It's been a while, quite a while since I last posted and in part that's because I kept hoping to have good news to post.
However, as typical round here things are never as they seem and in the end things are either not resolved to any conclusion - good or otherwise, or wind up in a bigger mess than ever before!
There's a lot going on for W - stuff I can't get into here and now because there are a lot of things to evolve first but needless to say it's going to be a David and Goliath fight but one David is going to win.
We're going to win for a couple of reasons - 1 - because the relevant government sector has dropped the ball so incredibly badly that there is no way the decision made can stand on the current basis (and now we have a much better idea of exactly what they are looking for we can re-write the information in such a way as to tick all their boxes!) but - 2 - because it's our child we're fighting for and his future. There is no greater incentive, no greater investment, no greater motivation.
I will not and can not just throw away everything we've strived for over the years - or allow anyone else to do that.
But it's been really intense and emotional and required a huge amount of head down research, emails, planning and the occasional meeting.
I can't remember if I've written about N and where he's at lately but things are going from difficult to messy with him too.
We realised last year that he needs transition time from being homeschooled before he goes to a secondary school - that will happen at the start of 2014 so we don't really have that long to sort ourselves out.
However we also realised that needing to drink between 1.5 Litres to 2 Litres of liquid a day really isn't compatible with school. Especially when he needs it reasonably cool and it's Ensure (a reconstituted powder mixed with water).
The paed agreed that his liquid intake and school wasn't going to work and we'd already tried mixing the Ensure with milk to boost the calories and decrease the volumes to no avail - try constipation to the point of a bleeding anal fissure for size.
So we tried to halve the volumes and limit it to out of school hours. While that was a sheer and unmitigated failure with 3 of the hardest weeks I have experienced in a very long time it did show us very clearly a few things - that he needs the regular 'doses' of calorie intake or his behaviour and school work deteriorate beyond all comprehension, that he really really needs all those calories as he lost 1.5kg in 3 weeks and didn't increase his eating to compensate, and the fights we had over getting only 750 ml in outside school hours was an impossible task and meant his stomach was so overloaded he absolutely wouldn't eat.
The day we met with the paed and all declared the experiment an abject failure and she agreed school was looking nigh on impossible unless we juggled something was also the day we got told by the relevant govt agency they had declined W for what were incorrect (and things we had never stated) reasons.
To say there were tears shed would be understatement.
It felt like the world was caving in and that we had totally lost the battle for both the boys.
Just as I was picking myself up a little from all of that it was time for the younger two's monthly weigh-in and I discovered that T hadn't gained in nearly 3 months and the GP wanted his feeds INCREASED.
I'd just nutted out a plan to get him free of day feeds by Christmas and was looking forward greatly to freedom from the tyranny of watching the clock, remembering when best to hook him up to keep energy levels up nut not compromise any chances of a decent meal, cleaning tubing, feed containers etc. Never mind the fact that once we jump the day feed hurdle any decreases then come off the night feed which means I get to actually sleep.
And so, devastated once again, I did as I was told and increased his feeds. She'd said to do it even just for 2 weeks. So, because I was so desperately keen to get him back on track (and very mindful of the fact we had a dietitian appointment in about a month and she'd be on my back about not decreasing) I took him back after only 2 weeks.
SUCCESS! A 500g gain in two weeks. That wasn't just because of an extra 50ml of formula a day. It was because I was concentrating and making sure I offered food whenever he seems to possibly be interested.
It was because I wasn't struggling with a tearful, tantrum-throwing, headachy, calorie-deficit stricken N.
An N who really couldn't be left unattended for long.
An N who left himself and us all drained and completely spent by the end of the day.
An N who had the whole family treading on egg-shells in fear of provoking the next melt down which would either result in screaming, swearing and crying for the next 30 mins or a violent attack launched on someone and then followed by the screaming, swearing and crying for the next 30 mins.
I felt dreadful. By focusing closely on one kid another had suffered. I was juggling and had dropped a ball - significantly.
I know all parents juggle all the time, that one kid requires an intense focus for a while and another has to take the back seat. But in this case the juggling act is such high stakes that you can't afford to juggle and drop.
At least it wasn't quite as bad as the last big push on N's eating when T managed to lose 500g!
Add to this he sneaking, fearful suspicion that T's dreaded 'gloopies' may be re-appearing.
Complaints of sore tummies, feeling full fast and lots of burping just add to the sense of urgency to get him off the tube. I never want to see him in as much pain as he was back then.
I also don't know how often you can re-site a tube - or how often our surgeon would be prepared to do it!
How many holes can you poke in a stomach anyway?
At the moment he seems in reasonable spirits although fear clutched it's cold hand around my heart about a week ago when he was so uncomfortable during his feed he started retching.
Night feeds don't appear to be causing problems - probably because they are run a little slower but also because he's asleep and so less aware of how he's feeling.
But in light of this we're now working to get T to drink some of his formula orally.
In life BG (Before Gloopies) he was drinking around 200 mls a day and not having day feeds. The ay feeds only started because of volumes, calorie deficits during the day and lack of solid food and later puree only restrictions.
So we're slowly cranking that back up again and he's been drinking some Neocate each afternoon for the past week. We're now up to 130 mls!
So keep your fingers crossed for a weight gain this month and so we can decrease the the tubed volumes which are currently cruising at 170mls - yes that's right down to ONE day feed!
In this process I'm hoping to get the oral volumes to 200 mls and once the day tube feed gets below 150 mls we'll chuck the extra into his night feed. So I'll be up for some horribly long nights again but hopefully only for a couple of months and then we're back onto the tube-free life expectation track!
That's all assuming the gloopies don't de-rail it with their evil presence. It was about a year from first tube placement before they started off, this time it's only 6 months since the re-siting operation. The whole prospect terrifies me to be absolutely honest and just makes me want to sit and cry.
So if I've been 'absent', quiet, short-tempered and grumpy, anti-social and generally a crap friend and missed events etc then I'm sorry but now you know why!
The constant juggle turned out to be performed with live grenades and ended in the inevitable fashion.
Darling N pointed out today "Your hair is going grey Mummy"
Yes darling there's no wonder - and actually it's going white - totally skipping the grey.
I must have dropped that ball somewhere too.
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, October 17, 2011
Sunday, August 28, 2011
In celebration of the end of the Football season - or two kids, one car, in the dark with nowhere to go!
Just a walk on the lighter side today -
I always feel like a bad mother when I'm relieved the football season is over or practice is cancelled.
W is always so disappointed and I do try to stifle my relief, really I do.
But it absolutely is relief - and this is why.
In the past years W has had football practice on a Sunday afternoon. P takes him to practice and usually N tags along. W races off to be with his mates and has a good hour and P and N get some father/son time on the adjacent playground.
Back in the really good old days T would have an afternoon nap and I'd get some total down time. More recently it meant that T and I get a good stretch of mother/son time with no interruptions of 'total emergencies' from N. It's astounding how many emergencies we can have a day according to N...
Sounds lovely right?
It was.
But this year they changed the day - to a Tuesday.
Anyone who has known me for a while knows I hate Tuesdays. I've hated them since I was 14 at least.
If something can go horribly wrong it will be a Tuesday, a day which is grotty all out of proportion - it'll be a Tuesday. When I was 14 Tuesdays were my black hole day because we had a double maths class.
I always struggled with maths so a double class would be bad enough but the evil timetable fairies had it totally in for me. We had a class second thing and then last thing of the day.
That's bad enough to split the torment but no, there's more...
We had a total fiend as a maths teacher and so he'd set homework after the first class and expect it to be done by the next class at the end of the day. Someone obviously forgot to teach this teacher the meaning of the home part of homework. So Tuesdays were a day to dread all that year.
Later in my school career Tuesdays were when we had a double class of Art History with what has to have been the most boring teacher in the school. Yet again the evil timetable fairies had it in for me because it wasn't consecutive classes but divided by lunch. It was amazing the number of students who magically got ill in the lunch break. I got through it because at least I had a free class last of all and got to go home straight after the last Art History lesson.
