Lauren, Roman, Us - Living with Noonan Syndrome

Oh the Romance... NOT!

2012-02-14T13:01:00.002-05:00

Nothing very romantic about a new transmission or the dent it puts in the wallet. Hell, it's not even a dent - more like the meteor crater that wiped out the dinosaurs. Too bad it didn't wipe out my vehicular dinosaur.

Actually, come to think of it, if I was driving a vehicular dinosaur, I wouldn't be replacing the transmission because it would have been built with real metal not (get this...) aluminum.

Seriously? Aluminum? So... if I was McGyver (cutie patootie!) I could fix it with the foil I used on last night's dinner..?..

But the deed is done, or, at least, requested to be done. It'll be another 5 days before the new transmission comes in then a couple more days before we get'er back.

So this morning's conversation went something like this:

Happy Valentine's Day dear. Here I bought you a transmission!

Oh. Happy Valentine's Day to you too dear. Here. I paid for the guys to install it for you...

Malibu Barbie

2012-02-10T18:53:00.004-05:00

The Jeep is officially "in the shop". I joked with our mechanic that the Jeep must like their heated shop more than it likes our garage because it keeps spending time there instead of here.

We have three options for fixing our 2nd gear dilemma. Actually, we have about 5 but scrapping it or trading it in aren't viable options!

We can get a brand new transmission ($3,000 for the part alone), we can get the existing transmission rebuilt (somewhere between $1,500 - 3,000 depending on the internal damage done by the messed up synchros) or we can get a used transmission ($1500 for the part). The used one has 60,000 km on it which, to our guy, is a great deal. Until I pointed out that both transmissions we've already blown through have had synchro issues at 45-60k. Means the used one is just about due!

We've opted for a rebuild hoping that the damage will be minimal and therefore the cost will be a bit lower.

Thankfully the in-laws left a car behind while on their travels (psst... G and G... we have your car....). While I'm not sure I'm a Malibu kinda girl, Lauren looked really cute lounging in her car seat with her white framed sunglasses on.

She looked like a content little Malibu Barbie.

Growth Hormone + Noonan Syndrome RAF1... the jury is still out

2012-02-08T10:51:00.000-05:00

It's been an interesting week of learning for me - which I love!

A woman - now a friend - got in touch last week about growth hormone therapy (GHT) for her daughter. Seems the endocrinologists at the hospital they work with don't support the use of growth hormone therapy for Noonan Syndrome (NS). The doctors won't entertain the option period.

Meanwhile our endo and that of a family in another major Ontario city do support it and are actively pursuing it on behalf of our children.

This led to me connecting with a geneticist who's an expert in Noonan Syndrome and from there, connecting with two cardiologists, one of which is also a molecular geneticist, who were able - and willing - to share information AND an opinion on whether GHT is a viable option for Lauren.

Turns out, the "for" vs "against" are still 1:1.

One cardiologist is "for" GHT (in general, not specifically for Lauren) while the other is not. That's okay. Better to have opposing opinions than none at all!

The molecular geneticist, when given the exact location of Lauren's gene mutation, was able to tell me more about her exact mutation. Not just that it's RAF1 but that within RAF1, Lauren's mutation is at even higher risk for HCM (hypertrophic cardiomyopathy). Bruce explained that within the RAF1 gene, there are three hotspots or areas within the gene where mutations result in NS. Two of those three hotspots are known for HCM while the third, more rare, is not. Lauren's is one of the two. This means Lauren's chance of developing HCM is actually higher than the general RAF1-HCM phenotype ratio as those ratios are based on all three RAF1 zones.

This means she's at a higher risk than we originally thought.

However, there's no data about when HCM starts if it isn't present at birth so we don't know for certain that Lauren is outgrowing her risk but it seems fair to expect that if she hasn't developed clear signs by the time she's 7 or 8, we may be more clear to start GHT.

7-8 years of age is the traditional age to start HCM. In Ontario though, it seems some endocrinologists are starting much earlier to see greater gains.

The other important piece of information answers the question: Does GHT elicit HCM? and the evidence says no. In our particular case though, we can't determine whether RAF1 patients have participated in the studies because most studies have been done prior to the identification of the NS genes. That, combined with the high percentage of HCM cases in RAF1 means the population of RAF1 patients within the studies is likely very slim.

So not that much help in the end except the implication that if Lauren isn't showing clear signs of HCM, starting GHT is not going to cause it. If she develops HCM, she was going to develop it anyways and might have gained a few inches in the meantime.

But then the argument continues that height is a societal issue not a health issue and ultimately, is it worth the risk to her heart, given the absence of data?

So the jury remains in deliberations for another couple years.

Kindergarten Registration

2012-02-07T14:30:00.001-05:00

It's done.

All that can be done - by me - is done.

Yesterday I picked up the French Immersion Kindergarten / JK registration package, with the usual name, address, prove-you-live-in-the-district type questions.

And that one little box titled "Medical Condition" where I have to write, in bold, permanent ink: Noonan Syndrome. That box that most of the parents entering the school probably don't even realize is there.

It's official. She's into the school system and she has a "syndrome" tied to her name and being.

I met with the principal today with the completed application form in hand. Attached to it was the audiologist's report recommending a soundfield FM system for her classroom. Also attached was a document "from" Lauren explaining her uniqueness, how each thing affects her behaviour and how her teacher can help. The last document added was a copy of the NS growth chart marked up to show how tall we can expect Lauren to be at the start of each school year, how tall that is in "normal years" compared with how tall her peers will be.

The principal asked if Lauren has any language acquisition issues and was satisfied with my answer. Lauren is fine in that regard and her SLP is fully supports Lauren learning a second language. Hooray! It had been suggested that some immersion schools try to dissuade parents of children with SLP on their health record from enrolling their kids in a second language system. One less argument to make.

She also asked whether Lauren would need an EA to which I confidently replied, "No. If there's one there already that can help with little things then great but no. She won't need an EA." The principal's reply was something like "Then just some really good helpers..." Yep. Did I mention I really like this woman? No? Well I should have. She's already thinking about what will make it all work.

The audiologist report went today because I've been warned by the KidsAbility hearing coordinator that it can take a very long time to get technology implemented. The principal confirmed this and promised to get the calls started right away to make sure WE do everything we can to get it in place for September.

I came away from our meeting with a sense that Lauren's condition and the challenges it presents are of interest to her. That Lauren is not just some thing to be "dealt with" and that we'll be working together to get things in place. It won't be "us" against "them" or, if it is, she'll be in part of the "us" and not the "them".

I'm still a bit freaked out. Not overtly but I can feel it in my gut and shoulders.

Nothing more we can do. The rest of the paperwork from all our service providers are collected by another organization then it all goes to the school. After that we have a meeting with the school, all the relevant therapists and the teacher in April or May.

Til then, we wait.

Skipping Second - Gear That Is

2012-02-06T07:55:00.001-05:00

Just when we thought it was over... the Jeep goes back in for service tomorrow (see "This is Getting Ridiculous" which doesn't mention the fact that the Jeep ended up off the road for nearly two weeks over Christmas). The guys are going to check to see what's up with the transmission. Driving is fine so long as I don't try to get into 2nd gear.

So.... I don't.Not the smoothest ride ever but at least we can still get where we're going!

Don't let me read the local paper any more...

2012-02-02T19:48:00.003-05:00

I don't always read our free local newspaper. I don't often read any newspaper. I always figured it was not from lack of interest, just lack of interesting content. Now I think it's because people piss me off.

For some reason, I picked up this week's edition and started my way through it - made it as far as the "Letters to the editor" where, after only two of them, I had to put it down in muttering fury.

Seriously people. Get over yourselves.

Perhaps not everyone has a blog... though in this day and age how can they not?... so they use the local paper as their forum to air their beefs. This time it's with our school.

To be clear, not all the schools in the district, just the one my son goes to that is currently undergoing a boundary review.

It happens people. Get over it.

The background is this. Our school is built for 300-400 students if there are enough portables. With the all-day, every-day kindergarten program being implemented September 2013, added to population growth and the surge in French Immersion enrollments, we're looking at 500+ kids. There physically is NOT enough room.

Ergo, boundary review.

Conclusion? The kids being bussed in from another nearby town should be bussed the other direction to the pretty near brand spankin' new school instead of to our old, worn out, my hubby went to it it's that old, school.

And the parents are pissed about it. I get it. People don't like change. They don't want to have their kids go the opposite direction they do in the morning. It's a pain to have to drive the other side of town when you have to go to an appointment etc etc etc.

What triggered my muttering this morning were these two letters. First, a mom who has decided rather than send her kids to the new school, she will not enroll them in French Immersion at all. - Oooo! take THAT school board! - because the hassle of them going the opposite direction was too much.

So what you're saying is you'd rather have convenience than the best education for your child?

The second letter the mom ~~bitched~~ complained that the bus ride to the new school would take longer (technically it is more kilometers but it is actually LESS minutes in transit because of the route speeds) and her JK kid wouldn't get home until after 4pm.

Here's my suck-it-up-lady comment "Suck it up lady! My kid is at that school. He started when he was 3 1/2 years old and got home at 4:20pm for two years and shocker! he survived just fine. Oh.. and did I mention he also had to transfer buses? At 3 1/2? yeah. and if he and WE can do it, so can you."

We live closer to the school than they do and he still gets home around 4pm and he's the first one off.. So... somebody has to be dropped off later. Those kids getting off the bus after mine are definitely later than 4pm and none of us are complaining.

Maybe we should be.

Maybe I'll write a letter to the editor.

Old Hair, New Hair

2012-01-26T13:10:00.000-05:00

Here's how it was though add an extra inch or so since the picture is over a month old:

And here`s the new:

JuJu said she could feel that it was thinner. She`s talented so I don`t doubt this in the least. A bit reassuring that it wasn't "just me". Feels funny to have a picture of me without Lauren in it. I figured I best take it before I washed it and couldn't get it to look the way JuJu intended...

I'm okay with it though still frustrated that it needed to be done (see Lingering Effects for the rant...).

The lingering effects of Toxic Shock

2012-01-24T10:11:00.003-05:00

For the most part I feel much better. When people ask I generally say I'm fine. Does anyone really need to know that I'm still tired half the time, that it makes me cranky, that I'm borderline paranoid about getting sick again or that my hair is falling out?

And this hair thing bothers me. It shouldn't but it does. I have a lot - and I mean a LOT of hair. It's thick and fairly long and JuJu does a great job making it look amazing. The current cut I really like and that, I think, is the problem. My hair isn't, as JuJu put it, "my security blanket" and I've had short before. I've had short and boyish, short and sassy and just plain short. It always grows back. This time will be no different though I'm a little concerned that everything I've lost will come in grey...

The difference between that short and sassy and this short and sassy is the matter of choice. I'm not choosing short and sassy, I'm being forced into it by my own body. I don't know how long the shedding will last or how thin my hair will get. I already feel a difference and it's certainly not slowing down.

So regardless of how I feel about it, it has to go. At the very least, if JuJu cuts it short enough, I can blame it on the cats.

Finally on the slopes...okay... slope

2012-01-21T21:50:00.003-05:00

We have enough snow (today at least) to spend a bit of time tobogganing down the slope in our backyard. Technically it's further back than the front yard but it works. It's steep enough to get a bit of speed but gentle enough that Lauren can go on her own and walk back up again. The last run had Roman zip across the driveway and into the fence. At least he missed the big maple tree...

The view from here

This year, no broken leg to interrupt toboggan season!

It's all about Ears

2012-01-16T21:43:00.000-05:00

It's that time of year when we start our annual and semi annual visit schedule. We're also amping up our occasional therapies arming ourselves for JK registration and all that goes with the quest for accommodations.

Today started with an appointment with our local ENT to clean out Lauren's ears. I asked Dr. D to also check her ear drums (he doesn't usually) because our second appointment of the day was with the audiologist.

There's still some fluid build up and the conversation turned to inserting tubes to drain them. We know from previous appointments and fluid filled ears that Lauren's eustachian tubes do drain her inner ears on their own. She`s been infection free (not like Roman... figures. The kid with the quote unquote normal ears gets the infections...) so I`m hesitant to go that route. I know it can be a good thing. I also know that fluid build up is a normal part of childhood (and life...) and believe that surgery is a step I`m not yet willing to investigate.

Predictably, the fluid in her ears did have an effect on the results at the audiologist's. Lauren did really well at the tasks. Each time she heard a sound she was to put a peg in a board or a chip in the slot or stack a block.

Lauren waits for a peg and a sound with the little plugs in her ears

This was the first time she's done the tasks with Lynne and not me. It gave Lynne a chance to really see how Lauren was reacting to the sounds. Lauren's eyes light up when she hears the noise and connects to the task at hand. It's not something you can see from the booth. Today Lauren's reliability was good meaning the results on paper were quite accurate to what Lauren really was hearing. The results though were the worst we've had.

We've always known there's a deficiency and it usually floats around the 20db mark (meaning she doesn't hear things quieter than 20db and that everything sounds quieter to her than it does to us by that same 20db). This time she had a hard time hearing anything below 40db until it reached the higher frequencies.

Both Lynne and I are blaming the fluid in her ears but regardless, the recommendation to the school board is the same: an FM sound field system for the classroom. It's a room based system so all the kids will benefit and Lynne assures me that the school board usually implements recommendations made by an audiologist. This was encouraging as I anticipated there would be a fight from the board or the teacher. The "bad" news is that if the fluid stays, we'll have to talk more seriously about tubes. If we find that her hearing is deteriorating regardless of the fluid clearing, then she's moving from "mild" loss to "moderate" loss and we'll need to discuss the potential of personal amplification to make sure she isn't missing anything.

Especially since we're enrolling her in French Immersion. Her language acquisition hasn't been a problem to date but if her hearing is declining, she's not going to be able to keep up with a second language.

Some Chickens Really CAN Fly!

2012-01-13T22:04:00.000-05:00

Get the right chickens (those from the game Chickyboom work particularly well) and they can be taught to fly:

First, set up a launching mechanism:

Balance chicken:

Prepare chicken for flight:

Launch chicken!

Celebrate chicken taking flight. While chicken looks like it's headed straight for Lauren's face this is an illusion. No Lauren's were hurt in the making of this episode.

Lauren did however, check with the Chicken, "aww, are you okay chicken? You need to land on your feet. Try again!"

Definitely NOT Procrastination!

2012-01-11T20:00:00.002-05:00

No one can ever accuse me of being "last minute". Not ever. Especially not with respect to Lauren or health stuff... or anything that I can actually control. Which is pretty much nothing but I do what I can with the time I have.

Enter "Shopping for Junior Kindergarten."

Lauren struggles with opening bottles that have twist tops. This includes water and juice bottles. She also has trouble with plastic containers like disposable Ziplocs that have a tab corner and require quite a tug to get open. It hasn't been an issue. It really isn't an issue because there's always someone to help her.

Except that it won't always be that way.

The bottle opening challenge is the one that rears it's ugly head the most as it includes her water bottle in the car and pretty much every water bottle on the planet that`s not a sippy cup. She can close the one she has, but she can't open it. Can I get an "amen" from the moms out there with twisted shoulders gained through repeatedly reaching to the back seat to get, open and return water bottle tops?

So a-google-ing I go. Funny that using Google can be a verb.

All my searches - "easy open water bottle" "water bottle preschooler" "arthritis water bottle" - came up with bottles but nothing that was any different than what we have except one and I think it was a fluke.

Contigo makes a water bottle with button to open a valve. Being the skeptic that I am, I wanted to make sure Lauren could actually get her tiny paws around the cup and squeeze the button with enough force to open it. The only place I could find them in Canada (let alone Ontario) was a place in Waterloo called Fenigo.

Turns out Fenigo is a dangerous place [for my AMEX] to visit.

From an OT perspective, it's a gold mine! We found lunch containers with tabs that Lauren can open, the Contigo cups are the perfect size and easy enough to squeeze, and then.. .there's the lunch bag... oh the lunch bag...

I wasn't going to. Honest. I wasn't. But then the sales lady said, "it's neoprene so even if something leaks inside, it won't get out." which has been an issue with Roman's lunch bag. If his juice bottle isn't closed tight it leaks then whatever leaches through his lunch bag and soaks his books and agenda.

Hence why Fenigo is dangerous to my AMEX.

So now we only one more challenge to solve. We have yet to find a thermos Lauren can open on her own. Everything has a 3 1/2" diameter which is too wide across but I haven`t actually done any Googling on it yet.

I do still have nine more months after all...

2012. So Far? So Good.

2012-01-11T18:15:00.004-05:00

We're (glance at watch to find today's date...) 11 days in and so far so good. The Jeep is holding up, no one has been hospitalized and the weather is holding. I'll knock on wood and continue to hope for the best.

Last night was Roman's first skating lesson of the year. The last time we attempted skating lessons, it started well and ended in disaster. [see January Blues] This time, getting started was a bit rough. In fact, the whole thing was a bit rough. Lots of tears, lots of pausing, not much action but he got through it so we ended well.

The instructors were very patient, having been forewarned of the previous season's broken leg, and helped him get through the 45 minutes without giving up.

When Roman got off the ice at the end I asked if he had that really great feeling "right here" as I tapped his chest. "Yep!" he said with a big grin, "And I didn't break my leg!!"

Only a mechanic can make $1800 sound like a great deal!

2012-01-04T16:46:00.000-05:00

There's this strange silver grey object in my garage. I vaguely remember it. I think I used to own one... but that was last year.

To recap, the Jeep went in for service before Christmas on the clutch slave cylinder only to find the cylinder was fine but the clutch was not. A new clutch assembly is ordered and the Jeep scheduled for the Wednesday after Christmas. Theoretically I should have it back the next day. When the boys pull her apart they find that yes, the clutch gone but it's because the flywheel is - and I quote - "worn funny". The funny wear made the clutch wear funny and, connect the dots, a new flywheel is also needed.

The dollars are adding up here. The bucks add up more because the flywheel is a specialized model and not as common to come by. Figures. It is 2011 after all.

AT this point hubby and I are both expecting the final bill to hit well over two grand. Neither of us would have been surprised by $2500.

This meant I was completely floored when the bill total, including taxes, was under $2,000. Yep. Stunned. Happily stunned but stunned none the less.

Only a mechanic can make spending that kind of money all in one place and not have an airline ticket in hand feel like a good deal.

I'm going to choose to take this as a positive sign for the new year. Yeah we're paying for repairs already and it's barely 2012 but technically this is carry over from 2011 so psychologically it's going to stay there.

This sums it up for us!

2011-12-30T12:27:00.000-05:00

Good-bye 2011, Hello 2012

2011-12-29T19:25:00.000-05:00

First the bad news - the troubles just keep on comin'. Turns out it not just the clutch on the Jeep that needs replacing but the fly wheel as well.

AND, for whatever reason Chrysler deemed necessary, it has a fly wheel that's usually used in diesel engines and therefore a) not readily on hand and b) more expensive.

Joy.

Wrong kind of joy.

The good news? There's only 2 more days left in 2011!

The other good news? Our Christmas has been wonderful. We opened presents at home on the 24th,

Roman, now in possession of the coveted Lego Fire Station, is glowing with excitement

spent the 25th with hubby's family

Lauren guards her new RC "Morphibian" car with a tight grip and "Mine!"

and the 26th with mine.

Investigating the Princess pencil set from Santa

Everyone spoils the kids because there aren't that many of them in the families.

Food was wonderful, the gifts all perfect and time with everyone was just right. I'm almost ready now to pack up the festivities and move on to 2012 -

and not just because our luck is bound to change...

"I'm not gonna make it"

2011-12-23T13:14:00.000-05:00

When it was "three more sleeps til we can open presents", Lauren very somberly said, "I'm not gonna make it...".

Present opening day has been a long time coming for Lauren and Roman. This week she had a party a preschool including a visit from the "Big Guy"

I was surprised how quickly she climbed onto his lap and how happy she was to be there.

What you can't see in the picture, is her cat tail from Hallowe'en... There have been plenty of days where we have three black cats instead of just two...

Lauren the Kitty checks out the tree and presents

Lauren also showed that boxes are still the best part of the present... or that cats love cardboard to hide in?

This is getting rediculous

2011-12-19T10:26:00.005-05:00

Roman is pretty well back to normal and back on the school bus today.

For that I am thankful.

Hubby is home and without a lot of [paid] work to be done.

For that I am thankful.

The Jeep however, is not healthy and needs [to be paid for] work to be done.

I am not thankful and not the least bit happy.

Sigh.

We thankfully have a mechanic close by who can squeeze us in tomorrow afternoon. I stopped in, with Lauren in tow, and one of our two guys came out, had a listen, took the jeep for a little spin and said.... "Mmm. can you bring it in tomorrow?" and nixed any plans we had to go any great distances today.

Sigh. Again.

It's not even a matter of "not fair" just, "sigh" and "I've had enough of this".

Endocrinology Update

2011-12-16T18:56:00.001-05:00

We were back at Mac today for our semi-annual endo check up. As usual, we started with a resident. As NOT usual, I didn't have to give the FULL educational version AND I didn't go through every detail about Lauren. When there was a question I knew was in Lauren's file, I glossed over it and said, "but that's all in her file...". I also didn't ask the resident the questions I had for the endocrinologist. Why go through it twice?

Lauren and Mama, filling the time, playing with Mama's camera...

Lauren is "officially" 88 cm tall (34.6 in) and 14.7 kg (32.4 lbs). At our appointment in June she was 84 cm and 14.1 kg. Slow growing our girl is.

She maintains the same growth curve she's been on for the past 18 months (25% on the NS chart and well off the standard charts) and will currently top out at 4' 8". Our mean parental height suggests she would be 5' 5" if she didn't have Noonan Syndrome so the topic of growth hormone therapy came up. Again. 9" is a big difference.

We've agreed we need to do the growth hormone stimulus test before we can make any firm decisions. We'll also need to discuss the matter with our cardiologist when we see her in March. We'll have our next endo appointment in June and schedule the stimulus test then.

Our primary concern regarding growth hormone therapy is the risk to Lauren's heart. The endocrinologist reaffirmed that in her practice, in all cases, no matter the genetic condition, they've had no problems with respect to heart muscle growth. Because Lauren is at higher risk of hypertrophic cardiomypathy with her RAF1 mutation, the cardiologist's opinion on the matter will have a lot more weight.

