Technicolour - WARNING... NOT FOR THE QUEASY...

Here's Lauren in all her technicolour glory. In fact, it doesn't quite do the bruising justice. The blood in her eye is disappearing quicker than I expected too.

Look how bright her eyes are and how happy she is!. All her joy is obvious now instead of hiding behind a droopy lid. I think, in some way, I've always seen her like this as it seems perfectly natural.

Today, while playing in front of the mirror, she looked at her eye. I commented how it's her favourite colour - purple!

Later in the day, she looked at me and said, "My eye purple. This one!" touching her eyebrow. "not yours" she said to me "you not purple..."    Nope. Me not purple.

Still under water

One would think, with Lauren's surgery completed, that I would feel some sense of relief, that thing would settle and I'd feel more calm or at least less stressed.

But I'm not. Not in the least. It's like there's some form of PTSD lingering, undermining what should be fun, light hearted days. The tears are still right under the surface just waiting for the tiniest trigger. Oddly enough, I don't seem to ever hit that trigger.

Part of it is the waiting. We know how much I loooooove waiting (heavy on the sarcasm). We need to wait to see where her eye lid settles out to. Will it come back down just a bit more to be even with the other as intended or will she have to go back under to have it adjusted? Our follow-up with the surgeon is next Tuesday so it'll be that long before we have some idea where things are headed.

The other, much bigger, darker cloud hanging over me is Lauren's heart. The anesthesiologist read Lauren's cardiologist report very carefully - putting his finger on each and every line to make sure he got every tiny detail. Guess what? Turns out there's a hole in the wall between Lauren`s atriums that the cardiologist never told us about.

Seriously!?! As I write this, I'm actually very pissed. Do I look like I need coddling? I try to ask intelligent questions and keep on top of everything about my daughter's health and in three visits, the cardiologist didn't think to tell me about it? If I hadn't been obsessive enough to got a copy of her report for the surgery, I still wouldn't know. Not knowing could have put her at serious risk during surgery. I'm thankful I was OCD enough to have the report with me in the first place but fuming that it took an anesthesiologist to tell me my daughter actually has three different heart defects.

In defense of the cardiologist, the hole is obviously not a huge concern. Perhaps she felt we had enough on her plate. Perhaps it was simply missed in her verbal report to us at the first exam and, at later appointments, she assumed we already knew.

But the matter is, I didn't know. Is there anything else I don't know that I should? There's no way for me to find out until after the fact - one of those "don't know what I don't know" moments.

With the hole in her heart, there's some shunting of blood across.How does this affect the rest of her? Is it going to cause problems with stamina or the long term health of her heart and lungs?

This opens the door to all my other fears. Will we be able to build her stamina and endurance? Will she be able to keep up with her peers when running and playing? Will she be able to keep up intellectually and enjoy school? Or am I fighting an uphill battle with her physiology in a war I can't possibly win?

Surgery Day - A Picture Diary

5:38am. Playing in the atrium, waiting for the registration station to open.

Hooray for Starbucks already open.

The picture doesn't do it justice. The Hospital for Sick Kids in Toronto is beautiful.

The sky is still pitch black.

Lauren, in her 'hospital pjs', and Rabbit wait for Nurse Ann to come back to get Lauren's specs.

The perfect "Before" picture

While waiting to meet with the surgeon and anesthesiologist, Lauren drove and parked the entire fleet of cozy coupes again... and again... and again...

No operating room photos but mostly because I forgot I wanted them. She was a star.

No fussing, no fighting the mask or the process. My little girl is the most amazing person on the planet.

Finally, at home, after many rough hours of horrible gas pains, she finally falls asleep on my bed.

The surgery was fine, she did great with no dramatic complications (more on the specifics another day) and napped all the way home. At home she howled and when she wasn't howling, she snoozed. We were finally able to get some food into her around 4pm and things improved quickly from there.

By 5:30 she was in bed for the night.

Our current "After" picture. 

This morning, she's back to her bright eyed self. The 'red eye removal' function 

on my camera is nowhere near prepared for this one. It'll be a week or so before her 

eye lid settles into its proper, expected position and all the swelling and discolouration 

are gone. Already we can see so much more of her beautiful eyes and have no regrets.