At University I had classes from 5:30 - 6:30pm at least 2 years in a row, not because of the classes I chose to take but because those were the tutorials I was assigned to. In the winter it was dark and cold and I was starving by the time I got home.
It was absolutely predictable that when the boys each needed their nissens, major surgery, the day of the month the surgeon operated at the relevant hospital was - a Tuesday.
And so when they said this year it was a choice between the usual Sunday afternoon or Tuesday evening I just knew what was going to happen. Just to make life truly wonderful they decided on 6:30 - 7:30pm for a practice time. This meant I'd be leaving the house around 3pm and not returning until about 8pm.
The older boys have swimming on a Tuesday afternoon - in town. They finish a bit after 5pm and so there was no way in the world I was going to get through rush hour traffic back to our place, feed the kids and turn around to football practice which was a good 20 mins from home.
Where's P in this timetabling nightmare? With a choir which has ALWAYS practiced on - Tuesday evenings.
And so Tuesdays during the football season this year had me hoping and praying for a text message saying practice was off. Every second week they were on the artifical turf so barring snow (which did actually happen one week - the week they were on the grass so likely to be cancelled anyway!) it was certain to be on.
Every Tuesday would see me making a dinner I could transport in the car, re-heat at my parents' house, feed the kids in the 50 mins I had between swimming ending and having to leave to go to football practice.
But W's practice was only an hour long so there wasn't time to drop him off, go home and come back again. There would have been no point anyway as P was out. The other parents live close to the field so they could drop and run. I wound up sitting in a car, with two grumpy kids, in the dark and simply getting colder and colder by the moment.
Many evenings ran something like this -
We'd arrive about 5 minutes early.
The second W had left the car N or T would ask how long it was until W finished. I'd reply "He hasn't even started yet!".
I'd hook T up for his night time tube feed and the boys would spend a 'peaceful' 5 minutes planning how to annoy each other for the next 75 minutes - as the practice never finished on time - and yes, I mean never - I was a clock watcher!
They would continue to alternate asking when W would be finished - at roughly 30 second intervals.
Last week, thankfully the last practice of the season, N discovered a new method of annoying the heck out of T. T had had a hard day and he was tired. He had already announced he wanted to sleep in the car this evening. By some miracle we had actually arrived 10 minutes early this week.
And so once W had left and I'd hooked T up to his feed and persuaded him, if he was going to go to sleep that it'd best best if I strapped him in now so as not to wake him doing it later, N started his new trick.
He started to flick his overhead light on and off over and over and over again.
T asked him nicely to stop.
N kept on flicking.
I asked him to stop.
N kept on flicking.
T screamed at him to stop.
N kept on flicking.
T screamed more and I asked N firmly to stop.
N kept on flicking.
By now T's literally working up a sweat and is in tears because all he wants is to sleep but N keeps on flicking.
In the end I tell him he's now lost 10 minutes computer time from the next day, yes that includes watching dvds on an old laptop he uses and if he doesn't want to lose more he will stop flicking the light on and off right now!
N stops flicking.
Peace reigns - for about 40 seconds.
T starts humming, gently and quietly at first. It's not really too intrusive and so everyone seems to cope with it. But gradually it gets louder. It's seriously not annoying but N isn't going to let this pass - after all he couldn't flick the light so why should T be allowed to hum? The difference in annoyance levels totally escapes N.
As so, going from 0 to 100 in typical N style he screams at T to stop humming - a hum which is loud enough to be aware of but not much else.
T stops, for a few seconds. A thoughtful look passes across his face and I sit, waiting for what gem is going to come next.
"Hmm" says T, tapping his chin with his finger pensively, "What do I need??? Hmm, oh yeah - a microphone!"
This last word is delivered at full volume.
An evil grin spreads over T's face as N erupts into predictable screams, yells, threats and a hail of whatever missiles he can find at the back of the car to throw towards T.
And through it all T is heard to ask "How long til W's finished Mummy?" "Over an hour!" I say through gritted teeth.
And so, I'm not really a bad mother. Honestly I'm not.
But the relief that P and W are currently at the end of season function is flowing very strongly today.
I always feel like a bad mother when I'm relieved the football season is over or practice is cancelled.
W is always so disappointed and I do try to stifle my relief, really I do.
But it absolutely is relief - and this is why.
In the past years W has had football practice on a Sunday afternoon. P takes him to practice and usually N tags along. W races off to be with his mates and has a good hour and P and N get some father/son time on the adjacent playground.
Back in the really good old days T would have an afternoon nap and I'd get some total down time. More recently it meant that T and I get a good stretch of mother/son time with no interruptions of 'total emergencies' from N. It's astounding how many emergencies we can have a day according to N...
Sounds lovely right?
It was.
But this year they changed the day - to a Tuesday.
Anyone who has known me for a while knows I hate Tuesdays. I've hated them since I was 14 at least.
If something can go horribly wrong it will be a Tuesday, a day which is grotty all out of proportion - it'll be a Tuesday. When I was 14 Tuesdays were my black hole day because we had a double maths class.
I always struggled with maths so a double class would be bad enough but the evil timetable fairies had it totally in for me. We had a class second thing and then last thing of the day.
That's bad enough to split the torment but no, there's more...
We had a total fiend as a maths teacher and so he'd set homework after the first class and expect it to be done by the next class at the end of the day. Someone obviously forgot to teach this teacher the meaning of the home part of homework. So Tuesdays were a day to dread all that year.
Later in my school career Tuesdays were when we had a double class of Art History with what has to have been the most boring teacher in the school. Yet again the evil timetable fairies had it in for me because it wasn't consecutive classes but divided by lunch. It was amazing the number of students who magically got ill in the lunch break. I got through it because at least I had a free class last of all and got to go home straight after the last Art History lesson.
At University I had classes from 5:30 - 6:30pm at least 2 years in a row, not because of the classes I chose to take but because those were the tutorials I was assigned to. In the winter it was dark and cold and I was starving by the time I got home.
It was absolutely predictable that when the boys each needed their nissens, major surgery, the day of the month the surgeon operated at the relevant hospital was - a Tuesday.
And so when they said this year it was a choice between the usual Sunday afternoon or Tuesday evening I just knew what was going to happen. Just to make life truly wonderful they decided on 6:30 - 7:30pm for a practice time. This meant I'd be leaving the house around 3pm and not returning until about 8pm.
The older boys have swimming on a Tuesday afternoon - in town. They finish a bit after 5pm and so there was no way in the world I was going to get through rush hour traffic back to our place, feed the kids and turn around to football practice which was a good 20 mins from home.
Where's P in this timetabling nightmare? With a choir which has ALWAYS practiced on - Tuesday evenings.
And so Tuesdays during the football season this year had me hoping and praying for a text message saying practice was off. Every second week they were on the artifical turf so barring snow (which did actually happen one week - the week they were on the grass so likely to be cancelled anyway!) it was certain to be on.
Every Tuesday would see me making a dinner I could transport in the car, re-heat at my parents' house, feed the kids in the 50 mins I had between swimming ending and having to leave to go to football practice.
But W's practice was only an hour long so there wasn't time to drop him off, go home and come back again. There would have been no point anyway as P was out. The other parents live close to the field so they could drop and run. I wound up sitting in a car, with two grumpy kids, in the dark and simply getting colder and colder by the moment.
Many evenings ran something like this -
We'd arrive about 5 minutes early.
The second W had left the car N or T would ask how long it was until W finished. I'd reply "He hasn't even started yet!".
I'd hook T up for his night time tube feed and the boys would spend a 'peaceful' 5 minutes planning how to annoy each other for the next 75 minutes - as the practice never finished on time - and yes, I mean never - I was a clock watcher!
They would continue to alternate asking when W would be finished - at roughly 30 second intervals.