One thing the endo did say, which she hasn't often for us, is that "there's no rush".

A helpful thing that's come of Lauren sticking to that particular growth curve, is that we can predict how tall she'll be when she starts school in September. We'll be able to put her size in relation to other children her age. This in turn will help us get the accommodations she needs.

One more thing to check off my "registering for school" list.

It's the carpet bomb of medicine!

2011-12-15T14:21:00.004-05:00

The doctor prescribed Azithromycin for Roman. He had one - count them, ONE - dose late yesterday afternoon. This afternoon he hasn't stopped pestering Lauren.

None of this "meds for three days before you feel better" business. This stuff is so strong it's like we're carpet bombing every germ in his body.
Which works just fine for me. He hasn't eaten for days and already he's excited about (freezer!) pizza for supper.

Tomorrow it's off to school you go mister!

Will it EVER end?

2011-12-14T14:57:00.002-05:00

Seriously. If we need to see another doctor for a transient illness and get more medications before the end of this calendar year I think I might loose (what's left of) my mind.

Roman has been home from school all week. Okay. It's only Wednesday but to a mom who's used to some measure of freedom, being home with a sick boy and a not sick preschooler is not my idea of fun. He's been getting progressively worse leading to a trip to the doctor today.

He was actually doing reasonably well this morning until he had to walk from the car to the office, wait for 45 minutes and be generally aware for the whole time. He crashed when we got home and has yet to wake up.

Turns out he has...

Wait for it...

Strep.

Gee. Who would've suspected that? It could simply be tonsillitis but the doctor (we actually had to take him to hubby and my doctor because his pediatrician is away until Tuesday) took one look at him and, before doing any exam, said, "I think he has what you and hubby had..."

He asked Roman if his throat hurt generating a "yes" reply. In three days Roman has never said anything about a sore throat. Have a look inside his mouth and HUGE swollen tonsils.

I'd feel that lousy too especially with the high fever he's had and not eating anything.

Doc has prescribed some serious antibiotics to take care of the throat, the external ear infection we've been treating with drops and anything else that might be hanging on (we've been suspecting a sinus infection for a while now...)

Fingers crossed the doc's prediction that Roman will start feeling better in 24 hours comes true!

KidsAbility President's Reception

2011-12-11T14:00:00.001-05:00

Friday was an exceptionally busy day for Lauren. As an Ambassador for KidsAbility, we were invited to attend the President's Reception to honour large donors from the past year.

As our deal stipulated (Lauren's and mine that is) she had a new dress for the event. It's also her Christmas dress so we've had to lay down the law about when she gets to wear it again.

It was a long afternoon for her with a lot of sitting "still", but she did her jobs beautifully - first handing out candy canes to everyone attending, then handing out thank you gifts at the end of the event.

She looked adorable and was the best dressed one there... the funniest part? Her name tag wouldn't stay stuck on her velvet bolero jacket. The biggest patch of dress I could find without velvet detail was on her butt...

About Ducks - Puddle and Birthday

2011-12-08T19:26:00.001-05:00

About Puddle Ducks

Lauren LOVES puddles - big, little, whatever. If they're there, she'll find them. She loves her yellow rubber boots even though they're at least one size too big. Even more, she loves her rainbow umbrella. If there's even a hint of rain, "Need my umbrella Mama!".

She is my puddle duck.

About Birthday Ducks

Tomorrow is Roman's 6th birthday. Hard to believe sometimes. And looking outside with just a trace of snow remaining, it's hard to believe there were 4 inches and more on the way the night / day he was born.

For his birthday, I let him choose what cupcakes he wanted from the cupcake books ("Hello Cupcake" and "What's New Cupcake"). He picked these yummy puppies... or, more appropriately, duckies...

There are 20 of them going to school tomorrow for his Grade One class... four of them are bottoms up... They really were easy to make though the last two look a bit rough. The icing was getting thick again and there wasn't enough left to dip properly. Thankfully they're all 6 and are (hopefully) too excited about cupcakes to be critical.

Follow the Star

2011-12-08T07:00:00.000-05:00

This past weekend signaled the start of Christmas. Roman and Lauren both performed in the church Christmas pagent. Lauren "sang" Bells are Ringing with the other preschool kids and did remarkably well considering it was past her bedtime.

Lauren, in her "party dress" happily ringing her bells.

I forget just how tiny she is sometimes... and adorable

Roman was a shepherd in Follow the Star which is a cute, short musical. It was really well done. All the kids were amazing and they actually did pretty well with a lot of complex lyrics.

In costume without a single complaint. My how he's grown up!

Surrounded by angels and our friend Izzy nearby

Sunday we put up the tree. Because Roman's birthday is coming up, we gave him the choice: the tree could go up on Sunday or wait until after his birthday. He's not old enough yet to feel like his birthday gets overshadowed by Christmas so was happy to have the tree to decorate.

Oh the fights over that silly hat...

Next Lauren decided it would be really fun to ride on Roman's back. And he thought it was the most fun ever...

Lauren would climb on then Roman would do his best to dump her off. They tried it the other way once but as expected, Roman is way too big for Lauren to dump. There was a lot of joyful giggling while Mama and Papa watched, glasses of wine in hand.

A wonderful start to the season. A light dusting of snow, some busy days ahead and we're slowly getting into the spirit of the season.

Toxic Shock Follow-Up Appointment

2011-12-07T18:13:00.001-05:00

It seems my diagnosis was more art than science. I had my follow-up appointment with the ER doctor today. He was happy to see I was feeling better - which I am - and quite happy to answer questions.

First off I asked (given the stats and all), "So... it was Toxic Shock?"

His response (and here's the art vs science part), "That's what we're goin' with"

Nice. "Goin' with"? Seriously? I guess if the symptoms fit they've got to call it something.

They also found e-coli bacteria but e-coli wouldn't cause the rash. It does however create a bio-toxin so could have been the infection source that led to TSS. Not sure the stats on that one...

Nutshell? They just don't know. In his words, "You were sick, now you're better. It's a good outcome."

I'm not an any significant risk of recurrence and at my age (as he so eloquently put it) I've been exposed to so many things already, it's unlikely I'll get something like this again. That said, if strep shows up in our household in the future, we need to be proactive and treat the whole family.

There we have it. I was sick, now I'm better. All good. And I am, for the most part, back to normal. This past weekend seemed to be a turning point. I still get tired but I'm not desperate for a nap. The more time passes, the more normal I feel. I still get the shakes sometimes - like I've had too much coffee but the doctor didn't have any answers. He cautioned that I should give it a few months then follow up with my family doctor if it's still a problem.

I didn't get the closure I was hoping for but with that appointment out of the way, life will just have to carry on.

You're One in a Million Ba-by!

2011-12-01T08:32:00.001-05:00

Everyone wants to be special, to have that "one in a million" feeling. I'd be happy to trade it in for a winning lottery ticket.

Having had Toxic Shock Syndrome (and hopefully the world will forgive me dwelling on it a while) I've now done my due diligence in online research. Primarily I've been trying to find information about how long it takes to recover. After a week in hospital and now almost two at home, I still feel tired, easily worn out and often down right cranky.

In my research, I found that the incidence of TSS experienced by women because of tampon use is 1 in 100,000. Infrequent considering my daughter's genetic condition is considered rare and it's 1 in 2,500.

Imagine then my surprise to find that TSS caused by Group A Strep (referred to as GAS), which is what I was diagnosed with, is estimated to have a rate 1.2 to 7.3 per million individuals.

The same article was the first I found to outline the recovery time as being 2 to 3 weeks but also listed mortality rates for GAS as significantly high: up to 30% to 70% of cases.

So not only am I one in a million, I'm a very lucky one in a million.

This *should* then make me extremely happy, relieved, joyful, insert adjective here, but I find I'm actually quite a bit - and forgive the technical term here - "weirded out" about the whole thing. No tangible reason why, no logical reason why, just am. It's not a factor of what I could've lost or anything similar even. When I was sick I was just sick. It wasn't anything crazy or overwhelming, it just was. I was there, I was treated, I got better - sort of.

I suppose it's the recovery period that's getting to me. I expect to be sick, get better and get back to everything that needs to be done without residual symptoms - just like normal run of the mill illness. But it wasn't run of the mill and I think I`m having some difficulty accepting that.

I have a follow up appointment with the ER doctor next week so hopefully he'll shed some light on why I was the one in a million, whether it truly was Toxic Shock and whether I now have the necessary antibodies to manage strep in the future and whether the TSS can reappear without strep as a trigger.

Hopefully having some answers will give me peace of mind.

You had what? I've never heard of that....

2011-11-26T17:39:00.001-05:00

Usually the "I've never heard of it" phrase comes in conjunction with Lauren's Noonan Syndrome. This time it was for my bout with Toxic Shock Syndrome.

"What? What is that?"

Most women who've read a tampon box have probably read the warning about Toxic Shock. I don't use them so have only heard in passing. Turns out Toxic Shock Syndrome can happen - though rarely - as a reaction to toxins produced by StrepA bacteria. It's not pretty.

After weeks of sick kids and sick hubby it was finally time for sick Mama. Yep. I actually had to go to bed. Every mom out there is sucking in that gasp! of horror. It must have been bad. No Mama ever has time to actually be sick!

It started Saturday, well, honestly, Friday, with just a feeling of blegh. I went to bed Saturday afternoon and after sweats alternating with chills, by Monday morning had a crazy rash that looked like I'd been sun bathing nude for 6 hours. It didn't itch, just was very sunburnish red. By Tuesday morning it was clear I needed to see someone. Rather than try to get in to see our doctor, off to the ER we go.

There were a lot of amazing moments that God steered us through that day and those that followed - there were people who could come look after Lauren and someone to meet Roman's bus. There was only one person ahead of me in the ER and they had a bed to put me in right away. The doctor on call was a staff favourite. The nurse assigned to me was compassionate and an expert at IVs and so on.

Upon admitting to the ER I gave enough blood to save a small nation but it would be at least an hour before any results came back. Dr. K (the nurses favourite) knowing there was an infection and mentioning Toxic Shock, had me started on broad spectrum antibiotics by IV right away.

From there a bed came available in the Critical Care Unit (aka ICU) in a room all to myself. Because the source of the infection creating the toxins was unknown, I was on "contact" protocol. Everyone had to wear gowns and gloves whenever they came in to treat me. This, despite how it sounds, is a good thing! It meant the entire time I was in hospital I had a room to myself - not always something easy to come by - and each time, that room was at the end of the unit, away from all the ruckus and activity. Each nurse I had was amazing. The nurse assigned to me for the first night broke the rules and gave a fevered patient a nice heated blanket when I couldn't get warm. She also found me a tooth brush and tooth paste. She was my hero of the day. The nurse the next night found a fan to help cool the room and make me more comfortable. She also made a jug of punch - cranberry juice, orange juice, ginger ale and the jug packed full of ice - out of her own stash, just because she knew I would like it. And I did. She was my hero for that day.

The whole time I'm being pumped full of antibiotics - two different kinds - and more fluids than a camel can carry.

By day 3 they were ready to move me out of CCU into the "step down" unit. They still hadn't found the cause of the infection and triggering toxins but given hubby's diagnosis of strep throat, they were going with StrepA as the cause. The bacteria was in our household and it was the only logical source. The antibiotics, IV fluids and contact protocols carried on to the Step-down unit and I still "enjoyed" a room of my own. It was 5 days before they lifted the contact protocols and hubby and I decided it was okay for the kids to come see me.

I knew one day Lauren would have a night without me. This was NOT the way I had envisioned it and certainly not for 5.. then 6 nights.

In the end I was very lucky. While my blood pressure had dropped while I was sick at home, my oxygen levels had remained high and circulation had continued to my vital organs. Things went swiftly at the hospital and my body responded well to the antibiotics.

Nearly a week later on Monday I came home and have had a week of help from Oma to get over the next hump. I still often feel like I've been run over by a truck and I definitely need to crawl into bed for a nap a couple times a day but today, a second week after it all started, I drove Lauren to the Little Gym and survived to tell about it.

The entire month of November has gone. Gone. Starting with sick kids through two weeks of me being completely out of commission, it's hard to believe there is now only one month til Christmas.

And I will savour it.

Finally! A doctor I really like!

2011-11-09T20:48:00.002-05:00

Today we met a doctor I can relate to, trust and actually like. Seems a bit dramatic but we've met a lot of doctors and the quality isn't always up there.

We arrived on time and there was only one other family waiting. Right away I'm feeling pretty good about this. Within a few minutes we were escorted to our exam room. Not the prettiest room we've seen but certainly not the worst. We settle in and end up waiting only 10 minutes or so - not even long enough to get the stash of Hot Wheels out of my purse. Impressive.

In walks a doctor who is personable and talks to Lauren as if she's 3 1/2. Not like a baby, not like a teenager who would understand everything but warm, gentle, straight forward. For once we didn't have to go through Lauren's entire history AND he'd thoroughly read the entire report from the sleep clinic. AND, not only did he know what it all meant, he also knew about Noonan Syndrome and what that all meant.

I can still hear the angel chorus.

Also, he some how seemed to know every question I was going to ask and answered it before I needed to voice anything. Contented sigh.

So here's how it went. Dr. K checked Lauren's ears (one is filled with fluid. No surprise there since everyone here is sick but me.) and her throat. Next he went to find the tiny scope to put up her nose. "The one we use with preemies" he stated. Nice. Recognition that my daughter is small, that her nose is tiny and that the whole ordeal for her is going to be less than stellar. Lauren agrees to be brave and, while she was howly - and who wouldn't be with something stuck up their nose - she stayed really still.

The results: her tonsils, on a scale from 1 - 4 are about 2. Her adenoids are 70% which I think is how much of the airway they take up.

Dr. K clarified that while the sizes aren't huge and aren't small, what works for each child is different. Given the results of the sleep study and combined with the hypotonia inherent to Noonan Syndrome, they are, in his words, "too big for her".

[ On a side note, he clarified for me that Lauren's obstructive episodes during sleep all occurred during REM sleep. Not as bad as it could be but not ideal as REM is the restorative sleep she needs to make it through each day. He also noted from the study results that Lauren has a lot of sleep disturbances throughout her whole night, averaging 10 per hour, which may be more obstructive episodes that simple didn't register that way. Did I mention that I really like this guy? ]

We have three options. We can jump right in and have the offending organs removed, we can wait a while and expect to have the removed when she's older or, we can do nothing at all.

Here's how it breaks down.

Having surgery is standard in this circumstance. It would be at Mac and the doctor we met today would do the surgery. It takes about 30 minutes but has a tough recovery lasting 2 to 3 weeks and Lauren would likely lose up to 10% of her body mass in that time. "Normal" children go home surgery day. Children with syndromes of any kind are kept at least one night. We could expect that she'd be in for 2 or 3 days, possibly up to 5 or 6 and primarily for pain management. "It really hurts" Finally. A doctor that actually admits that kids hurt, that it's not just life as usual right after.

Waiting to have the surgery is the next option. We'll face the decision again and again until "later" is reached. If we wait til she's older than 7, the potential for bleeding complications increases - for all kids and for no known reason. The risk to her heart gradually increases over that time and, if we decide to start growth hormone therapy, her adenoids and tonsils will likely get bigger and she'll really need them out. The healing process for kids between 3 and 7 seems to be the quickest but waiting means she's more likely to comprehend why it's necessary.

Not doing anything at all is, technically, an option. It means her apnea will continue. It means the apnea will put further strain on her already compromised heart. It means we may not be eligible for growth hormone therapy. It means she'll be at a disadvantage from sleep deprivation* and all that goes with it. The ultimate worst case scenario would be heart failure from the added stress of trying to pump enough oxygenated blood.

I asked Dr. K, "If she was your daughter, what would you do?" which he took a moment to ponder. He didn't launch into a quick patronizing "Of course I'd do it" but rather a considered (or practised?) "Well. I'd probably do the surgery. Because her sleep is so disturbed and we don't know if it's because of apnea or not, and she needs her sleep, I'd do it."

So essentially, her adenoids and tonsils need to come out so we can determine whether they're the cause of her obstructive apnea. They're not ever going to shrink on their own. In order to solve the sleep issues, we need to tackle each thing in sequence. Given Lauren's best quickest recovery period is in the next year or two, deliberately waiting isn't in her best interest.

Thankfully, some waiting is required as it will be 6 - 12 months before her date would be set (perhaps because it's elective) giving us plenty of time to change our minds.

If I look at it analytically, it's just like the decision we made about fixing her ptosis last year (funny... the clothes she's wearing in that entry she wore yesterday including the now very grungy crocs..) We elected to correct her droopy eye lid so it wouldn't be a hindrance to her when she's older. This new decision has a lot more medical weight behind it but ultimately is about investing in her future.

I signed the paperwork today.

PS: Alice, if you're reading this, tell my mom I'll tell them all about it on Sunday. ; )

* Sleep deprivation will either show itself as extreme and on-going fatigue or, in many cases, the opposite as learning disorders, hyperactivity and ADHD type behaviour.

Off to the ENT

2011-11-09T08:21:00.001-05:00

After having post-poned our appointment once already, today I'm hauling Lauren off to Mac complete with slimy nose. Getting the appointment involved a lot of phone calls and hunting down of reports but finally we're in.

This one is in response to the sleep study results and I'm not willing to wait any longer to find out if she's going to need surgery.

Roman meanwhile, is still feeling miserable. This morning he woke again with a sore ear and continues to have impaired hearing from fluid build up. It's officially been weeks. We saw the pediatrician last week who basically dismissed us. Guess it's the typical kid cold going around and we'll simply have to live through it.

The funniest thing at that pediatrician appointment? When the office administrator asked for the health card and, without thinking, I gave her Lauren's. I took both cards out of my wallet, checked the names carefully and handed Lauren's over.

Since I can't remember the last time I used Roman's card, I guess I shouldn't really be surprised...

Hallowe'en(ish) Moments

2011-11-03T19:36:00.002-04:00

Hallowe'en could come and go without fanfare and I'd be just fine with it. There's nothing like driving all over the county to find a pumpkin the day before Hallowe'en with two kids repeatedly whining "where are we going to get a pumpkin? Are we still getting a pumpkin? Where are the pumpkins?"

Lauren sorting seeds from goo so we could roast them.

But as they both wanted to carve a pumpkin (thank you so much Dinosaur Train) we did the deed. The "both" wanting to lasted until Roman saw how gooey the insides are. In that instant it became a "Lauren and Papa" project. Roman drew a design for the face on paper so his participation wasn't completely supervisory in nature.

Roman's school class was also having a party. Rather than send processed snacks, we made mini cupcakes complete with M&M spiders.

Icing spiders complete with thread to hang from

As we know very few people that live within a 5 mile radius, we arranged for Roman to go trick-or-treating with a neighbourhood family instead. The youngest member of that family is the same age as Roman, they were in the same kindergarten class and all four siblings kids love to have Roman around.

When I dropped him off, I felt bad - what kind of mother am I that I send my kid out with someone else for his first trick-or-treating night? But when he came home (very late) completely glowing, I knew it had been the right decision. He wouldn't have had nearly as much fun T-or-T'ing with just me.

Meow!!

At one point in the evening, in the truck, when it was well past Roman's bedtime, Roman declared in a very matter of fact voice, "My eyes want to close but I'm not going to let them." That sounds like my kid.

With ears and tails... and a candy bucket that was way too small...

The parents also said that when people gave him treats he would tell them about "my sister" and how she can't have fructose. Most people were confused by this (and rightly so. Who, other than us, has heard of or cares about fructose??) but I appreciated how he was looking out for her even though she was home in bed.

This attention to detail about his sister continued after school on Tuesday when he sorted his treats. They went into two bowls - Things Lauren Can Have and Things Lauren Can't Have. And she isn't even required to ask his permission to have anything from the Can Have bowl so long as Mama says it's okay.

How sweet is that?

For the record, Lauren also enjoyed Hallowe'en. For her it started last Tuesday when I finished making her tail and continued through this week. Tail and ears made an appearance at least once a day for the whole week including the full ensemble to school again on Tuesday.

Oh... and those bowls of treats? Barely touched. Maybe I'll hide it all away so Santa can use it as stocking filler...

The littlest tadpole

2011-10-25T10:23:00.001-04:00

Going swimming in a public pool is supposed to be the great equalizer. After all, no one looks good in a swimsuit. Yesterday's swim lesson for Lauren was particularly hard for me. Instead of showing how much fun Lauren has, how she loves to be in the water and how she's like every other kid, all her weaknesses were amplified. She looked extra small, weak and vulnerable.

A simple thing, like how a life jacket fits, showed how her body is shaped differently, how Lauren is so small compared to the only other child in the class who is almost a year younger and how, even though it was the smallest life jacket, she didn't have the muscle strength or body balance to stay face forward in the water to swim. Kuddos to the life jacket people - the jacket did its job and flipped her on her back every time. It's hard to learn to swim in one when you never get to use your arms and legs to go forward.

At one point in the lesson, the instructor wanted Lauren to hold on to the edge of the pool so the other child could try a given task. Lauren only had one hand on the edge when the teacher let go. The following moments were tough for both Lauren and I. The life jacket was trying to do its job and flip her over and in doing so turning Lauren's back to the edge. She meanwhile was trying reach around to grab the edge with her second hand while her first hand was barely strong enough to keep a grasp. It all worked out - I think an errant wave may have helped - but the look of panic mixed with determination had me out of my seat at least once.

Later in the lesson, while the other child was up and out of the pool in an instant without any assistance, Lauren needed help to first get a leg up over the edge followed by a full body boost. This is our girl who loves to climb pretty much anything but the combination of buoyancy and life jacket puffiness meant she was stuck.

It seemed like every task for the day was designed to specifically highlight all the effects Noonan Syndrome has on our little girl. Even the warm pool was a challenge. The therapy pool is shallow. Most kids over the age of ... oh... 2? can touch the bottom. But not Lauren. Thankfully there's only the two students so the instructor can actually hold onto Lauren so she can participate.

But it shoudn't be so hard.