Undercurrents

Lauren goes for surgery this Tuesday. It's not major surgery but it gives me a undercurrent of unease just the same.

And so it should. She'll be under general anesthesia and any number of things can go badly.

The two of us were sitting together in front of the closet mirror after she'd taken a tumble. The tears that were pooling in her eyes caught her attention and seemed to captivate her. She pulled at her cheeks and squished her eyes a couple times as if to figure out what exactly was going on.

I took that moment to talk about what's going to happen - that we're going to the doctor's on Tuesday ("Papa Roman stay home." she said) and that he's going to adjust her eye. I wiggled her eyelid a bit. "This one" I said. "Just to make it work a bit better."

I explained how we'd see Dr. P in his blue pajamas and funny hat (his words), that Mama would have to talk to some doctors while Lauren plays for a bit. Next she would have a nap and when she wakes up they'd be all done and we would go home again.

It was a moment when her old soul shone through in all it's glory. She paid full attention and seemed to get it as if it's something we do all the time. Not 2 1/2 years old at all, more like 20 but without the attitude.

Meanwhile, whenever I'm not with her, the geebies start to get to me. My heart and back get tight. My stomach when it's not turning somersaults knots up. I know this is the right thing to do but it doesn't change the fact that we're making a change to how our daughter looks.

It's scary how fast time has flown by. From the day she was born to now is a blur. The time from seeing the specialist and anticipating an 18 month wait to now has been a blink. Gone. Suddenly it`s here. There`s no more time to ponder "what if?" or "should we?" or "..."

I find myself wishing there was something I could take that would just zip me two days into the future with everything all done and no more anxiety. To me, it would be easier if it was emergency surgery where we needed to make a decision in the moment and then live with it. It's the waiting that's doing me in - there's too much time to think.

No wonder I always hate waiting.

our old soul at the top of the monkey bars

BMP in the road

It's official. We're in speech therapy.

And yes. I said "we".

Technically, it IS Lauren receiving therapy but reality is, I'm the one learning how to teach her to say Bs, Ms and Ps properly.

We met with Veronique last week who has quickly become a favourite practitioner in Lauren's arsenal. She doesn't hold back, is very quick to tell us what is good and what needs improvement. She continues to be thrilled with Lauren's vocabulary and how 'bright' Lauren is.

Within minutes, Veronique assessed that Lauren is continuing to have trouble pronouncing bi-labial sounds properly - B, M and P - which require her lips to be closed to make the sounds properly. You're trying it right now aren't you? Go ahead. Say the alphabet and feel how each sound is made... I'll wait...

...

The current consensus is that the physical structure of Lauren's upper palette is the cause of her difficulties BUT Lauren is learning to compensate. Lauren knows the sounds are supposed to be different and is finding ways to make them a bit different, usually by pressing her bottom lip up against her exposed top teeth.

This is part of why Veronique gives Lauren the "bright" classification. The second reason is Lauren's exceptional OT abilities and lack of typical 2 1/2 year old behaviour.

Veronique pulled out some small beads and some pipe cleaner.Lauren was to pick colours ("Do you want P-ink or P-urple?") then Veronique would put the beads on the pipe cleaner. Well, Lauren was having none of that. She was happy to choose a colour but no way was Veronique going to do the 'putting on the pipe cleaner' step. After two beads, Lauren promptly took the pipe cleaner and the bead out of Veronique's hands and zip! the bead was on. Veronique quickly explained that the task was meant for older kids due to the size of the beads, choking hazards, etc and she was concerned that Lauren would get frustrated not being able to put them on herself. I simply shrugged and we carried on practicing "Blue or Purple?" "Purple or Black?" until we moved on to "More? or Finished?" to get a few Ms in. Not too many M colours out there in your standard bead pack it seems.

We spent some time discussing Lauren's hearing issues and how it will impact her schooling. I shared my disappointment at having to implement a technological system that would again set Lauren apart from her peers. Veronique clarified that on average, all the children AND the teacher would benefit from a classwide amplification system. She said there are a lot of younger students with deficiencies and fluctuating hearing loss (ie: fluid build up from colds, etc) and that she often works with teachers with vocal chord damage from consistently having to speak over a noisy classroom.