Last week, thankfully the last practice of the season, N discovered a new method of annoying the heck out of T. T had had a hard day and he was tired. He had already announced he wanted to sleep in the car this evening. By some miracle we had actually arrived 10 minutes early this week.
And so once W had left and I'd hooked T up to his feed and persuaded him, if he was going to go to sleep that it'd best best if I strapped him in now so as not to wake him doing it later, N started his new trick.
He started to flick his overhead light on and off over and over and over again.
T asked him nicely to stop.
N kept on flicking.
I asked him to stop.
N kept on flicking.
T screamed at him to stop.
N kept on flicking.
T screamed more and I asked N firmly to stop.
N kept on flicking.
By now T's literally working up a sweat and is in tears because all he wants is to sleep but N keeps on flicking.
In the end I tell him he's now lost 10 minutes computer time from the next day, yes that includes watching dvds on an old laptop he uses and if he doesn't want to lose more he will stop flicking the light on and off right now!
N stops flicking.
Peace reigns - for about 40 seconds.
T starts humming, gently and quietly at first. It's not really too intrusive and so everyone seems to cope with it. But gradually it gets louder. It's seriously not annoying but N isn't going to let this pass - after all he couldn't flick the light so why should T be allowed to hum? The difference in annoyance levels totally escapes N.
As so, going from 0 to 100 in typical N style he screams at T to stop humming - a hum which is loud enough to be aware of but not much else.
T stops, for a few seconds. A thoughtful look passes across his face and I sit, waiting for what gem is going to come next.
"Hmm" says T, tapping his chin with his finger pensively, "What do I need??? Hmm, oh yeah - a microphone!"
This last word is delivered at full volume.
An evil grin spreads over T's face as N erupts into predictable screams, yells, threats and a hail of whatever missiles he can find at the back of the car to throw towards T.
And through it all T is heard to ask "How long til W's finished Mummy?" "Over an hour!" I say through gritted teeth.
And so, I'm not really a bad mother. Honestly I'm not.
But the relief that P and W are currently at the end of season function is flowing very strongly today.
Friday, August 5, 2011
The DHAC People - or try walking a mile WITH me
This posting is in tribute to all those 'wonderful' people who DHAC (Don't Have A Clue), those who have been able to live in blissful ignorance and want to share their ignorance of the harder turns life can take with others!
I have been the unwilling recipient of many a thoughtless, stupid or plain mean comment over the years with the kids.
They range from the idiot who told me I was lucky to have a baby in the NICU as at least I had built in baby sitting - when all I was desperate for was to take my baby home and not walk out of that building once more without him;
The woman on the bus who asked what I'd done wrong to make my baby so small (referring to a still not due yet W) - I told her I washed him and he shrank!
The wonderful person who told me "You do the crime you do the time" when I yawned and said I was tired from 2am feeds - T was 10 months old and we were setting alarms to feed him as per paed instructions.
The person who tells me how much their kid eats in a single sitting and how much they weigh now and then asks, knowing our battles with all the kids, says they bet their kid is bigger than mine and what does x weigh now?
The 'helpful' person on the street who tells me I can't really be a mother of my baby as I clearly have no breast milk for him;
The person who tells me it's lucky my child has developmental delays because they can stay a baby for that much longer. The other variant is being lucky they are tiny because they stay a baby for longer - not so much fun when you are putting your 6 month old into newborn clothes and you are sooooo sick of stretch'n'grows!
The health-fixated passerby doing their bit for child obesity and tells me I shouldn't be giving my child a lollipop or a small packet of chippies.
This one happened on 3 separate occasions all to T - the lollipop was after a major blood draw and was an incredibly well earnt reward, the chippies on one occasion was the first solid food he'd eaten in 24 hours and was tentatively eating his second chip and on hearing the 'health announcement' handed me the packet back and refused to eat anything more - I nearly cried.
The third was one afternoon when he'd actually asked for them! It was only about 7 months after his surgery and I happily bought them. I gave her an eyeful of tube and said we were happy he could eat anything.
The woman in the supermarket who took T to task for fiddling 'down there', declaring none of her children or grandkids would have dared to - it wasn't long after his long tube had been removed and switched for his button recently and he was in the habit of holding it and protecting himself from it pulling. If only I'd thought to explain, show her his scar riddled tummy and button.
The innumerable people who have seen fit to pass loudly audible judgement on the temperament and manners of my child and/or my parenting skills as I have a child in full autistic meltdown, running through the supermarket yelling about anything and everything which comes into his head and will not stop for anything or any other child behaviour which doesn't fit the socially accepted 'norm'.
The people who can't understand that a child is going to be extremely distressed when their feeds have been juggled to fit in with an event, everything is running late, they are almost overhungry now - and then we discover there's nothing allergen-free/suitable to eat.
The people who ask and seem oh-so-surprised when you explain that no, W hasn't 'outgrown' his Asperger's or N his ADHD. In fact so many kids don't 'out-grow' their prematurity too - a premature baby grows into a premature child in so many cases.
the people who declare "children didn't behave like that in our day" - no, they didn't. They were in institutions or dead.
And that brings me beautifully to today's excellent example of a DHAC who simply has to prove it in the most obnoxious way possible - the person who stops you as your tube-fed child, still attached to a pump, runs off after his brothers and says that kids like that ought to be in hospital and it would have been kinder just to let him die.
I'm sure many of my readers have plenty of these comments of their own they've collected over the years and have suffered the same pain. Do feel free to add them on the comments section! :-)
But why do the comments hurt? Quite apart from the obvious with the latest one - how can you suggest my beautiful, life-filled child would be better dead? Why do they hurt?
In part I think it's because they are simply destined to hurt with their thoughtlessness.
Part is because you see what you don't have any more or never had to start with.
Part is sheer and utter jealousy on our parts - wouldn't it be wonderful to live life not knowing about all of these issues?
Without the worry, concern, fear?
Wouldn't it be lovely to walk down the street and see a kid eating a packet of chippies and think about something other than how many calories, nutrients and any possible spin-offs like drinking extra formula there might be in it?
To watch a child run, climb and jump off something and not know and think about what a complex series of motor skills that requires - all at the same time scanning for hazards for your child's inevitable fall because they haven't mastered the motor skills their peers have but they want to do it anyway.
This is one of those many Face Book statuses which do the rounds but is very very appropriate here -
For all the parents who had to wait longer to hear a first word,
Who spent more time in doctors offices with their child than on playdates,
Who endure countless bad days and the stares from other people,
For the parents whose child's first friend was their therapist,
For all the parents who face special needs every day.
We salute you.
But more than that I salute the children themselves - those who have never known any other life,
Those who battle on to do as their peers do even though they are a million miles behind them,
Those struggle with ordinary every day skills such as eating - or breathing!
Those who keep smiling through it all - and keep making it worth it for us to go out there every day and fight for them.
They are the true heroes.
I have been the unwilling recipient of many a thoughtless, stupid or plain mean comment over the years with the kids.
They range from the idiot who told me I was lucky to have a baby in the NICU as at least I had built in baby sitting - when all I was desperate for was to take my baby home and not walk out of that building once more without him;
The woman on the bus who asked what I'd done wrong to make my baby so small (referring to a still not due yet W) - I told her I washed him and he shrank!
The wonderful person who told me "You do the crime you do the time" when I yawned and said I was tired from 2am feeds - T was 10 months old and we were setting alarms to feed him as per paed instructions.
The person who tells me how much their kid eats in a single sitting and how much they weigh now and then asks, knowing our battles with all the kids, says they bet their kid is bigger than mine and what does x weigh now?
The 'helpful' person on the street who tells me I can't really be a mother of my baby as I clearly have no breast milk for him;
The person who tells me it's lucky my child has developmental delays because they can stay a baby for that much longer. The other variant is being lucky they are tiny because they stay a baby for longer - not so much fun when you are putting your 6 month old into newborn clothes and you are sooooo sick of stretch'n'grows!
The health-fixated passerby doing their bit for child obesity and tells me I shouldn't be giving my child a lollipop or a small packet of chippies.
