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.
Noonan Syndrome is a genetic condition affecting physical appearance, the heart, growth and sometimes, cognitive development. NS occurs in 1:1000 - 1:2500 births. Lauren's genetic variation has never been recorded before and is a spontaneous genetic shift as neither parent carries this change.
It affects her physically and the rest of us by proxy. These are the tales from our family.
Tuesday, October 25, 2011
Sunday, October 23, 2011
Our life in pictures
October, so far, as seen through the camera:
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| Thanksgiving at Oma and Opa's included a trip to friends' farm with Tante Moosie |
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| Nose to nose |
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| 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. |
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| Roman at choir rehearsal for our church children`s Christmas musical |
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| Roman's maison hantée. Inside each window is a drawing of the things listed: A cat, a mummy, the moon and a dog. |
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| 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. |
Tuesday, October 18, 2011
School news (aka: oh crap..)
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!
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!
Sunday, October 16, 2011
Dinner with the kids
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.
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.
Thursday, October 13, 2011
So many rants, so little time
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.
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.
Friday, October 7, 2011
Night Time Routine
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.
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.
Wednesday, October 5, 2011
Random Snippets and the Rogers Taping
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!
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!
Sunday, October 2, 2011
Statistically Insignificant
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.
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.
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