So it seems my future task (hopefully not a battle) will be to have amplification systems implemented in Lauren's classrooms each year. Knowing that I can take this fight to a higher level - all the kids, not just mine - is somewhat encouraging. Thankfully I have time before we need this to kick in since Lauren won't be registered for JK until February of 2012...

Just because... doesn't mean...

There are so many possible ways to complete this statement. It's this week's Bloggy Mom workshop topic and it comes up frequently for me.

Currently, just because I choose to stay home and raise my children, doesn't mean I don't have a brain.

And you know who you are that think this about me.

You're the doctors who talk to the interns in the room instead of me, the patient's mother.

You're the doctors who prescribe a medication and assume I'm going to blindly give it to my daughter without questioning it's necessity, side effects or long term complications.

You're the doctors who look at me as if I have two heads (and a third one sprouting) when I bring up medical issues in medical terms and use the terms correctly and with confidence.

You're the doctors who look stunned when I say "We've found a solution (without you) by doing X + Y + Z"

You're the doctors who shake your head and say "I've seen fructose intolerance and your daughter doesn't have it".

You're the doctors who can't believe I eliminated food from our diets and got results without waiting for you to suggest it.

You're the doctors who tell me my daughter doesn't need cosmetic eye surgery because kids won't say anything.

You're the doctors who think the sun shines out your ___ and that I should be taking everything you say as truth, that you're infallible and that if I don't worship the ground you tread then I must be clinical, or an idiot, or not truly caring about my child.

You're the doctors who need to look outside the box, see my child as a unique child.

You're the doctors who need to stop judging my daughter by her syndrome or me by my faded jeans.

Just because I stay home to raise my child doesn't mean I don't have a brain.

A Letter to Linda Hunt

I really enjoy watching Linda Hunt's performances. Currently she's playing the roll of Hetty Lange on NCIS: Los Angeles but has been in countless other productions including The Year of Living Dangerously.


This season, on NCIS: Los Angeles, I noticed something interesting. Yes, Linda Hunt is petite, and, immersed in it now, I know to call it "short stature", but what caught my eye was not being able to remember ever seeing her ears.

Sounds crazy right? Who cares about someone's ears?

A mom of a daughter with Noonan Syndrome does. Here is a remarkable, talented actor with short stature and... are those ears a little lower than the general population? Is that why her hair is so strategically coiffed?

And so, as I'm falling asleep, I script the following letter to Linda Hunt:

Dear Ms. Hunt,

Thank you for the work you're doing on NCIS: Los Angeles. We enjoy watching your performances and look forward to seeing more in the future.

I realize the following request places me firmly in the category of "nut bar" but hope you'll consider it regardless.

Given your short stature and the online references to a "host of health issues" growing up, I was hoping you would consider having your health practitioner send a DNA sample for testing, specifically considering Noonan Syndrome.

As a syndrome, NS was not specifically documented until the late 60s meaning your childhood doctors would not have had it to consider after ruling out other obvious options such as Turners.

As mother to a 2 1/2 year old daughter with Noonan Syndrome, I intend to show Lauren your work stating. "Look Lauren! Ms Hunt is little just like you! You can do remarkable things just like she does." Imagine the impact and encouragement it would give her, and other girls with NS, to see someone in the spotlight proudly embracing the same diagnosis they live with.

There are many places to gather information about NS but I encourage you to contact Dr. Jacqueline Noonan through the University of Kentucky or Dr. Amy Roberts at Harvard University.

Thank you for considering my request.

Warmest regards,

~Robyn

Mom to Lauren, age 2 1/2, Noonan Syndrome

Living without a diagnosis

I've met a wonderful woman at Lauren's preachool. She mentioned in passing one day that her daughter, also in Lauren's class, doesn't speak. I honestly hadn't noticed because her daughter always has a beautiful smile and most of the kids don't talk much in that environment anyways.

