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.

Shit!

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.
Probably.
Possibly.
Maybe.
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...
probable,
maybe,
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...
probable,
maybe,
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: "...it'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.

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

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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.
 

What a Long, Strange Trip it's Been

The last little while has been a complete blur of appointments and late nights.  Copious amounts of carbs have been consumed (and cheese, most often together).  Much sleep has been lost or interrupted.  Tempers have been a bit short on all accounts, including both of us, the kids and the people that we have had to interact with.  At various points, this past week has seemed to never want to end.

It started the day after the birthday party (Monday, April 23rd).  We had an OT visit where several things were looked at in detail.  One, how well Wyatt's mobility has come along in the last few weeks.  Since the last update, he can make his way across the floor, half dragging, half commando crawling.  We have not seen him sit up (by himself) since the party, however he has come very close several times.  It's probably like the rolling thing;  we won't actually see him doing it for a while.  We'll just look over and assume he just teleported, or in this case, was magically repositioned while we weren't looking.  We are trying to get him to understand what his legs and feet are for (other than additional hands);  we have a variety of sitting/kneeling/bent over positions for him to practice and to get used to putting some weight on his legs.  So far, not much, but we are trying.  Point of interest number two:  how far his eating skills have come in the same amount of time.  We talked about finding a good time for another speech-language assessment before the OT left.  We should have an appointment by our next visit.

The following day (April 24th) meant an appointment with the pediatrician for both Wyatt and Zoe.  I don't know about you, but a snotty receptionist can really set me on edge.  This one in particular seems to have majored in Passive-Aggressive with a minor in Bitch.  The day before, she had telephoned to confirm our appointment.  During that call, no actual appointment time was mentioned when she spoke to my husband; I assumed I had the correct time listed in my phone.  You will imagine my surprise as I blustered into the office, 15 minutes early (for a change!) only to be met with cold silence.  Once I had dug out our health cards and settled my daughter (who had just had what could only be a harrowing stranger experience in the elevator with a kindly old man who told us all about his twins), I turned to face the receptionist.  She barely made eye contact, quickly scooped up the cards and said quietly "I just called your house."  "Oh?"  I answered, confused.  "What's wrong?"  "You're half an hour LATE!" she informed me in clipped tones, barely containing her hostility.  I whipped out my phone to check the times and surprise, there was no match.  For some reason, our appointment had been moved to 9:45.   My husband (to the receptionist's surprise) walked in a minute later and reminded her that she did not mention a time on the phone and therefore, did not confirm the appointment properly. Mistakes had been made all around.  There was another period of awkward silence, where I prepared to get comfortable in the waiting room as I figured she would now make us wait.  A few minutes later, she approached the babies with artificial sweetness and told us that it was time to come in.  We maneuvered our beast of a stroller through the narrow hallways into the exam room and began to get them undressed for their weigh in.

Aside from that little bump, the rest of the appointment went well.  There was no one else in the office at that time, so the doctor was able to see us.  Zoe now weighs 9.14 kg (20.1 lbs) while her now little brother Wyatt weighs 7.95kg (17.49 lbs).  They are both small for their age, at 70cm (27.6 inches) and 67cm (26.3 inches), respectfully.  Their big brother Quinn was 25 inches at birth, just to offer up a little comparison.  Both rank somewhere in the 5th percentile for height on their respective charts (although Zoe has crept up a bit in the weight department).  Numbers aside, both are happy, healthy infants who are doing well in their own way.  Wyatt attempted to sit up while we were there, which made the doc happy.  Zoe wasn't too keen on walking barefoot on a cold floor, so she did not get to show off her running prowess.  The doc made sure that we got an actual appointment card this time and we took our leave.

Wednesday (April 25th) was the ENT.  Sean took Wyatt by himself, as it was an early morning appointment and it interfered with Quinn's schoolbus time.  I was expecting the boys home shortly after 10 but they didn't arrive until 11:30 or so.  I was a bit confused at first, but Sean explained that our bad doctor karma from the day before had spilled over into this appointment as well.  Although they were on time, the ENT was not.  After sitting for almost an hour, the doc wandered in the front door, ignored what was now a packed waiting room, went straight to the back and had the first patient sent in. It was apparent that he was in a shitty mood by the time Wyatt's name was called;  he then proceeded to take it out on Sean.  We haven't been exactly diligent with remembering to put drops of mineral oil in Wyatt's ears (to keep the wax loosened) and the doc let Sean know a little more brusquely than necessary that this wasn't cool.  In fact, his tone suggested negligence.  He even went so far as to accuse Sean of using Q tips on him which, if you don't know, are a no-no with ears as they are self cleaning (Q tips just impact the wax).  Sean tried to explain how we never use Q tips and clean only the external ear and when that was completely ignored, he half-desperately threw in a "you know my wife is a nurse, right?"  for good measure.  This all had very little effect on Dr. Grumpypants who continued by demanding to know when Wyatt had a specific hearing test done.  We do keep on top of all his hearing appointments, but lets face it, we have no idea what exact tests are taking place, just what the results are at the end.  This was not an acceptable answer either and prompted him to place an angry call to the audiologist's office. After extracting the gunk from Wyatt's ears (which, wasn't too bad at all), the boys were then sent back to the waiting room to wait.  During that stay, Sean overheard the secretary talking to the audiologist's office and learned that the specific test that the ENT was peaking about was not done at the last appointment... as it had been done at the one before.  This fact would have been apparent if he had bothered to read Wyatt's chart. A more sheepish ENT called them both back in to let them know the results of the hearing test and that based on that information and the examination that he had just performed, Wy's ears are just fine, thanks.  See you in 6 months.

