We've been hospital-tastic in the last few weeks (as well as home alone during husband's 10 day business trip) and have new things in and new things out.
Strictly it's two in two out but that doesn't sound as good.
Speech therapy out - he's doing so well we really don't need to be there, never really did actually but because 99% of the kids with 18p- have issues I didn't want to leave it to chance.
Heart out - the pinhole that was found in Nov 08 has gone and the heart is gloriously clinically and physically normal. We don't have a reason for his getting blue lips and cold extremities, but still, a good result is a good result.
Hearing back in - today his hearing test showed a horribly blocked right grommet that needs either cleaning or replacing. So that's an operation, small and insignificant for some kids but because of airway concerns and low muscle tone, not so for him. We're rushing it through before the health insurance runs out (don't get me started!)
Most upsettingly
Kidneys in - I've been monitoring this for sometime since my witchy senses started tingling and I bought some dipstix. We've now had two lots of urine tested, one lot of blood tests and need to deliver more of the former to the hospital and wait for an outpatient appointment with a new paediatrician with knowledge of renal things.
Both D and I feel pretty crappy about this one, like it's not just going to go away like some of the other stuff. I'm in denial about what it could be, pushing it to the back of my mind and resisting too much research until we know more.
Accentuate the positive and all that.
wow, a pretty downbeat post. I've been quiet for so long because this is actually more positive than I've been able to be for sometime.
It'll take me a lot more practice at this to be able to be totally honest as I feel the things I feel.
Thursday, 11 February 2010
Health Insurance Sucks...
...
that really is the truth
the paperwork and bullshit
makes me kind of hit the roof
it really is a travesty
that we're so trapped in fear
so I'm trying not to play along
let's have a huge "hear hear"
that really is the truth
the paperwork and bullshit
makes me kind of hit the roof
it really is a travesty
that we're so trapped in fear
so I'm trying not to play along
let's have a huge "hear hear"
Thursday, 14 January 2010
Oddity Exposure #1 - Clockwise
I made myself giggle at bedtime last week.
You know when you suddenly become aware of your own oddities?
Well my favourite one at the moment is that I seem to operate in a clockwise direction. Even when it's the long way round.
Most nights, I come to bed and read a little to turn off the brain from all the lists and "must-do's" and "haven't done's" and "they said's".
So, reading, pillow piled under my head as I lie on my back, the eyelids get heavy and I throw the magazine down (Sunday Times Magazine or Style in snippets all week long, in case you were wondering).
I get all snuggly and ready to sleep and make my way to my preferred sleeping position - on my front, head turned to the right.
To reiterate, I'm lying on my back, but instead of just turning to my left to get there (ie anticlockwise) I seem to turn to my right and do a kind of flip over to reach the same point (ie clockwise).
I think I've been doing it forever, but now I'm aware, it means I go to sleep giggling a bit every night.
and try as I might, I can't just turn to the left.
oddity exposed...
I thank you
You know when you suddenly become aware of your own oddities?
Well my favourite one at the moment is that I seem to operate in a clockwise direction. Even when it's the long way round.
Most nights, I come to bed and read a little to turn off the brain from all the lists and "must-do's" and "haven't done's" and "they said's".
So, reading, pillow piled under my head as I lie on my back, the eyelids get heavy and I throw the magazine down (Sunday Times Magazine or Style in snippets all week long, in case you were wondering).
I get all snuggly and ready to sleep and make my way to my preferred sleeping position - on my front, head turned to the right.
To reiterate, I'm lying on my back, but instead of just turning to my left to get there (ie anticlockwise) I seem to turn to my right and do a kind of flip over to reach the same point (ie clockwise).
I think I've been doing it forever, but now I'm aware, it means I go to sleep giggling a bit every night.
and try as I might, I can't just turn to the left.
oddity exposed...
I thank you
Thursday, 7 January 2010
Gender stereotypes in play
When I came in from work tonight I read the boys my new story, Lolly the Lamb, and then they asked to write stories too. So, computer on knee, I typed, they created and I helped them to shape as they wove their sweet little tales.
J's was about a boy called Sammy with 11 siblings (add that to the books he chooses at school called Johnny's new baby and you'll see a pattern)and Louis' was about a dinosaur called Jay who liked to go raar.
Then Daddy comes home and within 2 minutes they get tired of storytelling, and the next time I look up, he's in full on wrestling mode with them. Instead of two little boys, we now have ice man and I think spiderman and they are jumping on each other, tops off, full of mini testosterone.
It inevitably goes too far, so Daddy tries to calm them down which takes some time(meanwhile Lhas a little coughing fit and goes off to the loo in case he's sick).
They're now using the toy food and plates to cook pretend yukky things for each other, and cakes, and having a lovely time navigating between our male and female playing, and I've come in here to quickly post this blog.
