Here we are, lots of thoughts percolating round in my head, lots of jobs I ought to be doing - all pretty ordinary!
A couple of weeks ago N turned 9. He still has a couple of weeks until his due date 'birthday'.
I commented to the GP when we were there for our monthly weight/height check that it amazes me some times that he's actually survived this long.
This point in the year is full of milestones/anniversaries call them what you will. Events which changed things and quite possibly haunt me with their ripples echoing through the years.
We have N's birthday and due date in Jan/Feb.
We have T's birthday and due date in April/May.
We have W's birthday and due date in June and July.
Thrown in for good measure we have T's first hospitalisation with feeding problems in July and then his second one in August and a bit later where everything went totally pear shaped for us with the docs.
That is definitely a milestone which shaped, changed and haunts me.
In amongst all of this today is exactly 2 months since W's reflux surgery.
Exactly 2 months since we became a totally reflux free household.
W has made so many advances in that time - he is eating completely normally - incl fizzy drink!
He hasn't had a dizzy spell since surgery so that was clearly due to the reflux as he was having a dizzy/cardiac event once ever couple of weeks at the best.
His asthma preventer medication dose has been able to be halved.
The snoring has stopped and he can sleep completely flat.
He has commented with great joy that he can now drink orange juice and fizzy drink without it burning. We were unaware he had been experiencing so much on-going and regular pain with normal activity and that does make me very sad.
On the 3rd of Feb we will mark another milestone.
T will have been reflux free for a full year. The 3rd of Feb 2009 was when he had his fundoplication and g-tube surgery. In many ways it is also another birthday for him.
In this time he has learnt to eat and enjoy eating - although that is still very much a work in progress.
His development has blossomed.
His energy levels and so our freedom as a family have increased dramatically. P and I kept looking at each other over the summer break and marvelling at what events we could get involved with as a family that would have been completely impossible last year.
His growth has gone from under the 1st centile to between the 5th and 10th.
However the 1 year milestone is also cause for reflection.
I had mentally prepared myself for him to have the tube in place for a year. In telling people that I was imagining not using it for around 3 months before removing it a year after it went in.
T is a long way from that magic moment.
He has gained 500g each month for the past two months. Every month he gains I decrease his total volume of formula by 50mls. Maybe not much but he was getting 900mls over a 24 hour period about 4 months ago and he's now getting a total of 750mls over a 24 hour period.
So those weight gains are being sustained by his oral intake and that's the name of the game.
After all he, and we, have been through I am not prepared to compromise his progress - nutritionally or developmentally just because some one else is in a hurry. It will take as long as it takes and in the meantime we will continue as we are - broken nights, tubing to scrub and sterilise, formula to make up and all.
I am still planning on having the tube in place for around 3 months without using it to be sure he's maintaining growth, development and eating - and that he can sustain it all through an illness or two. Pulling the tube and then discovering we weren't quite there yet means either going backwards quite fast - or another surgery to put it back in. I'm not playing either of those games.
So it is a bitter sweet milestone. I am sad we haven't achieved what I had hoped and sad it's another missed milestone. I'm watching T and seeing developmental signs he isn't where he should be either - not just in speech but other areas and wondering where, what impacts and how we're going to work on it all.
I'm still hoping that this time NEXT year we'll be pulling the button. After all it did take us two years to get W eating without supports.
We do talk about life without the pump, T knows about and is desperately keen to have his "I can eat/Bye Bye pump" party. We will get there.
The children's birthdays are always a moment when I reflect on the path prematurity has taken us, what it's given us - and what it's taken away.
I know I have developed strengths and interests I would never have if they had been 'normal', full term and uncomplicated children. But their and our lives have been made much more difficult, and the children will carry the effects all their lives. We don't even really know to what extent T will carry it but can be sure that there are effects - largely in his language difficulties.
I have seen more research today talking about long term health issues in prematurely born children so there are other land mines ticking in our path and I don't know how exactly to step around them.
So many milestones, so many events - in the past and to come. Such a roller coaster ride.
But in a way, to recognise and enjoy the highs, you have to have experienced and understood the lows.
There are so many things I will never take for granted again. So many small rays of sunshine you have to learn how to grasp with both hands and pull towards you to illuminate the way through the next cave.
But the biggest thing I hope I never take for granted is my wonderful, strong, inspiring children.
Our on-going saga with life with 3 prematurely born boys. The fun doesn't end at the NICU door, even for 'late' preemies.
Monday, February 1, 2010
Wednesday, January 20, 2010
N is 9
Or nearly anyway!
9 years ago today I was re-admitted to hospital (N had a decent try at arriving at 25 weeks but we thankfully pulled back from that one!) and wound up having him by emergency c-section on the 22nd of Jan.
He did his NICU time as he decided breathing was an optional extra but came home with me, tiny, still very much a prem but bigger than W was, by about 400g.
Reflux hit by 2 weeks old (still not due date) and of course cast it's shadow over the ensuing years.
To a certain extent reflux's pall continues to be cast over him due to his eating problems. I have no idea where his eating is going to take us this year but something has to change with that.
We have a psychologist who specilizes in ADHD and who can enlist some help with it. Failing that, I don't know what else we can do. P keeps talking tube and my heart just sinks.
But over the past 9 years N has lead us a very merry dance - he seems to have a 3 yearly cycle of major or potentially major accidents or events. 6 months old was a vicious tangle with croup which saw us ping ponging between ICU and the ward and with him nearly on a ventilator, 3 years old was a major concussion which took him nearly 3 months to bounce back from, nearly 6 was swallowing a magnetic metal ball - and nearly a magnetic bar with it. If he'd swallowed both then he'd have earnt himself a quick trip to theatre but instead all he earnt was 2 trips to the doctor, a trip to ED and an amazing looking x-ray with the ball as clear as day sitting at the bottom of his stomach! I'm hoping that the 9 or nearly 9 adventure was the 8 staples to his head in the middle of last year!
