Friday, February 22, 2013

More Honours! ( #HAAwards and the #SWANS !)

Since my last post (all of two days ago), I've been honoured twice more!

The first is from the Wego Health - Health Activist AwardsDown Wit Dat (the blog) has been selected as one of the finalists for the Best Kept Secret Award.  You can see the finalists here.

The SWANs Blog Post Awards

The second notification is from the SWAN's.  My blog Fairytales was nominated for Best International Post

Thank you to both organizations and to whoever took the time to nominate me.  I am humbled.

Good luck to all the finalists!

Tuesday, February 19, 2013

Community Pride

Once more, I would like to interrupt this blog for a special announcement...

Down Wit Dat has been nominated for an award from!  That's two years in a row!

You like us!  You really like us!

This year, we have been nominated for Down Wit Dat - The Group, the discussion forum for Down Wit Dat (our Facebook page) and @Down_Wit_Dat our Twitter Feed. 

Confused yet?  I probably should have been a little more creative with the naming scheme.

However, I am very proud of our mighty little online community and I am honoured and thankful to whoever took the time to nominate us.

You can vote once a day, every day through March 19th.'s Readers' Choice:  Favorite Special-Needs Online Community Voting Here!

Congratulations to all the nominees!

We will now return you to your regularly scheduled blog...

Tuesday, February 12, 2013


With all that's been going on, I'm surprised my head is still attached.  In just over a week and a half, we've gone from "Wyatt needs ear surgery" to "Wyatt's having his heart surgery NOW".  I guess there is some testimonial in there about parental fortitude or something, but to be honest, my head is too busy spinning to bother looking for it.  Instead, I'll rub my whiplash-sore neck and start planning our lives for the next little bit.

I don't know about your work week, but mine often comes in themes or flavours.  We'll get a whole lot of one diagnosis in for a bit and then won't see it again for six months.  One of the topics that came up in my eerily-connected "am-I-sure-I-am-not-having-ideas-of-reference?" week was the notion of complex care in direct relation to special needs.  Any parent or adult with special needs is well aware of all of this and balancing what seems like a takeout menu of doctors gets really old, fast.   But, to the uninitiated, it can seem overwhelming at first.

Last month, I ran across this story, where a Mom mapped out her son's care network.  Using a neural type map, she drew a series of ovals for the various supports she utilizes to manage her son's Coffin-Lowry Syndrome.  It is beautiful in it's complexity and it resonated a bit with me as it is often quite difficult to explain to people who all is involved in Wyatt's circle of care.  Or, they simply assume that I whisk him down to a specialized clinic every so often for a once-over.  Nope.  Not how it works.

This is Ms. Lind's original neural map for her son Gabriel:

Gabe's Circle of Care.  There are 102 items on this network including 3 barriers (for one child).

Each of the ovals denotes a department, agency or subject that is to be addressed.  The doors represent barriers to care.  It is clean, it is neat and it puts into context how complex the life of a person with complex needs can be.

That got me thinking a little more.  One of the more popular arguments put forth when recieving a diagnosis of Down syndrome is that it is "too much" work/effort/money.  I can't speak to the latter as that will vary from country to country.  I can however talk about the first two.  Just looking at the above picture, I thought that my map would be nowhere near that complex.  Just for giggles, I borrowed my eldest son's Crayola markers and a sketch pad and sat down to figure out how Team Logan fared.  I used the same headers as Ms. Lind and as I went along, I realized that I was having drawing envy as mine was no where near as big (even with my giant printing-with-fat-markers-writing).  I added in everyone's needs, just to fluff it up a bit.  This is what I came up with:

Team Logan's Circle of Care.  There are 78 items including 7 barriers (for a family of 5).
I came up with a map that had 78 points of interest for my entire family and 7 barriers.  I even added doctors I haven't seen in a while, just to pad it out a bit more.  Most of the barriers that we currently face involve other people and our support circles.  The only barrier to Wyatt's health care that I could  see was the distance and the time involved with dealing with Sick Kids (ie:  driving, gas, parking, food).   Also, there will be additions to this network in time:  for example, the school bubble will flesh out a bit with any needs that any of the kids may have in the future and I hope to get Quinn into music lessons soon.