J's was about a boy called Sammy with 11 siblings (add that to the books he chooses at school called Johnny's new baby and you'll see a pattern)and Louis' was about a dinosaur called Jay who liked to go raar.
Then Daddy comes home and within 2 minutes they get tired of storytelling, and the next time I look up, he's in full on wrestling mode with them. Instead of two little boys, we now have ice man and I think spiderman and they are jumping on each other, tops off, full of mini testosterone.
It inevitably goes too far, so Daddy tries to calm them down which takes some time(meanwhile Lhas a little coughing fit and goes off to the loo in case he's sick).
They're now using the toy food and plates to cook pretend yukky things for each other, and cakes, and having a lovely time navigating between our male and female playing, and I've come in here to quickly post this blog.
Wednesday, 6 January 2010
snow day January 6th 2010
I know it's inconvenient when it snows.
when you can't get to work
when schools shut early or don't open at all
when deliveries don't come
when the car won't move
but I love it love it love it. even when it's iced over tomorrow and I struggle into the office, I'll be thinking of that special kind of red on my boys cheeks. the satisfaction of putting food out for the birds and the strange lunchbox contraption underneath that put off the big greedy pigeons. the snuggled up under a blanket with my slippers on, working, emailing, hearing the kids play and licencing myself to eat eat eat because we have to store up the fat.
thank you for this day
when you can't get to work
when schools shut early or don't open at all
when deliveries don't come
when the car won't move
but I love it love it love it. even when it's iced over tomorrow and I struggle into the office, I'll be thinking of that special kind of red on my boys cheeks. the satisfaction of putting food out for the birds and the strange lunchbox contraption underneath that put off the big greedy pigeons. the snuggled up under a blanket with my slippers on, working, emailing, hearing the kids play and licencing myself to eat eat eat because we have to store up the fat.
thank you for this day
Exclusions
Imagine if you will. we get a diagnosis for our little man. a rare genetic disorder, very little known about it blah blah blah. we fall into the system, learning our way, only dipping out to pay for consultants when we need to see the same person each time. and all along the way we don't know what is just L, what is 18p deletion and what is specific complaints unrelated to anything. all the eminent people we talk to are clear on that point.
The health insurance companies however are perfectly clear on what they think. they will happily insure us with a family policy, as long as we don't expect the little one to be covered. apparently he's not part of this family policy. his diagnosis means he's not allowed whatever we all are.
now we know how lucky we are to have the NHS in this country and we treasure it and do not abuse it. but it's almost unfathomable in its density of how to get what you need, who to ask, what's available...especially for something so rare and on the whole not life threatening most of the time. I reserve the right to try to ease the system on the NHS and take advantage of our private cover to see the same paediatrician every time, to have someone who knows everything we know and can add their experience to it. not to have to start from scratch every single appointment.
if they exclude my son, then I don't want to be part of what they are selling. I want to stop living in fear and that's exactly what Insurance is. selling fear to people scared of what may happen. but it's not just for me this problem lies.
So beware, because if you become ill you will long for a diagnosis, and medical science means we're so much better at getting those answers and labels. in fact without those diagnoses you often won't get what you need in treatment and support. But when that label comes, you are suddenly moved out of normal society for ever in the world of insurance. If it's on your records, anywhere, written down, diabetes, genetic disorder, cancer, anything that won't just go away, you move sideways. for good.
I don't want a policy that doesn't want my baby. I don't want anything that tells him that he's not allowed what everyone else can have. that's the one thing I want to teach him and am determined to teach to everyone around us.
The health insurance companies however are perfectly clear on what they think. they will happily insure us with a family policy, as long as we don't expect the little one to be covered. apparently he's not part of this family policy. his diagnosis means he's not allowed whatever we all are.
now we know how lucky we are to have the NHS in this country and we treasure it and do not abuse it. but it's almost unfathomable in its density of how to get what you need, who to ask, what's available...especially for something so rare and on the whole not life threatening most of the time. I reserve the right to try to ease the system on the NHS and take advantage of our private cover to see the same paediatrician every time, to have someone who knows everything we know and can add their experience to it. not to have to start from scratch every single appointment.
if they exclude my son, then I don't want to be part of what they are selling. I want to stop living in fear and that's exactly what Insurance is. selling fear to people scared of what may happen. but it's not just for me this problem lies.
So beware, because if you become ill you will long for a diagnosis, and medical science means we're so much better at getting those answers and labels. in fact without those diagnoses you often won't get what you need in treatment and support. But when that label comes, you are suddenly moved out of normal society for ever in the world of insurance. If it's on your records, anywhere, written down, diabetes, genetic disorder, cancer, anything that won't just go away, you move sideways. for good.
I don't want a policy that doesn't want my baby. I don't want anything that tells him that he's not allowed what everyone else can have. that's the one thing I want to teach him and am determined to teach to everyone around us.