He has needed physio for gross motor development, on going optometrist involvement - first pair of glasses before age 2, dietician involvement over the years from under 6 months and in 2007 an SLT with feeding 'experience' - she didn't really have any ideas on how to manage him, had various specialist time put in to dx the ADHD and tinker with meds and behaviour and of course the reflux and the surgery.
These days he is still followed by - the optometrist (sort of - yearly checks when his glasses break!), - the GP for scripts for ADHD meds and weight checks each month, - the paediatrician - ADHD management and eating and growth issues, - a psychologist who is helping with ADHD behavioural management and hopefully eating!
The relentless round of appointments waxes and wanes but it never disappears completely.
Yet, despite all of this and the fact that he can be difficult to handle at times I am impressed with the caring, intelligent and thoughtful person he is. He's dynamic, busy, loud and bubbly, everyone knows if he's in the room or house even but he takes so much out of life and throws his all into everything he does - even tantrums!
There are times when I wonder if he'll manage to see another birthday with his reckless and crazy stunts but over all I can't wait to see what he does with his life and who he becomes. One thing's for sure - whatever he does it's going to be with maximum impact, splash and vibrancy!
Happy Birthday Nicholas!
9 years ago today I was re-admitted to hospital (N had a decent try at arriving at 25 weeks but we thankfully pulled back from that one!) and wound up having him by emergency c-section on the 22nd of Jan.
He did his NICU time as he decided breathing was an optional extra but came home with me, tiny, still very much a prem but bigger than W was, by about 400g.
Reflux hit by 2 weeks old (still not due date) and of course cast it's shadow over the ensuing years.
To a certain extent reflux's pall continues to be cast over him due to his eating problems. I have no idea where his eating is going to take us this year but something has to change with that.
We have a psychologist who specilizes in ADHD and who can enlist some help with it. Failing that, I don't know what else we can do. P keeps talking tube and my heart just sinks.
But over the past 9 years N has lead us a very merry dance - he seems to have a 3 yearly cycle of major or potentially major accidents or events. 6 months old was a vicious tangle with croup which saw us ping ponging between ICU and the ward and with him nearly on a ventilator, 3 years old was a major concussion which took him nearly 3 months to bounce back from, nearly 6 was swallowing a magnetic metal ball - and nearly a magnetic bar with it. If he'd swallowed both then he'd have earnt himself a quick trip to theatre but instead all he earnt was 2 trips to the doctor, a trip to ED and an amazing looking x-ray with the ball as clear as day sitting at the bottom of his stomach! I'm hoping that the 9 or nearly 9 adventure was the 8 staples to his head in the middle of last year!
He has needed physio for gross motor development, on going optometrist involvement - first pair of glasses before age 2, dietician involvement over the years from under 6 months and in 2007 an SLT with feeding 'experience' - she didn't really have any ideas on how to manage him, had various specialist time put in to dx the ADHD and tinker with meds and behaviour and of course the reflux and the surgery.
These days he is still followed by - the optometrist (sort of - yearly checks when his glasses break!), - the GP for scripts for ADHD meds and weight checks each month, - the paediatrician - ADHD management and eating and growth issues, - a psychologist who is helping with ADHD behavioural management and hopefully eating!
The relentless round of appointments waxes and wanes but it never disappears completely.
Yet, despite all of this and the fact that he can be difficult to handle at times I am impressed with the caring, intelligent and thoughtful person he is. He's dynamic, busy, loud and bubbly, everyone knows if he's in the room or house even but he takes so much out of life and throws his all into everything he does - even tantrums!
There are times when I wonder if he'll manage to see another birthday with his reckless and crazy stunts but over all I can't wait to see what he does with his life and who he becomes. One thing's for sure - whatever he does it's going to be with maximum impact, splash and vibrancy!
Happy Birthday Nicholas!
Thursday, January 7, 2010
New Year New Direction?
Happy New Year - yes I know I'm late!
Goodbye and good riddance to 2009 - roll on 2010 and may you bring only good things!
As for a new direction, um, probably not. Except we are a reflux-free household now.
I haven't updated here since W's surgery so I'll cut and paste that one shortly. As per usual for our kids it was not as straightforward as it ought to have been.
But W is doing a remarkable recovery. He is now 5 weeks and nearly 3 days post op. On Monday he very carefully ate a roast dinner with no mashing or pureeing.
He also mastered eating chippies again. He's been able to eat rice for nearly a week and yesterday he managed toast with his scrambled eggs.
He has lost weight but I think he's also grown again - he's all arms and legs and angular - like that leggy pre-schooler stage.
The surgery experience Round 3 -
Goodbye and good riddance to 2009 - roll on 2010 and may you bring only good things!
As for a new direction, um, probably not. Except we are a reflux-free household now.
I haven't updated here since W's surgery so I'll cut and paste that one shortly. As per usual for our kids it was not as straightforward as it ought to have been.
But W is doing a remarkable recovery. He is now 5 weeks and nearly 3 days post op. On Monday he very carefully ate a roast dinner with no mashing or pureeing.
He also mastered eating chippies again. He's been able to eat rice for nearly a week and yesterday he managed toast with his scrambled eggs.
He has lost weight but I think he's also grown again - he's all arms and legs and angular - like that leggy pre-schooler stage.
The surgery experience Round 3 -
Hi All,
We're finally home!