Even with my gigantic printing, you can see there is a lot less here.  Also, I hesitated to put Wyatt at the centre of our family because he is in fact, not;  he's one of the kids.  I put him there simply for consistency. I also added a few more supports, including this blog and some groups/pages I belong to (and a few more that I've helped create).

Once this map was finished, I started thinking about other families. With her permission, I drew up my BFF's family, representing a family of four, two adults and two kids.  She is notably a "dance mom" and her one child has more needs than the other.  Therefore I chose "Girl" to represent the centre of the family.

Team BFF, an active family of four without other special needs.  There are 61 items, including 5 barriers. 
I'm sure there are more things that I have forgotten, but these will have to do for now.  Their barriers are very similar to ours;  there are limited government programs that they qualify for due to income level and supports are impacted by distance and time.  Looking at it one way, Team Logan a "family with special needs" has an average of 16 items per person.  Team BFF, a healthy, competitive-sporty-type family has an average of 15 items per person. 

Not a lot of difference, frankly.

Although I make it sound like our life is the busiest one ever, it isn't.  My BFF has two typical children and she spends her life in the car.  As it turns out, at least for our two families, having a child with Down syndrome isn't in itself any more complex than having a child in competitive dance.  In fact it's currently astronomically cheaper (and involves a lot less glitter).

I guess my point is this:  yes, my life is a little busier due to Wyatt's extra chromosome.  However, to say that it is in any way unmanageable or intangible due to this detail would be completely incorrect.  This too would fall under the "I don't know how you do it" header that I've already mentioned.  He has a few more doctors, therapies and appointments than other kids his age, I suppose... but no more than the rest of us.

As I plan out the next few weeks and mobilize my support system for Wyatt's upcoming surgery, I'll leave you with a challenge.  Map out your family, your doctors, your specialists, your kids activities, coaches, teachers and support system.   As parents we juggle a lot, most of it unconsciously.  Sometimes it's good to regroup and take stock of all that this parent job involves, whether "typical" or "special needs".  You might be surprised at the results. 

Saturday, February 9, 2013

Say "Hello" to the Other Shoe

I'm not a fan of surprises.

I should really qualify that by saying that I like good surprises, like birthday cakes and handmade cards and discovering that there are some chips left. I also like all the new things that my kids come up with to amaze me with. What I don't like are completely huge, mind-blowing, turn-your-whole-world-on-its-arse surprises.

After less than stellar week with appointments and whatnot, I was left feeling a little drained and a whole lot blue.  I was tired, sure, as I've been since I conceived my eldest, however this was different.  I started to wonder if I was depressed, actually.  I'm also never really sure what the universe is trying to tell me either, as I went in for two very long, very intense twelve hour day shifts--those days that completely tug at your heartstrings whilst simultaneously sucking what is left of your brain out your left ear.  There were quite a few things that hit a little too close to home and I found myself in a bit of a spiritual dilemma in spots, including my advocacy and this membership card I have to the special needs mom club.  Any or all of these things are fertile ground in which the seeds of despair will sprout.

Thursday morning found me looking after the babies as Sean picked up a few groceries.  It was my "turn around day", namely the third day of my tour where my days become nights and I have a morning "off" [read: to get a few things done].   Wyatt and Zoe were puttering around me in the living room and I was considering making us an early lunch when the phone rang.

It was Sick Kids.  If you remember our recent trip down there to see the cardiologist, we were told that if the surgeon opted to repair Wyatt's AVSD (now ASD) this year, we would get a call in three to six months to book our pre-op tour.  You can imagine my surprise when I picked up the phone to find out that Wyatt had been officially presented already and the surgeon was now looking to book him.  I was kinda half listening and half trying to find a pen (and trying to get away from the noise of the kids) when she started giving me potential dates.  I was also absentmindedly trying to remember if I had anything major happening near the end of summer or fall where I expected the surgery dates to be.  She tossed me the first date:

"Valentines Day, February 14th."