Flash forward through a whirlwind of my 6 year old's actual birthday (April 26th), one twelve and one 16 hour night shift (April 28th and 29th).  It was now Tuesday of the next week (May 1st) and time for Wyatt's sleep study at Sick Kids.  Prior to this, we had to fill out a sleeping/eating log for 10 days;  it was only through some miracle that I remembered to yell at someone at the last minute to grab it as we were going out the door.  Even for overnight, I had to take a lot of stuff for me and one baby.  Jammies, diapers, wipes, cream, pillows, emergency bottle, Tylenol, toys, 'whoosh whoosh bear', the stroller to push all our stuff around in... plus I brought the laptop "just in case".  Although it turns out that there is a complementary TV in the room (and free WiFi!), I wanted the ability to play a movie or write/fool around on the internet if I couldn't sleep.  I figured that, much like sex in the champagne room, there was no sleep in the sleep study.  I had no idea how right I was going to be. 

It was a good thing that we arrived early as it gave me a little extra time to get lost.  It's a pretty straightforward hospital in most respects, but you have to trust me, getting lost is a specialty of mine.  Sean claims that I have a compass in my head like everyone else, but unlike everyone else, mine is broken and just spins.  I do make up for this with my map skills...  To prove this point, seconds after I discovered a wall map, I found the Atrium and the elevators that I needed.. 

Sick Kids is a fabulous place... I have mentioned this before.  The main elevators are a sunny yellow and the whole place looks like it was designed by a toymaker.  However, if you have vertigo like me, it's a little unnerving getting from the central elevator hall to one of the quads. 

You can see the yellow elevators on the left.  Photo courtesy of skate_simmo

We were greeted by our Tech who assured me that they do sleep studies on babies all the time. In fact, last week he had three babies there at the same time (the lab has four beds).  We were shown to our room and I set everything up while Wyatt got to play in his crib a bit and stretch out after the car ride.  I realized somewhere during my exploration of the room that psychiatry has ruined me:  the entire time I was setting up, all I could think of was how unsafe the room was.  Including the closet, which was just the right depth and had a bar in there that someone (small) could hang themselves with.

Our room.  My daybed is in the back there

My bed.  I've slept on a lot worse, trust me.  For my convenience, I'm right next to the hanging closet.

Baby logistics is another specialty of mine.  Knowing that I had to feed him for him to go to sleep and assuming that there was a tangle of wires in his future, I had to work out how we were going to do this.  Our Tech and I talked about it and he would come back to wire my son up when he started to look a little sleepy.  I tried to make Wy feel as comfortable as possible;  he had a few toys there, a few homey smells and I set up the laptop and streamed some music for him (they have a radio on all night for noise and company).  He started to look a little droopy and I called our dude in to (literally!) hook us up.

For those that don't know, during a sleep study you are monitored for quite a few things.  Your heart rate, your breathing and your oxygen/CO2 levels are important.  They also monitor brain waves so that they know how asleep you really are. Finally, they monitor movement, to see how restless you are.  Basically this translates to an ECG, an EEG and an oximeter.  There was also a camera in the room and an observation window if needed.

In total, there were about 20 'leads' or wires about his little person.  Two on each of his legs, four on his chest and the rest on his head.  There was also a O2 sat (oximeter) on his toe an a CO2 monitor on his chest (that was relocated to his back in the middle of the night).  He looked like a little Borg.

Resistince is futile.  (He's not crying BTW, just mid-babble)

He got a little Teletubby hat made out of some Surgifix (stretchy tube mesh that they put over IV's and lines and things) to keep the wires on his head.  The Tech put a towel over the lead box on the bed hoping that Wyatt would forget it was there and I was given the OK to feed him.  I set up shop beside the bed, gingerly pulling on the wires all the while hoping there was enough slack.

He wouldn't sleep for love nor money.

Usually he falls asleep during his bedtime "snack".  No dice.  I whipped out a bottle of homogenized and heated it up for him.  Nope.  At one point I  turned on the end of the hockey game, hoping he'd get tired (he watches a lot of hockey with Daddy if he can't sleep at night).  We called Daddy, we sang songs, we rocked, we burped, we got Tylenol.  Finally, about 10:30 he went to sleep in my arms.  I carefully tucked the towel underneath him so that he would not immediately roll on the wires (or catch them in his sleep), put up the side rail and tiptoed to my cot.  I didn't realize how tired I really was until my eyes closed while I was typing on the laptop.  I shut everything down, pulled the blanket over me and drifted off. 

At 2 am I woke to him stirring and was at his side a minute later when he started to cry.  Once he is down, Wyatt does not wake up in the middle of the night unless he is sick.  What I found when I got there was pretty much heart stopping:  all the wires were wrapped around his neck.  I sat my crying boy up and started to gently un-garrote him;  he looked like a kitten tangled in a ball of yarn.  At one point I had to go get the Tech for help as I was afraid of dislodging everything.  It took a bit, but we were able to free him from his wire-y prison. 

I am sooo tired!  I also HATE this hat!

For his trouble, he also ended up with a nasal cannula, which he also hated.

This thing is 'teh suck'.

You can bet that he was wide awake after that, so I put the radio on over the phone and held and rocked him.  He kept trying to pull out the cannula and that one purple wire in the photo above, so the only thing I could do was to put him on my left shoulder, tuck his one hand into my armpit, hold him (under the wires) under his bum and hold his other arm down with my right arm as it held him over the wires.  And rock.  Which I did...  For a solid hour.  I thought he was asleep at one point and tried to put him down but it didn't work as he was crying and rolling and threatening to get tangled up all over again.  Finally, he was a sleeping rag doll again around 3:15 and I tiptoed back to my cot.  I had a hard time settling as well;  I think I got back to sleep around 4, although I woke up several times to unfamiliar hospital sounds.

My eyes opened again at 10 minutes to 6, so with a sigh, I started quietly packing up the room.  The test ended at 6 and our Tech was there promptly to unhook Wyatt from his torment.  We turned all the lights on and found my little lamb sound asleep.  I hated to wake him up but it was time to go.

Wakey, wakey Wyatt.