This one happened on 3 separate occasions all to T - the lollipop was after a major blood draw and was an incredibly well earnt reward, the chippies on one occasion was the first solid food he'd eaten in 24 hours and was tentatively eating his second chip and on hearing the 'health announcement' handed me the packet back and refused to eat anything more - I nearly cried.
The third was one afternoon when he'd actually asked for them! It was only about 7 months after his surgery and I happily bought them. I gave her an eyeful of tube and said we were happy he could eat anything.
The woman in the supermarket who took T to task for fiddling 'down there', declaring none of her children or grandkids would have dared to - it wasn't long after his long tube had been removed and switched for his button recently and he was in the habit of holding it and protecting himself from it pulling. If only I'd thought to explain, show her his scar riddled tummy and button.
The innumerable people who have seen fit to pass loudly audible judgement on the temperament and manners of my child and/or my parenting skills as I have a child in full autistic meltdown, running through the supermarket yelling about anything and everything which comes into his head and will not stop for anything or any other child behaviour which doesn't fit the socially accepted 'norm'.
The people who can't understand that a child is going to be extremely distressed when their feeds have been juggled to fit in with an event, everything is running late, they are almost overhungry now - and then we discover there's nothing allergen-free/suitable to eat.
The people who ask and seem oh-so-surprised when you explain that no, W hasn't 'outgrown' his Asperger's or N his ADHD. In fact so many kids don't 'out-grow' their prematurity too - a premature baby grows into a premature child in so many cases.
the people who declare "children didn't behave like that in our day" - no, they didn't. They were in institutions or dead.
And that brings me beautifully to today's excellent example of a DHAC who simply has to prove it in the most obnoxious way possible - the person who stops you as your tube-fed child, still attached to a pump, runs off after his brothers and says that kids like that ought to be in hospital and it would have been kinder just to let him die.
I'm sure many of my readers have plenty of these comments of their own they've collected over the years and have suffered the same pain. Do feel free to add them on the comments section! :-)
But why do the comments hurt? Quite apart from the obvious with the latest one - how can you suggest my beautiful, life-filled child would be better dead? Why do they hurt?
In part I think it's because they are simply destined to hurt with their thoughtlessness.
Part is because you see what you don't have any more or never had to start with.
Part is sheer and utter jealousy on our parts - wouldn't it be wonderful to live life not knowing about all of these issues?
Without the worry, concern, fear?
Wouldn't it be lovely to walk down the street and see a kid eating a packet of chippies and think about something other than how many calories, nutrients and any possible spin-offs like drinking extra formula there might be in it?
To watch a child run, climb and jump off something and not know and think about what a complex series of motor skills that requires - all at the same time scanning for hazards for your child's inevitable fall because they haven't mastered the motor skills their peers have but they want to do it anyway.
This is one of those many Face Book statuses which do the rounds but is very very appropriate here -
For all the parents who had to wait longer to hear a first word,
Who spent more time in doctors offices with their child than on playdates,
Who endure countless bad days and the stares from other people,
For the parents whose child's first friend was their therapist,
For all the parents who face special needs every day.
We salute you.
But more than that I salute the children themselves - those who have never known any other life,
Those who battle on to do as their peers do even though they are a million miles behind them,
Those struggle with ordinary every day skills such as eating - or breathing!
Those who keep smiling through it all - and keep making it worth it for us to go out there every day and fight for them.
They are the true heroes.
Saturday, July 9, 2011
Do you have to lose to truly gain?
"Don't it always seem to go
That you don't know what you've got
Til it's gone.
They paved paradise
And put up a parking lot"
Joni Mitchell - Big Yellow Taxi.
This is something I've pondered on and off for years - do you really only appreciate what you've got when you've either lost it or had to fight hard for it? Can you truly appreciate something without having to suffer for it?
My ponderings have really come to a head after a few things - some have been kid related as usual but the other thought developers have come from a particularly interesting sermon at church recently and closely followed by a religious radio program where, on this occasion, they interviewed the Dean of Christchurch Cathedral here in New Zealand.
I know we have a few overseas readers here so a very quick re-cap - Christchurch has been hit by 3 massive earthquakes since Sept last year.There has been huge devastation, lives lost in the Feb quake, the centre of the city largely destroyed as well as whole suburbs. In the Feb quake his Cathedral was significantly damaged - to the point of almost certainly needing demolition and rebuilding. This is a historic, beautiful building in the heart of the city and one of the city's iconic emblems, the spirit of Christchurch some would say. In the recent June quake it was further damaged and one of the few remaining pieces they had hoped to take and incorporate in a new building, the rose window, fell and was destroyed.
The Dean's interview was all about what he believed in, trusted in and as inevitably would emerge - Where is God in the earthquakes. His simple but profound response was - In the People.
How they behaved, reacted, helped and supported each other, with the love and growth which was going on through such despair.
The sermon earlier the same morning started off on a much wider premise - looking at the change in wording in many of the parts of the Mass we say. One of these was where we now say Jesus went to Hell - and then the prayer carries on. But the part that caught me was the slant on Jesus going to Hell, that he has suffered too, and although suffering would be much better if it didn't happen at all there is something to gain, growth of some kind and that although it can be Hell Jesus has been there too.
My mind, and I don't know if it was intended by Fr James or not, went to the expression of 'going to Hell and back', that God has been there, is there, and can be there with us.
I know that often on a Sunday, my simple prayer is for the strength and guidance and courage to get through whatever the next week throws at me. Some weeks I know roughly what that is with the stack of appointments up ahead of us, other weeks I have no idea at all but can feel that I'm running low within myself and need that extra support, boosting hand to get up and just keep on going.
Now, neither of the clergy said that it was good to suffer, simply that it is a fact of life. Neither of them said that good always come from the suffering either - that'd be a major switch off point for me because I can't see any good from a number of situations I can think of.
But they did say good, growth, new learning and development can come from the suffering.
And that got me wondering if, in fact, we really only truly appreciate things when either we've had to fight incredibly hard for them or lost them, possibly lost and re-gained.
In a big picture look I'm sure I don't truly appreciate the ability to do largely as I want as I would do if I had been in a war-torn country, dictatorship etc.
Closer to home I'm sure I don't really appreciate the fact that clean water will easily come from the tap when I turn it on, that I flick on a light switch and expect power, that I don't think twice about flushing the toilet.
I know every parent cheers on their children's new milestones, especially their gross motor ones - but would I still have etched in my mind's eye W's first staggery crawling and walking efforts if he hadn't had to battle so hard to achieve that? N and T didn't have to work so hard for that one and I can't remember exactly where they were when they started but I can with W. Part of that is first child syndrome - but a large part is the battle, the hard work and constant practice we both did to get him there.
I know every parent worries when their child is sick - but would I appreciate seeing a kid literally bouncing around with energy and health the way I do if T hadn't have been so lacking so often for so long?
The wonderous event when 'it's just a cold' actually is just a cold not leading into croup, ear infections, antibiotics, reflux flares, decreased eating, weight loss and then literally months to claw your way back to where they were before the 'cold'?
Tonight was a milestone which I know many other parents out there take for granted but it has been hard fought and so rarely experienced - both T and N left empty plates! They both only had 100g of dinner so nowhere near enough to actually live on but it is incredibly rare to have a meal where everyone finishes!
Needless to say I'll be making that dinner again.
Simply watching T eat a dinner like tonight's is still something I get simple pleasure from - it is only a few months ago when we were looking at the distinct possibility that he wasn't going to be able to eat solid food for a considerable length of time. Certainly I didn't appreciate the importance of solid food and all it's calories, energy, health and strength giving abilities until I was constantly locked in a battle to keep weight on T on tube feeds and soft/purees only. Never before have I appreciated the wonders of a child eating a fish finger!
So did it have to take losing these things, having to work way too hard for these things, to truly appreciate them? Are there little 'blessings' (for lack of a better word) in our everyday lives we'd never properly appreciate until they were threatened or we actually lose them?