He had a pre-med which made him really loopy - "Ohhh Mummy, why have I got 20 fingers???" Really funny and he was so happy and relaxed going into theatre. But sad he has no recollection of it as apparently the theatre he was in has the most advanced technology in the world for laparoscopic surgery - nowhere has better acc to a very proud surgeon showing us all the screens etc.
The surgeon had offered to do a dvd of the surgery for W (as they have the capability in this theatre) and after some thought W decided that'd be cool. Unfortunately the high tech space age theatre had a small glitch and the recorder didn't work. As I said to the surgeon I'd rather than not to work than anything else! But they did use the digital camera and took photos of the theatre and the surgery - interesting in a warped sort of way.
Anyway, surgery took 2 long hours and the surgeon came back and said not only did W really need that but he never wants to operate on one of our kids again as they have all been much worse than the tests indicated. Apparently the oesophagus had shortened due to long term acid exposure, the stomach had adhered to it, the oesophagus had adhered to his diaphragm and so he had to separate all of that before he could do the surgery - he described W's oesophagus as like concrete and it was tricker than he'd anticipated.
W spent 3 hours 15 mins in recovery due to being doped out of his mind, slow to wake with pretty low O2 sats - down in the 68 - 75% range - on 2 litres of O2.
So he spent the whole first night on O2 which was a bit of a worry.
Second night the wretched IV tissued and he point blank refused to let them put a new one in but that cut his morphine as well as fluids - and he didn't want to drink and was in a lot of pain.
The other two had come home on the third day and I was expecting W to do the same - iv out, O2 off, drinking etc. But his pain levels went through the roof and there was no way he was going anywhere. The surgeon came by twice that day and he was even re-visited by the anaesthetist twice. They finally found a opiate based pain med in a liquid form - someone had charted tablets...but he was also prepped for another iv line.
Thankfully he didn't need that and wound up only needing the new med twice - oxycodon.
It was also taking both a nurse and myself to get him out of bed just to go to the loo so there was no way I could take him home.
But by about 3:30 that afternoon I was getting some quick grins and the odd chuckle while he watched cartoons so I knew he was on the way back again. By the evening he was occasionally getting smart with me and managing a supported walk down the corridor.
So we got to go home today - around 11:30. He's in quite a lot of pain still but I think I can manage it better at home than they could because he only had paracetamol charted or the other strong drug they didn't really want to keep giving to him. They did try voltaren by suppository...but he was exceedingly unhappy with that! I'm alternating ibuprophen and paracetamol so he's getting something every three hours and that seems to manage it better than 6 hourly paracetamol!
He's struggling with eating - big triumph today was finishing one of those tiny cans of peach, apricot and semolina!
He's walking around hunched over like an old man but I've told him he needs to straighten up by Sunday - the surgeon also goes to our church and has said he'll see how he is on Sunday...lol!
W's insisting on going to church because he's in the Children's Christmas play and it's the last rehearsal then - and if he doesn't make it then N is his understudy.....
So it's going to be a longish road, but we expected that. It's clear now just how badly he needed the surgery. It's almost certain he'd have had major complications if it had gone on much longer and almost certainly have developed oesophageal cancer in his early middle age - and that doesn't have a good survival rate.
He's in more pain than the other two were I think - sleep deprived haze here - hourly wakings on Tues night to suction his ng tube but he was awake more often in pain or feeling like he was going to throw up, about 4 hourly - but more often due to pain on Wed night and then he slept better last night although he was restless - I think pain - but I didn't!
But the pain levels would make sense because of the extra work the surgeon had to do.
It seems that definitely T and W have been saved from the almost certainty of cancer thanks to the surgery and probably N as well - N was probably in the best state of the three and even he had some oesophageal adhesions and some slight inflammation. W's was so bad he even bled more than expected. T of course had an ulcerated oesophagus.
Poor poor kids.
I just feel so terribly terribly guilty. I should never have let him go untreated as much as I did. Each time before he went back onto meds he'd been complaining for a good few months and I buried my head in the sand. This time round he should have gone onto meds again probably a good year before he did but I was sooo tied up in T and then so adamant that T's surgery was the end of reflux in the house that I just couldn't bear to think about W. The pain he must have been in, even the surgeon's instructions to the nurses were to take any complaints from him seriously because he'll have a very high pain threshold from being in considerable pain for the past few YEARS.
Really, the kid should have had this surgery at about 18 months old.
Anyway, it's DONE and we're home!
There are times and W's surgery was one of them that I wish I didn't know as much as I do, reading some of the monitors etc. I just kept reminding myself of the NICU lesson we were taught - watch the baby not the monitors! It might show no heart beat but if the baby's pink and moving it's probably just a loose lead.
I was concerned about his low O2 levels but his lips were pinkish and fingerbeds looked okay and he could be roused reasonably - I pulled the mean mother trick and told him T was in his room playing with his toys and his levels picked right up and he lifted his whole head off the pillow!
So this year we continue boxing along with N's eating, T's eating, T's speech, N's behaviour etc.
However at least we do seem to have a few things off the alert list - W's snoring has completely stopped since his surgery. He now lies totally flat to sleep on one pillow only - the first time in his life to do so. And his cardiac issues have not happened again since his surgery so we may have solved that one too.
So that gives me head space to pursue the other two's issues in more detail, and to push P into doing something about his foot he hurt a couple of years ago - remember the nail incident anyone? It's still giving him pain and he really needs to go back to the specialist.
So that's our little road map for the time being!
Wishing all a good 2010.
Tuesday, November 17, 2009
Just a mum?
Thoughts which percolate frequently round my head and have come to the forefront as I vacuumed the floor - amazing when you find a moment to think!