The conductive jelly that was in his hair, despite the reassurance that it was water soluble, would NOT come out with warm water and a cloth.  I got him dressed, packed up the room, stripped the beds and was out by 6:30.  I managed to get lost a completely new way before (gratefully) finding the Whaaambulance and my family waiting for me outside the Elm St. entrance.  We rocketed home in the fog and by afternoon, all 5 of us went down for a nap.  After a nice bath, Wyatt also had 95% of the tape and goo out of his hair.

My week did not end there as I had a 12 hour night shift the next night (May 2nd).  I also start a new 4 day tour tomorrow (May 5th) but the kids have settled back into their routine.  I won't know the results of the study for a while.  In fact, I'm not sure how I will find out exactly;  we will probably hear from one of his doctors and/or get a phone call or a letter.  I do know that while I worked the night away, everyone slept very well at home, in their own bed. 

It's been a busy, crazy, cranky and tiring spell for Team Logan, but we have come out the other side of it.  I know I will be happy to see Wednesday morning (May 9th), when I start my next run of 5 days off. One of the good things about blitzing through a bunch of appointments is getting them all over with... which we have, until the next go around in a few months time.  In the meantime, we won't be idle waiting for results.  Instead, life will go on as it does for my raucous household.  Full of laughter, life and love.

Now that's worth the price of a few crappy nights sleep, isn't it?

Makin' Progress

Busy, busy...

It has been such a busy week with Team Logan.  We have updates, we have birthdays, we have goals.  We have cupcakes.  What's better than cupcakes?

Wyatt went for his one year hearing test a week ago and did very well on all accounts.  As yours truly was working, Sean had to take both babies by himself.  Wyatt did not have to be asleep for this test (thankfully); I think that would have been almost impossible to achieve. You may remember from the last audiologist appointment that Zoe screamed loud enough to be heard inside a soundproof room.  She stayed true to form and did not disappoint this visit either.  However, despite the not-so-ambient noise from my daughter, the audiologist felt that Wyatt's hearing was within normal limits except for one small area which was inconclusive.  She was unsure as it could have been Zoe's interference and distracting abilities or just Wyatt deciding not to respond to the sound.  Regardless, we took it as good news.

The very next day was their first birthday.  Although I did blog a bit of a retrospective in the morning, the afternoon and evening were spent with the babies.  Lots of pictures were taken and vids were shot.  Both Wyatt and Zoe loved their first taste of cake, which wasn't anything fancy.  For Quinn's first birthday I went all out and made a special no added sugar, no egg thing that tasted vaguely like raisin bread.  This time around I didn't have time (or the desire, frankly) to make anything like that, so instead we opted for angel food cake cupcakes (with confetti sprinkles) and whipped cream.  Naturally, they loved them. 

Babies Eating Cupcakes.  YUM!

Saturday was their birthday party.  Unfortunately, we woke up to a blanket of snow.  That meant that most of our party guests (who were coming from out of town) were unable to make it as they were pretty socked in.  It's February.  In Canada.  What can you do?  We still had a great time with the few that did come and the babies were thoroughly fêted.   

Aside from cake, they've explored quite a few new foods and textures lately.  Both are crazy about cheese (cottage and cheddar) and were treated recently to their version of mac n' cheese (just don't tell them it has pureed cauliflower in it).  They've attempted very small pieces of cooked broccoli;  Zoe was nonplussed while Wyatt thoroughly enjoyed it.  That is, until I discovered that he was just stashing it in his high palate.  Pancakes, raspberries, watermelon... and the list goes on.  The biggest change in their diet this week has been switching them from formula to homogenized milk.  They are still breastfed most of the time, but their diet was supplemented with formula when I was at work and with a small "top up" at night.  That has been switched out to milk and thankfully, everything is well so far.  Next up:  eggs.

At our session this morning, we discussed future goals with Wyatt's therapists.  At six months, we hoped that by this time Wyatt would be sitting independently (while bracing himself), propping himself up on his hands while on his tummy, pivoting while in that position and starting to commando crawl.  As of this morning, he can sit up independently while braced for 5 minutes (and without bracing for a short period of time).  He props himself up on his hands while on his stomach and can pivot slightly less than 90 degrees.  His rolling has improved to the point where he can log roll non-stop and in both directions.  He is not crawling, although he did demonstrate a little "going backward" today when he was trying to reach for a toy (and was able to "push off" of his worker's hand and slide forward to reach his goal).  Everyone is pleased with his progress overall.  Today we set new goals:  Hands free sitting, pivoting 90 degrees, backwards or forwards commando crawling and feeding himself more independently.  The last is a bit of a tricky one as he is quite content to grab a handful of my hair or another foreign object and put it in his mouth but not food.  He picks his solid food up, plays with it, but if he eats it, generally it is because we are putting it in his mouth.  I think it's just a matter of proper motivation, as I turned my back for a second on Saturday to help a party guest with something and turned back to find this:

Wyatt's Ninja Noms

No one can resist a cupcake.  No one.

Slowly and carefully, Wyatt is developing, albeit at his own speed.  He is strong and healthy and continues to delight anyone in his presence.  At one year in, we know we are still new at this;  it will probably get a lot harder as he grows older.  Right now we are progressing and that deserves to be celebrated.  Quite possibly with cupcakes.

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I've also done a guest spot on "Life with Penis People" this week.  Stop by, say hi to Danielle and read my post "A Little Longer and a Little Different".  You won't be disappointed.

Speak to Me

Speech can be very difficult for those with Down syndrome.  Due to delays in memory and aural learning, as well as co-ordination issues due to lack of muscle tone and control, speech  develops very late compared to "typically developing" peers.  Most actual speech therapies start after the first year (about 18 months of age), which begs the question, what can be done in the mean time?