I don't know.
I know that so much of my life is spend in filling in deficits for the kids, by necessity seeing what is wrong, that it has to be good to stop, smell the flowers and see what is right, what they can do and what they do have on occasions. To enjoy paradise before they put up a parking lot as per the song snippet at the start.
As for what good has come from any of these experiences, these losses or threatened losses - that's definitely a matter for another post. I know I have gained and grown and that in many many ways the boys would not necessarily be the people they are if they hadn't had these experiences either but I also wish with every fibre in my being that many of them had never happened to.
Do we need to lose something to truly appreciate it?
I don't know.
I'd hope not but suspect it's true in many areas.
Let's all try to take a moment to enjoy the odd corners of paradise before it's paved.
"Don't it always seem to go
That you don't know what you've got
Til it's gone.
They paved paradise
And put up a parking lot"
Joni Mitchell - Big Yellow Taxi.
That you don't know what you've got
Til it's gone.
They paved paradise
And put up a parking lot"
Joni Mitchell - Big Yellow Taxi.
This is something I've pondered on and off for years - do you really only appreciate what you've got when you've either lost it or had to fight hard for it? Can you truly appreciate something without having to suffer for it?
My ponderings have really come to a head after a few things - some have been kid related as usual but the other thought developers have come from a particularly interesting sermon at church recently and closely followed by a religious radio program where, on this occasion, they interviewed the Dean of Christchurch Cathedral here in New Zealand.
I know we have a few overseas readers here so a very quick re-cap - Christchurch has been hit by 3 massive earthquakes since Sept last year.There has been huge devastation, lives lost in the Feb quake, the centre of the city largely destroyed as well as whole suburbs. In the Feb quake his Cathedral was significantly damaged - to the point of almost certainly needing demolition and rebuilding. This is a historic, beautiful building in the heart of the city and one of the city's iconic emblems, the spirit of Christchurch some would say. In the recent June quake it was further damaged and one of the few remaining pieces they had hoped to take and incorporate in a new building, the rose window, fell and was destroyed.
The Dean's interview was all about what he believed in, trusted in and as inevitably would emerge - Where is God in the earthquakes. His simple but profound response was - In the People.
How they behaved, reacted, helped and supported each other, with the love and growth which was going on through such despair.
The sermon earlier the same morning started off on a much wider premise - looking at the change in wording in many of the parts of the Mass we say. One of these was where we now say Jesus went to Hell - and then the prayer carries on. But the part that caught me was the slant on Jesus going to Hell, that he has suffered too, and although suffering would be much better if it didn't happen at all there is something to gain, growth of some kind and that although it can be Hell Jesus has been there too.
My mind, and I don't know if it was intended by Fr James or not, went to the expression of 'going to Hell and back', that God has been there, is there, and can be there with us.
I know that often on a Sunday, my simple prayer is for the strength and guidance and courage to get through whatever the next week throws at me. Some weeks I know roughly what that is with the stack of appointments up ahead of us, other weeks I have no idea at all but can feel that I'm running low within myself and need that extra support, boosting hand to get up and just keep on going.
Now, neither of the clergy said that it was good to suffer, simply that it is a fact of life. Neither of them said that good always come from the suffering either - that'd be a major switch off point for me because I can't see any good from a number of situations I can think of.
But they did say good, growth, new learning and development can come from the suffering.
And that got me wondering if, in fact, we really only truly appreciate things when either we've had to fight incredibly hard for them or lost them, possibly lost and re-gained.
In a big picture look I'm sure I don't truly appreciate the ability to do largely as I want as I would do if I had been in a war-torn country, dictatorship etc.
Closer to home I'm sure I don't really appreciate the fact that clean water will easily come from the tap when I turn it on, that I flick on a light switch and expect power, that I don't think twice about flushing the toilet.
I know every parent cheers on their children's new milestones, especially their gross motor ones - but would I still have etched in my mind's eye W's first staggery crawling and walking efforts if he hadn't had to battle so hard to achieve that? N and T didn't have to work so hard for that one and I can't remember exactly where they were when they started but I can with W. Part of that is first child syndrome - but a large part is the battle, the hard work and constant practice we both did to get him there.
I know every parent worries when their child is sick - but would I appreciate seeing a kid literally bouncing around with energy and health the way I do if T hadn't have been so lacking so often for so long?
The wonderous event when 'it's just a cold' actually is just a cold not leading into croup, ear infections, antibiotics, reflux flares, decreased eating, weight loss and then literally months to claw your way back to where they were before the 'cold'?
Tonight was a milestone which I know many other parents out there take for granted but it has been hard fought and so rarely experienced - both T and N left empty plates! They both only had 100g of dinner so nowhere near enough to actually live on but it is incredibly rare to have a meal where everyone finishes!
Needless to say I'll be making that dinner again.
Simply watching T eat a dinner like tonight's is still something I get simple pleasure from - it is only a few months ago when we were looking at the distinct possibility that he wasn't going to be able to eat solid food for a considerable length of time. Certainly I didn't appreciate the importance of solid food and all it's calories, energy, health and strength giving abilities until I was constantly locked in a battle to keep weight on T on tube feeds and soft/purees only. Never before have I appreciated the wonders of a child eating a fish finger!
So did it have to take losing these things, having to work way too hard for these things, to truly appreciate them? Are there little 'blessings' (for lack of a better word) in our everyday lives we'd never properly appreciate until they were threatened or we actually lose them?
I don't know.
I know that so much of my life is spend in filling in deficits for the kids, by necessity seeing what is wrong, that it has to be good to stop, smell the flowers and see what is right, what they can do and what they do have on occasions. To enjoy paradise before they put up a parking lot as per the song snippet at the start.
As for what good has come from any of these experiences, these losses or threatened losses - that's definitely a matter for another post. I know I have gained and grown and that in many many ways the boys would not necessarily be the people they are if they hadn't had these experiences either but I also wish with every fibre in my being that many of them had never happened to.
Do we need to lose something to truly appreciate it?
I don't know.
I'd hope not but suspect it's true in many areas.
Let's all try to take a moment to enjoy the odd corners of paradise before it's paved.
"Don't it always seem to go
That you don't know what you've got
Til it's gone.
They paved paradise
And put up a parking lot"
Joni Mitchell - Big Yellow Taxi.
Wednesday, June 15, 2011
13 Years on
13 years - what a milestone!
What a life time really!
What experiences - good and bad.
What a roller coaster and marathon all in one.
It is mindblowing really to think back on where I as a person, and we as a family were at 13 years ago.
So much has changed, not been as we'd expected, planned, hoped. So much growth has happened - not necessarily in ways I'd have thought of but have paid off in so many directions. So many pre-conceived ideas have been rudely, abruptly and often slowly, painfully and thoughtfully thrown out the window.
Why 13 years?
W, my eldest turned 13 today.
13, the start of the teens is a big milestone in anyone's life but it's also a pause for the parents and a moment of "Crap! Have we really been at this lark that long??!"
13 years ago today both he and I were hanging on to life - both in question.
I improved and they relaxed.
But the scramble has been on-going with W. Doctors, paeds, dietitians, tests, OTs, physios, SLTs, meds, apnoea monitors, food diaries, weigh-ins, missed milestones, the hailstorm of diagnosis after diagnosis.
Things have slowed over the years with W if that's any reassurance to others at the brutal starting point of this ultra marathon. Out of the 35+ appointments the boys have had since the middle of Jan this year only a very small handful have been related to W.
I do have to make an appointment with Special Ed to discuss W's secondary schooling but I refuse to do that in his birthday week. I want the momentary oasis.
It annoyed the hell out of me, as a realistically and rightfully worried prem mum, to be constantly told of 6ft prems and not to worry they all grow eventually.
For those reading this who are NOT prem parents - DO NOT tell people about the boy down the road who did this. It will drive crazy rather than reassure because it IS the exception not the rule.
Having said that - I'm in danger of actually having the proverbial 6ft preemie!
