Wyatt sleeps only at night and during mealtimes.  Just as the Olympics started, lots of folks were talking about the "Olympic Mom" Best Job Commercial from P&G. I can relate to this.  My family is a lot like this.  Watching Wyatt sit up for himself the first time, after months and months of trying... I can't even describe properly how that felt.  No crowds roared.  No medals were awarded,  but, I felt so incredibly proud as I hugged my child and cried.  I relate a lot more to this one too, one that does not get the same amount of airplay:

The rest of the world may not see Wyatt as I do... yet.  One day they will.  One day he and others with a learning disability will be able to live their dreams, free of prejudice.  Soon.  Until then, we will continue to press on, through the pain and the rewards alike.  Come what may, my children, are always going to be 1,2,3 on the podium as far as this judge is concerned.