One of the areas that you can work on with your infant is developing the face and mouth.  These are the same exercises that one would use to strengthen the facial/mouth muscles and increase sensation in preparation for eating.  These techniques are courtesy of ICDSP:

Facial massage:  Using two fingers or your thumbs, stroke the baby's face from the upper cheek close to the ears down to the corners of the mouth.  Then, stroke down from under the nostrils to the top lip.  (Do this 3 or 4 times a day before eating)

Palatal massage:  Insert a clean finger into the baby's mouth and stroke the roof of the mouth (the palate) from the middle to the side, stopping at the gum line.  Return to middle and continue to other side; repeat 3-4 times prior to every feed

Gum massage:  Trace along the gums with firm pressure from the front to the back on each side, top and bottom.  Do this 2 to 3 times, twice a day.

Chewing/Toy Mouthing:  introduce and encourage the child to use a variety of teething rings, soft toys and feeding utensils;  introduce horizontally and to the side to encourage biting of the toy.  Do this 3 to 4 times, each side.

Along with these techniques is the single most effective tool to strengthen the oral muscles:  breastfeeding.  As it provides more resistance than bottle feeding, it encourages the development of the muscles of the lips, cheek and tongue and enhances the coordination of these with breathing.  Soother use is also encouraged for this reason.

Another area that can be worked on is sound recognition.  As children with Down syndrome are primarily visual learners, the goal is to help the infant link sound with facial expression.  When the child is alert and relaxed, find a comfortable position that places both of you at eye level.  Remove any background distractions such as a radio or the TV and make eye contact with your child as you make sounds.  As you make each sound, monitor your baby for any reaction.  Encourage repetition by repeating any sounds that he or she makes.  You can make non-speech sounds (which include clicks, pops, "raspberries", etc) or speech sounds (which are repeated consonants or vowels or combination).    Make exaggerated examples slowly and clearly to help the baby hear and react to the sound.¹

Talking, singing and playing with your baby face to face will also encourage the little one to pay attention to sound. Ensuring optimum hearing through frequent assessment will also help them acquire language. 

Although statistically, many children with Down syndrome do not learn to talk until much later than their typical peers, it is possible to help them prepare for this eventuality.  By encouraging strong facial muscles along with memory, speech and language skills, the child will be able to speak more clearly and have an increased vocabulary.  Which, is extremely important for those very first spoken words. 

I won't say "Mama" for a while yet, but it will be phenomenal when I do.

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1.  Courtesy of R. Grey, Speech-Language Pathologist at Trillium Health Centre:

Down Syndrome and the Developing Child

One of the most common questions I get asked is "how is Wyatt developing?"  When I don't have an easy, static, predictable answer (such as "he's working at a ____ month level", for example), I get a lot of confused looks.  With that in mind, this Teaching Tuesday is dedicated to development in the child with Down Syndrome, from birth to 5 years of age.

Each child with Down Syndrome is different.  Although all with Trisomy 21 share a third copy of the 21st gene (for example), how that gene expresses itself varies from child to child and is unique to him or her.  This also applies for both Translocated and Mosaic Down Syndrome.  As the physical aspects vary, so do the developmental delays that each child faces.

It is also important to understand how children develop.  Most children acquire and hone new skills and achieve 'milestones' that are not a result of direct teaching (with a few exceptions, such as counting, reading and toilet training).  Instead, children learn in the family setting, by being encouraged and modeling behaviour in a social environment.  Parents shape appropriate behaviour, language and actions by being sensitive and responsive to needs and rewarding where this has been achieved.  A wide range of learning and social opportunities are explored in the context of the family, as well as through books, toys, outings and social interactions. (Buckley, Sacks, 2001) By comparison, children with learning disabilities may have to be actively taught certain skills due to their individual deficits.

Children with Down Syndrome do have a set of general strengths and weaknesses;  these will impact on the child's ability to learn and grow.  The following developmental profile for Down Syndrome is courtesy of "An Overview of development of infants with Down Syndrome (0-5 years)" (Buckley, Sacks, 2001)

Social Understanding and Interactive Skills

• Relatively strong and less delayed (compared to speech and language)
• Can make eye contact, smile, coo and babble from early months
• Socially sensitive and understand non-verbal cues (facial expression, tone of voice, body postures) in first year

Motor Skills

• Most (such as reaching, sitting and walking) delayed
• Main milestones are steadily achieved
• Most children become mobile and independent in self-help skills (ie: feeding, dressing)

Speech and Language Skills

• More delayed than non-verbal understanding and reasoning
• Most understand more language than they are able to express (due to speech production difficulties)
• Signing helps majority of children to communicate (and reduces frustration)
• Hearing problems are common and contribute to difficulties in this area
• Speech is most serious delay as it impacts all areas of mental and cognitive development

Working Memory Development

• Impairments with verbal short-term memory
• Impacts on child's ability to process information

Visual Memory and Visual processing

• Relative strengths
• Auditory processing and memory more impaired
• Visual learners;  use visual aids for all teaching

Reading Ability

• Often a strength (as early as age 2)
• Builds on visual memory skills
• Reading activities can be used to teach spoken language 

Numbers

• More difficult
• Delayed when compared to reading

Social Behaviour

• A strength
• Less likely to develop difficult behaviours than other children with cognitive delays
• More likely to develop difficult behaviours than typical children of their age

Not surprisingly, there are different developmental guidelines that have been established for children with Down Syndrome.   Among those are Milestones for Children with Down Syndrome (Buckley, Sacks, 2001) and a series of growth charts that are Down Syndrome specific (Courtesy of the American Academy of Pediatrics).  Utilization of both are important as it allows for a child with Down Syndrome to be assessed more fairly;  not in comparison to his or her typical peers, but to peers with Down Syndrome and most importantly, to the child themselves.

Hearing Complications with Down Syndrome

Not only does hearing allow us to experience the sounds around us, but it plays a major role in the development of speech. Children with Down syndrome can have a variety of hearing issues, both congenital and acquired, which if not treated can lead to greater problems.

Congenital disorders of the ear generally involve a sensorineural issue (whereby the sensory information is not transmitted or received by the auditory nerve properly). Often this involves the higher tones and is therefore not discovered until later on (as the child would continue to hear many of the sounds around them) and would therefore impact on their development (especially with speech). Routine screening allows for the discovery of congenital ear disorders. Down syndrome may affect any or all of the structures in the middle and inner ear.