Sunday, 27 December 2009
November December
Here's what's been going on with the little man:
The govt has decided he(and other little kids) can't have the second half of the swine flu vaccine but they can't guarantee that half a dose is sufficient
Husband has left job with best health insurance policy in the world so we've got the clock ticking on getting the cardio consultation etc in the diary and I have to work out how we do all we have to do without sneaking out to the private sector every now and then to help move things along.
He's still intermittently blue and we've got renal tests in the pipeline, but on the whole he's fabulous, talking, learning, running around and being gorgeous
Here's what's been going on with the big little one:
he's loved his first term at Reception and is trying to work out who he is and how naughty feels every now and then.
He and his classmates are testing the wonderful Moss Hall Infant School with their presence, simply by having been forced on them. But the school are amazing, the relief of the parents in our class is palpable and as a result I've named us "the gratefuls", because we really are!
He's also pretty obsessed with death and dying and questions about that. D wondered if I talked too openly about my late Daddy and the great aunt who popped off last year. I think he's just a sensitive inquisitive perfectly normal little 5 year old.
Here's what's been going on with the big man:
He's finally left the safe job. The job that helped us begin to dig ourselves out of the hole that the most expensive year of our lives, followed by the life changing diagnosis of our magic man, helped us fall into.
He is, I believe, about to finally achieve his potential, something that I have always known is out there for him to take.
He asked me why I was alright about this, obviously thinking back a few years to other job and house and money related conversations around the kitchen table. I don't know why, but everything feels back on the right path. Like we've been down and fighting for so long that I'm no longer scared of whether and how we'll cope. And secretly, I feel a bit optimistic that we might be on our way into a nice new phase for our family.
Here's what's been going on with me:
I had an amazing trip to New York, booked to my complete surprise by hubby. I shared my time between the lives of my darling friends C and N and was spoiled rotten. Most importantly, I lived according what I wanted to do for a whole 4 days, not what was needed of me. I floated through the time change and the space and it was just what I needed, without even knowing I needed it.
I'm mulling subconsciously on the new kids stories for our Marble Books and beginning to flex my literary muscles again.
And I'm at home coming to the end of the first of my two weeks off for Crimble.
I am loving being with my kids, loving seeing my D, loving not being ruled by obligation, loving cooking, hanging out in the mornings not in a rush, recharging, cuddling, playing, drawing...and I'm very very thankful for this time indeed.
The govt has decided he(and other little kids) can't have the second half of the swine flu vaccine but they can't guarantee that half a dose is sufficient
Husband has left job with best health insurance policy in the world so we've got the clock ticking on getting the cardio consultation etc in the diary and I have to work out how we do all we have to do without sneaking out to the private sector every now and then to help move things along.
He's still intermittently blue and we've got renal tests in the pipeline, but on the whole he's fabulous, talking, learning, running around and being gorgeous
Here's what's been going on with the big little one:
he's loved his first term at Reception and is trying to work out who he is and how naughty feels every now and then.
He and his classmates are testing the wonderful Moss Hall Infant School with their presence, simply by having been forced on them. But the school are amazing, the relief of the parents in our class is palpable and as a result I've named us "the gratefuls", because we really are!
He's also pretty obsessed with death and dying and questions about that. D wondered if I talked too openly about my late Daddy and the great aunt who popped off last year. I think he's just a sensitive inquisitive perfectly normal little 5 year old.
Here's what's been going on with the big man:
He's finally left the safe job. The job that helped us begin to dig ourselves out of the hole that the most expensive year of our lives, followed by the life changing diagnosis of our magic man, helped us fall into.
He is, I believe, about to finally achieve his potential, something that I have always known is out there for him to take.
He asked me why I was alright about this, obviously thinking back a few years to other job and house and money related conversations around the kitchen table. I don't know why, but everything feels back on the right path. Like we've been down and fighting for so long that I'm no longer scared of whether and how we'll cope. And secretly, I feel a bit optimistic that we might be on our way into a nice new phase for our family.
Here's what's been going on with me:
I had an amazing trip to New York, booked to my complete surprise by hubby. I shared my time between the lives of my darling friends C and N and was spoiled rotten. Most importantly, I lived according what I wanted to do for a whole 4 days, not what was needed of me. I floated through the time change and the space and it was just what I needed, without even knowing I needed it.
I'm mulling subconsciously on the new kids stories for our Marble Books and beginning to flex my literary muscles again.
And I'm at home coming to the end of the first of my two weeks off for Crimble.
I am loving being with my kids, loving seeing my D, loving not being ruled by obligation, loving cooking, hanging out in the mornings not in a rush, recharging, cuddling, playing, drawing...and I'm very very thankful for this time indeed.
Subscribe to:
Posts (Atom)