But not without years of blood, sweat, toil, research, hassling doctors, high cal supplements and tears.
My 3lb 14 oz or 1.795kg baby who was only 34 cm long is now around 50kg and 170.5cm tall and increasing every day by the looks of him.
The contrast between the 2 year old who weighed 10kg and ran crying from food to W now who is always on the scrounge for food is incredible.
I guess if you play chicken long enough someone has to blink so if you stay firm it's not going to be you.
I never thought that parenting was going to be THIS kind of endurance race. I knew it'd be hard, try your patience, you'd be tired, frustrated at times, worried at times but not quite like it's been for us.
I wanted to be a mother - not a doctor, nurse, therapist, teacher.
I did not want to get to the point where we were today when I took T in to the doctor and said I thought he had a tube infection, she took one look and agreed and wrote the script for antibiotics. Didn't even need to swab. Even T knows enough these days - he specifically asked for ones that didn't need an empty tummy and could go down his tube.
But you know what?
I've gained so much too - the appreciation for every tiny milestone - sure not every mother celebrates the fact their kid can breathe on their own but knowing how a sat monitor works has been very useful!
Every mother celebrates their child pulling to a stand, crawling, sitting walking - but not everyone's watched every little component of that skill battled for with physios and home therapy.
Every mother would be very proud of their child getting a distinction and 81 % in their first ever piano exam - but not everyone also watched the same child aged 4 struggle in OT sessions to make one of his hands work the way they wanted.
I've gained incredible research skills and interpersonal communication skills, between multiple disciplines - and taught a few experts a hing or two - and even to treat me as a dumb mum at their peril!
A few medical specialists even treat me as an equal partner in the team - as I am.
Every mother will stand and fight for their kids - but the fights we have fought have often been far-reaching, significant and important.
I am more battle weary than I ever thought possible, more tired now despite not having a newborn, and some times just jaded from the constant on-slaught.
But I am a stronger person, a changed and different person, often learnt to try and find the quiet, the good moments, and what really counts - trying not to sweat the small stuff.
I have also learnt to see and appreciate the incredible strength, resilience, determination and absolute inner beauty of my boys. There can be sheer triumph in tiny achievements.
Today when we celebrated W's birthday with a fast food dinner between the older two's swimming and W's soccer practice - T managed to eat almost an entire children's meal. Yes, he's 6 and yes, I then hooked him up to his night tube feed in the carpark but he's NEVER done that before.
There can be sheer triumph in tiny achievements!
And so to W - from my tiny, might not make it 24 hours, first born, struggling through so many hoops with pride and dignity - I'm sure there are many more hoops to come, no I might not be able to be there, wearing the knees out of my jeans as I teach you to crawl, but I will be there with you to the best of my ability - as I know you will to yours. You have risen to every challenge, struggled through and triumphed as best you possibly can.
And we will cheer you on!
To an amazing 13 years of growth - many the next 13 be just as amazing - but easier!
What a life time really!
What experiences - good and bad.
What a roller coaster and marathon all in one.
It is mindblowing really to think back on where I as a person, and we as a family were at 13 years ago.
So much has changed, not been as we'd expected, planned, hoped. So much growth has happened - not necessarily in ways I'd have thought of but have paid off in so many directions. So many pre-conceived ideas have been rudely, abruptly and often slowly, painfully and thoughtfully thrown out the window.
Why 13 years?
W, my eldest turned 13 today.
13, the start of the teens is a big milestone in anyone's life but it's also a pause for the parents and a moment of "Crap! Have we really been at this lark that long??!"
13 years ago today both he and I were hanging on to life - both in question.
I improved and they relaxed.
But the scramble has been on-going with W. Doctors, paeds, dietitians, tests, OTs, physios, SLTs, meds, apnoea monitors, food diaries, weigh-ins, missed milestones, the hailstorm of diagnosis after diagnosis.
Things have slowed over the years with W if that's any reassurance to others at the brutal starting point of this ultra marathon. Out of the 35+ appointments the boys have had since the middle of Jan this year only a very small handful have been related to W.
I do have to make an appointment with Special Ed to discuss W's secondary schooling but I refuse to do that in his birthday week. I want the momentary oasis.
It annoyed the hell out of me, as a realistically and rightfully worried prem mum, to be constantly told of 6ft prems and not to worry they all grow eventually.
For those reading this who are NOT prem parents - DO NOT tell people about the boy down the road who did this. It will drive crazy rather than reassure because it IS the exception not the rule.
Having said that - I'm in danger of actually having the proverbial 6ft preemie!
But not without years of blood, sweat, toil, research, hassling doctors, high cal supplements and tears.
My 3lb 14 oz or 1.795kg baby who was only 34 cm long is now around 50kg and 170.5cm tall and increasing every day by the looks of him.
The contrast between the 2 year old who weighed 10kg and ran crying from food to W now who is always on the scrounge for food is incredible.
I guess if you play chicken long enough someone has to blink so if you stay firm it's not going to be you.
I never thought that parenting was going to be THIS kind of endurance race. I knew it'd be hard, try your patience, you'd be tired, frustrated at times, worried at times but not quite like it's been for us.
I wanted to be a mother - not a doctor, nurse, therapist, teacher.
I did not want to get to the point where we were today when I took T in to the doctor and said I thought he had a tube infection, she took one look and agreed and wrote the script for antibiotics. Didn't even need to swab. Even T knows enough these days - he specifically asked for ones that didn't need an empty tummy and could go down his tube.
But you know what?
I've gained so much too - the appreciation for every tiny milestone - sure not every mother celebrates the fact their kid can breathe on their own but knowing how a sat monitor works has been very useful!
Every mother celebrates their child pulling to a stand, crawling, sitting walking - but not everyone's watched every little component of that skill battled for with physios and home therapy.
Every mother would be very proud of their child getting a distinction and 81 % in their first ever piano exam - but not everyone also watched the same child aged 4 struggle in OT sessions to make one of his hands work the way they wanted.
I've gained incredible research skills and interpersonal communication skills, between multiple disciplines - and taught a few experts a hing or two - and even to treat me as a dumb mum at their peril!
A few medical specialists even treat me as an equal partner in the team - as I am.
Every mother will stand and fight for their kids - but the fights we have fought have often been far-reaching, significant and important.
I am more battle weary than I ever thought possible, more tired now despite not having a newborn, and some times just jaded from the constant on-slaught.
But I am a stronger person, a changed and different person, often learnt to try and find the quiet, the good moments, and what really counts - trying not to sweat the small stuff.
I have also learnt to see and appreciate the incredible strength, resilience, determination and absolute inner beauty of my boys. There can be sheer triumph in tiny achievements.
Today when we celebrated W's birthday with a fast food dinner between the older two's swimming and W's soccer practice - T managed to eat almost an entire children's meal. Yes, he's 6 and yes, I then hooked him up to his night tube feed in the carpark but he's NEVER done that before.
There can be sheer triumph in tiny achievements!
And so to W - from my tiny, might not make it 24 hours, first born, struggling through so many hoops with pride and dignity - I'm sure there are many more hoops to come, no I might not be able to be there, wearing the knees out of my jeans as I teach you to crawl, but I will be there with you to the best of my ability - as I know you will to yours. You have risen to every challenge, struggled through and triumphed as best you possibly can.
And we will cheer you on!
To an amazing 13 years of growth - many the next 13 be just as amazing - but easier!
Friday, May 27, 2011
The Two Step Shuffle...
Or maybe that should be two steps forwards, one step back...
It feels like so much of the time with the kids.
T has finally been able to switch to a button from his long tube. He is revelling in the liberation - time on the trampoline, faster feeds, not having to be careful of the connection between the gastrostomy tube and the feeding pump tubing, longer tubing so a longer 'leash' while he's being fed too.
I'm enjoying not worrying about the join between the tubing too, not fluffing around with sticky first aid tape trying to keep two bits of tubing pushed into place, while also pinching the gastrostomy tube shut and of course wrapping the tape around without it sticking to itself!