Acquired hearing disorders can be divided into two categories: conductive hearing loss and sensorineural hearing loss. These can occur separately or together; many children with Down syndrome have a mixture of both.

A build up of cerumen (ear wax) can easily interfere with the functioning of the eardrum. If mobility of the eardrum is decreased, the sounds transmitted to the middle ear will be decreased as well. This is easily treated by a variety of measures including drops and suction removal by a qualified professional.

Those with Down syndrome can be more susceptible to more infections than the general population and as a result have a higher incidence of ear infections. Over time and especially if left untreated, these infections can cause damage. Fluid buildup in the middle ear, a ruptured tympanic membrane (eardrum) and difficulties with the ossicles can all result from infection.

As well, a condition commonly referred to as "glue ear" can develop. Sticky mucus can accumulate in the middle ear which can literally encase the ossicles and prevent them from vibrating (and therefore, transmitting sound). People with DS can produce more or stickier "glue" which frequently becomes infected as it does not drain away. Further hindering drainage is overall smaller Eustachian tubes in those with Down syndrome as well as the tendency for these tubes to be sharply curved.

With both of these conditions, antibiotics are most often prescribed. If the fluid or glue buildup is persistent, the child may have to undergo a tympanostomy and have "tubes" or grommets placed in the eardrum to allow the fluid to drain away.

As with any potential problem, early intervention is the key. Have your child assessed early by a trained audiologist and your medical team to prevent and minimize the chances of long term hearing loss.

"Anatomy of the Human Ear" shared with permission by Perception Space-The Final Frontier, A PLoS Biology Vol. 3, No. 4, e137 doi:10.1371/journal.pbio.0030137. Creative Commons.

Can You Hear Me Now?

This week's "doctor adventure" for the family involved taking Wyatt to the audiologist.  He was screened (as was his sister) in the NICU, but due to his Down Syndrome, he has a follow up regimen set out by Infant and Child Development.  This was his four month (corrected) appointment.

Since the "little extra" can affect all body systems, hearing is no different.  Kids with DS often have hearing issues that are congenital or acquired.  Most acquired hearing loss is due to ear infections, but wax buildup and a lovely condition most commonly known as "glue ear" (where gunk in the middle ear literally glues up the tiny bones and prevents them from moving) can also occur.  After our last trip to the ENT we were unsure as to whether there was any fluid accumulating in the middle ear (as he could not physically see the eardrums).

After arriving late (I can't remember when I was actually on time for anything since these babies have come along), we were shown into a tiny office with a tinier sound proof room off to the side.   We were cautioned during the confirmation phone call that Wyatt would have to arrive awake and then be able to fall asleep for the testing.  I thought at the time "good luck with that...", but I did my best to keep him awake on the bus ride to to the office.  Once there I took him out and bounced him around a bit (which made him smile that anime smile) to keep him from dozing off before we were shown into the little soundproof room.  I abandoned the stroller in the hallway, set Zoe in her car seat on the floor at Quinn's feet and Wyatt and I took our place in the chair in the booth.

I'm really not good with small spaces... especially ones that remove all sound (I find the silence very unsettling, and well, loud actually).  Even with the door open and a giant window, it still felt like an execution chamber.  However, I wrapped Wyatt in the quilt that his Grandma made him and got him prepared for his test.  First they cleaned and prepped [read:  roughened up] the areas for the leads and put them on.  He had a lead behind both ears and two on his forehead.  He hated this and he was pretty annoyed at all the pushing and prodding, but he completely lost it when she had to rip one of the leads off and start over behind his left ear.  Now that he was howling, she disappeared, letting me know that I should send Quinn out when Wyatt was asleep.  Whatever you say, cupcake...

He spent the next 10 minutes fussing.  Since his ear now hurt, it must have reminded him that his mouth hurt (both the twins have teeth on the way) so he was also chewing on his fingers... which also hurt.  I sent Quinn out to get the backpack, whipped out the Baby Tylenol and gave him a shot.  5 minutes later he was snoring and we could start the test.

The audiologist almost woke him up when she jammed the first tube in his ear, but he settled down again as I held my breath.  I say tube, but in reality it was a tiny speaker that delivers a series of clicks and tones that correspond to specific frequencies.  They test a large range and are particularly interested in the high end as these are the tones that tend to be affected first.  It was also explained to me that she would be paying particular attention to the low end as well;  the low end of the spectrum would indicate if there is fluid accumulation in the ear (which would have to be dealt with as soon as possible to prevent future problems). 

She had to do two more tests on him afterwards due to the results of the first, however in the end his right ear is perfect.  She stated that his left ear had some odd results that could be attributed to a small depression in the eardrum itself, or possibly the tube wasn't in far enough (remember, he has very small ear canals).  In any event, there was no concern for any long term hearing loss (as it stands now) and we would be retested at one year of age (corrected).  Fantastic.  There was also no sign of fluid in the ear, which was also a relief.  It was also pointed out to me that no matter how loud Zoe got, she would not contribute to any hearing loss at Wyatt's part.  Which was also great news as I got to watch the audiologist wince as my daughter's screaming could be heard through the walls of the sound proof room.

Such good news (and such good behaviour on Quinn's part) earned us a trip to Dairy Queen before we headed home.  Yum!  It was hot, so both babies slept until we reached home, which allowed Quinn and I some time together.

As I mentioned last week,  I can now cut out the extra calories (for the babies... did you think I was going to mean me??)  At this point, we've dropped the formula and are just giving EBM bottle top ups.  I'm not seeing any changes in them so I plan to start doing the bottle top up every other feed and then hopefully drop it once and for all.  Wyatt's head is getting steadier every day as well, so that brings us closer to starting solids soon.  I'm back to work in just over a month and I hope to have them started on some cereal at least (they will be getting entire meals by bottle when I am at work anyway). 