Our life in pictures

2011-10-23T08:35:00.000-04:00

October, so far, as seen through the camera:

Thanksgiving at Oma and Opa's included a trip to friends' farm with Tante Moosie

Nose to nose

Our little tom-boy in action. No gate, no matter how thin the wire, nor how pretty
the black patent shoes, will stop Lauren from getting a closer look.

Roman at choir rehearsal for our church children`s Christmas musical


Roman's maison hantée. Inside each window is a drawing of the things listed: A cat, a mummy, the moon and a dog.

See the number on that cheque? Just in case, it's $87,780.00!
This was our second KidsAbility Ambassador job - to be on hand
for photos and a big thank you to Tim Horton's for their Smile Cookie Campaign.

School news (aka: oh crap..)

2011-10-18T20:02:00.001-04:00

The first news is wonderful! According to his teacher during his parent-teacher meeting today, Roman is doing amazing at school. She has no concerns about him academically whatsoever. He does however need some encouragement to make good choices about behaviour. Specifically, not being a goof just because other kids are being goofy, not freaking out (or should I say, "screaming loudly because he's so instantly mad") because someone doesn't play fair, and being more brave about reading aloud or answering questions in class. The teacher knows he knows the answers but he doesn't put up his hand because he doesn't like to take a chance on being wrong. His dad can relate.

But otherwise, he's a "joy to have in the class".

Kinda saw all that coming.

As I have to walk past the office on the way out, I popped in to say hello to the principal. She's new to the school this year and I have this compulsion to know exactly who is responsible for my child. I also need to get the lay of the land for Lauren for next year.

The school currently has nearly 500 K-6 students. Insane. 500. Blows my mind really. As a kid we had one school, Kindergarten through grade 8 and there would've been 300, give or take a few students.

But I digress.

First thing I did was thank her for her work. She passed credit to Roman's teacher, where of course it is due, but I insisted it's also hers - which it is in my books. Her ship, her responsibility, and therefore thanks also are due.

We talked very briefly about Lauren's application for JK coming up in February and my confession that I'm anxious about making sure her physical requirements are meet but without anyone attaching labels based on her diagnosis of Noonan Syndrome. The principal was very supportive and reassuring that physical accommodations really aren't a big deal anymore due to their frequency and that everything will be taken care of. It sounds a bit flippant when I write it down but it really was reassuring. I think we'll get on just fine the principal and I.

Here, however, is where the news goes from "oh good" to "oh crap" Our province is moving to all day everyday Kindergarten. Our school is older, and smaller and, well, filled to the brim with those 500 kids. Within those 500 are 10 Kindergarten classes. That's 5 each day on alternating schedules (M/W and T/T, plus random Friday's for each). When the school is pushed to comply with the government requirements to provide all day everyday classes, it means 10 Kindergartens every day.

Honestly thought the logistics of it aren't really a concern for me. It happens or it doesn't. The whole school building will be full of kids that barely come up to my thigh but as I'm not a teacher, that's not really what has me on edge.

What is on my radar is the timing. We expected it would be as late as possible given those same logistics I'm trying not to be concerned about. The government had mandated the changes be in place for 2015, well after Lauren has finished both Junior and Senior Kindergarten. Turns out the board is pushing to have our school ready for 2013 - Lauren's SK year. She'll be 5 1/2 that year.

"So what?" People might ask everyone's kids will be in the same boat.

Oh how I wish that were true. Most people's boats don't include low muscle tone, hearing deficiencies and hyper extensible joints leading to fatigue and pain.

But then I get ahead of myself. Who knows by then? Lauren, according to our OT, is socially and intellectually ready for Kindergarten RIGHT NOW.... so no point worrying about 2 years from now right.

The interesting twist? I'll get my "year off" one year sooner than I expected! Hello Nap Time!

Dinner with the kids

2011-10-16T08:33:00.001-04:00

Some days Roman has an amazing appetite. Others? not so much. Some days he does but doesn't want what we're having so declares he's full after a single bite. Funny after Grandma said he had an amazing appetite. Seems he ate plenty at their house. Must be a control thing.

But so be it.

Yesterday afternoon I suggested we could make our own pasta. This was met with enthusiasm from both kids. They love anything to do with the mixer and making a mess with flour.

I made a fabulous cream sauce with italian sausage, sun dried tomatoes and roasted red peppers. It's to die for. Seriously. Last meal before execution good and really easy. I showed the kids the sauce.

They helped get the dough into shape then helped pull the linguine noodles apart, fighting over who was going to do the next set of noodles.

Everyone was "in it" and up to their elbows in flour. After all, they say that if your kid helps prepare the meal they're more likely to eat it.

Roman watches the noodles go in the pot. They KNOW we're having noodles and sauce.

We sit at the table when it's all ready and "This isn't what I wanted. I wanted round noodles (spagettini) and red sauce!" complete with scrunched up face and whiny voice. ARRRGH!! He ate one piece of sausage and that was it.

Lauren meanwhile is digging in - other than the red peppers - and enjoying it. It's a bit of an experiment for her. We found lactose free whipping cream (Natrel makes it) at Walmart of all places and decided to give it a go. If we go the next four nights without gas problems we know we can add it to our regular grocery list and open up a whole new world of yummy dishes.

But to the "them" who said kids helping makes them eat it? Come meet my kid.

So many rants, so little time

2011-10-13T08:34:00.002-04:00

Today's rant is sponsored by ignorant drivers everywhere.

Remember the days of leisurely drives? Of actually seeing where you're going and just enjoying the moments getting there?

Now it's rush rush rush.

I'm not saying I'm the perfect driver. There are many days I get frustrated behind someone doing 10km under the limit (which seems to happen every time I'm late for something. Come on old guy. At least do the limit for me?) But when it comes to tractors and farm vehicles, I'm happy to wait.

Speeding by them and taking chances with their, my and someone else's safety isn't worth the 2 minutes I might save. They're likely driving as fast as their vehicle can handle and chances are the next light will be red and I'll be waiting while they drive up behind me.

I mean really. When drivers get mad at farmers - and it comes up a lot during harvest season - it really pisses me off. Seriously people. Farmers put food on OUR tables. It doesn't miraculously appear at the grocery store. It grows. Someone - FARMERS - grow it for us. If the crop in the field isn't something we eat directly, chances are it's something that something we DO eat eats.

Cows, pigs, chickens, two legs, four legs, doesn't matter. They - WE - all eat something that was grown by a farmer. Even alfalfa (hay to the layman) grows in a field. It has to be mowed, dried and baled before it can be fed to the cow-I-mean-beef you're going to eat next spring.

So how about next time you (and you know who you are) feel the urge to blast by a farmer, flipping your middle digit on the way because you might be 30 seconds later to StarBucks than you planned, try slowing down and saying a quiet thank you.

Night Time Routine

2011-10-07T19:55:00.000-04:00

When Hubby works late (or is stuck in traffic...) and misses Lauren's bedtime, she asks Roman to help tuck her in. She's asked other days too but we've made it a special thing. If Papa's not home, Roman can help tuck.

First he hangs out and plays from outside the tub while she has her bath (this is his choice... which is now officially nixed because far too much water came OUT of the tub and too many toys went in that made Lauren mad...). After I help her get her pjs on, get her into bed and floss her teeth, Roman comes to snuggle in and read her a story.

I love that my 5 year old can read to his little sister. How cool is that? Tonight it was "Hey Wake Up!" by Sandra Boynton. It's no wonder my 5 year old can read it but still - Lauren picked it and he read it. Never mind the subject matter is ill timed. Next we turn out the light, say our nighttime prayer and sing a song.

Normally I do all these things but tonight Lauren even requested that Roman lie down in my spot. Her song selection was "Roman sing ABC's in French??" He tried to pass it off to me but after the letters, I'm out. When the song was done, Lauren gave him a huge snuggle. Roman then, without really thinking, spoke our nighttime rituals "Have a good sleep... See you in the morning... Night night I love you". He took her hand and planted a kiss on her palm. It's something we do with him and each other but I've never seen Roman do it for someone else. Lauren gave a little giggle and he quickly explained that it was so she could have a kiss from him whenever she wanted or needed it. "Like when you're at school" he said. "You always have it and can put in on your face."

Usually I leave Lauren's room at this point but Roman wanted to stay an extra few minutes. He lay on the bed beside her and waited. To me, sitting on the end of the bed watching them, it looked like he grew up in that instant. Suddenly I had a glimpse of my not so little boy all grown up.

Random Snippets and the Rogers Taping

2011-10-05T20:30:00.000-04:00

Lauren with her fairy wings can make even the most stern gentleman smile

KidsAbility named Lauren their ambassador for our region. As part of this role, we attended a meeting this morning with the fundraising and awareness committee. Lauren decided she wanted her fairy wings today and waltzed proudly into the room with them flitting on her back. I found out later that the one gentleman in the room rarely smiles but did upon seeing Lauren in her glittery finery. Hooray for Lauren!

Knowledge of food issues comes out in interesting ways

On Wednesday mornings Lauren has a one hour story time session at the local library. This morning I overheard the conversations between the library staff member and the kids - three boys and Lauren. The librarian asked the boys, "what would you do if you got home and found your house was made of candy?" which garnered the answer of "Eat it all!" or "I'd eat it a bit at a time" and then to my girl, "Lauren, what about you? if you got home and your house was made of candy, would you eat it all?" and Lauren, fully aware of her food issues replied, "I can't have candy. I'd give it to Roman."

Lauren loves her OT and KidsAbility

A local Rogers Community Television volunteer has created a tv series about the medical services in our region. The first episode is about KidsAbility and so included us - Lauren and I - as a local family benefiting from KA services. Our portion includes me introducing Lauren, a bit out Noonan Syndrome, how we arrived at KidsAbility and what it means to us to have services in our community. Next they filmed Lauren with our fabulous OT while the OT explained the things she was doing, the short term why (what the task does for Lauren) and the larger scale why of what it does for her in the real world. ie: playing with Thera-putty builds up her finger strength - so she can hold a pencil longer to do work at school.

The whole process was pretty quick, painless and everyone seemed happy with the takes. The portion we filmed is only 6 1/2 minutes long in the end so we'll have to see how much actually makes it to air.

I'm nervous now as it's our first real tangible step putting Lauren and NS into our local community but we believe in Lauren, we believe in KidsAbility and if we're going to make a difference in the world, we need to start somewhere.

The show starts airing in January and will run in cycle with 10 others for the entire year. Not sure how much people watch community television but I'm getting geared up to have people recognize Lauren and me to scramble figuring out how I should know them... could be fun!

Statistically Insignificant

2011-10-02T16:48:00.003-04:00

Lauren had a dental check up and cleaning on Friday. She's really amazing but then I say that all the time.

She sat very still and, other than having trouble keeping her mouth wide open all the time, did a great job letting the technician poke and scrape and clean. Lauren was even relaxed - her hands weren't clenched and Mittens the Kitten rested on her tummy undisturbed.

That's the good news. The bad news is that she has more cavities already. We had some filled in May (?) and a re-check in early August. The two molars with small fillings need more fillings in different grooves. They also found a space on a lower molar that has a defect in the enamel, as if there's a patch that doesn't actually have any protective enamel on it. Further, the decay in her top front two incisors continues and there's nothing they can do about it.

Turns out fillings aren't an option for the front teeth because the filling agents don't bond well with child enamel and they fall out. The falling out didn't seem like a big deal to me. Just put new ones in. I'll pay for just so long as we can keep those teeth as long as possible. The "big deal" is each time they need to put a new filling in / on, they have to clean away part of the existing tooth and there's not that much of those teeth to start with.

So we're stuck.

And here's where things get frustrating - again - for me about how low population numbers influence medical advancements. There are advancements in dental care but only for adults. New bonding agents, new sealants, you name it, someone's made it. But there's nothing for kids because kids aren't expected to keep their front teeth past age 6 or so.

And then there are kids like mine.

With Noonan Syndrome, growth is slow, puberty is delayed and, I fully expect her teeth to hang in there longer too. Now I'll confess I haven't done the research yet about whether adult teeth take longer to emerge in the Noonan Syndrome population but I'm making that assumption in the hopes we can do something to protect Lauren's teeth. Imagine 6 years of photos with no front teeth.

Intrinsically I understand why pharmaceutical, dental, medical corporations don't invest in children or rare diseases. Why put money into something that serves such a small population? It couldn't possibly be profitable.

I understand it. I didn't say I like it.

Take growth hormone therapy for instance. In Canada, human growth hormone is not approved for use to increase growth in kids with Noonan Syndrome because the research hasn't been done to prove it's efficacy. Never mind it's approved in the US. This is one of my pet peeves on that topic. And here it carries into another facet of our lives. Kids aren't supposed to keep their kid teeth and the population of kids who DO keep them longer, well, they just don't matter because they aren't going to generate enough revenue to make it worth while for the corporate "us" to bother. Apparently the quality of life for kids with damaged DNA isn't worth enhancing.

So while people keep trying to make themselves different or significant in someway, sometimes being unique isn't all it's cracked up to be.

The brag page

2011-09-28T20:14:00.001-04:00

Here we go... I have the best grade one boy EVER.

Today was the Terry Fox Run (walk) at school. Lauren and I volunteered to be a parent helper for the walk. The weather was promising and Lauren was willing to try being the sling rather than a wagon or stroller.

Here's the part where I talk about my kid being the best ever...

The teacher paired up the students to walk together for the duration. Roman was paired up with a nice red haired girl and he promptly took her hand while waiting to walk. He kept this hold on her for pretty much the entire walk.

While the rest of the boys (and some of the girls) were whining "Madame! so-and-so wants to be my partner" or "Madame...I don't have a partner! They went over to so-and-so" or dawdling behind or wandering over people's lawns or whatever they could get away with, Roman talked and laughed with his partner, kept holding hands and tried to keep her moving (she was a bit of a dawdler...). He also didn't get distracted by Lauren and I being there though he was happy to see us.

When the walk was done and the moms were to go home, he gave Lauren a snuggle and said, "see you when I get home off the bus!" and off he went with his class. Meanwhile I felt for the other parents whose kids were ... let's say, "less content"... with being left behind.

He's coming home happy, learning his dicté, practicing piano, eating food, not excessively melting down and actually doing okay playing with Lauren. Weekends are tough but it'll get there.

For now, I am a proud Mama. He's pretty amazing!

So far, no trips to the supply store... wonder how the neighbours would
feel about a runway in the back yard?

My Fairy Princess

2011-09-24T17:28:00.002-04:00

I've never been much of a girly-girl. I love shoes but love to wear amazing shoes with blue jeans. Those who know me are questioning why I state the obvious.

Lauren gets some of this anti-lacey-frilly attitude from me, a lot of boyish behaviour from her brother but then balances this with a lot of pink and purple in her wardrobe (which she chooses for herself each day).

The newest addition to her wardrobe include fairy wings

and a knights helmet Roman designed. You need a helmet when riding your horse into fairy battles. Make way Frodo and Aragorn. Lauren the fairy princess has arrived!

No Sympathy Here...

2011-09-23T16:29:00.001-04:00

I was going to add an AKA of "Mama the Hard-a$$" but didn't want all the filters to send this into the spam-iverse.

This morning I received "The Call". The "Your child just threw up all over the XX. Please come pick them up." call.

Which I did. He looked a little teary and pale but otherwise fine.

He's thrown up for no reason before and I fully expect he'll do it again however, to be sure and appease the school, we gather his things and head home. The whole time, I'm laying down the law as taught to me by my mother. (I know. What woman wants to admit she's like her mom? In this one, I'm very happy to claim her guidance!)

'If you're too sick to go to school, you're too sick to play. Go to bed."

And after some tylenol he did. When I went to check on him later, he said he was hungry. Sounds logical given he'd thrown up his breakfast. Down go two pieces of toast with honey.

Again Mama reiterates "if you're too sick for school, you need to go back to bed." He did. He was reading, playing under the covers etc. I asked if he was ready to go back to school and received the reply that he just wanted some "Roman-only time" and that he was happy to spend time alone in his bed.

Lauren and I move on to lunch consisting of pepperoni and [non-dairy] cheese on [whole wheat] ritz crackers and are soon joined by Roman asking "How many more minutes until school is done?" and "When your reminder on your cell phone says it's time to pick me up at the bus, can I come out and play?" then "Oh! I'm hungry. I want some of what Lauren is having..."

Yeah. You're just fine. Half way through his snack sandwiches I announce, "when you're done, you're going back to school". No protests, no arguments just a happy smile.

When we arrive at the school, the kids are outside for second break. He very happily heads off to play, joyful at being back at school.

To be clear, I wasn't "played". After he threw up, Roman was fine until they asked if they needed to call his mom at which point he burst into tears. The teacher he was with at the time is not a mom. When I met up with his homeroom teacher, she completely understood why Roman was back and that sometimes he just throws up. It's quite possible she'd have handled it differently and Roman wouldn't have come home for an hour and a half.

It's all good. Roman now knows - and just might remember - that being home "sick" isn't much fun if you're not actually sick.

About Vitamins and Growing

2011-09-22T21:43:00.000-04:00

Given our childrens' sometimes erratic eating habits, I opted for some chewable vitamins. I also opted to refer to them as after dinner candies.

Roman remembered them from a couple years ago so he was a pushover. Lauren on the other hand has not taken to them quite so easily. The first one was fine until she actually tasted it.

That was Tuesday.

Yesterday she dipped it in maple syrup left from her pancakes (yes. Pancakes for dinner. Try it. You may never have them for breaky again!).

Today took a lot more convincing and dipping it (lactose free) sour cream.The best part? Our final conversation on the matter:

Me: "Would I give you something that hurts your tummy?"
Lauren: "No."

Me: "Would I give you something to make you sick?"
Lauren (a bit skeptical): "Noo oo."

Me: "That's what these are for. To keep you from getting sick. They'll help you grow!"
Lauren, as she leaned back and gave me that "I'm older than you think Mama" look:

"I'll grow just fine with out them thank you."

Being an advocate can start younger than parenthood

2011-09-20T08:35:00.001-04:00

My friend over at Life with Critters linked to a blog for parents with special needs children. Within that entry was this video:

May we all advocate as well for our kids and all the people who can't speak for themselves.

The Boss

2011-09-15T10:05:00.002-04:00

In times of transition - aka turmoil - my kids revert to power plays. They try to be the boss in an attempt to control whatever tiny bit of their lives they can. Often this is in direct conflict to what I want, usually NEED, to have happen.

This morning it was getting to the bus.

School day routine has been the same for the past two years. Granted it wasn't every day but the process is consistent. Bathroom, socks, shoes, yell good-bye then out the door with whichever parent is taking you out. We try to alternate days so each parent gets a smidge of Roman time and so it's not "weird" to have the other parent there when necessary.

Today, each step came with stalling. Not sure there's anything that frustrates me more.

First it was running Lauren's sticker sheet to his room to hide in the closet. Next it was throw himself on the floor in the hallway just because. This was followed by crying and fussing because his nose hurts from his cold so he can't do anything - like putting on socks or shoes. "It hurts so much I can't move." To which I replied, "your broken leg hurt a lot more than your nose and you still moved then. Get your shoes on." Not much sympathy coming from Mom at that moment. One stall and whine too many for sympathy to kick in.

Seriously. You'd think after 5+ years of me drilling into him how much I hate being late, how it's disrespectful and that I expect my kids to do whatever they can to be on time that he might remember.

It seems we've entered the age when he can recall the multi-syllable latin based names of a gazillion dinosaurs and what they eat but not that it makes Mama really pissed when you stall and dawdle getting out the door.

And it's not like we don't give ample warning or build lots of time into the departure routine. The more time there is, the more time it takes.

We'll see if it's improves tomorrow. Our conversation to the bus when something like this...

"You want to be the boss this morning." (note statement not question)
"Yeah."
"You know Mama's the boss right?"
"Yeah."
"You know it's rude to be late."
"Yeah"
"and you know it makes Mama mad when you dawdle just to be the boss"
"Yeah Mama."
... pause ...
"Hey Roman, if you get out the door faster in the morning you get more Mama-Roman time..."

"Oh... Yeah. Right."
"so you'll try harder to not stall and dawdle?"
Roman nods.

So we'll see. We won't get to enforce the Mama-Roman time idea tomorrow as Papa has a session and Lauren will have to go out with us but there's a whole year ahead of us...

Back to school - Part Two

2011-09-13T20:21:00.002-04:00

Lauren started her second year of pre-school today. Last night she declared quite somberly "I don't want to go Mama. [pause] Well... just not ALL the time." Today though she was all set.

All set with snack bag, Ca and super cute crocs

The pre-school staff gave us the option to supply snacks only when the scheduled food wouldn't fit within Lauren's restrictions. This morning Lauren wanted me to pack her snack anyways and to do it every time.

I'm okay with that. As much as I would like her to be able to share what everyone else is having, packing something for her means I know exactly what she's having. Sometimes what is okay in one brand is not in another - like graham crackers for instance. Honey Maid - all good, even though they have honey. Honey is actually VERY far down the list. No Name brand however has glucose-fructose and it's the second or third ingredient.

Really I think she just likes having her princess lunch bag.

On a somewhat related front, if my daughter was a dinosaur, she'd be a T-Rex. Short little arms, big head and a carnivore through and through.

Yes. That's a hot dog. And yes. It's wrapped... in mortadella.

Sleep Study Results - sort of

2011-09-09T07:00:00.000-04:00

Wednesday's Toronto trip was... informative but useless.

We arrived on time after a harrowing trip on the 401. Seemed everyone was in love with my back bumper - they kept wanting to get close enough to kiss it. Thankfully I'm not that kind of girl.

Our appointment started a bit late but nothing unusual compared to many but it turns out there are sleep "emergencies". Must be. After receiving a phone call before our appointment started, the first thing the doctor said was "I'm going to read these results to you but quickly as I have to get to such in such which I'm sorry since you've come such a distance..." At least he apologized.

He read through the numbers: Lauren slept 11+ hours with 19 minutes of wakefulness making for a 93% sleep which he says is good. Her sleep patterns are normal - also good but it took longer than normal to get to deep/REM sleep. She had 9 episodes of neurologically based lapses in breathing and 10 obstructive episodes. She also woke up from deep sleep screaming and crying suggesting night terrors. On average, over the night, she stirred (or woke, I'm not sure) every 5 minutes. I'm sure there's more. I'm exhausted just thinking about it.

