Friday, August 02, 2013

The Ol' One-Two

Yesterday was our 4 year wedding anniversary.  Today is my birthday.  We always, always, always forget our wedding anniversary.  The only people who remember are my sister and Momma D.  We loved the day we got hitched, but the date was and is arbitrary.  We've been together for 12 years now, so the date we tied ourselves to the hitching post seems like just another fun day in our fun and crazy life together.

It actually wasn't so fun yesterday.  It started with a 5 hour sleep stretch from the Wonder Twins, which was BLISS.  Followed by the hell that is the Big Yam finally figuring out how to use a doorknob and abusing that privilege by getting up outta bed whenever he gets it into his Big Giant Head to do so (yesterday it was 5am!) and wanting it to be instant hang times.  Not great.  I'm thinking of getting one of those child safety door knob covers for the inside door knob in his room so that he can be trapped in there until we see fit to let him out.  Life was so much easier when he was imprisoned in his room.

The Wonder Twins also had their scheduled 8-week check-up yesterday.  It was their first time meeting our family doctor.  I was there for TWO HOURS.  The most concerning thing is that Q has one small ear and one regular sized ear:


The small ear is like half the size.  Our midwife discovered it and it wasn't picked up by the paediatricians at the NICU, so she wanted us to alert our family doctor.  At first, her concern after doing some reading is that "low-set" ears are linked to Down's Syndrome and other chromosomal abnormalities.  However, according to her, there isn't much literature about just ONE low-set ear.  I've been reading up on some of the chromosomal abnormalities associated with low-set ears and Q doesn't really show any of the other characteristics.  Apparently, because pinna (outer ear) development occurs at a critical juncture, chromosomal abnormalities associated with low-set ears tend to have other characteristics - heart issues, cleft palates, extra digits, clenched hands, etc.  The only way to find out would be genetic testing, I'm assuming.  Also, I think it would be strange for chromosomal abnormalities in only one of an identical twin set, but who knows?  I read this recent National Geographic article about twins and this article from Scientific American.  Both articles suggest something that makes sense to me - that there can be genetic differences between identical twins - due to copying errors or environmental mutations, etc.  

Our family doctor thinks that it's more likely that Q's ear is related to his flattening head.  The head flattening could be caused by two reasons: #1 (best case scenario) is muscle tightening that means he favours lying on one side of his head - this can be addressed with physiotherapy and stretches.  #2 is worse.  It could be that the skull plates of his head are fusing together, creating flattening and bulging (the side of his head with the wonky ear is a little bulgy) as his brain grows and has no place to grow, which could also be displacing his ear.  The type of flattening our doctor noticed and the way the ears are displaced indicates that it might be one of the rarest forms of craniosynostosis, lambdoid synostosis.  The treatment is usually skull-busting surgery between 4-6 months of age, followed by a corrective helmet, worn TWENTY THREE hours of the day for an additional 6 months.  


Le sigh.  It was a lot to take in.  I went to the doctor by myself because the Dotytron stayed home to look after the Big Yam, who we kept home yesterday.  We're being referred back to the neo-natal follow up clinic to be seen by one of the paediatricians there and that's the first step.  In the interim, our doctor is trying to arrange physiotherapy for Q.  I hope he doesn't end up looking like the Great Gazoo for the first year of his life, but it's better than a chromosomal abnormality.  We are slightly discouraged and worried and stressed about this whole situation.  The thing with twins is - your worries and concerns keep ping-ponging between them.  In the NICU, it was all about how Professor Gantok was all barfy and had the brain cysts (which still might be there for all we know - follow up ultrasound is later this month) and how he was having mad apnea spells.  Now it's all about Q's issues.  
Professor Gantok seems to be doing fine.  He basically just gains weight and looks scared.  Those are his two primary skills right now.  We call him "Gloria Gaynor" because of his ability to pack on the lbs.  Gloria Gaynor, FYI, is the woman who sang "I Will Survive."  For some reason we find it incredibly funny.  



