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.
Monday, February 28, 2011
Thursday, February 24, 2011
Syndrome Fatigue
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.
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.
Monday, February 21, 2011
Family Day = Super Quiet
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.
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.
Saturday, February 19, 2011
Happy 3rd Birthday Baby-Doll!
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 |
Saturday, February 12, 2011
Thursday, February 10, 2011
At least 3 more weeks
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!)
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!)
Sunday, February 6, 2011
Thursday, February 3, 2011
Love You BaNana
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"
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"
Subscribe to:
Posts (Atom)