Next step is to see an ENT to have her adenoids assessed. When we saw our ENT a week or so ago he said her tonsils are fine and that adenoid size is generally similar to tonsil size. He didn't bother to lcheck them. When I relayed this response to our sleep doctor, he clarified that he's not an ENT and said, from what he's learned from other ENTs, sometimes one is fine and the other is huge and vice versa.

After learning ours didn't believe Lauren had anything (and only referred us because I insisted) and that his expectation is that there's nothing he can do without even checking, I'm now on the hunt for a new ENT. I've emailed our developmental pediatrician for help but am still waiting for aresponse. I'm hoping to find a pediatric ENT who's also familiar with Noonan Syndrome as I expect they're related and, if possible, someone with surgical privileges at Sick Kids since that's where we find the anesthesiologist I trust.

When we finally have Lauren's adenoid size assessed, we'll know if she needs surgery. If they're enlarged, out they come. After the surgery we return for a repeat sleep study to see if there's a decrease in the obstructive episodes. If they're NOT enlarged, we return to the sleep clinic for other treatment options. Either way, we're going back to Toronto in the coming months and not for fun and frolic.

Regardless of the above outcome, we also have to repeat the sleep study in two years to see how thing have changed.

My frustration with the trip was not so much the time (a lot of driving) and cost (of downtown parking maxed just in case but not used) but rather I didn't have the time to absorb the information and ask intelligent questions. For example, are the obstructive episodes clustered or evenly spaced? If she's stirring so often, how can she have normal sleep patterns? and, WHAT DOES THIS ALL MEAN???

Fine to have the numbers but with no interpretation or time to discuss them, they're just numbers. Even Lauren knows her numbers...

Where's the village when you really need it?

2011-09-08T20:05:00.000-04:00

People talk about how it takes a village to raise a child. Perhaps. Perhaps not. Lifestyles have changed and villages have been taken over by babysitters, day care centers and after school programmes. Families are scattered across the province or even countries and friends with flexible schedules are hard to find.

Yesterday Lauren and I had an appointment downtown Toronto to get the results of her sleep study. When we booked the appointment, and even up until 8pm or so on Tuesday, Hubby would be working from home that day. It meant there would be someone available when Roman got off the bus from school. When Hubby finally got home from Toronto Tuesday night, he was scheduled to return to Toronto on Wednesday too.

Great. Two cars in Toronto and no one guaranteed to be home when the bus returned Roman at 4pm.

Lauren's appointment was scheduled for 10:30. Even if the doctor ran late and we didn't start until 11:30 and spoke for a full hour, our estimated departure would still be a reasonable 12:30ish pm. But this doesn't account for traffic, accidents (mine or someone else's) or who-knows-what-else-could-happen to then have a 5 1/2 year old boy, dropped off at home to find no one there.

Literally no one. Everyone we could think off was away - grandparents, aunt and uncle, even the neighbours happened to be away for three days. Friends were either working or had to be home to meet their own kids off the bus. Compounding the problem was having a new bus driver that let Roman off the bus on Monday without an adult to meet him. It's an issue because a) we have a by-law that requires a child to be met at the bus until they are 6 and b) there was no indication that anyone was home at all. The bus was completely out of sight by the time I got out the door to meet him. My little guy, because really, 5 1/2 is still LITTLE, could've come home to an empty locked house and no one to go to. Not even the neighbours. Let's not contemplate the therapy bills for that one.

(For the record, I'm not upset with the bus driver. Roman is in Grade One and most Grade One's are 6, plus he's very tall and seems older than he is. Since it was the very first time on the route, how could the driver know Roman was to be met? As well, Roman was the first off instead of last as he has been the last two years. I wasn't there waiting because I didn't expect him for another 20 minutes...)

But back to Tuesday night. Hubby and I went through the list - this person? nope. That person? Nope. Try so-and-so. Make the phone call - Nope they're out of town tomorrow and don't know when they'll be home. What about them? No answer there. Must be away. I even scrolled through our telephone phone book to see who's listed in case I missed anyone. It's full of doctor's office numbers and family who are away or too far away.

Finally - thankfully - I realize that I have one new friend who is amazing. Her daughter takes the bus but if she picked her up at school she could be here to meet Roman's bus. She was an angel. She didn't mock my obsessive behaviour. Didn't tease me about being so concerned about the what-if's that I'm calling people at 10 o'clock at night. Was perfectly willing to pick up her daughter, the daughter's friend they care for after school and come out of town. Best of all, she didn't think it odd that I wanted - needed - it to be a, "Be here unless I call you that I'm home" type arrangement.

My village might only have one other mom in it, but I'm really glad it's Gen.

Grade One starts today...

2011-09-06T15:44:00.000-04:00

All summer I've been anticipating the return to school. While I do enjoy spending time with my kids, I also enjoy spending time AWAY from my kids. Roman too enjoys spending time away. I'm fairly certain we were all getting sick of each others' company.

Then it came to the night before. The kids were all tucked, the tv was off and we were headed to bed when it struck me. My little guy is off to school Every day. And it won't be done until he's all grown up. Yes we'll have summers and Christmas holidays etc but no more months on end of days together to play.

Waiting for the bus and having a laugh with Papa

It's good for him to be at school. I am not a home school type mom - I don't have the patience or the interest - but I miss him today.

Tomatoes as far as the eye can seeAKA: Enough tomatoes already!

2011-09-05T09:50:00.002-04:00

The bushel is finally done. 38 pint jars done and 8 half pint jars of chili sauce are processing right now.

One dinner suggestion over this weekend was fresh pasta with heated oil, fresh tomatoes concasse and fresh herbs. Yeah. Not going to happen. To hubby, "while I love Klaus' fresh pasta-tomato recipe, I do not want to be anywhere near tomatoes OR boiling water for a very long time!"

Meanwhile, the garden is doing well enough. The few tomato plants we have are slowly ripening. Until they're actually harvested, I can't count on them for eating. We've been hit by late blight every season. Thankfully tomatilloes are resistant to pretty much everything. The tomatillo harvest has started and will carry on until the first heavy frost.

The onions are in and the potatoes. In both cases, one variety did very well (red onions and yukon golds) while the other were dismal (yellow onions and russets). The corn, for the second season, has not done well. It's very short, the cobs were very tiny and the tops of the cobs opened before the kernels actually ripened. Roman and I have decided we'll use that garden space for something else next year (more yukon golds perhaps) and buy our corn at the local market instead. Mosborough always has incredible corn!

As I was taking all our canning food waste to the compost, I dreamt ahead to next year when the chickens will be having an absolute feast - tomatoes, herbs, grass, corn cobs, watermelon... poultry heaven I expect!

The last few crazy days of summer

2011-09-02T17:26:00.000-04:00

We've had a 70th birthday party, complete with a second adventure in fondant. Note to self: using fondant the same afternoon you make it totally rocks! and, don't pipe candy wafer shapes and expect them to hold up. They all crumbled to bits. Thankfully there was enough fondant left to colour and make this:


This was decorating attempt number 3. The bird was the only image (in a different form) that made it to the final presentation.

We also had a trip to Oma and Opa's which included hikes to the neighbourhood play parks. Thankfully the neighbours had a wagon we could borrow. Lauren's generally good for the walk there and I have an extra 30 pounds for the walk back. I thought walking was supposed to help shed weight, not gain it!

Loving the view from up here.

Yesterday we went with a friend to St. Jacobs Farmers Market. Having learned from last year, I took our wagon. Lauren was soon displaced by peaches, peppers, more peppers, berries and a bushel of tomatoes. Note to self: Next time, HALF a bushel is sufficient. I'm up to 21 pint jars so far and only half way through. They're beautiful very ripe plum tomatoes though so - oops. odd rattling noises... make that 20 jars as I pick out a broken jar - so I'll work my way through. I know we'll appreciate them later.

Roman towed the wagon for as long as he could. By the end
the contents weighed more than he and Lauren put together.

Today Roman and I met his Grade One teacher, saw an old friend and met the new principal. I was very happy with all three. The teacher is very sweet and seems to really enjoy her job. She gave Roman a tour of the room and asked him questions about his summer and his sister (who had tagged along of course...) With the principal, I introduced myself and mentioned that part of why I wanted to meet her is because Lauren will be registering for Kindergarten in February, that she has a genetic condition (I didn't mention Noonan Syndrome. No need to yet...) and that I'll of course need to do all the associated paperwork. I did clarify that the issues we'd be dealing with were primarily physical. I could see the principal's wheels turning and a bit of a change in her countenance. I'm hoping it's not an "oh no. Here comes that kind of mother...."

Tomorrow we have two families coming to visit. We're very happy to see them. Both have children Lauren's age, also with Noonan Syndrome. One family has an older boy Roman's age plus number 3 on the way and the other is expecting baby number 2. It's exciting and reassuring to watch their children and families grow and know that as Lauren gets older, she'll have friends she's known, basically her whole life, who are going through what she does and will.

I can't think of a better way to end the summer.

Chickens in Florida

2011-08-19T08:36:00.000-04:00

Yesterday was beautiful in so many ways. The breeze made the temperature perfect and Roman spent the morning at soccer camp. After a quick lunch, we dropped Lauren at Grandma and Grandpa's. The return to school is just over two weeks away and Roman was in need of new pants and shoes.

Boys just luuuuuuve to try on new clothes. At least he managed to pick some and enjoyed his ice cream reward. It was a treat for all of us and has put this Mama into a much better mood.

Meanwhile, over the last couple months, I've been researching and planning for our future flock of chickens. Being the [mildly?] obsessive person I am, there's a LOT of planning being done complete with plenty different breed photos and discussions of why one is better for us than the other. The current front runner is the Chantecler breed which is distinctly Canadian, handles the cold well, lays eggs all winter and, due to their physiology (the roosters have very small combs) are less subject to frostbite.

Partridge Chantecler Rooster

Somehow, over our taco dinner last night, the topic of Florida came up. Perhaps it was from a parental conversation about weather. Regardless, Roman asked if it was really cold in Florida. We clarified that while it does get cold, it doesn't snow like it does here.

"We should live there" Roman says.

Having Grandparent Snow Birds, I naturally replied, "You mean so we can be near Grandma and Grandpa when they're there?"

He agreed that that would be nice but then stated "So you can get chickens with the red thing on their head!"

Funny how he doesn't hear things like "put your toys in your room" or "stop being mean to your sister" but hears and remembers that the roosters I really love all have big combs. AND can put together that Florida = warm and warm = good for big combed roosters.

Maybe we should move to Florida though I`m not sure if Grandma and Grandpa`s park would support a whole flock...

Anxiety Part Deux

2011-08-18T08:27:00.001-04:00

I thought it would go way - the sinking in the pit of my stomach, tight shoulder muscles and sense of impending doom. There's no reason for it to stay. Surely there are other people that Anxiety could be stalking instead of me.

Having my companion last week leading up to Lauren's sleep study was understandable. Now Anxiety has overstayed its welcome. It's like I've had a relative arrive from far away and they've decided they like my home enough to stay longer. The fridge is empty and the bathrooms are a mess and yet they stay.

Anxiety even stepped it up and is now hosting a party. The little turd invited Anticipation, Subconscious Worry, Obsession and the ever present but quiet Sadness to the party. Who knew they'd all be free the same week? I'm fairly certain Lack of Sleep started frosh week and tracked Anxiety down in the parking lot. Anxiety was waiting for someone else but once the word got out, well, you know how the story goes...pictures fall from the walls, tables get broken and the liquor cabinet is empty.

I'm sure they'll get bored eventually. I could always up the rent, disconnect the satellite feed, hide the car keys and buy only whole-grain-organic-no-fat-no-flavour-cardboard-meatless foods.

Or maybe down-grading the Internet connection to dial-up will be sufficient?

Girls Night Out (aka: Sleep Study)

2011-08-14T20:10:00.003-04:00

After last week's exciting trip to Toronto for a sleep study consult, Lauren and I headed back yesterday for the actual testing. Knowing she wouldn't go to sleep on time if she napped in the car, we left home early in the day to spend time with our friends in North York. Their daughter also has Noonan Syndrome and we treasure their friendship. After a quick lunch, we headed downtown to the Eaton Centre. The promise of shopping for new dresses was enough to keep Lauren awake for the 20 minute ride.

Watching the fountain on the level below.

The Eaton Centre is definitely NOT geared towards clothing children. We perused the entire mall, found two of pretty much every store and finally found only one dress we liked at a store we have here.

Next was dinner at a restaurant - one of our kids favourite things to do. We picked Fran's on Shuter Street thinking they'd be able to accommodate Lauren's food sensitivities. They did but made it seem quite the inconvenience. For the price and lack of dietary effort, we opted not to go back for breakfast even though they were the only place open.

Mama and Lauren at dinner

With Lauren's early to bed schedule we arranged with the clinic to meet at 5pm. The intention was to give Lauren time to acclimatize before being plastered in "stickies". We were greeted by a very sweet undergrad and settled in to wait for the actual technician. She arrived just past 5:30 and was not so sweet. She was capable but not particularly endearing. I found out just how much I didn't know about what was required for the sleep study. I knew there would be wires and stickers but assumed - wrongly - that they would all be like the cardiologist uses where alligator clips attach to peel and stick sensors.

Turns out they're copper tipped leads that get a dollop of goo and are taped on. All week Lauren and I had prepped - that there would be stickies and they'd be all over her face and chest and legs "But not my hair!" Lauren would joke. "No honey. Not your hair" but Yes honey, they ARE in your hair. And the tech used a skewer to separate Lauren's hair, often scratching her scalp in the process. Each time Lauren cried I would say, "ow! That scratches doesn't it" which would calm Lauren but the tech would say, in her ESL Eastern European or North African accent, "No it doesn't. We don't hurt children here" (yeah. bullshit lady. try another one...)

By this time it's 6:30 and officially past Lauren's bed time. Techie is getting frustrated with Lauren's crying and I'm getting annoyed at how long the whole process is taking. If Techie hadn't dawdled getting all her gear we'd have been 10 minutes further along. If the lead doctor had fully explained to me how many leads and where they'd go, I could have better prepped Lauren. But I digress.

The final straw for Lauren was when Techie pulled out a hose with bits for her nose then tried to put it on her without warning and proceeded to follow it up with a butterfly like contraption.

Leads and tape. There's more tape than face here

When we put Lauren into bed, she was without the nose sensors. When Techie came in, she brought a smaller set and made sure to show us they were smaller. Yes. Like that's going to make a difference to a three year old. I appreciate the step at least as I think it did make a difference.

Techie opted to leave us at this point and let Lauren settle in to sleep. I had bribed Lauren with two stories if she settled. She was asleep before I finished the first - completely overwhelmed and exhausted. It was 6:45pm and 20 minutes past her normal bedtime after a long busy day.


The (almost) full picture. There are leads off two belts around her chest, two on each leg and a heart rate monitor attached to her left big toe. Lauren`s entire left foot was encased in tape to keep the monitor in place.

I should have taken a count. By quick estimate, there are close to thirty wires and sensors all taped and glued to my little girl. What the hell was I thinking?

She woke the first hour and managed to remove the oxygen sensor which then had to be retaped to her face. You can only imagine how much tape Miss Techie used this time. I finally get her to settle again and the have to go ask Techie to turn the lights off. The lab manages the lights from the control room. When I asked her to turn them off it was like she'd never heard the request before. How dare my daughter not sleep with the lights on? Lauren fussed and fidgeted throughout the night but no more than most. We were co-sleeping for which I was grateful.

At 2:30 in the morning, I awake to find Techie coming in to adjust the belts around Lauren's chest. I can only guess that all Lauren's tossing and turning allowed them to slide down. Thankfully I was the only one she woke up. Then again, it took me over an hour to get back to sleep again.

There was a lot of praying going on on my part. I just wanted to get through the night, for Lauren to get through the night and for the test to have correct data - that Lauren wouldn't have some bizarre night where she didn't make the noises we always hear.

I was so thankful when she seemed to settle without too much assistance from me, that she made some of her usual strained noises but that she wasn't fully awake and screaming throughout the night. I was also VERY thankful she didn't need a potty break. Miss Techie wasn't the promptest help on the planet. Chances are Lauren would've had an accident before she'd have arrived to unattach us from the hard-lines.

This morning came and Lauren woke, her usual bright self at exactly 7am. I buzz Techie to come unplug us so Lauren can go to the bathroom and when she arrives, hands me a clipboard with sheets to complete and starts just ripping off leads and tape from Lauren's face. When Lauren howls, Techie is put out "oh. It doesn't hurt. You're okay" I comfort Lauren as best I can and try desperately to not shoot Techie the look of death.

Finally we get as much off as we can and leave a pile to soak off in the shower - another thing it would've been good to know - that the goo would need a shower to remove. I'd have packed a bigger towel. We managed but there was a lot of howling involved, not all of it Lauren's!

In the pile of paperwork was a page where Techie needed me to confirm our pediatrician's contact information. At the top of this page was a line for diagnosis. I'm not sure we were supposed to see it. I'm not certain it was a diagnosis or the list of things we were being tested for but it included "Insomnia, Sleep Apnea, RLS" and one more I've now forgotten in my quest to determine what RLS was (which I'm assuming is Restless Leg Syndrome").

We already have our follow up booked for September 7th and will have the full picture then. I also completed the client feedback form honestly - that we would have done better with more information and that our tech needed to remember our daughter was only 3 and to support her needs and her parent's words. I will reinforce this with the primary researcher when we have our followup. I don't want any other child to go through that again if I can have any influence.

The rest of today has been much better. We left downtown TO before 8 meaning even Starbucks wasn't open. Funny how small town Starbucks here is open at 5:30 AM but downtown TO can't manage til 8? Probably not wise to drive the 401 without coffee but I wasn't willing to wait around any longer. We arrived at our local Starbucks and settled in for "Breakfast in a restaurant Mama?" before meeting Roman and Papa at Sunday School. Even Starbucks was willing to make sure the food would work for Lauren's diet pulling out ingredient lists and finding juice. Might be overpriced but today it was worth it!

Lauren in her new dress (aka bribery) and banana loaf.

There's a whirlwind in my mind about what this could mean and was it worth it. Marginally. In the end, more information is better than less but at what cost?

You can thank me.

2011-08-09T07:56:00.000-04:00

Anyone living in the general vicinity can thank me for the rain. Yep. Me. And you're welcome. Truly.

For months we've needed to make a trip to the dump. It gets put off for weeks at a time but finally, the bags of used kitty litter were getting a bit excessive. I know. Yuck. When we were camping, we missed garbage day. It's every other week and we have to pay by the bag. We can only load up 40lbs per bag and.. well, four weeks of kitty litter adds up.

So that, along with purging broken toys and construction waste from the [still absent] deck makes for a trailer load. Roman even helped dismantle a toy work bench that had been mangled by the spring wind storms. Despite his disappointment at parting with a toy (that he only wanted to play with because somehow children know when parents are purging) he was thrilled to take all the plastic bolts out. We discussed recycling and how the broken toy would do better being made into something new.

Last night I asked Hubby to bring the trailer up and we'd load it making today dump day. The forecast has been sunny, dry, humid and low rain percentages for weeks. Why should today be any different? The dump is only open three days each week and with the rest of the things we'd like to accomplish this and next week, today was the day.

We load up, tie down, tuck kids into bed, Hubby works in the studio for an hour or so, settle in for a bit of tv and... cue rain.

All night.

And so far, all morning.

So.. farmers? You're welcome. Kids wanting puddles and mud? You're welcome too. Gardeners? No problem. Happy to help.

Murphy? Thanks. I'll get you for this.

Sprinklers and sleeps studies

2011-08-03T20:15:00.000-04:00

The heat just keeps coming but the kids have found their new favourite way to keep cool:

Love the wild abandon. Such joy from a simple thing.

Soaked through and thrilled.

No sprinklers today though. We left immediately after breakfast to make the trek to downtown Toronto (insert ominous music here). Even hitting "rush hour" it was an unusually quiet drive. In the words of Kevin, "Best drive ever." Of course "Best drive ever" meant we were REALLY early for our 11am appointment. We all went together because Kevin had a 10 o'clock session. We expected to drop him off then zip across town. Today? NO zipping required!

With so much time, I elected to park in my old familiar work neighbourhood and walk the 5 blocks to the sleep clinic. Someone was looking out for us as arriving early was helpful for once. There was plenty of paperwork to complete that hadn't arrived by mail. Thankfully the clinic has a playroom with toys and books to keep the kids entertained while I completed said paperwork. While it felt like a long wait overall, I'm pretty sure they really were on schedule.

As per usual, we met with an associate first.She asked the questions I expected about why we were there and what Lauren's sleep issues were and I did my best to describe the odd pinched strained breath sounds she makes along with her snorts and stirrings. I also explained how even a 13 hour sleep would still result in a 'train wreck of a day'.

I nearly jumped for joy when she was actually familiar with Noonan Syndrome and for once I didn't have to conduct an NS 101 class. We discussed how Lauren's particular case presents and how it impacts my hopes for the sleep study.

Next we saw the head of the lab who is a very sweet older gentleman - probably in his late 50s or so - who proceeded to tell me that the associate's assessment is that Lauren does indeed fit the criteria for sleep apnea and that, and I quote, "You were right and your ENT is out to lunch". The mention of our ENT surprised me. I replied, "He told you he doesn't think she has it?" to which I got a mumbled response but pretty much yep. I expect it's one of those paperwork codes "The parent has insisted on a referral for your services..." etc. Smart doc reads between the lines and poof! Mom is right, ENT is wrong.

That's twice my local doctors have told the specialists I've asked to see that I'm nuts. But that's another post.

In a nutshell, they feel her case is urgent and needs to be assessed as quickly as possible.Urgent is a strong word. Urgent turns out to actually BE urgent and gets things moving very fast.

We're going NEXT Saturday.

Now here is where we get to laugh at me a little bit. As the receptionist was telling me the available dates, I had flipped to September in the desktop calendar. Because seriously? who books something that soon in Ontario? I didn't even consciously think about it, just did it.

We both realized my error when I explained that perhaps the 10th would be better because it's a Saturday. Well, yes. In September, the 10th would be better but in August we might want to pick the 13th.

Yikes!