This week also meant the babies had to learn to sleep alone.  We've been really worried about this actually, since they have slept so well cuddling into each other.  Lately however, they've started disturbing one another and are getting too big to sleep across the crib.  Last Saturday we moved their room around and set up their very own spaces.  I lovingly set things up so that they each had something of the others with them.  I went to bed with one ear open, waiting for the inevidable wailing to start.

It didn't.

They had the best sleep that they have ever had.  They haven't slept like that since, to be honest, but they slept that night for sure.  Now when Zoe wakes up every hour or so, she isn't necessarily waking up her brother (just me).  Which is a good thing as Wyatt needs his rest.

More good news... it is always welcome around here.  We still step cautiously and take nothing for granted with the kids, Wyatt especially.  However, with each new smile, with each little chuckle, he is progressing.  Yesterday I got to see him waking up and when he saw me standing beside him, he smiled broadly.  That was a fantastic moment.  Tonight after dinner, when he reached out for Quinn who was sitting beside us... that was another fantastic moment.  We are slowly skipping from moment to moment with him as more of his personality comes out and he becomes more of the person he will be.  He studies our faces as we make sounds at him and he tries so very hard to mimic them back.  He 'talks' to us in a series of babbles and coos that are unique to him, including one that sounds like "Hi-lo" that he says a lot when he sees us.  Just his way of saying "hello", we guess.  There is progression; it is slow.  It's slowness serves to illuminate each of the new things that much more, to put it in the spotlight so that we can appreciate exactly what an accomplishment this particular thing really is.  Each new thing is so marvellous, so special, it is almost a gift.  A smile here.  A purposeful touch of my face there.  Gifts.  Each and every one.

Every single day.

We read you loud and clear, little man.



Added to the 'Define Normal' Blog Hop! Find out more @ Just Bring the Chocolate

I Has a Stoopid

A couple of years ago I had an experience in the grocery store which made me realize the extent of the power that our kids have over us.  Once upon a time, we were all cool.  Once upon a time I was a smart, witty intellectual nerdy-type girlie girl.  I wore makeup.  I wore jewelry.  I wore high heels.  I carried on intelligent conversations with other intelligent adults.  I had new clean clothes.  For god sakes, I showered. 

Now that my family has swelled from three to five, I find myself experiencing a state of (debatable) consciousness that I did not think possible.  I now have a new type of delirium totally created by the kids.

Thursday, Wyatt had a follow up appointment with the ENT to hopefully get a good look at his eardrums and assess any potential problems with fluid buildup.  The appointment was at 12:45.  Difficulties:  Bus, 5 year old.

As I have mentioned before, I'm a transit Mom.  I don't mind it all that much to be honest and with the twin stroller at the moment, it is going a lot smoother.  I'm not sure if it's the monster gear or the half-crazed look in my eye, but people just get the hell out of my way.  It's awesome.  Occasionally I have to revert to my "work" voice and ask some Emo twit to vacate the flip up seats, but other than that, it is usually pretty smooth sailing.  You just make sure you plan your route and give yourself enough time.

I started at 7 am.  Yes you read that right.  Up at 7, feed and change the babies, pump.  Get Quinn up at 7:45, eat cereal with him, get everyone dressed and ready, out the door to the bus.  Back to the house.  Run around, doing various things including make a cheese sandwich, check bus times and pack the diaper bag.  Call doctor's office to confirm appointment and check time.  Feed babies, pump and change.  Grab stuff up, head to meet Quinn's school bus.  Go home, toss in his backpack, swap out his rubber boots for runners and straight to the bus stop.  On the bus, 3 minutes later.  Rock 'n' roll. (The cheese sandwich, BTW, was Quinn's bus snack at our layover between buses).

As we were pulling up to our destination, I checked the time and saw that we were ten minutes early.  "W00t", I said to Quinn, high fiving him.  As we were rolling up to the front door, I was mentally congratulating myself again and thinking about our "treat" after.  Should we go to McDonald's or just have an ice cream at the convenience store?  It was humid, my clothes were starting to stick to me and my bowl of cereal was a very very long time ago.  No worries, just a quick appointment and then we'll go out to lunch.  Just as I pulled up to the front door, I broke out into the cold sweat of realization.

We were at the wrong doctors office.

Even though I knew we had to go to the ENT, even though I had spoken to the office earlier, I had gone to the ophthalmologist instead.  WTF?

How the hell had I managed that?

Now, to be fair, Wyatt has seen 5 doctors in the almost four months that he has been alive, 3 of which he has seen multiple times.  It was bound to happen at some point, really.

Somewhere in the next few seconds, I turned into Angry Dizzy Hulk.  First, I let out a barrage of language that threatened to melt the sidewalk.  Then, once that was set free, I was able to start triangulating my route to the ENT (which was, of course, on the complete opposite end of town).  3 buses.  It would take me three buses to get there.  I swung the stroller around and stomped off to the nearest bus stop, dragging my very confused five year old behind me.

It took us an hour and fifteen minutes to get to our destination. Since I was told the last time that the Dr's last appointment is usually 1pm and it was now well beyond that, I doubted that he was still around.  Who knew if his secretary was even still there?  I kept getting dizzier and hulk-ier.  My knees were actually wobbly and Quinn's bottom lip was quivering as we exited the last bus and went to face our [at least air-conditioned] fate.

By some miracle, the ENT was still there and the secretary was still civil.  I was almost in tears as I explained to her what had happened since we last spoke.  She just shook her head and told us to relax.  I could have hugged her.

Once we were there, things just fell into place.  I held Wyatt tightly despite his screams as the doctor suctioned out what was blocking his tiny little ear canals.  You could actually hear big pieces being sucked out of there (yuck!).  When this was all done, the ENT tried to have a look again... and failed.  Even with clean canals and the smallest pediatric head on the otoscope (not to mention his thrilling headgear), he still could not see Wyatt's ear drums.  I think I swore again.  Our instructions:  bring him back in a couple of months once he has grown.  Groan.