I had a slightly flippant conversation with someone recently about the amount of exercise you should have each day. We all know the 30 mins a day thing but some new research came out saying that in fact that does nothing for most in terms of weight loss and you'd be better off just watching what you eat. Anyway his comment was "You spend too much time reading the internet, don't believe everything you see on Wikipaedia." The implication, not stated, but implied and stated in the past from this person is along the line of mums at home = brain atrophy. Exaggeration but we all know the public perception.
Just as a starting point I DON'T use Wikipaedia -I'm fully aware that anyone can add anything to that and it's NOT a reliable source of information. I won't even let the kids use it.
But I've been thinking again (see, got to be sure that brain doesn't atrophy after all!) and the perception that mothers in general, but mothers at home in particular, loose some edge, some brain power and certainly loose regard and aren't taken as seriously really bugs.
Rather than getting mad - and vacuuming harder to get the playdoh out - I was wondering why and where this perception has come from.
Is it in part a social overhang, from the days when women did fairly minor jobs, marking time until they got married, had kids and dropped out of the working world?
Yes, probably.
But I wonder how much of it is because of the perceived lack of importance of raising children. See, I don't say child care or even caring for children. I, we, are raising the next generation of citizens. These kids, a perceived waste of our time are actually going to pay your superannuation people, with their work and taxes. There is an economic value to these little units - if you have to reduce it down to that. And so raising them well, so they produce returns not cost (health, prisons etc) should be valued.
So why isn't it?
Maybe people feel uncomfortable about regarding actual human beings as economic units.
But aren't we doing that already in health (deciding who gets what care when) , in education (EFTS), social welfare (deciding on amounts that someone can manage on in terms of a benefit)?
Why not put a value on parenting, on what good, hands on parenting can add to our little units?
If we can contemplate performance pay for teachers why not at least say - to be an available parent to your child it costs you $x on average. So in recognition of that we'll contribute $y.
But we, as mothers (and fathers who stay at home with their children) put ourselves down and don't value ourselves either.
Oh, I'm just a mother, Mummybrain, I'm barely functioning etc.
Caring for children and most often doing it in conjunction with running a household is an intricate dance with many many skills required. Often, especially in the early days of a child's life we are expected to do it on very little sleep - hence the Mummybrain and so on.
In fact most people would NEVER be expected to do any of these complicated tasks on so few hours sleep - and we put ourselves down for forgetting 2 out of 20 items at the supermarket.
On my own case, and what's sparked this off really, was considering what I actually do do within each day and each week. Do I use my brain? Am I just sheltering from the world and vegetating?
Do I actually deserve the scorn which is so often poured down - and like many stay at home mothers - some of that scorn is poured from working mothers who are regarded as more productive economic units than those of us at home.
So - I do use my critical thinking skills - evaluating not only the day to day nutrition of my household, but also in my own particular case - evaluating advice, information and plotting the path forwards for each of my little units.
We all do this with our kids but with kids like mine it's a more involved path.
My conversation partner at the top of this suggested I was reading the most easily accessible information available without evaluating where it had come from.
Those of us with more complicated little units don't find the information easily at hand to help them. Depending on what's going on at the time I spend a certain amount of time each week reading, evaluating and researching. I consider where information has come from and how reliable it is. Recent extensive research has centred around long term outcomes for the kids' surgery, long term side effects of some of their medication and the outcomes from the kind of speech therapy T is currently receiving.
Always on-going research is on the topics of Asperger's, ADHD and feeding programs and approaches for feeding difficulties. I get brief updates from the NEJM, medscape is a web link in my bookmarks. If I google a specific topic it's usually through Google Scholar.
And why do we have to put these kinds of hours in? In part because we're regarded as 'just mums at home'. We get patted on the head and told this is the best way to approach our child's issue, or told (as I was about 6 months ago) that there are no long term side effects for children on a particular medication, only for adults. Um, yeah, my brain's not that far gone that I believe that one!
I co-ordinate appointments with at least 2 different professionals on a weekly basis, I keep records of where we're at and who said they'd do what for which kid. I monitor medical supplies (as well as coffee) and ensure we don't run out. I continue to ward off issues related to Asperger's, I try and mitigate the effects and interpret the world to W. Most importantly I try to teach him how I know these things so that one day I might do myself mostly out of a job.
I do speech therapy sessions - not just in set moments - but also monitoring and re-directing speech on a constant basis. I monitor, re-direct and teach compensatory tactics for the effects of ADHD. This is in addition to all the normal, intricate balances of running a household and raising my children.
I am a professional mother.
It's time being a mother was regarded as a profession not 'just a mother'.
Let's ask - and expect - to be treated in the same way as another professional would be.
Next time you are asked what do you do let's be proud of our occupations. We are professional mothers nurturing, raising and adding infinate amounts of 'added value' our the next generation.
I had a slightly flippant conversation with someone recently about the amount of exercise you should have each day. We all know the 30 mins a day thing but some new research came out saying that in fact that does nothing for most in terms of weight loss and you'd be better off just watching what you eat. Anyway his comment was "You spend too much time reading the internet, don't believe everything you see on Wikipaedia." The implication, not stated, but implied and stated in the past from this person is along the line of mums at home = brain atrophy. Exaggeration but we all know the public perception.
Just as a starting point I DON'T use Wikipaedia -I'm fully aware that anyone can add anything to that and it's NOT a reliable source of information. I won't even let the kids use it.
But I've been thinking again (see, got to be sure that brain doesn't atrophy after all!) and the perception that mothers in general, but mothers at home in particular, loose some edge, some brain power and certainly loose regard and aren't taken as seriously really bugs.
Rather than getting mad - and vacuuming harder to get the playdoh out - I was wondering why and where this perception has come from.
Is it in part a social overhang, from the days when women did fairly minor jobs, marking time until they got married, had kids and dropped out of the working world?