What kind of complete idiot decided it was a good idea to design a tube which inevitable contain stomach contents/acid/electrolytes etc but NOT include a clamp in the design still eludes me but I checked on their web site out of curiosity and the MIC gastrostomy tube definitely does not include a clamp, only the extension tubes for the MIC-KEY low profile button. All I can say is who ever designed it never had to use it and certainly never had to use it on a child!
The switch over from tube to button was a pretty horrendous mission but T seems to have recovered. He was very unhappy about it being used at all and we've still to figure out a way to hook him up without him lying down first, but he's much happier about it all now.
I was really looking forward to it, not only for the lack of dexterity challenges 6 times a day (got to do it all in reverse at the feed's end) but also so that I could speed his feeds up and make serious progress on the eating front. However that's where the step backwards part kicks in!
I cheerfully increased his flow rate from 150ml/hr which had been the maximum we could safely run the pump before without a tubing blow-out, to 200ml/hr. No probs - cool! So I sat there and figured if we can increase by 50 ml day then we'll be back to our pre-op level of 400ml/hr by this Sunday.
250 mls and no issues with a morning feed, come afternoon and it's a different story. T was nauseated and threatening to retch. Longish term followers of this saga will know that retching is territory I NEVER want to see again so my heart plummeted.
But he didn't start complaining until almost the end of the feed so I tried to stifle my fears but ditched the flow rate increase for the next day. That was today and although we had no complaints of pain or nausea today he was completely disinterested in dinner - didn't even touch his cranberry juice which is very very unusual for him. He hadn't finished his afternoon tea either which, considering it was a freshly baked brownie - is also a red flag. He said his tummy was still full - physiologically exceedingly unlikely. So I suspect his tummy is still a little bothered by the increased flow rate.
It's not too surprising. The surgery, although we think of it as just closing one hole in his tummy and making another, WAS gastric surgery and I'd guess the old stoma is sensitive and things may not feel so comfy as it stretches and pulls as his tummy fills. The surgery was only 6 weeks ago today.
And so I'll hold off on another flow rate increase tomorrow - so much for 400ml/hr by Sunday. Still we are at 250mls which is an increase of 100ml/hr since Tuesday!
His eating is patchy, has been ever since the op. I'd put it down to the long slow feeds stifling appetite but that trend still seems to be continuing. He had 5 fish fingers for lunch today - something which would have only happened on a good day BEFORE the gloopies hit. But then no dinner.
Hopefully this is just a recovery wobble and not a sign of future issues.
On reflection of course I have no idea what he could actually TOLERATE pre-op. Feeds routinely ended in retching and misery. I only had him running so fast pre-op because he'd start retching about 20 mins into the feed and 20 mins into a slower feed left a lot more feed to go down. A fast feed meant the retching started when the end was in sight and the retching didn't seem any worse.
Maybe 250mls is where he's okay??
If so I'll have to be pretty precise with timings so that he has at least 2 hours between feeds and meals - oh goodie, back on the treadmill!
And then we have N.
I thought he was making progress - no I know he was making progress - it's recorded in his food diaries.
It's so easy to focus on that particular day and not see the patterns - the food diaries are good for that.
After months and months of breakfast being a battle ground when it had been a regular, eaten feature - we finally have breakfast back. I was even getting some increases in volume at breakfast time.
I was even getting a little of something eaten at every meal mostly - more often than not!
Sure, seriously not enough, not to survive on, not a balanced diet - but still it was food going in!
And we've had a run of days with virtually nothing eaten, grumpy, obnoxious, horrible behaviour, stupidity over schoolwork and just generally every day put you through the wringer.
However not all is lost - it's the 2 steps forwards, 1 backwards thing again.
I have noticed when he stops eating it's for a shorter time period these days.
I'm also getting an increase in volume in his dinners - I weigh his meals before and after and even 3 months ago we were lucky to get 80g of anything into him. These days more normal is 100g and yesterday he clocked up 200g and tonight 150g.
Yes, there are regularly days when all he'll have is a nibble of roast potato and call it dinner but the wider picture is showing some improvement.
The other improvement I've seen which really does excite me is a growing awareness of his own needs.
He's commented on occasions that his tummy is grumbling.
He's commented he is really hungry - and not in a grandstanding, see how loud I can shout it to attract attention and because it's the worst possible time to make a spectacle, but in a "Gee I'm glad it's dinner time because I'm really hungry" kind of way.
He's also commented twice now when he has a headache coming on and that he'd better get himself a Fortisip. His new found awareness has warded off a retching spell at least twice now.
And just as I see some light at the end of the tunnel I know we have an on-coming derailment.
In their wisdom Pharmac, our drug buying company here in NZ, have cut the subsidy on oral high cal pre-mixed drinks in favour of powdered formulations. So for N that means that, when I call the pharmacy tomorrow I will be ordering his last repeat of Fortisip.
After that he will switch to a powder formula called Ensure. He hates the stuff.
Just to add to the 'fun' it's only 1 cal per ml. Fortisip is 1.5 cal per ml.
N is drinking 1 litre of Fortisip a day on a good day, an extra 200 ml on a bad day.
So he'll have to drink 1.5 litres of Ensure a day on a good day, just to maintain where he's at.
Where he's at right now has seen him have increased and improved growth and weight gain. It's seen better focus on things, generally improved behaviour, better health, faster healing and so on.
This is something I really want to maintain. I also really want to maintain the slow but happening increments in his eating.
I know, because we tried Ensure before, that what I will have is a battle to get him to drink any of it and a total lack in appetite due to drowning in the wretched supplement.
We stand to lose all the little we've gained so far.
I breaks my heart to stand and watch the crash happening in slow motion but there is NOTHING I can do to stop this.
He has to drink the stuff to stay well, growing and safe. But he won't and even if he does he won't want to eat.
I'll get him weighed again in a week and then again at the end of the Fortisip at the end of June. I'll get his weight monitored more closely by the GP in the intervening months and see the paed in August - assuming the wheels haven't fallen off badly in the meantime in terms of his weight. We then see this other doc who is the expert in eating disorders but honestly - if it's the product we have to use causing the increased problem then I can't see what she can do to help with it.
I know what we'll see in terms of the food consumed and all the other good things which have been happening. And I can't see any way out that doesn't involve surgery for N. All I can do is hope and pray that the intervening months while we have to let him deteriorate won't severely damage his slight progress in eating and attitude towards it.
It feels like so much of the time with the kids.
T has finally been able to switch to a button from his long tube. He is revelling in the liberation - time on the trampoline, faster feeds, not having to be careful of the connection between the gastrostomy tube and the feeding pump tubing, longer tubing so a longer 'leash' while he's being fed too.
I'm enjoying not worrying about the join between the tubing too, not fluffing around with sticky first aid tape trying to keep two bits of tubing pushed into place, while also pinching the gastrostomy tube shut and of course wrapping the tape around without it sticking to itself!
What kind of complete idiot decided it was a good idea to design a tube which inevitable contain stomach contents/acid/electrolytes etc but NOT include a clamp in the design still eludes me but I checked on their web site out of curiosity and the MIC gastrostomy tube definitely does not include a clamp, only the extension tubes for the MIC-KEY low profile button. All I can say is who ever designed it never had to use it and certainly never had to use it on a child!
The switch over from tube to button was a pretty horrendous mission but T seems to have recovered. He was very unhappy about it being used at all and we've still to figure out a way to hook him up without him lying down first, but he's much happier about it all now.
I was really looking forward to it, not only for the lack of dexterity challenges 6 times a day (got to do it all in reverse at the feed's end) but also so that I could speed his feeds up and make serious progress on the eating front. However that's where the step backwards part kicks in!
I cheerfully increased his flow rate from 150ml/hr which had been the maximum we could safely run the pump before without a tubing blow-out, to 200ml/hr. No probs - cool! So I sat there and figured if we can increase by 50 ml day then we'll be back to our pre-op level of 400ml/hr by this Sunday.