What I had noticed were her daughter silver molar caps and how her daughter was so open, affectionate and trusting. Within moments of meeting the daughter in the early weeks of school, I privately wondered if a syndrome was present. This, of course, raises the question to me whether I would have noticed anything if I didn't already live with it. I certainly would never have had the courage to ask.

Which is exactly what I did, albeit indirectly.

We happened to be the only ones in the cloakroom before school started Monday so I asked about the speech issue she'd mentioned. This opened an extended conversation about her daughter's ongoing health complications, Mom's ongoing struggles to get a diagnosis, the frustrations of not being heard and the pondering of whether she should be continuing the fight or if all the doctors are right and it's all in her head.

Her daughter, now 3 1/2, has finally been seen by a developmental pediatrician (whom Mom calls the syndrome doctor) and is finally going to see a GI specialist after wait over a year being rescheduled once. Because her daughter has severe dental issues, repeat ear infections, high pain tolerance, delayed speech and ongoing digestive issues, the syndrome doctor says there are only a few syndromes that fit the bill.

One of the first things Mom asked me, purely rhetorical I'm sure, was whether she was crazy to want a diagnosis. I supported her quest stating that there are some things that are easier to gain with a confirmed diagnosis. What I should've added is what is to be gained - respect and confirmation that you're not insane for believing there was/is something physically wrong with your child.

We talked a bit more about her daughter's long time gas issues to which I suggested dropping dairy. She had previously but it was only half assed - like our first attempt. I encouraged her to try it completely as well as considering fructose sensitivity. I know. I'm a bit of a zealot about these food sensitivities, but I can just SO related to everything she was saying including the fact that they've never had her sleep through the night. There has always been intense gas pains with some nights are better or worse than others.

She seemed encouraged to have a mom who's been there - make that IS there - and knows some of the same people she's now working with. Someone who's been fighting through some of the same things. Probably the only reason some of our issues have been solved is because we DO have a diagnosis.

I, of course, came home pondering how much a diagnosis actually is necessary. If each individual issue is being addressed adequately, is a title to her complications really necessary or is it ultimately going to be a hindrance? Will having "Noonan Syndrome" to fill in the blank on Lauren's future applications really be necessary? We only gave the school "growth deficient" and now will add "mild hearing deficiency" but is anything more necessary? If we didn't have a 'syndrome' to carry around, those are the only things we'd really be paying any attention to in the school environment.

Or are they? Would we have entered "the system" because she wasn't crawling or walking when expected? On the other hand, would we have been in speech therapy if we weren't already having her hearing tested because of her ear placement? We can't ever know how things would've been different if she'd been born somewhere else or hadn't had a competent doctor or ... nor would I want do. But is a diagnosis really necessary?

I wonder.

In bus we trust

Roman goes to school all day on Mondays, Wednesdays and random Fridays. It's called 'every other Friday' but in reality, the schedule is pretty random. Today, being Monday, is a school day meaning waiting at the end of the driveway for the bus to arrive.

We snatch a tiny bit of Mama-Roman time before I walk him across the road and hand him off to some woman I barely know.

As I`m walking back across the road it strikes me like lightning in a summer storm that I've just handed my first born child off to a stranger and trusted them to get him where he needs to go.

I know the woman's name only because I asked it last year. I have her phone number because she called about a scheduling change and I`m obsessive about keeping that kind of information on hand.

But otherwise, I have no idea who she is, where she lives, or anything relevant about her.

Yet every school day I hand over my child and walk away. Roman gets to school and he comes home from school. As far as I know, there's never been an accident or incident on the bus and he's always happy to go.

It should be given more attention than it is. How many of us hand over our children to people whose names we barely know and TRUST that they're doing the right thing for our child? That they'll keep them safe and sound and relatively unscathed by the world at large?


Bus drivers deserve a lot more credit and so do the parents that trust them.

Final Harvest 2010

Today was our last kick at the proverbial watering can. We managed to protect the tomatillos and beans from the first few frosts but the last heavy one did the beans in despite their tarp covering. Knowing I was quickly loosing any will to can (we get tired of all that 'crap' hanging around the kitchen...), we decided this would be the weekend to pack that last batch of salsa verde away.