I don't know whether to be thrilled or devastated.

Thrilled because another piece of the puzzle might get solved.
Thrilled because yet again maternal instinct is vindicated.
Thrilled because it wasn't a wasted trip to Toronto...

or devastated because here we go opening yet another can of potentially nasty health care worms. I really don't want to add yet another issue to my daughter's long list of Noonan Syndrome related complications. I don't want to face the choice of surgery or not or CPAP or not.

But I do want her to sleep well and be strong.

We've already booked the follow up appointment. In just over one month we'll know the results.

In the meantime, we made the most of our afternoon and each picked what we wanted for lunch. Street vendor hotdog for Roman. Subway sandwich for Lauren, sushi for Mama and Papa. I was thrilled to find my favourite sushi place still in business and very busy. Indulgent but very fun for me and the kids.

While waiting for our order to be created, we waited in the park I spent most of my summer lunches in:

My joys, in Berczy Park

Port Burwell, Ontario Provincial Park

2011-07-24T19:41:00.000-04:00

What has become an annual trip to Port Burwell Provincial Park once again fills my memory banks with wonderful images

Roman the navigator. As soon as I pull out a map (or look on Google Maps) he`s all over it!

Enjoying the craft portion of "The Very Hungry Caterpillar" as told by the park staff

Sun, surf and

and sand

Peddling into the sunset...

Advice masked as gossip?

2011-07-19T15:37:00.000-04:00

Phew! It's been a crazy time and while I would much rather rave about a fabulous family vacation - and I will as soon as time is found - for now ranting is the priority.

And I had forgotten how much I really hate gossip(ing) until I was faced with it today.

In talking with a friend about something Roman related, Friend launched into a tale about so-and-so who'd done that and how it had turned out badly.

I listened politely and let the conversation change as someone else joined in.

I've always wondered why I wasn't connecting well with Friend. I see them often enough, they are very nice but somehow the click never became audible. I'm beginning to understand now. It has to do with Friend's choices of conversation and how, often, things I mention get a response about how so-and-so did the same and how it had ended up badly.

It always seems to turn out badly.

Which is how I came to the realization that perhaps Friend thinks they are helpful giving advice without actually giving advice. Passive-aggressive advice giving... does that exist?

In the end, the choices I make for my children are the choices I make for my children.The consequences of said choices are also MY consequences to be dealt with.

The good part of today is I've unmasked two things - PAAG and why I don't jump through hoops for Friend.

I've also reaffirmed for myself that my children are mine to screw up and I plan to do it MY way!

What I love about WalMart

2011-07-07T09:44:00.000-04:00

There are plenty of reasons not to like Walmart.

Being Canadian, trying to buy Canadian or at least shop at Canadian owned stores was something we practice as much as possible. Until a few years ago, this meant avoiding Walmart - or "StuffMart" as the kids call it" - like the plague.

Our closest comparable store's parent company was then bought out by a US company. Now price became the only deciding factor. Let's face it, Walmart prices on a lot of things really are lower than others.

But this isn't about prices - it's about the return policy.

And the fact that there don't seem to be any rules. "Bring it in, wait in line and we'll give you your money back. In cash. No matter how you paid us, we'll give you cash." I'm not certain I've ever actually been asked why I'm returning something and I have yet to give any personal information tying me to a return.

Yesterday we were picking up some printer labels to use for VBS and went to the toy section to find learning activity books for our camping trip. This meant walking past all the new Transformer toys. I am a very fortunate Mom. My kids very rarely ask for something when we're in a store, unless it's food. Roman actually asked if we could buy one. I believe his words were, "Wow! That's cool! Let's buy one!" I replied that he has his allowance that he's been saving for the Lego airport but the money is his so it's his decision. I suggested we go home, count his saved money then decide if we should go back to buy the "Bubblebee" car I had taken off the shelf.

Did you know that not all Transformer toys actually transform? Long story short, we get Bubblebee home and all it does is open some doors to show guns then make different sounds. For $30 of a kids saved money? I don't think so! I let Roman play with it for about 20 minutes while I frantically made dinner all the while trying to convince him that it many not have been the best purchase.

It really was my fault. I didn't look carefully at the package. I assumed that all Transformers actually DO transform into a robot and confessed as much to Roman. He agreed that, while the car really was cool, he probably would get bored and that perhaps taking it back would be a good idea.

I wipe it down, repackage it as best I can, pull out the receipt and off we go, back to StuffMart. At the return counter we hand it and the receipt to the girl (lady? chick?) working and Roman says, "It doesn't actually transform into anything!" She was already half way through the return process so it really didn't matter. I sign my name to a piece of paper that has no possible connection to me and she hands Roman the cash back for his purchase.

It seems a bit insane but not having to do a song and dance and explain how I made a mistake is very appreciated by this Mom.

And it gets better. Turns out I also appreciate the lack of attention to detail often displayed by those stocking the shelves.

We shop for something better and find Optimus Prime with a bonus Lunar Buggy. The shelves are packed with the same toy and a huge "Special Price!" sign for $22.96. What a steal! At the checkout, this of course comes up at $30 and a toy department rep is called to sort it all out.

Turns out the sign wasn't changed when the toys were. Given it was a store error, we were given the significantly discounted price. The toy department rep was then in the process then of fixing the signage...

Score two for Mama and a win for Walmart. They might not have won on the dollars earned front but chances are high we'll be back when Roman has saved more of his allowance.

They keep growing up

2011-07-06T08:32:00.000-04:00

The first couple days after school ended were rough but they seem to have settled out. I've learned to read them the riot act first thing in the morning to help remind everyone what type of behaviour is expected.

As a result, Roman and Lauren have actually spent time playing TOGETHER! One day they each kept asking me to do things with them. Eventually I replied, "That's what you have a sister / brother for. Go play together."

Roman has also been much more reasonable in his responses when things don't go his way. Overall, I think being out of school is helping. He doesn't have the peer issues facing him every morning. In that aspect, I'm not looking forward to Grade One.

The school practice is to pair SK kids with a same gender buddy for the transition to Grade One. There were only 3 other SK boys none of which are ideal matches for Roman. We had many days where he came home a wreck because of things done or said by the other boys. They weren't offensive or mean to Roman, but have been raised differently or have different situations. For example, one has an older sibling that he always goes to find at recess. Roman doesn't enjoy the all-boy running chasing shooting hunting type games this friend and his older brother play so ends up left behind and a bit lost. All three other boys are younger or youngest siblings while Roman is the oldest and not a particularly sporty-rough kind of kid.

To that end, I asked his Kindergarten teacher to NOT pair him with one of the boys, that one of the girls would be preferable or even no-one as we could manage that transition from home. I've also suggested that if there's a split class (Grade 1 - 2) that we'd be fine with Roman in that environment. She said Roman would be her pick for a split class too because he's so independent and advanced with his learning but that none of the buddies are. I took the opportunity to reiterate that not having a buddy is just fine with us, we'll help Roman handle that change. I'm not sure if it will happen or if it's the right decision but we do the best we can.

Meanwhile, Roman has had a new tooth come in - but he still had all 20 of his baby teeth. The funny thing is, one of his favourite cousins, Alex, turned 6 in February and has three teeth missing. Here's our kid with an extra and Alex with an extra hole! Last night we finally convinced Roman to let us yank the loose tooth the rest of the way out. It was ready all on its own but he was reluctant to do anything with it. Most kids are obsessive about loose teeth but not my guy! "The tooth fairy keeps calling me to see if your tooth is ready yet..." I'd say. He'd wiggle it a few times then be distracted by a shiny thing.

Last night it finally we could finally deliver:

Mr. Toothless

It hit me later that this is just one more significant sign of my (not so) little guy growing up. Baby teeth falling out, getting along with his sister, not melting down ever time something goes wrong, even trying new foods and being proud of it. Add in his trying to balance better on his bike to get rid of his training wheels and it's a whole new boy.

In no time at all he'll be wanting a drivers license and gas money...

Adventures with Fondant

2011-07-01T16:32:00.000-04:00

Four weeks ago I started a class at the local Bulk Barn with a goal of becoming familiar with fondant and how to use it. Given that it's a Wilton course, the Wilton products are promoted almost exclusively. Thankfully the instructor was a bit flexible and even provided this marshmallow fondant recipe we could use for the third and four classes.

Here's how it went for my final project. First, making the fondant. The instructions state to microwave the mini marshmallows in a "microwave safe bowl". Of course. That makes sense. However, does anyone actually own a microwave safe bowl big enough to fit an entire bag of mini marshmallows? Harken back to the good'ole days pre-microwave and poof! bowl over simmering water:

A whole bag of mini marshmallows and tablespoon of water

They eventually melt down into a pile of white sticky goo.

In goes the icing sugar - lots and lots of icing sugar...

When it's mixed as much as possible and cool enough to handle, the kneeding begins.

Mmmm silky soft fondant that actually tastes good!

Then came a LOT of work mixing in the colour. I decided to make dark brown fondant to cover the cake board. Next time I'll add the colour paste to the melted marshmallows and hope for the best. It took a lot of paste and a lot of muscle to work it all in to the cooled fondant. The blue for the cake covering was almost as bad but as it was a lighter colour, didn't require quite as much die or as much mixing.

The blue fondant was a bit drier than it should be so extra hard to kneed.


Of course we need a cake to put it on.

We're big fans of Duncan Hines cake mixes (and icing!) there's no milk ingredients in it - not even the chocolate icing! Corn syrup is pretty far down the list so Lauren's special diet requirements are met while we all get yummy cakes.

Looks like a blue PacMan ghost consumed my cake...

By the time I had the blue fondant rolled out enough it started to dry too much. PLUS I didn't catch the technique part about how to smooth the icing on - for the record, start at the top and smooth an inch or so all the way around the sides and keep working down. Don't do a full strip DOWN the cake or the icing will be too big and get big wrinkles.

In an earlier week, we learned how to make daisies. Roman wanted me to make sunflowers so I split the difference and went for black-eyed susans.


The centers are coated in a light brushing of gum glue then dipped in coffee grounds.

The finished cake. Next time, no cake board. It looks like it should be on the Queen's head.

Tomorrow we'll eat the cake for Great Grandma's 95th birthday. Purely coincidence but I'm glad we have a reason to eat it... besides the obvious of course

Endo update

2011-06-25T09:12:00.000-04:00

Lauren and I made the trek to McMaster today for her 6 month growth check up.

I find it amazing that we can have the first appointment of the afternoon and still have to wait 20 minutes before we even get into an exam room let alone see the specialist. As usual we were greeted by a resident. Thankfully she was more competent than the last few.

Either this resident is nearing the end of her residency or she is exceptionally capable. I'll even go with "both". P actually took the time to read through the notes on file and ask me questions along the way instead of having me recite Lauren's complete medical history. Again. She also asked questions regarding the practical aspects of Lauren's growth - has she outgrown any clothes or changed shoe sizes and when. It was interesting to have her think as a parent, not as a med student. It's not like I measure Lauren regularly...

What didn't change was how long the appointment took and having the endo pop in, stay for 5 minutes then declare, "well, see you in 6 months..."

The official news hasn't changed. Lauren's current stats: 84.8cm tall and 14.1kg which is 33.4 inches and 31 lbs. She's gained 1.4 inches and one pound in 6 months. She's still hovering under the 25 percentile on the Noonan Syndrome growth charts giving her an expected final height of 4' 8". Quite a bit shy of the 5' they originally forecast. The endocrinologist is happy though. She restated that as long as Lauren is staying on her curve, she's doing well and not urgent intervention is needed.

The doctor's notes on file stated we would be looking at trying another growth hormone stim test but given the limited change to Lauren's size, finding a vein suitable for the repeated blood draws is still going to be difficult. The endo has decided it can wait another year. At that point - when Lauren is 4 1/2 - we'll need to make a decision about what we want for Lauren. Hopefully by then we'll also have a better picture of her heart development and whether HCM (hypertrophic cardiomypathy) is in the works.

For anyone that's counting, being below the 25 percentile on the NS chart means she's not even on the standard charts.

but then we do love being unique in this family.

Two very happy children

2011-06-22T14:29:00.002-04:00

Another appropriate title would be "Customer Service is NOT Completely Dead..."

At the beginning of May we began our search for a SpringFree trampoline with tremendously frustrating results (read: NOT bouncing off the walls). The short version: found used trampoline, ordered parts, didn't get trampoline due to insurance snafu by seller, tried to return parts, parts delayed in transit, finally get refund for parts but not shipping and STILL have no trampoline.

Insert a multitude of calls to Megan at SpringFree and the picture is complete though the blog post tells it with much more drama.

The weeks that followed included daily Kijiji searches, emails to sellers, another almost purchase (involving a friend picking it up in Collingwood) that fell through and plenty of time wondering if this was ever going to be something we would have for our kids.

Finally, in my incessant web trolling, I found a listing for a trampoline "bought at Costco..." but no brand listed. Cue angel choirs! The seller confirmed that it was indeed the exact model we were looking for AND it was only 2 years old AND in great shape AND an amazing price.

Having seen so many SFTs snapped up so quickly, I was scrambling to find a way to get all four of us through an hour drive, an hour to disassemble and an hour home again amidst all the rest of our crazy weekend schedule. Cue new angel choir - I offered the seller (a very nice business man with two older kids) an extra cash incentive to disassemble the unit for us. Turned out his schedule was just as crazy as ours so if we could wait a week, all the better and he'd be happy to take it apart for us under those generous circumstances.

The next heavenly sign? Kevin needed to be in Toronto on the following Friday. The selling family would be home when Kevin would be in that area and there would be plenty of time for the seller to take it apart for us.

The week of waiting was tough but when the storms ripped through on Tuesday night taking out many of the neighbour's trees, we finally knew exactly why we didn't yet have our trampoline (or the new deck partly built...). How incredibly frustrating would it have been to have it then promptly have the wind whisk it off to Kansas?

The morning Kevin started to set it up, Roman looked out the window and nonchalantly declared, "Papa's putting together the trampoline." We hadn't said anything about a trampoline least things go madly awry again. "What makes you think it's a trampoline?" I asked.

"What makes you think it's not?" he replies. Smart ass.

We made a video for our favourite SpringFree sales Rep who in turn shared the love with Roman and Lauren, sending a package just for them - accessories for the trampoline, t-shirts and colouring pages.

Seriously! Who does that in business any more? I am still in awe. Okay. So yes. I spent a lot of time with Megan on the phone and on email but they were my problems, not hers and yet I knew she was pulling for us. Guess she really loved the video!

I'm also so happy with the trampoline. Lauren can get in an out herself and I know the kids are safe. I don't worry about them falling, twisting something, getting ripped up in a spring or crashing into a pole. I am in awe of Megan's generousity and support and in how well built this thing is!

So there it is. We're a happy hopping bouncing family. Finally!

Trike Lesson

2011-06-20T08:43:00.000-04:00

Friday we met with the PT to help Lauren learn to ride her tricycle. It seemed to be taking Lauren a long time to figure it out but we weren`t sure if it was a learning issue or a physical issue.

Turns out it is a driveway issue - both kids.

We took her trike (a sweet little red Radio Flyer) and set her up in the KidsAbility parking lot. Roman was off school as well so we took his bike along. For the first little while, Roman was content to follow along and help Lauren whenever she got stuck - which was fairly often. When Lauren's pedals are in balance, she doesn't have the strength to push forward. Given she has to push both the weight of the tricycle AND herself, I'm not surprised it's so tricky. With the huge parking lot being so flat, she soon learned how to give it a little "rock" and get going on her own. If we can keep her pedaling, her momentum keeps her going.

Once again, how proud am I? I felt a little bad "wasting" our PTs time but she was happy and able to confirm the best ways for us to help keep Lauren going. When she gets stuck, it's best to push on her toes to help reinforce where to put pressure to keep going.

For me, the highlight of the morning was Roman. He was an amazing big brother - the kind of big brother I wish he was ALL the time. Eventually I convinced him to give his bike a ride too. He still has training wheels on but in the big lot was able to get up enough speed, and enough space, to actually balance and keep both support wheels off the ground. He and I were SO proud of his accomplishment. I'm not sure who had the bigger smile. A few more sessions in a big parking lot and I think he'll have it all figured out!

We finished the morning with a stop at Mosborough Market for fresh, local hoophouse tomatoes and some local strawberries. They were divine! Roman and Lauren also discovered the fun play paintings at the market:

The weather was beautiful that afternoon and we joyfully spent it outside, playing and bouncing.... yes! Bouncing!

Garden update

2011-06-19T08:35:00.000-04:00

Spring weather was far from conducive to gardening forcing us to wait longer than usual to start seeding. Seems the garden has made up for it by accelerating germination and growth since.

The beets are showing a dusting of dirt from all the soil tossed up by the rains and sprinklers:

The peas sprouts were eaten by our resident rabbit, or the groundhog we've (not so) affectionately named "Chuck". The snap and snow peas were promptly fenced in and reseeded. The snow peas have since taken off again and our hopes are high the snap peas will recover just as quickly.

The tomatillos, as always, are thriving despite our unwanted and frisky guests:

The sweet peppers have been eaten which seals their fate in our garden - future gardens will be sweet pepper free. The growing season is rarely long enough to be successful and the local market gets flooded with gorgeous fruits for reasonable prices. Same with shallots and potentially tomatoes. We've planted a number of tomato seedlings we started ourselves but this is their last chance. If they succumb to blight again this year we'll allot the space to something else next year.

The carrots, onions and potatoes are beautiful as is the corn interplanted with pole beans, squash and potatoes.

Now we need to find some serious time for weeding.

Thankfully the elderberry bush doesn't care about weeds:

Our last bit of produce joy, the pear tree is gorgeous after its spring pruning and the fruit will be plentiful. Funny I'd never noticed until this spring that the pears grow upwards until they're big enough for gravity to pull them down.

This summer both kids have been "helping" and Roman has asked us to change the sign to include Lauren and Papa...

Officially official

2011-06-05T19:56:00.000-04:00

After two and a half years of testing, we finally have an official read on Lauren's hearing after our Friday appointment with the audiologist. To date, we've consistently had indications that Lauren has a mild hearing loss but have never been able to reliably determine the cause. I don't think we ever had all three (or four depending on how we count) tests fully completed and often there were obstructions - wax, fluid, colds, child temperament...

This time finished them all. We knew Lauren's ears canals were clear. We knew her ear drums were responding and that there was no fluid build up. She's also at an age where her responses are pretty reliable. Really reliable actually so we were all thrilled. Lauren learns very quickly and within a few tries on each conditioned response we started, she had it completely figured out. Lynne plays a sound, Lauren does a task, Mama cheers.

All good.

And the results are in. Lauren does have a mild hearing loss - or as I prefer to call it, a hearing deficiency. How can you lose what you never had? In her right ear, she doesn't hear anything lower than 20db. In her left, it's 10- 20 db depending on the frequency. (db is the volume, frequency is the pitch. At higher pitch she can hear more reliably in both ears.)

We also did a test that involves passing the sound through her skull bones, bypassing the inner ear and going straight to the cochlea. This resulted in better results - Lauren could hear these sounds at less than 10db for most frequencies.

But what does it all mean?

The bone conduction results suggest that her cochlia - responsible for getting the signals to her brain - are working fine. The problem is therefore in her inner ear. Since it's not fluid (as we can see by the ear drum colour and tension) it must be the three bones of the inner ear. Given the presence of a genetic syndrome, it is within the realm of possibility that there is a mild deformation of those bones interfering with the proper transfer of audio information.

Without an MRI or other more invasive test, there's no way to know for sure. And really, it doesn't matter.

In a practical sense, it confirms what we've already seen - that Lauren has trouble hearing things in noisy environments - is going to continue. It means that when she goes to school, we need to ensure she sits close to the teacher and that Lynne's recommendation to implement an FM sound field system is carried out, at least for Lauren's primary school years. A sound field system is for the whole room, not a personal system that only benefits Lauren. It's something the school would have to implement and it would follow her to each classroom as she advances.

In a way, it's good to finally know what the status is and have it be without question. It's good too to know that hearing aids aren't an issue. The loss is not significant enough to warrant intervention on that level and would interfere with some of the sounds she already hears.

We can't know if Lauren's level of hearing loss will change. While it's not likely to get better, it could get worse and will need to be followed, at least until Lauren is old enough to compensate on her own. We're scheduled to see Lynne again in January with the intention of having a formal report to attach to Lauren's kindergarten registration.

All the agencies involved with Lauren submit paperwork to the school boards at the time of registration. I know the school boards aren't looking for it on MY paperwork, but they're going to get it anyways! It's the only way I know of to make sure things like an audio system are actually in place for the day Lauren starts.

For me, it ensures she'll be learning what she's supposed to be learning, not struggling to cope with the environment AND learning at the same time.

Puzzle solving

2011-05-30T19:47:00.000-04:00

For many years my parents would wrap a jigsaw puzzle for us to open on Christmas Eve. It would give us something to do as a family while waiting for the big day. I enjoyed doing them. As we got older, the puzzles got trickier - boxes with no picture, large areas of sky, the same picture on the front and the back, edge style pieces in the middle, etc. those "ooo. this'll be a doozy!" type puzzles.

Who knew it would be good primer for me to figure out my children.

I *think* we've worked out the issues that caused all our concern last-this week. Each piece that we pull out of the puzzle makes the remaining picture clearer.

First corner piece is pain. Lauren was having more gas pains. This, inadvertently was our fault. She's been on a mild daily dose of laxative and, since the consistency of her bowel movements was softer than needed, we'd been working on, yet again, reducing the dose. For the most part this was fine but after a night of severe gas pains, we suspect it may have been causing more issues than we could see. We've upped her dose back to what it was two weeks ago and it seems to have relieved that part of the issue.

Gas pains would've affected her sleep plus I'm still convinced there is some level of obstructive sleep apnea affecting her. One particularly fussy evening, I went in to find her snorking and fussing, lying on her back. I comforted her and she woke enough to roll onto her side and snuggle one of her animals. That was last peep we heard all night. She even slept longer than usual which I attribute in part to her sleeping on her stomach.

As well, frequently throughout the last few days, Lauren has complained of aching joints. "My knee hurts Mama. Kiss it." or foot or ankle or... insert lower extremity here. During the day, kisses seem to keep things under control but a night time dose of tylenol gets us over the sleep hump and helps ensure a better night overall.