By this time, my knees were knocking.  I had to EAT.  Quinn picked Subway and our not so merry caravan descended on them like a pack of hungry dogs.  Our sandwich specialist attempted to take our order and I'm pretty sure that I wanted to ask about the $5 foot long specials.  Unfortunately, given the look on her face, what came out was this.

Half an hour and a thousand odd calories later, I felt much better.

We arrived home without further incident, thankfully.  Zoe slept the entire time, which was a little miracle unto itself and made more fabulous as I had forgotten to bring a "tookie" with us.  We were truly playing with fire with that one.  We beat Sean home by a few minutes and once another round of feeding and changing was over, I sloped off to the bathtub and wore my jammies to dinner.  I was done.  Finito.

Not every day around here is a complete circus, thank god.  Some days have surprisingly pleasant results. Thursday night, while waiting for Sean to finish putting Quinn to bed, I was trying to entertain the two little ones before their bath.  I had them down to their diapers as a) it was hot and b) they had puked/pooped on their last outfits for the day.  They had also run out of patience for the mobile and for Mommy tickles and I was about to have two hysterical infants on my hands when I spied the two Bumbo seats in the closet.  "What the hell..." I thought, and pulled them out.  Wyatt is not as good at holding up his head as his sister so I braced behind them with two big pillows as I set them on the futon. I immediately burst out laughing and had a few minutes of hopping from one foot to the other in impatience as I waited for Sean to finish the story so he could watch them while I ran for the camera.  Although you can see that Wyatt was getting tired near the end, and the lighting is shite as this was thrown together, the results are still waaay cute.

I think she's taking our picture again...

I'm not sure which shot I like better... Wyatt's ultra casual:

S'up?

...or him gazing lovingly towards his sister.

Hey...

We have some ultra cute Zoe too...  I finally captured her goofy grin.  Which is good as it will provide some good PR for the kid as she continues to scream her way through infancy.

Wheee!

Just to be fair, here is another great moment with her. 

These photoshoots wear me out.

I've managed to unearth a few decent online resources this week too.  My traipsing through the blogosphere has finally paid off as I have found a few that I think are actually worth reading.  This is helpful as at least the illusion of shared experience can provide comfort.  One good find this week is a fantastic German lifestyle photographer named Conny Wenk.  Although she has many "typical" clients, she has many with DS as well, including her youngest daughter.  You can find her wonderful photoblog here.  I also stumbled across a downloadable book for expectant Moms:  Diagnosis to Delivery:  A Pregnant Mother's Guide to Down Syndrome.  It might have helped me a bit, hopefully it can help someone else.  I was marveling that the photography was very good until I realized that one of the contributors was none other than Conny Wenk herself.  Very cool.

Which brings me to my latest project...  As you know, I've been blogging for years and this has exploded in the last 5 months or so due to the twins and Wyatt's issues.  I've also been shopping around for DS resources and not finding a lot that I personally find useful.  I also have a husband who, when he reads my entries says very little, other than "I was there... remember?".  He did say something of note last week however: "Why don't you start a Down syndrome blog and help some people?  You are a damn nurse after all..."  He's right.  So I did.

Down Wit Dat

Basically it will repost all my DS related entries (lets face it, parents of kids with DS don't want to hear about my garden) and feature all the useful resources I can come across.  A little redundant, yes, but hopefully it will provide some assistance to someone.  If only a laugh.  (If you are reading this there... Hi!) Besides, there has to be other quasi-coherent, non-baby collecting, non-fanatically religious DS Mommies out there that swear like hooker pirates, right?

Right?

In the end, it's been a give and take kind of week.  Much like most things around here actually.  Without breaking into 80's sitcom theme songs, you take the good with the bad.  Good:  kids are healthy and well looked after.  Bad:  Mommy has a stoopid.  Good:  Wyatt is doing well.  Bad:  Mommy's... wait, what?

The memory has to come back at some point.  Until then, just assume I'm a little impaired.  Which is perfect, as it brings me down to baby level.  If you can't beat 'em, join 'em.  Just roll with it.  We are Down Wit Dat.


Added to the 'Define Normal' Blog Hop! Find out more @ Just Bring the Chocolate

"...Eyes, Ears, Mouth and Nose."

I can't believe it's been over 15 weeks.  I don't know where the time went.

Well, that's not true.  I do know where the time has gone:  it's been a haze of feeding, bottling, diaper changing, dishes, laundry and doctor's appointments.  It's really the amount of time that has passed that is a bit staggering.  Another astonishing fact is that in the space of just under four months they have almost tripled their weight and gone from swimming in the preemie clothes to filling out 0-3 mos sizes nicely.  Amazing.

They've had a little help along the way tho'.  My enormous appetite and unquenchable thirst has guaranteed that they continue to get pints of Mommy's Finest at mealtime.  I'm still pumping afterwards for the "top up";  after they feed, they get a bottle of EBM with a bit of formula powder added in for extra calories.  The recipe is supposed to be 5ml of the powder in 90ml of EBM which gives them an extra 20kCal.  The top up bottles are currently 60ml, so you can see that the math does not easily line up.  Having a "mixed" bottle of extra in the fridge is just another step in the "kitchen chemistry" that takes up time and energy that can be spent somewhere else.   That's another mixer bottle to wash and sterilize and keep track of (as the mixture is only good for 24 hours, ergo, so is the bottle, no matter how young the leftovers in it are).  Instead, when I'm pouring each of the 60ml bottles, I throw in 2.5ml (or less) of the powder.  They are getting less formula than prescribed, but as you can see, they are not missing anything.

My little chubsters. Thanks to Penny for zapping out that annoying tag and making my babies even more beautiful.  Love, love, love it!

The top up is an annoying practice that my pediatrician has insisted that I keep up.  I realized the other day that (another) one of the reasons that I felt so remote from the babies is the lack of snuggle time after a feed.  Normally it's the perfect time to cuddle and yes, even doze off.  Not this Mama... I have to finish up with them and then put them down to have a Medela Moment.  It's one of those million little things that contribute to a big thing.  I'll be glad when I no longer have to force feed my little Strasbourg geese.