(What the hell did she just say?...)
"This year?"  I squeaked at her.  "As in next week?"

"Yeeeaaaaah...." [Very Lumberg-esque]

Whatever melancholy was plaguing me was completely gone and I was now in full fledged panic mode (all the while looking around to see if I was being Punk'd).  I am (surprisingly!) off for Valentine's Day this year and had made plans to bake cupcakes and get completely gooey with the kids.  Realistically, there was no way in hell I was going to be able to organize the time off and the necessary arrangements to be able to pick up and live downtown at his bedside for almost 10 days.  Not to mention the day itself is more than slightly ghoulish and two days before their birthday.  He was not spending their birthday in the hospital.  It was just not going to happen and I told her so. 

The next few dates she offered up were in March and not much better.  I explained to her that I only had a limited amount of vacation time in the bank at present (I do get 5 weeks a year now, but I had cleared it out in anticipation of saving up for a late summer or fall surgery date).  After a back and forth between her and my husband on his cell, we finally settled on April 3, with a pre-op of April 2nd.

April 3rd. 
Just over seven weeks.
Holy f☠cking sh☠tballs!

I know this day has been coming since his diagnosis a month before he was born and I'm all for the "sooner rather than later" philosophy.  I've also seen the leaps and bounds my son has made since the VSD has closed; imagine how awesome things will be once he has the ASD and the valves repaired as well.  I also have read, seen and heard hundreds of parents like myself who have been through this with their child and everyone has come out the other side for the better.

But, that doesn't change the fact that in this relatively small amount of time, I have to move heaven and earth to get ready.  At the same time, despite the practical, nurse part of my brain rationalizing how well much easier this will be, the mommy part of my brain is quite noisily going mad in the corner.  Once upon a time, I said that finding out about his heart issues was the hardest day of my life.  Now we are finally here and dealing with all of this, I really am starting to know what 'hard' actually looks like.  It's not a nice feeling.  Not at all.

As I mobilize our support system, I only ask one thing:  say a little prayer, sprinkle glitter, light a candle, shake a chicken, whatever it is that you do... and think of us here at Team Logan.  The next little while is going to stretch already taught nerves.  The storm I spoke of at the start of this year is now blowing in.  I can't help but watch the clouds roll on the horizon, while hoping the supplies hold out.

Join the Revolution

Monday, February 4, 2013

Playing It By Ear

It wasn't a good week for appointments.

After riding high off our Sick Kids news, I guess we got a little too ahead of ourselves.  We only had two appointments last week and they were both local (which made it seem like they weren't any big deal somehow).  Only one of them was for Wyatt and other than some anticipated possible friction with his ENT, it was all supposed to be a breeze.  Sadly, it didn't turn out that way.

Thursday morning, I finished off my last night shift and came home, only to turn around again and go to the dentist.  As I've mentioned a few times before, I'm having a lot of restorative dentistry done;  after my pregnancy with the twins I basically had the teeth of a bulimic.  We've also been delinquent in taking Quinn lately, so we both went.  I brushed and flossed and we loaded up the Whaaambulance to go.

Quinn was in the hygienists capable hands, so the coast was clear for my dentist to bring out the scary needles.  Since we were working on a few things on the bottom right side, she explained where and when the freezing had to go in.  I felt the shock in the tip of my tongue as she put the needle into the back of my mouth;  I started to laugh as I felt it zap again on the way out.  I was about to comment on how cool that was when my chuckle quickly turned into a cough.  As I was being sat up in the chair, I felt my heart start to pound, my chest became heavy and my vision began to blur and go grey.  I guess a little of the epi had snuck through into my bloodstream or my sugar had dropped dramatically (or both) and I felt awful.  I could barely articulate what was happening and half-mumbled in agreement that they should bring me some juice.  My hands were shaking so badly that I couldn't open the juice once it got there, or the straw that they handed me.  I quickly drained two small bottles and was relieved to see my vision start to clear up.  A few moments later, the crushing feeling passed and we got on with the task at hand.