Lauren at the restaurant on Mother's Day. The kind of joyful attitude we're used to...

So that's one BIG one down, two more to go - why does she keep covering her eyes and why is she howling at us like the world is ending?

Turns out the eye covering is a carry over from last Wednesday's time at pre-school. They were having a sensory learning day and did a number of games and activities where they covered their eyes. At home it seemed to coincide with light changes or activity changes that suggested her eyes were bothering her or causing pain. Nope. Just trying it out!

Lastly, she's howling because she's three. She wants to be in control and she's trying out crying and screaming as a means to get what she wants and establish control.

I get it. There isn't much in her world that she is in charge of. She wants to be able to have Mama at her beck and call and do everything SHE wants me to do. And I'm not willing to indulge. Yesterday, when she was in a mildly howly state, I asked, "Who's the boss?"

"I am" she says.

"No. Mama is the boss." I reply. "Who's the boss?"

"Mama." she says in a forlorn voice.

When she started howling again a bit later, I asked "You're howling cause you want to be in charge?"

"Yes." came the wimpery reply.

We've since talked about how Mama will give her the things she needs and sometimes, Mama will give her the things she wants but when Mama says No, Mama is not changing her mind just because Lauren cries and howls.

There's been less of it today. Less power struggles over all which is nice.

Other than the eye covering, I believe they are all intertwined. Being able to reduce her level of pain makes everything else a little more tolerable. Looking at it another way, when I feel miserable, I want it to stop. I want to be able to do the things I want to do and I certainly don't want someone else constantly telling me what to do. When I'm tired, cranky and hurting, just leave me alone.

And so we hope for the best. The puzzle pieces are all in place though the edges are still a bit rough.

I'm worried about my little girl...

2011-05-27T22:17:00.001-04:00

When I picked Lauren up from school on Wednesday, she was happy. She'd had a great day, was perky and chipper and all was well. Even when we got home, right up until we got to the top of the stairs. Then she grabbed me tight around the neck, howled and demanded to be put in bed. She napped for 2 hours and we went through it all again at 4:30 and she slept until 6.

Thursday she put herself down for a nap in my bed around 2pm and slept til 4.

Both nights she still went to bed at a reasonable hour.

Today she lay in my bed by herself and played in the morning. Around dinner time she howled and was not herself at all. Eventually we convinced her to eat something by putting it in front of her where she was sitting in the living room.

In bed tonight she's been fussing and chirping in her sleep and sounding generally miserable.

There's no sign of fever or illness. Most of the day she's her normal happy, chipper self. She was fine at Home Depot and at KidsAbility. Yesterday she was fine in town to get Roman's hair cut but for large portions of the day her behaviours have been anything but normal for her.

I'm at a loss for what is causing it.

I don't like not being able to fix it.

OT update

2011-05-27T20:12:00.000-04:00

In my quest to be 'on top' of everything, I've already started into the transition to school portion of parenting Lauren. No she doesn't start this September. Yes I am self diagnosed as mildly O/C. I obsess about my kids and making sure they have everything they need to succeed. In this case, it's making sure Lauren's physical limitations don't interfere with her cognitive development.

I've already spoken to the bus people and if she can't manage the getting on and off the school bus safely, (especially with a big-assed backpack full of books and her lunch box... but that's another post) they'll arrange for a van or bus-taxi to pick her up. Maybe Roman too but we'll see if that actually transpires.

Today we met with our OT, Paula, who is amazing. She's always really supportive and on the ball with what will really help Lauren and make sure she doesn't slip through the cracks. Today we met to review where Lauren is at and determine whether we can get her into a programme for assistive learning technologies. This would set her up to have a computer for taking notes and doing assignments instead of relying in handwriting. Not that we'll skip handwriting - I believe it's important and going to be missed when it falls out of education - but rather, by having a computer to use, she'll be able to focus on learning and the task to be completed rather than how tired and sore she is from trying to physically complete said task. It's not something we'd put in place for her kindergarten years but I expect by grade 2 she could be in need and ready for it.

She's super smart and I am so thankful. In all the tasks Paula set out for her - cutting paper shapes, drawing lines, building kinex, playing a fishing game - she blew through. She was completely floored when Lauren could write her name on a Doodlepad. They're the only letters she can write but she did it with the skill of a 4 1/2 year old. This Mama bear is very proud!

It's one thing to think your own kid is brilliant. It's something else to have a trained professional be thrilled about their progress.

We never did get to the computer stage but Paula's going to find out what the criteria are and see if it's a 'better sooner than later' type of situation. While we both recognize that Lauren might be overqualified, on account of her limitations being physical not cognitive, neither of us wants to miss the opportunity and regret it later when she really does need help.

Paula's one big concern for Lauren is her thumb joints - they collapse when she puts pressure on her thumb, like when you hold a pencil. We take it for granted. What can be hard about holding a marker or crayon? I can't even describe it properly. Her thumb joints fold the wrong way when she's holding a writing tool. It doesn't seem to bother her, she can still write and colour fine, but long term, it's going to cause problems.

So now we have a blob of theraputty. It's like industrial silly-putty. We hide things in it like buttons, beads, toy animals and legos, and have her pull it apart. It's tough and this is the lite grade. If Lauren is ever strong enough to use the heavy-duty stuff, she'll be able to climb mountains with only her thumbs.

I expect Roman will have a blast with it too.

The one interesting / exciting / moderately overwhelming thing is Paula asking if she can nominate Lauren (which at her age is really me) to be a KidsAbility ambassador. It means participating in events, public speaking and generally sharing how KidsAbility has enriched Lauren's life. There's an interview process and time commitment but for now I've said, "Of course!" Lauren has a great personality and a syndrome people have never heard of. Perhaps our participation is a way to help bring KidsAbility into more public forums, get corporate partnerships and provide more services to kids that need it far more than Lauren has.

We'll see!

Busy Busy Bees

2011-05-22T20:31:00.000-04:00

Yesterday was finally warm, dry and sunny enough to get some work done - onions in the garden, the deck joists trimmed, gazebo demolished and a birthday party had.

Note concrete pad - imagine a gazebo on top.
Now image said gazebo in pieces in my parent's trailer for relocation.

Mmmm cupcakes.

Roman watches cousin Chris. The colours really were this crisp. Must have
been the perfect combo of sun, storm cloud, yellow slide and pear blossoms.

Today carried on the mixed up weather but with time enough to get the tomatoes and tomatilloes into the garden amid the thunder. Everything cleared up perfectly in time to join friends in town for a bbq. What started as a chance for us to get our two families together and let the kids bounce on their trampoline became a fabulous gathering with 5 families and 11 kids.

From the moment Lauren saw the trampoline, she was in it. As our hostess Kristina said, "I don't know why you would want a trampoline. It's not like she wants to bounce or anything..." Lauren would climb out after 3 or 4 minutes to check on Roman or play elsewhere then, as soon as there was room for her, she was right back in. When everyone else was eating, "I all done. I go tampoleene..." and off she went. Again.

We saw huge strides in Roman today too. Our host Robin is a tree guy and set up a short modified zip line for the kids. After watching two or three kids go, Roman asked for a turn. He waited patiently for almost 20 minutes for his turn and made the wait worthwhile.

Lauren wanted to give it a go too, "I go on the line Mama!" and while getting the gear on was fine, the test lift made her decide it might not be the thing for her today. A bit of a surprise from our daredevil. Instead, Lauren found another retreat, just for her:

The trees here are huge and with all the rain, everything is lush
and gorgeous - especially my little girl, in her bright pink crocs.

Purpose

2011-05-19T16:32:00.000-04:00

I wonder sometimes about my purpose in this life. Not in a morbid overly concerned way but in a practical, "what am I supposed to do with myself and my time" kind of way.

When Lauren arrived, complete with mixed up DNA called Noonan Syndrome, we were thrown into a world of research, medical testing and ongoing appointments. Given my insatiable need to "know", we were also thrown into a time of digging, researching, reading and investigating.

Finding reliable information was difficult. There's a US support group but the website was significantly out of date. Not a problem for most but coming from an advertising background and specifically as head of the internet department for an exceptionally talented boutique firm, I couldn't stomach the look, language and navigation of it long enough to gather the information I needed. As well, with Lauren such a tiny and troll-like being, I couldn't imagine how my little bit could end up looking the same as some of the photos.

TO BE CLEAR, I'm not saying any negative about the photos online. They are someone special and loved very much but to a mom of a new baby with a new diagnosis, the worst-case scenario photos are scary.

At that point, my purpose was to create an online resource for new parents of children diagnosed with Noonan Syndrome. I had all these years of web experience, surely I could do something productive with it. It became my mission to make sure access to information was compiled in a site that was easy to use, easy to navigate, easy to read and full of fun, full of life photos.

That's done at TheSweetOne.ca. Been done for a while now (probably needs updating again) and we've met some wonderful people through the site. It means people are finding it and some are actually brave enough to pick up the phone and call.

But now what? I still have conversations with people, including medical professionals, that go something like this: "Noonan Syndrome? What's that? I've never heard of it." and inside is my highly sarcastic response, "Really? Never heard of it huh. Go figure."

Which brings me to my current quandary. Now what? Leading me to a few options I consider regularly...

1. Growth Hormone Therapy is "off label" in Canada meaning children in Canada do not qualify for government funding regardless of their NS diagnosis. According to our endocrinologist, there isn't enough statistical data proving its efficacy in this situation. The government's stance is that NS kids' bodies (usually) produce enough growth hormone so regardless of the fact that their bodies fail to use the growth hormone effectively, they are unwilling to recognize HGH as a valid treatment for short stature. (In cases where the child doesn't produce enough GH, they are classified as growth hormone deficient and ARE eligible for coverage). Given the high cost of GHT (averaging out to $100,000 - 120,000 over the course of treatment) it's well outside the real of reasonable for many families to pay out of pocket. So do I take up the banner and start fighting to have NS recognized as a valid and valuable use of GHT? Get it on label and take finances out of the GHT dilemma?

2. Awareness of Noonan Syndrome in the general population is dismal. Mention Down Syndrome, or Autism or FAS or throw a rock and you'll hit someone who knows someone. Mention Noonan Sydrome and you'll get "What?" and "How do you spell that?" and "what does that mean?" Worse, you'll get a Google Search that tells people the affected child will be "short statured, have dysmorphic features and be mentally retarded" all of which are true in some cases, but somewhat irrelevant. So is my purpose to now get Noonan Syndrome into the public forum? If so, how? I have ideas (like sponsorship/human interest articles in major newspapers assuming I can find corporate sponsors willing to take the plunge...) but am reluctant to put my daughter out there. But without putting her "out there", how can I put a face to the syndrome? And is there any true value in getting it into the public eye or should I be

3. Raising awareness in the medical field to decrease the amount of educating I have to do at nearly every appointment, to increase the chance of better treatments, increase the chance of early diagnosis in children without the obvious markers and build a larger support community for families dealing the NS and its complications both physical and psycho-social.

And does one aid the other? Getting Noonan Syndrome into public conversation would, theoretically, hit the medical field as well. One article in a well placed news publication could get coverage cross country and, with internet support, internationally. Medical professionals are people too so surely they read once in a while.

So while continuing to obsess about building a chicken coop for my eventual flock and tracking down an affordable SpringFree trampoline for Lauren, I also obsess about what's next for me in the field of Noonan Syndrome.

Since I don't see myself returning to university for a molecular biology degree (though it has crossed my mind...) I'll be obsessing a while longer.

My purpose it there somewhere. I just have to find it.

Drip Drop. Someone make it stop...

2011-05-17T19:33:00.000-04:00

I'm starting to feel waterlogged. I like water. Truly I do. I especially like it in large lake format upon which my kayak could be situated with me in it.

I am not, however, particularly fond of near continuous rain. Roman and Lauren have also reached their tolerance limit and it makes for a volatile mix.

What started out as shear desperation resulted in an enjoyable trip to the mall for lunch and a bit of shopping. My two are reasonably well behaved in public places including sitting in a food court, wolfing down burgers and picking VeggieTales movies in the video store. For this, I am eternally thankful.

We were equally successful in The Children's Place scoring some really cute t-shirts for both kids AND pjs with shorts for Roman. He's been wearing hand-me-overs for years which work well enough but it`s nice to actually buy something for him that fits right.

Lauren was adorable (as usual) pulling item after item off the racks, turning to me and saying "Look Mama! This is cu-ute. Look at this dress Mama (it's a shirt but on her hey? Get the right size and it would be an adorable dress!)" or "Do you like this one Mama?" I was quite impressed -after each exclamation and exhibition, she carefully put each hanger back on its post and moved on.

It's already been determined that the shorts she's been wearing for the last two summers will fit yet again so t-shirts are all we needed. And until we can convince Lauren that dresses are meant to have bare legs beneath them, there's not much point in adding to that massive collection.

(On a side note, the night before my birthday, as I tucked Lauren in, she said, "You know Mama? I have a lot of dresses in my closet." Me: "Yes sweetie you sure do". "We go shopping Mama. Buy you some dresses for your birthday!" I'm taking it as a nice sharing gesture so I can be like her and not some critique on my outdated Mommy-life wardrobe...)

Arriving home found the backyard dry enough to be in and the garden calling for plants. It's too cool for anything substantial but the seed potatoes were attempting climb out of the boxes in cold storage. While the kids' participation could hardly be called "helping" they did keep me company and dig their own collection of holes while I put russet and yukon golds into the ground.

Fingers crossed we'll get a better crop than last year. Wouldn't take much so here's hoping. Everything else garden wise will just need to wait - even the peas - because the soil is just too saturated. There is hope for a dry few days coming up meaning a full weekend of seeding and attempts to keep Lauren from falling into the potato trough.

At least she loves getting dirty.

When we came in today she had more earth in her crocs than I had on my rubber boots. Makes me smile to see her happy and covered in soil.

NOT bouncing off the walls

2011-05-05T19:48:00.000-04:00

We were supposed to be bouncing. After the amazing day with our NS families and Lauren's complete and overwhelming joy at bouncing bouncing bouncing, we were stunned to find the most amazing opportunity.

And today had it snatched away.

Tuesday morning we followed a link for a used, well damaged but salvageable spring-free trampoline. New they cost more than I'd like to consider (though I've been considering it. Seriously considering it.) and used are hard to find. Not surprising for how they're made. Who would want to part with one?

This one had been flipped by the wind and needed replacement parts. Hubby and I inspected it carefully (in the freezing rain with two kids in tow), made a full deficiency list and, before committing to buy it for an insanely reasonable price ($75), made sure we could get all the parts from the manufacturer.

Not only could we get everything needed, but total cost including shipping would be less the cost of a used (not so damaged) unit. We joyfully committed to the purchase, arranged a day to dismantle and pick it up (today) then placed our order for parts. It was all was coming together perfectly - the delivery of parts was even due for end of day today, after we'd have returned home with our base.

Low and behold, when we arrived the trampoline was gone. Not just gone but GONE like it had never existed. Not a scrap or shred of fiberglass pole, trashed safety net or anything. Only a trail of crushed grass where they'd tramped up and down the hill. (Ha! A pun even... tramped!) The nice new insurance paid replacement was there, all beautiful and bouncy but no trashed one waiting for us and our tool belts. We were suitably upset / disappointed / insert adjective or expletive here but after time and considerable prayer, decided to take the positive approach that perhaps the family had managed to get it apart and had put it somewhere safe that we just couldn't see.

I left a polite voicemail and tried to hope for the best. The struggle I was having was that the guy and his wife were so kind, sweet, personable. The kid of people you like and trust - like us. So if they had sold it out from under us what would that mean for the world at large? Not only could they have sold it but they DIDN'T call. Not only was it not there but no phone call meant we had packed the kids and driven all the way there for nothing. Of course I really needed to shift perspective rather than ponder what it would mean for my world view if the people I instinctively trust can't be trusted.

Meanwhile, poor guy returned home to find no trampoline and no money from us. He's thinking the worst of us, just like we'd thought the worst of him. Then he heard my message.

Turns out the guys the insurance company sent to assemble the replacement trampoline - despite our guy's instructions - had taken the old one away.

This alone wouldn't have been a problem if we could've gotten it back but they TOOK A SAWS-ALL TO IT! Seems they couldn't get it apart so rather than try something else or leave it, they completely destroyed it. Over $700 worth of salvageable trampoline gone.

After a bit of time and pondering why, when we felt like we were finally catching a break, things would go so drastically wrong, hubby and I have both taken the stance that there must have been something more that was wrong with the trampoline that we could neither see nor fix that would've put Lauren or Roman at risk.

While it may be delusional or misguided thinking to some, we're confident that it happened for a reason.

We'll keep hunting, hoping for another break or the generosity of others to provide a safe bouncing, muscle and endurance building haven for Lauren.

My little jumper

2011-05-04T22:01:00.000-04:00

I could watch this all day. I love her "Science Centre" hair and just how happy she sounds and looks. Her smile at the end melts my heart every time.

The one and only sunny day

2011-05-03T19:08:00.000-04:00

Saturday was gorgeous! Finally - a day to get out, jackets optional, sun fully appreciated.

After morning swim classes, we arrived home to a day warm enough to do a bit of yard work, spend time with a wooly bear caterpillar:

Roman even found a dandelion leaf "so he has something to eat when he gets hungry Mama."

find said caterpillar a new home away from the sidewalk:

Complete with dandelion leaf

then a barbeque picnic. Mmmm. hot dogs with just a hint of char...

Next was a much anticipated trip visit with friends in the "Big City" - two families with children the same age as Lauren, also with NS. We try to get together every few months. I for one really appreciate the time we get to spend both because we know we all "get it" and because they are amazing people.

The host family had the best trampoline ever:

Absolute joy

and all the kids had a blast. Lauren would bounce til she was tired, get out then go back in a few minutes later. Late in the afternoon she was in for about 20 minutes straight. (The next day was a complete write off but completely worth it.). We also captured this moment:

Future BFF?

And, after a full day, amazing food and lots of play time, we packed our kids into their PJs:

The best PJ party ever.

and all headed for home.A joyful, sun filled, rejuvenating day I would be happy to repeat.

2011-04-24T12:17:00.001-04:00

Paying respect is a complicated matter.

Nana joined Jesus on February 6th of this year and we gathered yesterday to celebrate her life.

In the process, I learned a lot about her and the kind of woman she was. Kind, gentle, faithful... in addition to loving and generous. I also knew she was fierce if she needed to be but also very quick to laugh and tease. I learned that she was born in Sioux St Marie, lived in Windsor, worked as a medical secretary at Women's College Hospital in Toronto for two years without formal training then became a legal secretary later - also without formal training.

I also heard stories about my dad - things like building an insect zoo to raise crickets to feed to the praying mantis they caught. It fits perfectly into the character I know as my father.

While the singing in the service was dreadful, we could all appreciate just why Nana would plug her ears when they played!

I learned that Nana was a woman of strong faith, studying the Bible, attending services while she still could and even bible studies right up until last fall at least. This explains the weather. When Nana discussed her wishes with our aunt, she requested a "Celebration of Life" be held in the spring. Most of us would have to travel 2 or more hours to attend and she didn't want anyone "getting in a wreck just for me".

By mid morning, the sun was shining and it was warm enough to leave our jackets behind. Given it was foggy and I'd worn my winter coat when we left home, this was a miraculous improvement. Seems someone has the ear of God.

Through all these things I smiled, laughed and appreciated Nana more. Wished we'd known her more and vowing to ensure our children know their grandparents well. We lived far away from ours and as lives got busier visits became more rare. By the time I was old enough to understand and learn, we were already well entrenched in our own lives. I hold no one responsible for this. I am an adult and fully capable of getting into a car or picking up a phone. So I will for my kids.

Tears haven't been a huge part of Nana's passing. She's been welcomed home and is celebrating with everyone she loved whose gone before her. This is all good. She lived 94 full years and her body had reached her end. Knowing this was no longer a hindrance for her means tears of sadness aren't necessary.

What did bring me to tears though was the respect people showed while we were driving to the cemetery. Complete strangers, recognizing that, as a funeral procession of cars, we were in mourning and therefore stopping to show their respect. They don't know us. They don't know Nana but yet they stopped. (Not everyone of course but that too has the lesson that life continues on.)

There were four unique souls that stood out in their respect. It was noticed and appreciated by all three family cars. First was a man weed'n'feeding his lawn. He'd reached the road end of his pass and stopped, waiting as we went by. Next was a tractor trailer that stopped - right in the middle of his lane not only showing us respect but helping those behind to take note as well. Third was a cyclist on a back country road. He just stopped and waited. Lastly, but not insignificant in anyway was a man, just out for a walk. He too stopped, took note and waited.

These moments of respect for a woman I loved are what brings me to tears. Then and now, hours later.

So thank you to those souls who take the time to stop. To show respect to the deceased and to their family. To make them realize that the life lost was significant.

The end of an era

2011-04-24T12:16:00.000-04:00

Our trip to the Celebration of Life service for Nana added some other memories to our collection.

One that sticks in my mind is the arrival of Gray and Barb, family friends we've always known. Gray grew up with my dad. When my parents moved to their rural home 38 years ago, Gray and his family lived only a few kilometres away and we kids have always been friends. They chose to make the 2 1/2 hour drive to support Dad and to celebrate the woman Gray has known far longer than any of us grandkids.

For this I am thankful.

Next to the cemetery was a farm with Arabian horses. Somehow the peacefulness of the setting was enhanced by their presence.

And in our younger years we would make the drive on Christmas Day to see Nana and my mom's family. We would spend the night and make the return trip on Boxing Day. Boxing Day also happens to be my younger sister's birthday. Inevitably there would be a blizzard ensuring the 2 1/2 hour trip became 3 or 4 and require a stop at the Husky station. Oh how she came to hate the Husky station. It symbolized all the things she wanted for a birthday but never really materialized.

Yesterday though, in honour of what will be our last trip of this nature for many years to come, we all stopped at the Husky station for dinner - Dad, older sister and her family of three, younger sister and hubby and I. The staff were welcoming and set up a table big enough for all of us to sit together then joined in the laughter for the 90 minutes we were there.