When they mark them on the growth curve, for all the variables (head circumference, weight, length) they basically are off the charts (in the bad way - as in, they don't appear) if you treat them like 2 month olds.  If you track them as if they were born at term (which would have been last Friday - my actual due date), then they're in the 15-50th percentile for those markers.  Poor little underachieving bubbies.  Some Wonder Twins they are.  

We went into my birthday feeling a bit low.  At the end of the day though, no matter what happens, I reminded myself and the Dotytron that we are lucky to be the parents of our three little wonders.  Whatever is in store for us, we are a family and we will weather it together - with poor taste, humor, often times misplaced anger, and occasionally, if we're lucky, a smidgen of grace.  

Look at this little elf' and his weird noggin.

The Big Yam is a handful and I started the day not being very nice to him.  This morning he rolled up again at some ungodly hour (maybe 6:30) and was all ready to roll.  I was pretty snappy at him.  The lack of consistent, uninterrupted sleep manifests itself in my inability to rally in the morning.  Usually, I'm an out-and-out morning person, but I'm definitely having problems getting rolling.  The Dotytron's low period is in the mid afternoon.  They woke me up before the Big Yam went to daycare and sang "happy birthday" to me and then gave me a homemade card.  Apparently the Dotytron asked him if he had anything nice he wanted to say about his mama when they were making the card, and the Big Yam was like, "no!" Haha - I don't blame him - what would he have nice to say about his short and curt grumpy mum?  

This guy:

That was taken in Geneseo when my sis gave him a pair of Thomas pyjamas.  He came running out, so proud and happy and I said to him, "Look at your in your cute Thomas jammies!" and he looked down at himself and said really softly, "I know."  LOL!  How cute is that?

He's been working through some stuff lately. To do with electricity.  He went with the Dotytron to the Science Centre and got scared by the electricity display.  For the past week or so, he's been talking it out.  "Electricity makes a cracking sound. A crackling cracking sound."  In Geneseo, we were at a play area with a big plastic dome and some coarse, thick-grained sand/fine stones.  He would throw the sand/stones at the plastic dome and would say: "Electricity!" (imagine the sound it makes).  It was pretty cute and smart.  I love it when he synthesizes stuff.  It's so interesting to watch.  

The rest of my birthday was pretty good.  We went to Rose and Sons for lunch/brunch.  It's a teeny tiny place - the two car seats wouldn't even fit in the 4 person booth - we had to stack them somewhat precariously.  The food was first rate.  I would definitely go back.   It's kind of Jewish influenced soul-food - so they do patty melts and fried chicken and yummy-sounding sweet brunch items.  I want to try their dinner menu.  They also recently opened an outdoor barbecue joint called Big Crow that I'd like to check out.

My sandwich - the PLB special - a cheddar melt with pickles, sausage, bacon, fried egg. Served with cherry jam.  This was freaking delicious.  The Dotytron got the 3 egg special with schmaltz fried hashbrowns, and their house-smoked thick cut bacon.  

I came home, took a nap, and woke up to a Canada Post delivery person dropping off a box at our door.  The Dotytron and I don't usually do birthday/anniversary/Xmas presents.  It's just not our thing.  We prefer to just do dinner together and hang or something low key and low concept.  The package was a surprise present - a new juicer!  Huzzah! I'm pumped - it's going to make our CSA so much more cost-effective.  We're meeting our friends at the Brickworks tomorrow and I'm definitely going to pick up some beets and other produce for juicing.  Can't wait.

Then the Roomie came over with her adorable daughter.  We hung out and ordered Mexican food.  The Dotytron made me a birthday ice cream pie but as of press time, it hadn't set up enough.  We had 4 kids under 4 afoot, there was a giant mess of toys, and the Wonder Twins were feeding constantly.  It was a bit of a crazy stressful tornado but I guess this is my life now.  I can't complain.  I am well loved.

Fin.

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