It's perking away on the oven now - a double batch which should be enough, in combination with the roasted tomatillo salsa already in storage, to hold us through til next fall.

Next step is to strip all the wilted plants out of the garden so we can till and fertilize. Thankfully the owners of a cattle farm down the road have agreed that if we shovel "it", we can have "it". Now we need to make the time to dig in.

No manure means no produce next year. I'm certain the poor production on a number of our veggies is directly related to the soil quality. I know. I know. Duh. Last year's crops were exceptional but depleted our soil tremendously. I just didn't realize how badly.

Meanwhile, if I ever want to go into the tomatillo market, I expect we'll have no problem whatsoever. There are still seedlings popping up all over regardless of the weather. They've officially become a wild crop on our property.

The plan for tonight is to let the salsa perk away then put it in the eco-fridge for the night - by eco-fridge I mean outside - to reheat and process in the morning.

This leaves us one plant that may or may not be harvest ready this year. Roman and I planted jerusalem artichokes just because. We planted them waaaaaaaay out back so they can spread at will without interfering with our true garden space. I have visions of a huge field of yellow flowers in future years. 

Fingers crossed. Between the tomatillos and the artichokes, we could corner the market on unusual produce...

A kick in the pants

This week's Bloggy Mom's writer's workshop challenge is about tasks that hover over you, taking little nips of your attention until they are finally tackled and scratched off that ever growing to-do list.

I pondered the topic off and on soon finding the topic itself becoming an item on the list niggling at me to get done. I felt like a bird of prey being chased by crows and starlings - nip nip nip

There are so many topics to choose from - the fence has finally been pulled out of the middle of the garden, I've found a piano teacher for Roman, the kitchen floor has finally be washed and, after two years, the deck  has finally been torn off the back of the house. We won't count this as a success until we see how long it takes to get a deck put back on again though. It's not scheduled until spring but as there's no actual year attached to that "spring" designation I make no promises.

Having finally decided on a topic, I started agonizing over which blog to post it on - should it be Lauren's which is where my Bloggy Mom profile links or should it be The Roman Garden which is more about the family and less about Noonan Syndrome?

I realized this was actually the project I should be tackling - the merging of the two blogs into one and the resulting simplification of my blogging. No more choosing which venue and no more feeling guilty because Lauren's blog is updated far more frequently than Roman's. By renaming Lauren's and combining both I could write about pretty well anything.

And so, while Lauren was at school, the task began.

Now I confess to two things - I'm a bit obsessive about how things look and work (to a point) and I'm a nerd (or is it geek? I can never remember...) Merging the two blogs needed to be simple AND maintain the timeline of both sets of posts. I also had to choose which layout I preferred and deal with the resulting technoquirks.

Hooray for people nerdier than me who document things like merging two existing blogs into one. Export one to back it up, export the other. Import the second into the one being kept (but don't automatically publish. Don't ask me why, just don't do it. Perhaps hell freezes over or the Leaf's with the cup. oh wait. That's the same thing...). Check them off in the "Edit posts" menu and publish. Since both blogs were published through the same Blogger account all the photos were still linking properly and all was glorious.

Of course I then wanted to change the layout so grab the template from one, drop it into the other and poof all layout hell breaks loose.

Nothing is ever perfect the first (or second or third) time but after a few HTML tweaks, copy changes, photos deleted, photos added, voila! Task completed. Total time to completion: about 4 hours not counting the months of procrastination or the hours of family time between programming sessions.

I feel really good about it. I feel relieved combining them didn't loose anything and even better, I feel inspired to write more about the little things. It no longer matters where I post it, just so long as I post it.

So family, friends and followers, you're not imagining things. Lauren and Living with Noonan Syndrome has been joyfully refined.

Here's to "gettin'er dun"!

Joy

When I pick Lauren up from pre-school, all the parents wait in the cloakroom across the hall. The teachers then let the kids out one at a time.

When the called Lauren's name to come out to Mama, she ran through the doorway with a huge grin on her face, her arms and legs pumping. She pretty much jumped into my arms and declared, "Me no cry today!"

Nothing too witty

Only one word appropriately describes today - crazy.