Yes, probably.
But I wonder how much of it is because of the perceived lack of importance of raising children. See, I don't say child care or even caring for children. I, we, are raising the next generation of citizens. These kids, a perceived waste of our time are actually going to pay your superannuation people, with their work and taxes. There is an economic value to these little units - if you have to reduce it down to that. And so raising them well, so they produce returns not cost (health, prisons etc) should be valued.
So why isn't it?
Maybe people feel uncomfortable about regarding actual human beings as economic units.
But aren't we doing that already in health (deciding who gets what care when) , in education (EFTS), social welfare (deciding on amounts that someone can manage on in terms of a benefit)?
Why not put a value on parenting, on what good, hands on parenting can add to our little units?
If we can contemplate performance pay for teachers why not at least say - to be an available parent to your child it costs you $x on average. So in recognition of that we'll contribute $y.
But we, as mothers (and fathers who stay at home with their children) put ourselves down and don't value ourselves either.
Oh, I'm just a mother, Mummybrain, I'm barely functioning etc.
Caring for children and most often doing it in conjunction with running a household is an intricate dance with many many skills required. Often, especially in the early days of a child's life we are expected to do it on very little sleep - hence the Mummybrain and so on.
In fact most people would NEVER be expected to do any of these complicated tasks on so few hours sleep - and we put ourselves down for forgetting 2 out of 20 items at the supermarket.
On my own case, and what's sparked this off really, was considering what I actually do do within each day and each week. Do I use my brain? Am I just sheltering from the world and vegetating?
Do I actually deserve the scorn which is so often poured down - and like many stay at home mothers - some of that scorn is poured from working mothers who are regarded as more productive economic units than those of us at home.
So - I do use my critical thinking skills - evaluating not only the day to day nutrition of my household, but also in my own particular case - evaluating advice, information and plotting the path forwards for each of my little units.
We all do this with our kids but with kids like mine it's a more involved path.
My conversation partner at the top of this suggested I was reading the most easily accessible information available without evaluating where it had come from.
Those of us with more complicated little units don't find the information easily at hand to help them. Depending on what's going on at the time I spend a certain amount of time each week reading, evaluating and researching. I consider where information has come from and how reliable it is. Recent extensive research has centred around long term outcomes for the kids' surgery, long term side effects of some of their medication and the outcomes from the kind of speech therapy T is currently receiving.
Always on-going research is on the topics of Asperger's, ADHD and feeding programs and approaches for feeding difficulties. I get brief updates from the NEJM, medscape is a web link in my bookmarks. If I google a specific topic it's usually through Google Scholar.
And why do we have to put these kinds of hours in? In part because we're regarded as 'just mums at home'. We get patted on the head and told this is the best way to approach our child's issue, or told (as I was about 6 months ago) that there are no long term side effects for children on a particular medication, only for adults. Um, yeah, my brain's not that far gone that I believe that one!
I co-ordinate appointments with at least 2 different professionals on a weekly basis, I keep records of where we're at and who said they'd do what for which kid. I monitor medical supplies (as well as coffee) and ensure we don't run out. I continue to ward off issues related to Asperger's, I try and mitigate the effects and interpret the world to W. Most importantly I try to teach him how I know these things so that one day I might do myself mostly out of a job.
I do speech therapy sessions - not just in set moments - but also monitoring and re-directing speech on a constant basis. I monitor, re-direct and teach compensatory tactics for the effects of ADHD. This is in addition to all the normal, intricate balances of running a household and raising my children.
I am a professional mother.
It's time being a mother was regarded as a profession not 'just a mother'.
Let's ask - and expect - to be treated in the same way as another professional would be.
Next time you are asked what do you do let's be proud of our occupations. We are professional mothers nurturing, raising and adding infinate amounts of 'added value' our the next generation.
Monday, November 16, 2009
A Reflux-free household?
Does such a thing exist?
I've not lived in one for over 11 years. Can this mythical being be true? Do I dare hope?
We are counting down to W's surgery - 14 days to go.
I'm both looking forward and dreading it in the same moment. I loathe loathe loathe taking the kids in for this kind of thing. It's the total antithesis of parenting, to take your child somewhere and allow them to inflict pain on them - but it's short term and when you see W in the midst of a reflux episode you know it just absolutely has to be done.
I hate the fact that all 3 kids have suffered so badly from the demon reflux that all 3 have needed surgery. Why us? Why them?
I am actually going to ask the surgeon at W's follow up appointment if he has any idea why - he's seen more of the kids than I have, is there something under developed, some muscle which is smaller, weaker whatever than expected.
There must be a reason other than total crap luck, possibly genetics and the effects of prematurity for 100% of our kids to need surgery to stop the reflux.
I have total confidence in our wonderful and caring surgeon - I certainly wouldn't have brought T to him after N's surgery, or W if I had any concerns, this guy's manner is fantastic.
I have confidence in MY ability to guide W'S recovery and know what's normal and what's not - I wouldn't be doing this so close to Christmas and our summer holidays otherwise.
I know W's in a much better position healthwise than T was before his surgery and that it'll be much easier than T with his tube etc.
But I also know W is going to need more TLC and alert watchfulness than N did. W is going to find this very hard emotionally going into it all and he doesn't have the skills to be aware of it let alone express it and ask for help. He doesn't show pain like other people do and it's going to take a fair bit of watchfulness and persuasion on my part to ensure things aren't unrecognised on that front.
So there are other challenges involved in this surgery.
I'm also extremely hopeful that this surgery will be the end of W's cardiac issues and his snoring. If not we're back on the treadmill - an ENT for the snoring and back to the drawing board for the cardiologist. I'm 99% sure myself that that's the root cause but that 1% just keeps niggling - can it be that simple? I know that reflux is the square root of all evil - but this is my family we're talking about - things are never simple!