We were 3/4 of the way through the work when all that juice decided to make it's presence known again.  I tried not to wiggle and squirm for a while, but had to let them know that I had to go now.  We got to a point where we could pause for a moment and I dashed off to the washroom.  Once finished, I ran back and sat down, slightly out of breath.  The hygienist put her hand on my shoulder.  "How are you feeling now?" she asked.

"Whew!  Much better!" I answered, thinking she was referring to my bladder.

"Oh." she answered, her hand still on my shoulder, her face all concerned. 

"Why?" I asked.

"Because your lips are blue", she answered.


A warm blanket and twenty minutes later, my lips were no longer blue and my teeth were finished. Quinn was quietly reading a book in a chair at my feet (after entertaining half the office with his knowledge of the human body).  I swore to myself and my dentist that there were to be no more appointments after night shifts.   I'm getting older and they just mess with your body too much.  Also, I promised I would eat breakfast next time (my last intake had been 5:30 am).  Quinn and I settled accounts, bundled up and we walked outside.

Into a blizzard.

I had seen the first flakes start to fall from my seat in the dentist chair, yet they had been forgotten in the ensuing shenanigans.  This was a bit of a surprise as it hadn't been mentioned on any of the weather reports I had heard that morning.  Quinn and I stumbled through the swirl towards our white van and Sean drove very carefully home, as we couldn't see 5 feet in front of the vehicle.   I was in my own little blizzard as by this point I was completely exhausted and sore.  I took some Robax once we got in the door and I truly don't remember my head hitting the pillow.  Next thing I knew, it was dinner time and the mad scramble that is bedtime in my house.

Friday was an even earlier morning as Wyatt had an appointment with his ENT at 8:30.  With the twins, we make a point of getting the first appointment of the day as it is less busy, less stimulating and generally goes a heck of a lot faster.  We got everyone up, fed, changed and dressed, Wyatt and I were dropped off right at 8:30, Sean continued on to drop Quinn at school and then the plan was to meet us there with Zoe afterwards. 

It would have been easier for Sean and Wyatt to go, while Zoe and I took Quinn to the bus stop, but Sean did not have a very good experience the last visit and I thought I'd intervene and check things out.  It's a scary feeling when the expert may not have your best interests in mind (or in this case my son's) and I wanted to make sure that was not what was happening here.

We sat there, in his office waiting room for a very long time.  For your average person, this doesn't pose a problem.  If it was me alone, it would have been annoying, but still do-able.   Wyatt was now raring for his morning of fun and was in no mood to sit in a stroller.  He wanted to practice his standing and roll about on the floor and I couldn't let him do that.  We played patty cake, we sang songs, we watched Elmo and baby signs until my phone battery threatened to die.  We tickled, we giggled.  Even the receptionist got into the game and peeked around the counter at him (and he peeked back once she had returned to her work).  At 9:15, a full 45 minutes after my appointment time, the doc sauntered in and did a quick scan of the waiting room on the way by.  Before Wyatt's name was called, I leaned around and asked the receptionist if it was always like this and at her nod, I informed her that I would make the next appointment for 8:30 but I would be arriving at 9:00.  She nodded sympathetically and said something about "having to check in" to which I responded "I can do that by phone".  Wyatt's name was called and I hauled him into the office where we plunked down in the chair.  Already this morning was not off to a good start.

After the first attempt to visualize Wyatt's eardrums failed, I had to hold him sideways and secure his hands and head so the ENT could pick at his ears with a slender instrument.  What he brought out was minimal, but he still could not see Wyatt's eardrums.  Already wailing, we had to 'extract' my poor boy's ears and then hopefully see things better with the microscopic lenses.  It went without saying that he was going to hate it.

We took him into the next room where I laid my crying son on a table.  He has not had very good experiences on tables covered with paper lately, so this new place made him howl a little more.  The receptionist/nurse came in and held his face while I held his hands so the ENT could basically rotor-rooter out both of his ear canals.  Wyatt screamed as I nuzzled and blew on his tummy to try and distract him a tiny bit (while trying not to lose it myself). The nurse murmured sweet things into his face as we did first the one ear, then rolled him over for the other.  Once the Doc had a look at both ears with the microscope, he shut the array down with a pissed off snap and declared that we were going back to the other room.