Nana would've appreciated the teasing, the food and the company. Perhaps even little sister has warmed up a bit to the Husky station.

Rothschild's Sewage and Septic Sucking Services... or, "All About Poo"

2011-04-19T20:07:00.003-04:00

Now that I've caught the attention of Red Green fans worldwide, here's a pic of how it seems everything, no matter how mundane or frightfully smelly absorbs the interest of my children.

Let's be honest. A giant, BRIGHT RED, diesel truck rumbles up to the house. What boy can resist? and what little sister can resist the excitement generated by the big brother she loves with out end?

Never mind that it's bleepin' cold out or that the wind was so pervasive I couldn't light the barbeque - they're out there like vultures on a carcass watching every move.

At least until they realized that the giant vacuum didn't really do anything interesting and it really was far too cold to stay out. Turns out the truck driver used to be our mailman...

It was also a day of dancing for Lauren. A new dear friend gave us bags of clothes and Lauren has already picked out her favourites - a little flippy skirt and a purple (of course) shirt complete with "Princess" blinged across the front.

Our one and only true sign of spring came with a trip to a local farm (Gold-Bar Livestock. Best Red Angus Beef... EVER) to pick up loads of manure for the garden. Fingers crossed it'll restore our soil enough to get reasonable crops this year. Along with the expected count of calves, there was also this joyful bundle - just three weeks old, named Penelope:

There, in the back of the photo is our farmer friend off on the tractor to fetch us a load. We are so thankful there are actually kind people left in the world. Not only were we given free manure (of the gardening variety, not political ) but they even took the time out of chores to get and dump the load right into the trailer. Hopefully I'll be able to farm-share and return the favour with fresh veggies... so long as we actually ever get to plant anything...

In Ontario, there are TWO seasons

2011-04-10T08:34:00.000-04:00

As soon as you get your drivers license in Ontario, you learn that while they teach you about driving in four weather seasons, there really are only two - winter, and construction. Roman has his own interpretation:

While the garden isn't yet ready for planting, we did get some seeds into a large tote - mixed greens and spinach and we have our fingers crossed for an early crop.

Lauren helped

And spent some time playing in the dirt. She is definitely a little mud monkey!

I [heart] Lauren

2011-03-25T21:03:00.000-04:00

Our annual visit to the pediatric cardiologist was this morning. In true Lauren fashion, things are different but not really.

Dr. T-G asked about any major medical changes in the last year which I took as an opportunity to ask about the ASD (hole in the wall between Lauren's atriums) that the anesthesiologist noted and dealt with during Lauren's eye surgery in October (see Surgery Day). The doctor refreshed her memory and I gave her a copy of the anesthesiologist's report. She explained that this sort of ASD is seen in 25% of the population and so is rarely mentioned. This is okay with me. She explained it and I`m content with the answer.

During the ECG (echocardiogram) Lauren was amazing. She stayed still the whole time. Imagine. A 3 year old, in an unfamiliar environment with a woman she might barely recognize from one year ago, and that woman rolling and prodding your chest... and she didn't move, didn't talk, didn't fuss.

Unreal.

Dr. T-G paid special attention to the atrial septal wall to see if the defect was indeed there and/or if it had changed. She actually took the time to show me where it is in the images. I appreciate that very much.

She went on to explain that if the ASD was all we were seeing her for, we would have been discharged long ago. But because of Lauren's Noonan Syndrome diagnosis, she tracks Lauren because of the potential for ...
At this point Dr. T-G started to explain the thickening of the muscles. I interrupted with "HCM" and she looked relieved. At this point our conversation became a little more technical and again, I appreciated it. I don't need things sugar coated and I follow medical conversation fairly well.

Overall, for Lauren, some of her heart walls are thicker than they should be for her age - most specifically her left ventricle. Dr. T-G was quick to state that it wasn't enough to declare it the start of HCM but, when prompted (for can you tell if the thickening is different than HCM) did confess that we can't know without a muscle biopsy. As it was a scientific question for me, not a parental one, I didn't pursue it further.

The doctor was concerned about Lauren's elevated heart rate throughout the entire appointment but since we have a clean 24 record from when she was 6 months old, we'll leave it for now and do a new 24 hour assessment next year.

The last unique thing about Miss Lauren is that the left ventricle - the one that's thicker - is also hyper-contractile. It compresses more than it should to the point of nearly collapsing the cavity completely. The doctor couldn't tell me what it means or what the long term prognosis would be but again, I appreciate her candor. Something else for us to watch over time.

The interesting thing for me is that generally, if the wall thickens, the heart has a harder time compressing and pumping but here Lauren's is pumping more vigorously. But then I'm not the cardiologist. While watching the ECG I was reminded over and over how skilled this doctor must be to discern minute differences - millimeters really - between what's normal and what's not.

The rest of the day was pretty normal though Roman came home from school extra tired and overly sensitive. He had a meltdown just before supper which lead to a conversation about why Lauren had stickers and he didn't. Next was a conversation about what makes Lauren's heart different from "everyone else's".

This lead to me drawing a picture of a heart and showing where the differences in Lauren's are:

The thin and thick lines are to show the thicknesses of heart walls - thin for us, thick for Lauren. The tool hooked to the computer was me explaining how Lauren had to lie still for 15 minutes ("almost as long as one of your Wii chips") while the doctor used the roller tool to take pictures of her heart.

While I explained this to Roman, Lauren drew this:

Add this to Lauren checking everyone's hearts - front and back - with her stethoscope and perhaps she'll be the first certified jockey cardiologist.

The most amazing dental patient ever

2011-03-23T08:44:00.000-04:00

That would be Lauren. At her cleaning appointment before March Break, the dentist found Lauren's upper molars had very deep grooves that were starting to show signs of decay.

Given she'll likely have her teeth longer than most kids, we needed to fill them.

Yep. My three year old now has fillings.

She was amazing. She lay in the chair, opened as wide as she could and let Dr. Dave clean, fill and set the cement. Tooth number two was a little trickier as she knew what to expect. Everything went well until the assistant poofed her tooth to dry it and sent a poof of air down her throat as well. Even amidst the howling they were able to set the second filling.

Both assistant and dentist were amazed at how well she did to sit and let them finish the job even with big instruments and fingers poking around her mouth.

Not that we want to always go through this sort of thing but I like the feeling of still being amazed by my little girl's fortitude.

March Break Vacation Photos

2011-03-23T08:34:00.001-04:00

March Break was spent at Deerhurst Resort in Huntsville. The kids had a great time though we all came home a bit short on sleep. Roman`s cast was off - Hooray! - and we had a green light from the orthopedic specialist to do whatever Roman felt up to doing.

This included tubing:

Kids 'n' Ponies: Roman learned about "Ponies" (they were actually miniature horses which he is sure to clarify often) what they eat, how to brush them, the equipment for riding... and then a ride on Betty:

Lauren had Kids 'n' Critters and also got to ride on Homer. By the end she was leaning forward with her heals up just like a jockey... hmmm... visions of our future?

Next favourite was the Bouncy Castle:

And eating in restaurants:

Lastly, time snuggled in our suite:

It's off!

2011-03-10T19:51:00.000-05:00

We're free! The cast is gone!

The doctor said "he'll be walking again just fine in a week or two". Apparently this particular doctor hasn't applied the proper motivator *cough: bribe!* with his other patients.

Right away Roman became quite dependent, "I can't do it Mama" "It hurts Mama" "No I can't wear my boot Mama." "You do it for me Mama"

"Argh!" says Mama.

We went to the chiropractor and I planted his foot for him reminding that it was okay to put his foot flat on the floor and put weight on it. I knew his calf and ankle muscles would be weak but I also knew he would milk it for all he could.

Next was a stop at the local "Buy More" for Lauren to spend her birthday money on a March Break treat. We were also planning to hit a nearby Lego store (an actual Lego store - all Lego, only Lego) so Roman could spend the allowance he'd been saving for a "Police Mobile Unit or maybe the airplane..." Both were in the store. Same price as the Lego store but without the 30 minute drive. SCORE! Roman made his pick and still had a bit of allowance to save for next set. He was suitably excited about both.

Lauren, meanwhile, chose some Lightning McQueen cars and has been happily driving them ever since.

It was after the spending spree that I decided bribery may be the best way to approach our mobility dilemma. "Roman... when you can walk all by your self again, I'll put more money in your saving jar..."

Next thing you know, that foot is planted and he's off. First it's just a bit in the library. Then it's all through the house. Then he's peeing by himself (and the angels sang!!!) and into bed without a fuss.

I'm going to have to part with my five bucks a lot sooner than I expected. Not having to carry him or find room for the stroller in the car though is worth far more than five bucks!

So, cast off? Check.
Legos purchased? Check.
Vacation swim plans saved? Check.

Five bucks poorer? Check check check. (okay. that would be $15...)

Bribery firmly planted as motivational technique in this house? Check... or is that cheque?

First Trip to the Dentist

2011-03-08T16:27:00.000-05:00

Lauren had her first official trip to the dentist today. Her teeth have already been checked a couple times - just a cursory look by the hygenist - as many parents of kids with Noonan Syndrome have lamented about their little one's enamel issues. With these previous checks, we've been told "things look good". "It's all fine."

But as with all things Lauren, it is and it isn't.

For the most part, all is as expected. There wasn't a lot to be cleaned which was great but there are some areas of concern where cavities have started.

Her top back molars both have very deep groves where some decay has begun and between some of her front teeth because they overlap a bit. Her teeth are too tight together to clean effectively so problems are starting. In a crazy way, this makes me feel better because it isn't completely lack of effective brushing that's responsible.

We can fill the molars and have two appointments booked already. The front teeth we'll leave because fillings there just don't stay in place. Given these are the first teeth to go anyways, the dentist isn't too concerned. His words were that at the worst, they'd come out a bit early.

Now, for my little NS kid, a 'bit early' could be a 'lot early' but who knows. For now though, we'll try to add flossing to our daily schedule.

For the record, Lauren was AMAZING. She sat still, let Leslie poke, scrape and polish and let Dr. Dave poke and count.

Roman was in the chair with her watching TV and helping show 'how it's done'.

So, not all good but good enough for today.

Seriously? A Snow Day? You've got to be kidding me.

2011-02-28T08:35:00.000-05:00

Each time I fell asleep last night - and there were a lot of those - I reveled in the fact that I'd have the morning to myself with both kids in school and hubby in Toronto. I could crank some music, do some scrapping, read the book for book club tonight (I've just joined and I'm about 6 books behind...) and maybe do a bit of baking so the afternoon would be free to run errands with Lauren.

Imagine my intense disappointment when we got the call at 7:20. First of all, no one local calls us on the home number at 7:20am. Even business calls don't start til 8:30 or so. Kevin and I both had puzzled looks on our faces.

It was Lauren's school confirming that the pre-school would be closed today as the school buses were canceled.

Can I hear a "WHAAAT?"

It's been raining all night so it's not because of snow accumulation. Seems that despite the warm temperatures and forecast of SUN ALL DAY they've canceled all the school buses. ALL of them. Not just the rural ones but in town too.

With Roman's leg in a cast, I've been driving him to school so technically, he could/should be going but I have my mom`s voice in my head "If the roads are too treacherous for school buses, we're not going anywhere" and with 80% of Roman's school bused in, most of his class will be empty. Ironically enough, since the schools are still open, Roman's teach has to be there.

She lives around the corner from us.

Her kids take the bus.

She has to be at school but her children are expected to NOT be at school.

So I will try to make the best of it. I've already read the riot act and declared that they will get along and they will listen and do as they are told the first time.

I've had a chorus of agreement.... we'll see how long it lasts.

Syndrome Fatigue

2011-02-24T19:42:00.000-05:00

I'm sure the world has never heard of it. Syndrome Fatigue. But I'm calling dibs.

A Google search returned pages and pages of "Chronic fatigue syndrome" and even a quotation marked search still returned references to chronic fatigue, simply in a more random order.

I expect though that there are a lot of people - parents mostly - who routinely suffer from Syndrome Fatigue.

It's when you've had enough of dealing with your child's (or your own) syndrome and all the complications thereof. Complications like ongoing appointments, in home therapy, constant struggles and scheduling nightmares, remembering meds and their own scheduling nightmares and, for those outside Canada, the financial burden of paying paying paying for every visit, consultation and phone call.

Even for those not paying financially, we pay with hours, with energy and with what's left of our spirit - a little each day until eventually - for some, sooner than others - we're tapped dry.

And from time to time we get replenished, perhaps by a bit of good news from a doctor, maybe semi-annual visits becoming annual or a prescription ends. All good reasons to rejoice and feel once again like maybe, just maybe, we can handle this after all.

But then of course something else creeps in - more speech therapy, more and more and more visits to the ENT, upcoming annual checkups, and so on.

The ugly head of Syndrome Fatigue rears itself in little ways - like a change in my patience level. Like how an extra long wait to see the Endocrinologist for a routine checkup and having to explain - again - Lauren`s entire medical history and - again - teach a rookie about Noonan Syndrome tests my endurance. And having to wait while they go through it all with the endocrinologist before she comes in and spends all of 5 minutes with us stretches my professional attitude even thinner. And when we ask about delayed puberty affecting when Lauren reaches her final height and get a "oh.. I hadn't considered that" from the expert, that ugly head shows up as frustration and a feeling of "why can't they just read the freakin' file??!?!" which may not have been felt before.

I try to be extra patient and understanding when it comes to doctors and their residents. I know they're busy and I understand the need to educate which is why they have residents do the intake. And further, if the moms like me don't take the time to teach them, these future 'experts' might never learn what the ACTUAL life of someone with Noonan Syndrome looks like beyond the textbook definition.

While it's taken three years, I am officially tired of it.

The same week as the endo appointment I had to teach a different resident at a different appointment all the same things all in advance of confirming Lauren's ongoing cough and congestion was still, after 8 weeks, just a virus.

Both appointments were 300% longer than they should have been had it just been the doctors we were scheduled to see and not the residents first.

Another ugly head rearing was just before Christmas when Lauren finally had all the wax cleared out of her ears. The audiologist with the ENT's office isn't well equiped or experienced enough to test someone Lauren's age. I promptly ended the attempts saying we'd get in to see our usual audiologist. By the time we got home, the last thing I wanted to do was book yet another appointment involving a drive across town and pretend to be enthusiastic when Lauren drops a block in a bucket because she heard a sound.

Seriously. She can hear. Maybe not all the time and maybe 100% but she can hear and she can talk and for cryin' out loud I'm not putting us through another test already just to get inconclusive results AGAIN.

oh. sorry. SF Ugly Head meet Public. Public? This is Syndrome Fatigue's Ugly Head.

On a day to day basis syndrome fatigue shows in the sigh and the slouch. You know it. You're doing it right now when you think about what you have to do for your kid tomorrow.

It's the slouch and sigh that accompanies the reminder that I need to work on Lauren's Bs, Ps and Ms with her and that we need to see the SLP tomorrow without having made much progress. That we see the ENT (again) next week and I haven't put oil drops in Lauren's ears nearly enough. Then seeing the PT because Lauren's having trouble climbing stairs. And that when we get back from (much needed!) vacation, we see the cardiologist and I need to ask her about the additional defects in Lauren's heart I learned about from the anesthesiologist instead of her and...

And hoping - praying - that Lauren will sleep the night and that we'll keep her diet on track so we can all get better sleep all the time and she can get over yet another cold and we can get back to the real world instead of cooped up in this crazy house with a boy in a cast and the germs and what not that go with the doldrums of winter in Ontario.

So am I crazy to coin a phrase like Syndrome Fatigue? I'm tired of the syndrome and all that goes with it. I want to hide my head in the sand and pretend it doesn't exist for a while. Pretend my daughter has no additional needs or medical requirements. Pretend that we're a 'normal' family with only 'normal' complaints and concerns. To be able to start a day without checking the calendar and not think about the fact that I don't want to think about "IT".

But I guess that would be boring.

Family Day = Super Quiet

2011-02-21T18:56:00.000-05:00

It wasn't the day I was expecting. The forecast on Saturday had us buried in snow by today. By the time we went to bed last night it was just barely started and really didn't turn out to be anything.

A bit disappointing really. The weather people keep predicting these monster pile-ups of snow and we get nothing. Now I realize that's not the case for most of the province and northern states but I might be the only person in the region who actually WANTS the snow.

It hides the dull brown of the empty fields and the mud of my front yard until the air is warm enough to do something useful.

With no real accumulation of snow, the day definitely did not start out the way I expected.

And it didn't ever get to any semblance of normal.

The kids, whom I expected to get a bit stir crazy, were actually too sick to do much of anything.

Roman curled up on the couch only moments after he crawled out of bed. Lauren was back in bed at 9:30 and stayed there until 11:45.

Roman spent the entire day either snuggled on the couch or curled up in my bed for a nap. He didn't even play his Leapster that long once I reminded him to listen to his body tell him when to stop. Lauren then fell asleep on my chest for 40 minutes before I rolled her onto the couch. She slept another 20 minutes there while Roman slept in my bed.

Sharing frozen pizza for dinner was the most time we all spent together as a family.

Very little time for fighting, yelling, whining, anything.

A quiet quiet not so family filled family day.

But you won't hear me complain. At least, not until tomorrow when they're all feeling better and I'm the one needing to nap.

Happy 3rd Birthday Baby-Doll!

2011-02-19T16:18:00.001-05:00

Our little one is now three...

Opening her present from Roman just as soon as her breakfast was done

Yesterday was a beautiful day for a birthday... note this is in Celsius...
Today hasn't been anywhere NEAR that nice.

Lauren, in all her glorious 32 1/2"

A herd of cupcake horses came to the party

They were happy to have hay to eat

Lauren loves this horsey from Oma best of all

30 year old box + (almost) 3 year old girl = most fun ever!

2011-02-12T19:15:00.002-05:00

"Hellooo? Any buddy dere?"

At least 3 more weeks

2011-02-10T19:25:00.000-05:00

We saw the orthopedic specialist this morning. Roman's leg is healing as it should but we have at least three, and possibly more, weeks to go before he can be cast free. At the last appointment we were told two more weeks which is what we've all been - literally - counting on. We're now using this as a motivator to get him to eat more and eat better - more milk, more protein, more food in general. Tonight, in response to this not so subtle lesson from me, he insisted on a huge glass of milk (after promising to finish his pasta) because it would help his leg heal faster. Hopefully three weeks of eating more will keep him eating more. Not that he NEEDS it but some days Lauren out eats him and she's not really growing.

The biggest frustration with this situation is the set back. Roman now has a shorter cast leaving his thigh and knee free. This, one would think, would be a good thing but in the four weeks, his leg muscles and knee have atrophied enough that he has no strength in either. Walking is actually HARDER without the full cast.

The good thing is we were able to give his thigh and knee a good scrubbing tonight so he's not quite so itchy.

For Roman, the biggest disappointment is still not being able to go on the bus. He loves the bus and his bus driver. Since Roman is the last one off, he and Stephanie spend those last few minutes chatting and joking. I think too he wants his freedom just as much as I want him to have it.

Our next appointment is 10 days before we go on vacation. Fingers crossed we'll at least be out of the cast by then. Even if we can't go sledding or skiing, at least we can be free to be (and free to pee!)

2011-02-06T12:12:00.000-05:00

Nana
1916 - 2011

Love You BaNana

2011-02-03T19:08:00.001-05:00

We took a road trip today - my older sister and I. Originally the trip to see our Grandma was scheduled for this coming Saturday. Earlier this week, a scope to check her throat revealed that her problems eating were not related to her esophagus but blamed on a small stroke.

Being 94, Grandma declined a feeding tube.

Yesterday, after her IV collapsed yet another vein, she declined to have it reinserted.

Saturday no longer seemed close enough.

Earlier in the week, when we planned the trip (it's 2 1/2 hours one way) I decided I would video tape the kids so Nana could them. Her vision isn't great so I was going for audio and any visuals were bonus. I asked the kids each some questions about their favourite things and what they like to do. For once, they cooperated instead of demanding to see the pictures.

Today we made the trip and I'm glad we did. Nana, while not looking so great - at 94, dehydrated and unfed - was coherent and in good spirits. She couldn't speak very loudly but her smile and sense of humour were in her eyes. When big sister spoke about her youngest son being an army cadet and loving it, Nana lit up and you could see how proud she was.

When I showed her the video, she smiled and called them rascals.

She's always called us rascals.

She smiled a lot throughout. The enthusiasm in Roman and Lauren's answers made her light up - like the favourite colour question getting a very enthusiastic "PURPLE!" from Lauren.

At the end, after Lauren sang the alphabet and Roman counted to ten in French, I asked if they had anything else to say. After receiving reluctant no's as response I said, "okay. then how about you say 'Love you Nana!'" which Roman did with true affection and enthusiasm. I turned to Lauren, "Say Love You Nana" to which Lauren, with a smile said, "Wuv you baNana!"

BaNana's face and eyes lit right up and she replied,

"I love you too"

But why not?

2011-01-29T19:22:00.001-05:00

My mom did a very sweet thing for me. She read and subsequently saved an article for me and mentioned she had it when we spoke today. It's about putting your marriage first. To which I said, "Oh. No thanks."

She asked why I didn't want it and I can honestly say I don't remember what lousy answer I gave.

I pondered it for the next while. Why didn't I want to read it? Lots of people would. I know I put all kinds of things first but that myself and my marriage aren't them.

So why didn't I want it?

I realized that I don't read, nor do I want, any self help type information. I don't watch Oprah, Dr. Phil or anything in that genre and the only magazines and books I buy are food related.

I used to buy them - the self help related books I mean. There are a few on my shelves as evidence to this - things like Women Who Run With Wolves and some by Dr. Sears for when baby number one was on the way.

But nothing since with two reasons why.

The first was a bad taste from a parenting book telling me how my boy "would be". Not a "might be" but a "because he's a boy, he'll be like this..." I promptly closed the book and gave it away. Humanity has a habit of seeing what it's told it will see. You tell me my boy is going to be unable to concentrate and I'll only see the times he can't concentrate. Leave me to discover him on his own and I'll see the good before the bad. I'll find ways to cope and encourage who he is not try to make him something different.