I've not lived in one for over 11 years. Can this mythical being be true? Do I dare hope?
We are counting down to W's surgery - 14 days to go.
I'm both looking forward and dreading it in the same moment. I loathe loathe loathe taking the kids in for this kind of thing. It's the total antithesis of parenting, to take your child somewhere and allow them to inflict pain on them - but it's short term and when you see W in the midst of a reflux episode you know it just absolutely has to be done.
I hate the fact that all 3 kids have suffered so badly from the demon reflux that all 3 have needed surgery. Why us? Why them?
I am actually going to ask the surgeon at W's follow up appointment if he has any idea why - he's seen more of the kids than I have, is there something under developed, some muscle which is smaller, weaker whatever than expected.
There must be a reason other than total crap luck, possibly genetics and the effects of prematurity for 100% of our kids to need surgery to stop the reflux.
I have total confidence in our wonderful and caring surgeon - I certainly wouldn't have brought T to him after N's surgery, or W if I had any concerns, this guy's manner is fantastic.
I have confidence in MY ability to guide W'S recovery and know what's normal and what's not - I wouldn't be doing this so close to Christmas and our summer holidays otherwise.
I know W's in a much better position healthwise than T was before his surgery and that it'll be much easier than T with his tube etc.
But I also know W is going to need more TLC and alert watchfulness than N did. W is going to find this very hard emotionally going into it all and he doesn't have the skills to be aware of it let alone express it and ask for help. He doesn't show pain like other people do and it's going to take a fair bit of watchfulness and persuasion on my part to ensure things aren't unrecognised on that front.
So there are other challenges involved in this surgery.
I'm also extremely hopeful that this surgery will be the end of W's cardiac issues and his snoring. If not we're back on the treadmill - an ENT for the snoring and back to the drawing board for the cardiologist. I'm 99% sure myself that that's the root cause but that 1% just keeps niggling - can it be that simple? I know that reflux is the square root of all evil - but this is my family we're talking about - things are never simple!
Wednesday, October 28, 2009
8 Quick and Easy Lesson on how to Melt Down an Asperger's Child!
Quick Lessons on how to Melt Down An Aspie -
Lesson One -
Unpredictable reflux episodes - happening any time anywhere with varying degrees of pain ranging from a quick ow to full on taste blood and have dizzy spells because of a nerve irritation causing cardiac changes.
Lesson 2 -
Give them medication which needs to be taken 30 mins before eating each morning and watch them stress when you suggest 1 min before the time is up that they could have some weetbix now - repeat each morning for months on end.
Lesson 3 -
Do various medical investigations - stressful in it's own right and decide that surgery is the best option to deal with the reflux but wait for a couple of weeks for test results.
Lesson 4 -
Get test results and possibly query doing another test which will really set off your sensory issues - and set surgery indefinitely but that it will happen.
Lesson 5 -
Decide the next test is too much and we just want to get on and book the surgery as the surgeon said we could do - but be unable to raise the surgeon...for 3 weeks.
Lesson 6 -
Chase up the surgeon's nurse only to get a call the next day saying surgery's in a week and a half - watch the child completely fall to pieces.
Lesson 7 -
Pull the kid together and tell them it can't happen then because their father is going to be away so there's no childcare for a hospital stay.
Lesson 7 -
Call the nurse, who calls the surgeon and then calls you and we finally get a date set for 1 December.
Fall to pieces a little yourself as you realise that you are about to put another child through major surgery and instead of just thinking and talking about it it's really going to happen.
Child falls to pieces all over again.
Lesson One -
Unpredictable reflux episodes - happening any time anywhere with varying degrees of pain ranging from a quick ow to full on taste blood and have dizzy spells because of a nerve irritation causing cardiac changes.
Lesson 2 -
Give them medication which needs to be taken 30 mins before eating each morning and watch them stress when you suggest 1 min before the time is up that they could have some weetbix now - repeat each morning for months on end.
Lesson 3 -
Do various medical investigations - stressful in it's own right and decide that surgery is the best option to deal with the reflux but wait for a couple of weeks for test results.
Lesson 4 -
Get test results and possibly query doing another test which will really set off your sensory issues - and set surgery indefinitely but that it will happen.
Lesson 5 -
Decide the next test is too much and we just want to get on and book the surgery as the surgeon said we could do - but be unable to raise the surgeon...for 3 weeks.
Lesson 6 -
Chase up the surgeon's nurse only to get a call the next day saying surgery's in a week and a half - watch the child completely fall to pieces.
Lesson 7 -
Pull the kid together and tell them it can't happen then because their father is going to be away so there's no childcare for a hospital stay.
Lesson 7 -
Call the nurse, who calls the surgeon and then calls you and we finally get a date set for 1 December.
Fall to pieces a little yourself as you realise that you are about to put another child through major surgery and instead of just thinking and talking about it it's really going to happen.
Child falls to pieces all over again.
Friday, October 9, 2009
Been a while...
Well, it's been a while and life keeps on moving.
Last month was hectic with 16 medical or related appointments - this month it's a much more manageable projected 10 planned appointments. Of course that's barring disasters but still, touch wood it'll all be fine!
I can't remember where I was up to with kid updates but things keep changing there too.
T's speech was improving and has recently gone down the tubes again too. The SLT did say to expect that so I'm not too concerned - and T has another session on Tues or Wed next week anyway.