On the way back, I looked at my son's tearstreaked face.  He had miniscule red dots, petechiae, on both cheeks that went up over his eyes to his forehead.   They were on the tips of his ears where the doctor had held them to do the extraction.  I wasn't happy and neither was Wyatt who continued to howl loudly into my shoulder throughout the delivery of the results.  It turns out that there appears to be fluid in at least the left ear.
He wasn't sure, but that's what it suggested.  At my look of shock, he mentioned the colds and flus that Wyatt had recently had.  I explained that we had sought medical help, he had his ears examined several times and been on antibiotics at least twice.

I'm not sure what happened, perhaps it was my rapidly reddening face or the tone I was using, but he suddenly changed his approach a bit and explained that "Down's kids" (UGH!) are notorious for small ear canals, but Wyatt's are extra hard to see as they are not easy to straighten out, due to some extra twists and turns.  The only person who could see his eardrums would be him, with his specialized equipment.  [Read:  walk-in doctor who pronounced his ears as "fine" is a liar].  I asked if due to the nature of his ear canals was there a problem with them self cleaning, to which he responded no, but a miniscule flake of skin or a tiny bit of wax would mean the difference between visualizing the ear drums or not.  I nodded, still trying to soothe the crying toddler snuffling in my ear.

What he said next, for some reason, shocked the hell out of me.  Due to the potential...
possible ...presence of fluid behind the ear, it would be best to put Wyatt on the waiting list to put tubes in his ears and have a pre-op appointment 4 weeks before.  If at that appointment, there was no evidence of fluid, we could take him off the list.  I nodded, knowingly, but it was evident that I wasn't happy at all about this.  He had the nurse/secretary call the audiologist upstairs for Wyatt to have a non invasive wave test on the spot and we were sent to the waiting room.

By this time, Sean and Zoe had arrived.  Zoe was busily charming the waiting room, yet became very upset when she saw the state of her twin.  She would not be comforted or calmed either and Sean and I traded kids to see if we could do any better with the other.  The audiologist came upstairs, I took Wyatt back and held him on an angle while she placed what looked like a thermometer in his ear.  Then we repeated it for the other side, him screaming again all the while.  We tried to collect ourselves in the waiting room once more --- as Zoe ran around screaming and Wyatt cried --- and I started to fill Sean in on what had transpired so far.  I hadn't gotten two very far when we were called back in.  Everybody went in this time, a fact that seemed to take the Doc aback when he saw my large husband and the not so happy look on his face.

This wave test was also inconclusive.  So, without further ado, Wyatt was put on the wait list for tubes for the...
possible ...fluid behind at least one of his eardrums.  I signed all the surgical papers and we headed out.  They will call us 4 weeks before his name comes up.  The wait list (as it is considered elective) is currently sitting at 6 months, so that will buy us some time.

I stomped down the hall towards the elevator, simply furious. Sean gave me a questioning look and all I could get out was some nonsense about breaking in my new winter boots on the walk-in doc's genitalia.  It's hard to totally grasp what I was so angry with at the time, but I was completely inconsolable.  I was angry with the one MD who lied to me and said his ears were fine. (Malpractice or just plain prejudice?) I was angry that my baby had to be restrained for something that obviously hurt and scared the living daylights out of him (and emotionally hurt me).  I was angry with the ENT for his bitchy, prima-donna attitude and angry that Wyatt's ears were probably going to need surgery.  I was angry with the medical profession in general, for dismissing people with DS out-of-hand and not seeing them as individuals with individual challenges.   I know there is a high predisposition for certain illnesses that come with the extra chromosome, trust me.  I've explored and written about it ad nauseum.  That doesn't mean that the Walk-in clinic Doc's negligence or even the (generally well meaning) ENT's less offensive attitude of "Well, he's a Down's kid, so what do you expect..." should be allowed to continue.  [You will also note the lack of person first language]. 