Wyatt is still holding on strong.  Other than chilly feet and hands (his feet are usually mottled to blueish) he remains mainly asymptomatic from his AVSD.  He's usually a bit mottled all over as well, so I just make sure that he is a little more warmly dressed than his sister.  We've added two new doctors to his roster as well;  last week we saw the ENT and Friday we met his Opthomologist.

Now, the ENT has been described to me as "gorgeous" (and by that alone, I fear I have given his identity away), and he is man-pretty... if you are into thin metrosexuals, which I am not.  He did however use an iPad the entire time, which I thought was pretty cool and very forward thinking of him.  Among the countless little differences that Trisomy 21 offers up are tiny ear canals.  Even with the smallest pediatric head on the otoscope, he couldn't visualize the ear drums to see if Wyatt has any fluid built up (DS kids commonly end up with tubes in their ears due to this).  All that flaky skin on the outside of Wyatt's head lives inside his canals too;  even with his fancy extraction machine and thrilling headgear, the ENT couldn't clear the canals enough to get down there. We have to go back in two weeks after I goop Wy's ears with mineral oil every day.  He doesn't totally hate it, which I guess is a good thing.

I had no idea what was in store for Wyatt at the ophthalmologists.  Many DS kids have eye problems including (but not totalling) strabismus, hypermetropia, myopia, astigmatism, weak accommodation, nystagmus, cataracts, glaucoma, keratoconus, blepharitis, presbyopia, watering eyes and frequent eye infections.  Since I am myopic with a bad astigmatism and have been such since childhood, I'm not too worried about him wearing glasses in this family.  However, I had no idea how they were going to test a baby.  First they dilated his eyes with Cyclopentolate (I asked as I wanted to make sure they were not giving him atropine with his heart issues).  The orthoptist first used a series of blinking lights, toys and cards to check for muscular abnormalities.  I was happy to hear that at this point there are none, but he should be frequently monitored.  The opthomologist used her own brand of thrilling head gear and saw that he did not have cataracts (my pediatrician seemed to think he did, although she did not voice this to us) and that he did not have retinoblastoma.  The latter not being prevanlent in the DS community; the babies in our family are routinely tested as our 2-D Cousin was diagnosed at a young age.  Hers probably wasn't the genetic type, but you can never be too cautious. Happy results all around, we'll be back in 6 months to follow up.  Since the pediatrician only referred ONE of my twins, I have to ask to have Zoe checked. Poor Zoe, always the bridesmaid...

My Baby blues are good to go!

I shouldn't really say that as Zoe ends up getting more face time than Wyatt.  As the puker and screamer of the duo, she spends a great deal of not-so-quality time with dear old Mom and Dad.  It still astounds me a) how much she can throw up and still gain weight and b) how LOUD she is.  Recently, she's managed to connect her hand to her mouth and we thought "oh good, now she can calm herself that way".  No, sorry.  She's managed to find a way to put her hand in her mouth and make herself EVEN LOUDER.  Apparently that was what she was missing;  amplification.  I guess to offset that (and to ensure we didn't leave her in a basket on the neighbour's doorstep) she learned how to giggle this morning.  A cute little "hee hee hee" that goes with her face-splitting grin.  She is cute, I'll give her that.

Is that a smile? Not the full one, but one nevertheless...

Developmentally, they both seem to be right in the "six weeks adjustment" area.  There are certain things that she is better at, and certain things that he is better at.  He babbles and coos more often while she is better with the eye contact and specific noises.  I'm trying to get them both to grasp at toys and I'm encouraging them to spend more "tummy time" and lift themselves up.  Wyatt seems to be the one closest to rolling over at present and is spending more and more time awake, which is fantastic.  I can't tell you how encouraging it is to have his sweet little eyes locked on me for minutes at a time as we interact with one another. 

I'm doing much better these days as well.  We're getting a little more sleep on the whole as they can push that 1am feed to 2 or 3am on average and to 5am on a good day (they generally eat around 9 or 10 before bed).  The days that they sleep through the night are few and far between, but they are there, which means there is a light at the end of the tunnel for all of us.  Well, until they start teething... (shudder).  The hormones are still horrendous, but I think I've figured out how to ride them out for the most part.  Thankfully, caffeine has been put back on the menu (along with the occasional beer) in small, yet well timed doses.  I'm not sure if it's a side effect of the hormones or what but I can enjoy a little treat without the fear of PVC's.  Even the tiniest bit of caffeine, chocolate or alcohol would get my heart tripping up, but for now it seems ok.  I'd like to think my organs got together and lifted the sanctions on the holy trinity.  "Dood!  We have to give her something!"  I kind of overdid it on the chocolate a few weeks ago... my weight started to creep up again as I was self-medicating with the lovely stuff.  I am happy to report with the advent of more sleep (and getting out to Mother Goose), we are back on track and down to our pre-pregnancy weight again.  Yay!  It's nice to hear things like "I think you've lost weight since this morning".  :)

Now the trick becomes getting as much time and effort into them before I have to go back to work.  I would love to take the full year off with them but unfortunately I have to disagree with Jessie J here... it is all about the money.  Hubby will thankfully take the second half as I return in September.  At least I get to start them on some cereal and get Quinn back to school first.  Should be interesting as I will have to take a Medela break every four hours...

"Head and shoulders,  knees and toes..."   Right now I think we have all these things under control.  (Until the next crisis, that is.)  For now tho', I'll just keep plugging on.  Even the bad days have their good points; a little smile here, a little development there.  The laundry will always be there, the dishes will always need doing and the floor will always need to be swept. Our time together is flowing past at an alarming rate... You'll forgive me then, if I choose instead to gaze into two little sets of eyes; one blue and one brown, and listen to two little sweet voices babble and coo.  Eyes, ears, mouth and nose.

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