On the W front we're still waiting to talk to the surgeon. He's said that W does need surgery at some point for his reflux and our view is, since it's having an effect on his quality of life etc that sooner is better than later. There are reactive cell changes going on in response to the reflux - basically that means he has some but not all the markers of oesophagitis - my guess would be that he has some but not all because he's on medication so it's helping but not stopping the reflux.
The surgeon was suggesting possibly doing a pH probe before going to surgery but was prepared to do the surgery without doing a probe. Now - anyone who has read their way through this blog knows what I think of probes and their reliability and reproducibility (69% reproducibility rate in paeds use) so I'm not going to do another anti probe rant here but needless to say it didn't take us too long to decide against doing a probe!
We should be in contact with the surgeon tis or next week and can hopefully get the surgery booked for December. Otherwise he'll probably have to wait until Feb.
I hate the idea of doing it - at all. But I also know it's the best option for him now and if we have to do it then let's just do it already! It's just over 2 years since N kicked this all off with his fundoplication and in the past two years I have taken a kid to theatre 4 times. I'm really sick of it, the stress and the trauma of it all. It never gets any easier, it doesn't matter how often you do it or how old the kid is. Let's just do it and start 2010 as a good health and no surgery year!
We're working with N on his abysmal eating at the moment too - the paed has pulled the Fortisips for 2 weeks to see if his eating kicks in. Neither of us are holding our breath - it's been 5 days now and while he's eating a bit faster and so less stressful he's not eating any more than he was without them - and currently 500g down. At his current rate, when we go back in 2 weeks he'll be 1.4kg down. He didn't even eat his lunch after spending all morning at the park yesterday.
Other than the kids there have been a lot of other thoughts whirling round in my head lately - mostly prematurity related.
A number of months ago now my father said that we shouldn't count W as a 33 weeker any more because he's 11 now and too old for that.
There has been discussion in the papers here about how early is too early to save, and a couple of cases of 21-23 weekers left without NICU care - and of course if we save these babies then where are the abortion marker dates etc.
So - who is a prem? What does being a prem mean? When are you 'too old to be a prem any more'? As well as the more complex and ethical debate on viability, what's 'too disabled' and who is going to help care for these kids as they grow anyway?
Here in the Catholic Church we have what's known as Respect Life Sunday this Sunday. The monthly paper said on the front page that as part of that they had an article about the difficulties of getting care and support for disabled children.
I got quite excited and eagerly flicked to that section...only to discover it was a mother talking about what it was like 30 odd years ago with her severely autistic son.
Why could they not have got a parent going through it all NOW? Why could they have not got kids on the more marginal aspects - like mine? Everyone knows that basically it's incredibly hard and funding is near non-existent for those severely impacted. What people congratulate themselves on is tht at least we're serving the minorly impacted kids out there in our community. BUT WE'RE NOT!
That's the dirty dark secret, that while resources are scarce for the severely disabled, they are virtually non existent for the less impacted, the multiple 'minor' impacted kids are struggling by with nothing - unless the parents make it their full time job to find out how the system works and scream until their child gets some help, which is often so fragmented that they wind up with input from multiple agencies individually and on seperate waiting lists.
So you tackle one aspect of a problem by finally getting to the top of a list (if you are allowed on it in the first place - if you are disabled enough!) start work on it and either get to the end of the problem or discover there's another facet which actually needs a different therapist so you join a different waiting list.
In the intervening 12-18 months while you wait, the old problem has reverted to the way it was because the first therapist couldn't quite help with it fully because there was this other aspect you needed to deal with. So you re-join your first waiting list and hope madly that they'll both come up together!
So many people think that arriving 4, 6, 8 weeks early really isn't that significant, isn't really prem, is something you grow out of - magically get 'too old to be a prem'.
But life's not like that for many of these late prems, the invisable prems, the 'not really prem'.
The stats are showing that even 36 weekers have a 5 fold increase in ADHD, significantly more 32 to 36 weekers need extra help in school with their reading, writing and maths than their full term peers. You are meant to float around, cushioned from touch, light and sound for 40 weeks and when that gets cut short it has affects on their wiring.
The late premature children even have a rate of feeding problems comparable to that of much more significantly premature babies to to the age of around 2 years old. It is now being acknowledged that when feeding problems start to occur in the late pre-term cohort they actually need as much specilised input as a 28 or so weeker. They don't get it because their prematurity risk is ignored and so the problems compound.
So in answer to one of the questions posed at the start of this - how old is 'too old to be a prem any more' in my book the answer is never. While it is a risk factor which needs to be added in developmentally, educationally and, as he ages, medically then it always has to be in mind.
Some 36 weekers come out fine or the impacts are so minor that you wouldn't know it unless you did a detailed MRI of their brain and found the 'premmy brain'. That's wonderful and fantastic for them and their families - they've got to the "can't pick them out on the playground, what were they wearing this morning?" stage. W, thanks to his Asperger's (due to prematurity) will never get to that indistinguishable point. N, with his ADHD (due to prematurity) won't reliably get to that point. Who knows with T but if, as is suspected there is some kind of language processing problem going on, then he won't either.
They have to live with the marks and affects of their prematurity every day of their lives, it has marked, affected and changed the kids from who they might have been. Some changes may well be positive ones but they are changes none the less. Their prematurity and struggles have also marked and changed me - as a person but particularly as a mother. Again, some of the changes may well be positives, but they are changes.
Prematurity will always be with us - and they will always be premature, among other things.
But first and foremost they will always be my W, N and T - my wonderful, amazing beings of whom I am intensely, crazily proud!
Last month was hectic with 16 medical or related appointments - this month it's a much more manageable projected 10 planned appointments. Of course that's barring disasters but still, touch wood it'll all be fine!
I can't remember where I was up to with kid updates but things keep changing there too.