Most conditions have a higher incidence in one population or another, but you don't hear a lot of: "Mrs. Jones, you've got breast cancer.  You're Caucasian, so it's to be expected."
Or: "I'm sorry Mr. Smith, it's diverticulitis.  You're an older man, so these things happen."
Even better, how about: "'s Schizophrenia, sir and since you are new to this country and poor, you're son's chances of maintaining his medication regimen are slim.  He will probably end up on the street, in jail or dead within the next five years.  Whether it is by his own hand or not, it is hard to say, but he's a schizophrenic.  He won't amount to much."
Those conversations don't happen.
But, if your kid has Down syndrome it's: "what do you expect?" or some rationalization about life span (which, as a side note has gone from 25 to 65 years in one generation alone and is steadily climbing).   One mother on our Down syndrome Uprising page was told by a resident after her daughters stroke at age 13, that because she has Down syndrome "she has lived half her life already" (that was a scant 5 years ago; her daughter has flourished since then).  Kari at a typical son was told that her son was being referred for osteopathic treatment thusly:  "Since he is retarded it isn't like it will help or hurt him so I will make the referral." Shannon at Love life and be gentle was asked by the audiologist when her son was getting earplugs (exactly like Wyatt will need to for swimming) if she was sure if she wanted to "waste" the money "on a kid like him".  It's shocking to hear, but it happens all the damn time.  Sometimes it's overt like this and other times it comes out as "what do you expect?"

Our ENT isn't so bad, all things considered.  He has also gotten George-Clooney-in-ER bitchy in the past when he believed, for an ill-informed brief second, that we were not putting the mineral oil drops in Wy's ears.  What we thought was prejudicial behaviour turns out not to be, as he's just really arrogant. He does however, need to understand how disrespectful his choice of not using person first language is.  That walk-in Doc can DIAF as far as I am concerned, however.  Team Logan has had it pretty good so far with it's medical encounters;  many families I have come across cannot say the same thing.   The underlying prejudices are still out there and I am saddened to hear that they outweigh the positive encounters.  Many people are predisposed to a multitude of conditions due to their racial, cultural or socioeconomic backgrounds.  That doesn't mean it is automatically going to happen, just statistically the odds are higher.  It doesn't mean you can discriminate.  The same goes for our friends with an extra chromosome. 

I know having tubes in the ears isn't the worst thing ever;  mine is the kid that still needs his heart repaired at some point.  I've stood in the OR and seen tympanosomies first hand, taken care of the kids afterwards and known children in our extended family that have had them done (and suffered no apparent ill afterwards). I can see myself writing a post on it as we get closer to the date.  However, Wyatt's case is a little more unusual that your average run-of the mill kid prone to ear infections. Due to the size and shape of the structures of his ears, it will be more difficult to perform the surgery in the first place.  This fact the ENT stressed with an incredulous look on his face and a bit of hand waving, thereby driving the point home. Then there is the general anesthesia to consider as well, in a child with an AVSD (now ASD) and the complications that may arise from that.  As well, there is the risk of infection with the grommets in;  any swimming or submerging of his head will require ear plugs to keep water and infectious agents out of there.  Tubes are also notorious for clogging or simply falling out; it would be awful to have to do this more than once, or have him get a horrible ear infection that makes him lose his hearing anyway.  Essentially, it's a lot more "what ifs" piled on a precarious foundation of "perhaps".   Sorry, not a fan.  Not.

I will be hoping that the fluid, if any, is just residual from his recent bouts of colds/flu/bronchitis and that by the time his appointment rolls around this will be a thing of the past.  In the meantime however, I am going to make a point of talking to the ENT, about his office hours and a few other things at the next appointment.  Wyatt's petechiae are starting to fade, so hopefully my nagging fear about his platelets will do the same.  I have one more marathon appointment at the dentist coming up (that is not after a night shift) and after that, any and all decay will be dealt with and we can move on to happier things and a brighter smile.  In the meantime, we'll play it by ear as it were and try to stay as healthy as possible.

We're also hoping that this week is a lot better. The waffles helped a bit.

Waffles and Petechiae
This was the next morning.  The spots over his eye had faded a bit.

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