It was a school day for Roman so includes all that's necessary to get an SK off for the day including breaky, potty breaks and a packed lunch.

It was also a school day for Lauren which includes all the same except no bus. For her it's a ride in "my GeePee" as she calls it and her insatiable need to "do it myself" including climbing into her seat and doing up her seat belt (which is still the 5 point harness so nearly impossible for her tiny fingers to manage).

Next was coming home to work out, do the banking, merge the two blogs into one, figure out how to manage the look of said united blog then accidentally discover that my RSS feed on thesweetone wasn't working properly and open up an entirely new can of web techie worms.

After picking Lauren up again, we rushed home for lunch then out again for a speech therapy session with Veronique. She gets amazing things out of Lauren and there's lots going on which we'll save for another post. Let's just be satisfied with the statement, there's a lot to do but a lot of good news too.

After speech therapy, which ran a bit long, we rushed home to herd the two cats into the crate for a trip to the vet. Nasty things have been happening in the litter box that needed sorting out. An hour and $200+ dollars later, it's the food they've been eating. It was highly recommended and all the rage for cats being grain free and all. Canadian made too but turns out it was too rich for our two and has simply trashed their intestines.

Meds should have them all sorted out within a couple days but getting pills into Poppy is proving to be a true challenge. Four tries later it took two of us to get a mostly dissolved pill down her throat. I'm sure she'll be mad at me for days...

Theoretically tomorrow should be more calm.

Oh, and that merging of blogs thing? There's be more on that later too. All part of simplifying.

Perfect moments

Individually, the components of the moment are unremarkable and even mundane.

First, there was the sky being a simple blue.

Next, the backdrop of fall colours on the treelines in every direction and the cattle corn drying in the sun, aching for harvest.

There's the strong wind and multicoloured leaves dropping and drifting like snow from the ancient maple across the road.

There's me sitting cross legged on the living room floor far too close to the TV for my mother's comfort and Lauren sitting on my lap, leaning against my chest fixated on Lighting McQueen.

And the crowning to this moment - a combine chugging along the road towing the harvest head behind like a child holding Mama's hand.

A perfect, countrified, stay-at-home-mom moment brought to you by John Deere.

I'm in love!

With a printer if you can believe it.

When I left the ad agency and the web department I built over 5 years, I gratefully swore off technology. I had my computer and my basic makes-calls-but-doesn't-do-anything-else cell phone and was content. No Facebook or Blackberry for me. I was happy to be a country wife with kids and property instead of bits and bytes.

Of course, along with a computer comes a printer. And it's a necessity. We do have a small business and I do like to scrapbook. Getting photos printed elsewhere can rack up the cost exponentially (Do I hear an "Amen" from the scrappers out there?) so when our last printer died the death of poor colour calibration, we shelled out for a new Epson. And by "shelled out" I mean bought a refurbished year old model that does everything and didn't even hit three digits. Expectations were not high for this little black box.

Today there's been a lot of chatter on the Noonan Syndrome list-serv about Malignant Hyperthermia. When MH came up in my early days of Lauren's diagnosis, I was stunned. I actually KNEW first hand from a good friend what this was and here it was creeping up into our lives again. Val was gracious enough to photo copy and mail "A Guide to Malignant Hyperthermia". Scanning and patching together an emailable document just wasn't in her scope of time or energy.

How does all this tie into my love affair with my newest printer? As I was scanning the document page by page to PDF format onto a memory card so I could patch it, post it and share it with the list-serv community, I clued in to the presence of [ gasp! ] the document feeder. Printer has everything remember? Right. Document feeder. Hmmm... wonder if document feeder plus scan to PDF plus save to memory card will do it AAAALLLL??

Insert video of me doing the dance of printer joy when in moments the entire document was scanned, patched and saved without me doing anything more than popping the pages face up in onto the top of the printer. Check it this sweet PDF! okay okay so it's not rotated the right way but seriously! That's what Adobe's "rotate document" button is for!

Angels were singing I'm certain of it.

Seems extreme for a printer right? Not for a mom of a 2 1/2 year old who's insisting on "go ouh-wide Mama!" even though it's drizzly and chilly.