T's speech was improving and has recently gone down the tubes again too. The SLT did say to expect that so I'm not too concerned - and T has another session on Tues or Wed next week anyway.
On the W front we're still waiting to talk to the surgeon. He's said that W does need surgery at some point for his reflux and our view is, since it's having an effect on his quality of life etc that sooner is better than later. There are reactive cell changes going on in response to the reflux - basically that means he has some but not all the markers of oesophagitis - my guess would be that he has some but not all because he's on medication so it's helping but not stopping the reflux.
The surgeon was suggesting possibly doing a pH probe before going to surgery but was prepared to do the surgery without doing a probe. Now - anyone who has read their way through this blog knows what I think of probes and their reliability and reproducibility (69% reproducibility rate in paeds use) so I'm not going to do another anti probe rant here but needless to say it didn't take us too long to decide against doing a probe!
We should be in contact with the surgeon tis or next week and can hopefully get the surgery booked for December. Otherwise he'll probably have to wait until Feb.
I hate the idea of doing it - at all. But I also know it's the best option for him now and if we have to do it then let's just do it already! It's just over 2 years since N kicked this all off with his fundoplication and in the past two years I have taken a kid to theatre 4 times. I'm really sick of it, the stress and the trauma of it all. It never gets any easier, it doesn't matter how often you do it or how old the kid is. Let's just do it and start 2010 as a good health and no surgery year!
We're working with N on his abysmal eating at the moment too - the paed has pulled the Fortisips for 2 weeks to see if his eating kicks in. Neither of us are holding our breath - it's been 5 days now and while he's eating a bit faster and so less stressful he's not eating any more than he was without them - and currently 500g down. At his current rate, when we go back in 2 weeks he'll be 1.4kg down. He didn't even eat his lunch after spending all morning at the park yesterday.
Other than the kids there have been a lot of other thoughts whirling round in my head lately - mostly prematurity related.
A number of months ago now my father said that we shouldn't count W as a 33 weeker any more because he's 11 now and too old for that.
There has been discussion in the papers here about how early is too early to save, and a couple of cases of 21-23 weekers left without NICU care - and of course if we save these babies then where are the abortion marker dates etc.
So - who is a prem? What does being a prem mean? When are you 'too old to be a prem any more'? As well as the more complex and ethical debate on viability, what's 'too disabled' and who is going to help care for these kids as they grow anyway?
Here in the Catholic Church we have what's known as Respect Life Sunday this Sunday. The monthly paper said on the front page that as part of that they had an article about the difficulties of getting care and support for disabled children.
I got quite excited and eagerly flicked to that section...only to discover it was a mother talking about what it was like 30 odd years ago with her severely autistic son.
Why could they not have got a parent going through it all NOW? Why could they have not got kids on the more marginal aspects - like mine? Everyone knows that basically it's incredibly hard and funding is near non-existent for those severely impacted. What people congratulate themselves on is tht at least we're serving the minorly impacted kids out there in our community. BUT WE'RE NOT!
That's the dirty dark secret, that while resources are scarce for the severely disabled, they are virtually non existent for the less impacted, the multiple 'minor' impacted kids are struggling by with nothing - unless the parents make it their full time job to find out how the system works and scream until their child gets some help, which is often so fragmented that they wind up with input from multiple agencies individually and on seperate waiting lists.
So you tackle one aspect of a problem by finally getting to the top of a list (if you are allowed on it in the first place - if you are disabled enough!) start work on it and either get to the end of the problem or discover there's another facet which actually needs a different therapist so you join a different waiting list.
In the intervening 12-18 months while you wait, the old problem has reverted to the way it was because the first therapist couldn't quite help with it fully because there was this other aspect you needed to deal with. So you re-join your first waiting list and hope madly that they'll both come up together!
So many people think that arriving 4, 6, 8 weeks early really isn't that significant, isn't really prem, is something you grow out of - magically get 'too old to be a prem'.
But life's not like that for many of these late prems, the invisable prems, the 'not really prem'.
The stats are showing that even 36 weekers have a 5 fold increase in ADHD, significantly more 32 to 36 weekers need extra help in school with their reading, writing and maths than their full term peers. You are meant to float around, cushioned from touch, light and sound for 40 weeks and when that gets cut short it has affects on their wiring.
The late premature children even have a rate of feeding problems comparable to that of much more significantly premature babies to to the age of around 2 years old. It is now being acknowledged that when feeding problems start to occur in the late pre-term cohort they actually need as much specilised input as a 28 or so weeker. They don't get it because their prematurity risk is ignored and so the problems compound.
So in answer to one of the questions posed at the start of this - how old is 'too old to be a prem any more' in my book the answer is never. While it is a risk factor which needs to be added in developmentally, educationally and, as he ages, medically then it always has to be in mind.
Some 36 weekers come out fine or the impacts are so minor that you wouldn't know it unless you did a detailed MRI of their brain and found the 'premmy brain'. That's wonderful and fantastic for them and their families - they've got to the "can't pick them out on the playground, what were they wearing this morning?" stage. W, thanks to his Asperger's (due to prematurity) will never get to that indistinguishable point. N, with his ADHD (due to prematurity) won't reliably get to that point. Who knows with T but if, as is suspected there is some kind of language processing problem going on, then he won't either.
They have to live with the marks and affects of their prematurity every day of their lives, it has marked, affected and changed the kids from who they might have been. Some changes may well be positive ones but they are changes none the less. Their prematurity and struggles have also marked and changed me - as a person but particularly as a mother. Again, some of the changes may well be positives, but they are changes.
Prematurity will always be with us - and they will always be premature, among other things.
But first and foremost they will always be my W, N and T - my wonderful, amazing beings of whom I am intensely, crazily proud!
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