The second was the realization that no one can really tell me how to improve my life because they don't live MY life. They can tell how they've lived their life, the situations they've been in and how they've managed and, if it's well written, I'm happy to read it. For me to read that I need/could/should want to do things a certain way because someone tells me to without taking the extenuating circumstances of my life's complications is illogical, and ultimately, self destructive.

It sets me into a tail spin of frustration that I haven't done things a certain way, have no inclination to or simply can't because of those same extenuating circumstances.

Things like "going out regularly with just hubby". Sounds great would love to. Sort of. Well, not really. I like being home in the evening. The money needed goes into our savings or pays for preschool and I would like to know that whatever loving soul I've left caring for my daughter isn't going to be faced with her waking, screaming with pain. Yes they`d get through it but it's not fair for anyone to deal with.

And while the examples of suggestions and rebuttals is endless, I will end with huge thanks to Mom for thinking of me, for wanting the best for me and wanting to keep me happy and healthy.

I will continue to muddle through life for a while knowing that, while I could do things differently, they wouldn't necessarily be better for me (or us) and that my instincts will have to do for now. So far, when I listen, they haven't been wrong.

Perhaps it's a gender thing?

2011-01-27T19:33:00.002-05:00

When speaking with my mom this morning, the topic of my ornery son and me, the grouchy mom, came up.

"I don't get it." she said, "You girls were never like that. You didn't talk back or mouth off. So-and-so's son is doing the same thing..."

Nope. We didn't. At least, I don't really remember it if we did. We could say it was a generational thing - that raising kids was different then than it is now - which is it - but I'm not entirely certain that's the case.

I went on to explain that it did improve dramatically when Roman shared "I really don't like having a cast Mama."

"Me either" I said. "I don't like you having a cast either."

And his attitude improved. It was like a light switch. Dark and moody one moment, light and sunny the next. Even at an afternoon appoint for Lauren, Roman was the boy I'm used to having around - quiet, polite to adults, doing what he's told the first (okay, second) time through...

Even through dinner time and while I put Lauren to bed. Normally when Papa's away at bedtime, Roman gets to watch TV while I put Lauren to bed. Unfortunately his TV privileges had been revoked (still are actually) AND his computer privileges too. But there was no fussing, no whining, and only one small interrupting of Lauren's bedtime process.

It's not the first time I've witnessed this sort of transition with him.

He gets into this ass-y state where he won't listen and is constantly rude and defiant. After we draw the truth out of him (a sometimes painful affair requiring medieval torture techniques) he perks right up and is, once again, a delight to be around.

I mentioned this 'pulling teeth is easier than getting my kid to tell me what's up' to my older sister who knowingly replied, "Uh huh. Been there. Twice."

So, perhaps the reason we girls were 'never like that' is because we were, and are, penis-free. Perhaps it's tied inexplicably to the Y chromosome. I suspect it's right there alongside the inability to put dirty socks in the laundry, putting the toilet seat back down again and [gasp!] actually get the pee INTO the toilet instead of on the floor...

Mama The Grouch

2011-01-22T18:47:00.000-05:00

It's been a day of constant - and I mean CONSTANT disciplining today and it has made me very VERY cranky.

Lauren has a cold so she's borderline miserable. Roman is borderline dependent so I'm miserable.

And they both seem to have forgotten how to listen. Perhaps their ears are on recall? I'm pretty sure Lauren's are full of fluid again. When she was futzing about food, I gave her lots of options. Eventually I asked loudly if she was having trouble hearing me. She looked at me with those big doe eyes and said yes. When I remember to speak louder than usual, she seems to hear better and act better.

When she can't hear well, she's like a little demon child. It was like this in early December when she got her last cold and her behaviour improved dramatically when the cold cleared (about 4 weeks later. Yes. Doing the math means we've had about 2, maybe 3 weeks of normal attitude out of her before starting again.

Roman, meanwhile, seems to have forgotten every house and family rule we have. The talking back and arguing foreshadows teenagerhood and, combined with his unspoken insistence that his broken leg entitles him to special treatment has really pushed the limits of my patience.

At least I have my Jeep back. The boys at the shop one again have shown me that good customer service isn't completely dead. The simple fix worked, for which my pocket book is doing a happy dance, and the boys brought my truck to us instead of us going to get it - which would've been a challenge with two kids and a cast.

Sounds like the name of a musical - "Now at the Canon Theatre, Two kids and a Cast. The story of a mom trying to stay sane while living the big life..."

Note the heavy sarcasm on 'big'...

Freaky new moon. Are we done yet?

2011-01-20T14:24:00.000-05:00

It is my firm belief that three trips to the local hospital in one week is quite sufficient.

First was last Thursday night when Roman broke his leg. That story has already been shared.

Last night, I had the joy of spending a few more hours in the emergency department after Great-Grandma fell and fractured her hip. That word "joy" is sincere is as well. She was appreciative, focused and quite coherent. While waiting for doctors we talked, smiled and joked about different things. Things like how I wanted to stay for as long as she would be seeing doctors so we could all have the same information. "Because sometimes it's hard to remember everything" I said. To which she smiled and said "yes, my memory's not as good as it used to be" or something to that effect.

It was helpful too to have me there when the cardiologist came. Doctors tend to ask a question the same way when they don't get an answer then assume the patient is incapable of answering when they don't. In this case, the cardiologist was trying to ascertain who GG's cardiologist was. He asked if it was "so and so" and GG looked at him blankly then said, "I don't know how to answer that." The doctor asked again, louder. When he still wasn't getting an answer, I interrupted with "Grandma, Who's your heart doctor?" She then rattled off the names of both cardiologists she had seen years before.

In the end though, GG has admitted to the hospital to the last bed available in the entire building. The orthopedic surgeon scheduled a hip repair surgery for today (happening right now actually) and our fingers are crossed that all goes well. It'll be a tough road to get GG up and walking again and she was so angry that she'd taken a silly fall just as she was getting more mobile and independent again.

This is also why the surgeon wanted to do the repair even though GG is 94. She was mobile so they wanted to give her the opportunity to be mobile again. If they did nothing, she would continue to have pain and likely not be mobile or independent due to how the bone would set.

My one frustration with the whole evening is how doctors don't bother to read the file. Seriously people. Why bother writing things down if no one else going to read them? How many times does she need to explain what happened? How many times do we have to say, "her medication list is in the file (you know... that stack of paper you're holding on to???)"

Today we were back at the hospital for Roman's follow up with the orthopedic surgeon (different one that GG is seeing of course). Dr A was wonderful. He explained a bit more about the fracture itself and how it is a twist which is quite common in tibial breaks. He also explained how the fibia helps keep it stable so Roman can start putting weight on that leg again (hooray!). They put on a new cast at a lesser angle so he can actually touch the ground with the ball of his foot. We`ll have this cast (still above the knee to his toes) for three weeks. He'll likely then have a short cast (between the ankle and knee instead of past them) for a further two weeks.

So six weeks total.

check out the cute toe bootie they had for Roman... The only requirement
the dr had is that Roman make a thank you card for the lady that makes them.
How cute is that?

And in case all that hospital fun isn't enough, as I tried to leave home with the kids to take Lauren to her tumbling class, the clutch on the Jeep failed.

Yep. Not one, not two, but THREE mobility breaks in one week.

It was so sad to see my Jeep driving down the driveway on the back of a flatbed. It just wasn't right. Our mechanic is hopeful it is simply a cylinder or something hydrolic. I'm just hope they can get it fixed and back to me today.

Probably an easier fix than Grandma's hip at least!

Traveling circus anyone?

2011-01-18T20:04:00.000-05:00

I'm currently in need of a traveling circus to which I can sell / donate / surreptitiously stash or in some other way contribute my children.

Yes yes unconditional love blah blah blah.

After a day like today I think I could love them a lot more unconditionally if they were, say... with a circus. Surely with Lauren's hyper-extensible joints, she'd be a shoe in for "Cirque du Lamé".

From a psychological perspective I get it. Roman's life is a upside at the moment. He can't do all the things he'd like to as quickly as he used to. He's lost some of his independence but at the same time has gained a lot more Mama attention. Lauren meanwhile has to deal with her loss of Mama time and re-emergence of Roman's dependence (and bad attitude).

I can only suspect that Roman's loss of control of some of the most fundamental things (like going to the bathroom whenever) in a world where control of your life is already someone else's (ie: the teacher's) hands most of the time, makes it even harder to be home and deal with Mama being in even further control than usual.

There was a lot of talking back, bossing of his sister, pushing buttons and yelling (by all of us) that makes me thankful today is over but regretful for the way it went. I even tried to get away for just a moment rather than thoroughly lose my temper over a bathtime rudeness avalanche only to have Mr Attitude freak out even further.

In this instance, it was his "Not Getting It" that drove me over the edge. The "Not Getting" the fact that I am the Mama and I am in charge here. You're having a bath and you're having it my way because I AM the Mama not you....or something to that effect. For that moment I was the epitome of a Screaming Mimi.

We were (thankfully) just coming out of this phase before we adopted Seahawk Blue. Roman was coming home from school much more relaxed, less defiant and generally happier. We could do homework or practice piano or squeeze in bathtime without it becoming a battle of wills. Now we're right back into the thick of things.

Lauren meanwhile is always tired. All day. She sleeps - or is in bed at least - for 12 1/2 hours or more each night, sometimes sleeping in past her wake up light. Within a couple hours she's cranky and "Mama, I so tired". Sleep apnea has come up in association with Noonan Syndrome and I very briefly mentioned it to our ENT last spring or so.

It means the time has come for me to push for a sleep study. I can't say that I notice her stop breathing for 10 or more seconds, which is the clinical observation, but who's to say she doesn't? She snores and her sleep needs have changed. She's been settling herself all night long but that doesn't mean she's actually getting restful, restorative sleep. We see the ENT next week so will start there but will likely need to look at other situations that might cause the same symptoms.

Lauren hasn't had regular naps for over a year and until recently, even when she had horrible nights with gas pains, was still a happy, contented girl all day. Now she's sleeping more AND exhausted. If she'd always been this way I wouldn't be concerned. But it's new. And I am.

Concerned that is.

But NOT concerned enough today to NOT give her to a circus. Please send said circus my way if they're in your neighbourhood.

January Blues - Seahawk Blue in fiberglass that is...

2011-01-14T19:51:00.000-05:00

Phew. What a day. For this we're going to define "day" as a 24 hour period.

It started around 5:45pm yesterday.

Roman had his first skating lesson. They're group lessons offered by the city. Reasonable price, pretty good timing (though could be better but who else has their weekday mornings free but me?) close(ish) to home and, most importantly, he was excited about it.

Roman gets some one on one time with his instructor

Hubby took him to class and said he did amazing - that he saw amazing progression from the start to end of class.Roman could get up by himself by the end and Papa was super proud, and VERY cold.

As the kids were getting off the ice, Roman took a spill. We don't exactly know why or how he fell, all we know is it hurt. The instructor, and Papa thought Roman's screams might have been a bit of drama after a long day and being cold.

By the time they got home, Roman couldn't bear for me to even touch his calf. Knee was okay, foot and ankle were okay, shin bone with a bump, no way. My head is still ringing from the screaming.

Being the mom, and given the gift of intestinal fortitude that must come with estrogen production, I pack up a bag, load a screaming banshee back into the car and head to the local emergency department. If it hurts to move it, it's not a good thing.

We were blessed with a parking spot on the street in front of emerg but I still had to haul my 42 pounder across the street and into the hospital. In true me fashion, I picked the closest doors which were not directly into the emergency department. Argh.

We did, however, get through triage and into the actual treatment area pretty quickly - maybe 30-40 minutes. AB and UL came to help which was the most amazing support we could have. They fed the parking meter for me, brought in that bag of stuff I had packed and AB read book after book to Roman while I talked to doctors or simply tried to breathe without bursting into tears.

For the record, the tears were in response to how much pain my little guy was in. No one should have to scream like that. Ever. To know that it was not going away until it was treated and it hurt like that EVERY time he moved anything was nearly unbearable for me and I expect, any mom.

Sure enough, he'd broken his tibia (that's the front bone on the shin and is the bigger, weight bearing bone). The ER doc seemed like he was pretty recently done his residency. He didn't seem to quite know how to respond to my insistence on more information. I've spent a lot of time with a lot of specialists. I've learned my lessons and I'm not going to let you shluff me off with the simple, "it should be fine with just a cast". Nope. Tell me the whole picture. What's the worst case? How long do I have to wait to hear from the orthopedic surgeon? Will I get to talk to the OS? How long will it take to heal? What about school? What do you mean I have to CARRY him everywhere?

For the record, the guy never did come back with an answer from the nurses about crutches for a 5 year old...

He did however have the most amazing physician's assistant on staff that night who was amazing with both meds, determining what Roman needed and getting that cast on super quick. It's blue.

Some would say Maple Leaf Blue but for our family, it's Seahawk Blue. Way better. As Roman then piped up, "Mama loves the Seahawks" generating the need for me to explain exactly WHO the Seattle Seahawks are. Sorry Seahawks. You just don't have much audience out here in the east.

Start to finish, our hospital trip was about 4 hours. Could've been much MUCH worse. We could've had an incompetent PA. I could've been completely on my own without the calming and supportive presence of AB and we could've had a break needing surgery.

Roman missed school today which was good for all of us. So long as we keep his pain meds boosted and games, legos and Mama on hand, we get through the day. By mid afternoon he was trying to hop (not easy when you're 5 and the leg you would normally use for hopping is the one that's broken...) and okay with trying things on his own. By bedtime he was a wreck and everything started to hurt but after such a traumatic night, who can blame him?

Tomorrow we tackle crutches in anticipate of a return to school on Monday. His teacher is very supportive and, other than not being able to take the bus, I'm sure Roman will appreciate it too. Might really love the attention!

Silly things to be thankful for...

2011-01-12T10:49:00.000-05:00

As I was driving home after dropping Lauren off at preschool this morning, I realized I was feeling pretty thankful and for some rather odd things.

First off being thankful for this mess of snow we're getting. Yes I am Canadian and yes I am quite used to snow and yes I do really prefer my water to be thawed but for whatever reason, the blowing snow and messy roads appeal to me this morning.

Perhaps it's because mess roads often mean the crazies stay home. A valid reason really. For anyone who`s offended and thinks perhaps they`re the crazies I`m talking about, well, you need to stay home.

In addition to the snow, this morning I am thankful for something much more mundane...

wait for it...

my tires.

Yep. That's what I said. Tires.

Snow tires be precise. We purchased a set for the Jeep this fall when one of our existing tires had a hole. If we're going to pay to fix it and we need new tires anyways, it's time to bite the proverbial bullet and shell out for a new set of rubber.

Snow tires, combined with my dad's words to keep the wheels spinning to keep the snow out of the treads has made Ontario winter driving a) easier b) feeling safer and c) really fun.

And I haven't had to use my 4 x 4 yet this winter. Even on our driveway which slopes up into the garage.

In our 5 years of living here, I've had to use the 4 x 4 nearly every time I want to back in - until now. Okay, not in the summer but anyone living here can tell you that's not a lot of days.

So silly as it is, I am thankful for my winter tires.

An the snow to use them in.

Slip slidin' away

2011-01-10T19:55:00.002-05:00

Our dusting of snow last Friday meant we were able to go tobogganing with the kids on Saturday and Sunday afternoon. Just past one of our barns there's a slope. It doesn't look like much in the summer but add a few inches of crunchy snow and it's perfect for a 5 year old and a crazy carpet. The start of the run is steep enough to get speed up followed by just enough space before the driveway to turn and keep going without ripping down so fast you lose your lunch (or an arm or leg in the tree line).

Even Lauren gave it a go "all by myself!" She made it half way down the hill before the crazy carpet spun around once, dumped her off and left her to slide down the hill, on her face, feet first and loving it.

I, meanwhile, had had just about enough. I really do prefer my water sports on open [read: thawed aka liquid aka NOT FROZEN] water.

Sunday, when we went out again, the combination of sun and extra cold resulted in a sled track to rival the olympics. Super fast and really fun.

Of course this fun had to be thwarted as it consistently shot both kids and parents across the lane, into the evergreen trees and almost through the neighbour's fence. Had we gone through the fence, we could've kept sliding right across their property and into the bush but, being the practical type, we did the 'dump-to-brake' maneuver rather than reconstruct fences (and faces).

Hubby put his shovel and dreams of olympic engineering glory to good use building a curved track with banks of snow. By the end of Day Two's adventures, Roman could go whipping down the hill, bank around the curve of piled snow and slide beside the lane - frontwards or backwards - before tumbling into a pile.

No solo slides for Lauren on Day Two but she discovered just how great fresh snow tastes. Already the lessons have begun regarding yellow snow. Being in the country and dogless, there is a lot less yellow snow to be wary off. Instead, it's the joy of 'chocolate chips'* or raisins depending on their freshness...

We do, however, see a lot of amusement parks in our future. Lauren LOVED going down the hill sitting on the carpet infront of Mama or Papa or Roman or any combination thereof. Huge grin every time, snow flying everywhere and inevitably a face full for her especially during a 'dump-to-brake'. Seems we have a daredevil in the family after all.

* chocolate chips in the snow are generous gifts left by our wild rabbit and white tailed deer populations. Love to see the animals, not so sure about the piles they leave behind. I hear it's good for the soil. Now if I could get them to leave it in the garden area instead of the backyard we'd be rockin'!

Following the herd

2011-01-03T14:20:00.001-05:00

It's the time of year when everyone reflects. Many of the blogs I follow have summaries of the year gone by and while I generally strive to go against the flow, this is one area I feel the need to eddy out into.

Looking back on 2010, I have mixed feelings. So many successes to celebrate but, as life always does, so many frustrations and set backs to establish equilibrium.

January and February found us tackling Lauren's dietary issues with a lot of success. It was May before we managed to get our GI on board but we did and have enjoyed so many more sleep filled nights as a result. We've still had a number of occasions where practitioners use the "it's not a trait of Noonan Syndrome" to dismiss our concerns or observations as irrelevant but I'm now so accustomed to it, my spine firms up before we even begin discussions.

Over the summer we had amazing family camping trips, lots of fun in the sun, laughing and exploring with Lauren, button pushing and challenging from Roman and a gradual shift from obnoxious boy to a more gentle, caring brother.

The summer also brought another failed attempt at growth hormone testing for Lauren. Another wasted dawn trip to Mac but a beautiful quiet drive.

Fall introduced us back into the world of school for Roman, now an SK and loving it, and preschool for Lauren. Every morning she would wake us up with "My day Mama??" and each time she finds / creates / gets something new, "take to school Mama?"

Roman has been growing and learning and is stated to be one of the "best readers in the class" by his teacher. He's really coming out of his shell too - more confident and brave in face of new things.

September also brought a surprise in Lauren's eye surgery being scheduled. We didn't expect it before she was 3 years old simply due to the length of the waiting list. We had her pre-op appointment in September and surgery at the end of October. What an amazing change it made to the brightness of her face and eyes.

Before

After

And while the difference is subtle, I joyfully found myself startled at not having thought about her syndrome for a day or two. It wasn't staring me in the face as much and I celebrate it.

December came and with it snow, cold, dreary grey days, the joys of Christmas and some new emotional challenges. We are now in true speech therapy and I am pushed to find ways of incorporating B, P and M into more structured play so Lauren can watch my mouth and imitate. The only way she'll be able to pronounce them better is through Mama lead practice.

We've also been able to finally clear out all the wax build up in Lauren's ears only to have it followed by sinus congestion and her ears full of fluid. We went from the joys of knowing her hearing would be at its best to struggling to communicate and deal with her behaviour because she could hear so little. We also received a call that we've been referred to KidsAbility (which we're already in) for the Infant Hearing Programme because of Lauren's documented hearing loss.

This was a bit of a surprise and a blow to me. There has been a suspected deficiency in her low end hearing but I never considered it something warranting a referral to a programme.

Where I find myself now is stuck between what I know I should be doing for Lauren (which is everything possible) and the fatigue of constantly doing for Lauren. It became most apparent in December after three separate occasions:

First at the pediatrician's office. Lauren had been suffering from a cold and disturbed nights for over a month. We went to make sure the symptoms were still simply those of a virus and not something more significant. As is often the case with our pediatrician, he had a resident spending some time in his office. To be clear, there was nothing wrong with this particular resident and, also as usual, I helped him understand Noonan Syndrome and the implications on my daughter. While her heart was not part of the concerns for the day he asked if he could listen, etc. Then he left to consult with our pediatrician about the recommended course of action for her continuous cold.

Nothing remarkable. Nothing off putting but by the time we left I was tired. Tired of having to explain yet again.

Next incident was an appointment with the endocrinologist. As is NOT usually the case, we were greeted by a resident. This time, as is also NOT usual, I had Roman along. First it took longer than usual to be ushered in. Next it took longer than usual to have Lauren weighed and measured (by someone other than the endo herself which was also NOT usual). Then we had the joy of a new resident, whose only exposure to Noonan Syndrome had been the short stint she spent with the genetics department. At least she'd heard of it.

But then it was time for Lauren's complete medical history. AGAIN. Seriously? Read the freakin' file! Yes we'd had some new developments since our last appointment but only the eye surgery was relevant and only remotely. 40 minutes and many child interruptions later, and we're left waiting for the endocrinologist. When she arrives we go through some of the top level items, quickly review Lauren's current status (which is 5% on the standard chart, up from 3%!) and 50% on the Noonan chart. She's also on the 50% height to weight ratio. So, completely (un)average. But all that took two hours with poor Roman in tow.

The third and final nail was the appointment with the ENT who encouraged us to see our regular audiologist since Lauren's ears were finally wax free. When we arrived home, I just didn't have it in me to make the call and try to schedule in yet another appointment for something we already knew the results of - "inconclusive".

Apparently it takes me about 3 years to become jaded to the sharing of my daughter for medical learning and to be exhausted with driving all over town/Ontario for nothing new.

So, while Lauren's medical improvements (diet, gas pains, eyes) have been sanity saving, the continued need to educate the medical world and subject my perfect little girl to yet another test, poke or prod has counter balanced to provide a medically neutral year.

I'm not a resolutions kinda gal so there won't be any of those. Only hopes for a year that tips the scales towards the positive end instead of simply balanced.

Cause really, who needs balance anyways? It's overrated.