250 mls and no issues with a morning feed, come afternoon and it's a different story. T was nauseated and threatening to retch. Longish term followers of this saga will know that retching is territory I NEVER want to see again so my heart plummeted.
But he didn't start complaining until almost the end of the feed so I tried to stifle my fears but ditched the flow rate increase for the next day. That was today and although we had no complaints of pain or nausea today he was completely disinterested in dinner - didn't even touch his cranberry juice which is very very unusual for him. He hadn't finished his afternoon tea either which, considering it was a freshly baked brownie - is also a red flag. He said his tummy was still full - physiologically exceedingly unlikely. So I suspect his tummy is still a little bothered by the increased flow rate.
It's not too surprising. The surgery, although we think of it as just closing one hole in his tummy and making another, WAS gastric surgery and I'd guess the old stoma is sensitive and things may not feel so comfy as it stretches and pulls as his tummy fills. The surgery was only 6 weeks ago today.
And so I'll hold off on another flow rate increase tomorrow - so much for 400ml/hr by Sunday. Still we are at 250mls which is an increase of 100ml/hr since Tuesday!
His eating is patchy, has been ever since the op. I'd put it down to the long slow feeds stifling appetite but that trend still seems to be continuing. He had 5 fish fingers for lunch today - something which would have only happened on a good day BEFORE the gloopies hit. But then no dinner.
Hopefully this is just a recovery wobble and not a sign of future issues.
On reflection of course I have no idea what he could actually TOLERATE pre-op. Feeds routinely ended in retching and misery. I only had him running so fast pre-op because he'd start retching about 20 mins into the feed and 20 mins into a slower feed left a lot more feed to go down. A fast feed meant the retching started when the end was in sight and the retching didn't seem any worse.
Maybe 250mls is where he's okay??
If so I'll have to be pretty precise with timings so that he has at least 2 hours between feeds and meals - oh goodie, back on the treadmill!
And then we have N.
I thought he was making progress - no I know he was making progress - it's recorded in his food diaries.
It's so easy to focus on that particular day and not see the patterns - the food diaries are good for that.
After months and months of breakfast being a battle ground when it had been a regular, eaten feature - we finally have breakfast back. I was even getting some increases in volume at breakfast time.
I was even getting a little of something eaten at every meal mostly - more often than not!
Sure, seriously not enough, not to survive on, not a balanced diet - but still it was food going in!
And we've had a run of days with virtually nothing eaten, grumpy, obnoxious, horrible behaviour, stupidity over schoolwork and just generally every day put you through the wringer.
However not all is lost - it's the 2 steps forwards, 1 backwards thing again.
I have noticed when he stops eating it's for a shorter time period these days.
I'm also getting an increase in volume in his dinners - I weigh his meals before and after and even 3 months ago we were lucky to get 80g of anything into him. These days more normal is 100g and yesterday he clocked up 200g and tonight 150g.
Yes, there are regularly days when all he'll have is a nibble of roast potato and call it dinner but the wider picture is showing some improvement.
The other improvement I've seen which really does excite me is a growing awareness of his own needs.
He's commented on occasions that his tummy is grumbling.
He's commented he is really hungry - and not in a grandstanding, see how loud I can shout it to attract attention and because it's the worst possible time to make a spectacle, but in a "Gee I'm glad it's dinner time because I'm really hungry" kind of way.
He's also commented twice now when he has a headache coming on and that he'd better get himself a Fortisip. His new found awareness has warded off a retching spell at least twice now.
And just as I see some light at the end of the tunnel I know we have an on-coming derailment.
In their wisdom Pharmac, our drug buying company here in NZ, have cut the subsidy on oral high cal pre-mixed drinks in favour of powdered formulations. So for N that means that, when I call the pharmacy tomorrow I will be ordering his last repeat of Fortisip.
After that he will switch to a powder formula called Ensure. He hates the stuff.
Just to add to the 'fun' it's only 1 cal per ml. Fortisip is 1.5 cal per ml.
N is drinking 1 litre of Fortisip a day on a good day, an extra 200 ml on a bad day.
So he'll have to drink 1.5 litres of Ensure a day on a good day, just to maintain where he's at.
Where he's at right now has seen him have increased and improved growth and weight gain. It's seen better focus on things, generally improved behaviour, better health, faster healing and so on.
This is something I really want to maintain. I also really want to maintain the slow but happening increments in his eating.
I know, because we tried Ensure before, that what I will have is a battle to get him to drink any of it and a total lack in appetite due to drowning in the wretched supplement.
We stand to lose all the little we've gained so far.
I breaks my heart to stand and watch the crash happening in slow motion but there is NOTHING I can do to stop this.
He has to drink the stuff to stay well, growing and safe. But he won't and even if he does he won't want to eat.
I'll get him weighed again in a week and then again at the end of the Fortisip at the end of June. I'll get his weight monitored more closely by the GP in the intervening months and see the paed in August - assuming the wheels haven't fallen off badly in the meantime in terms of his weight. We then see this other doc who is the expert in eating disorders but honestly - if it's the product we have to use causing the increased problem then I can't see what she can do to help with it.
I know what we'll see in terms of the food consumed and all the other good things which have been happening. And I can't see any way out that doesn't involve surgery for N. All I can do is hope and pray that the intervening months while we have to let him deteriorate won't severely damage his slight progress in eating and attitude towards it.
Wednesday, May 11, 2011
The tangled tapestry of life
There are a million thoughts zapping round and this post has largely been sparked by a couple of Face Book conversations today, but also the time of year it is for me - laden with anniversaries as it is.
Parenting is certainly not for the faint hearted.
No one ever said it was going to be easy.
It's one of those things in life you actually have to approach in an emotional way to make a good job of it I think. As T went into surgery recently someone told me not to worry about him - if I wasn't worrying I actually wasn't doing my job.
But how do you manage those emotions, how do you harness them for the good of your parenting and not let them bog you down, stopping the progress which is vital for both you and your child/children in life's journey?
From one of the discussion today which got me thinking I wonder how you even classify emotions - one person's regret is another's grief is another's guilt. Parenting seems to be laden with opportunities for guilt but what is it really? People talk about 'mother guilt' but is guilt really a conglomeration of emotions and not actually a single emotion at all?
The tricky bit to labeling motions is that, by their nature, they aren't rational. You can't pin them down, they squirm and flip away from you under the pin of a label.
'Mother guilt', so called guilt over events, choices, even things which there was no way you could control, rationally you know that, but the shoulda, woulda, couldas will always haunt you.
I think so called guilt, in parenting terms anyway, isn't a true, single, isolatable emotion but a conglomeration.
It's a mixture of many other emotions and probably the primary elements are those of sadness, regret, frustration, anger at the situation you find yourself in, however the situation arose, what ever 'choices' got you there.
Responsibility also sneaks in there. You wouldn't feel these other things if you didn't feel responsible, responsible for this small person entrusted to you, responsible for your decisions and the outcomes - whether they could actually be predicted or not, even if you actually can't be held responsible for the events or outcomes - I told you emotions aren't rational!
Born from this emotion of responsibility I think comes the search which is almost universal in parenting, well good parenting anyway, the constant search for what is best for your particular child. It doesn't actually matter what path you took to become a parent, what hurdles you've jumped, how smooth, medical or otherwise your path has been. It is the search to do the best you can that unites us all.
The impact of the hurdles, how far you actually CAN jump, where your expectations lie, what your hopes and dreams are for that child - that is affected by your path, but not that core desire.
That's why parenting, especially modern parenting is a competitive sport in so many arenas.
Your perception of the size of those hurdles is also shaped by your path and so how much each individual bit impacts on you as you journey through your parenting. For some their biggest hurdle is being able to breast feed or not, for others your child living through another night is it. Some beg, hope, plead and pray that their child will be able to walk, talk, see.
I know that over the past few months with T's eating difficulties, N's have paled in comparison.
I had a child who WANTED to eat - but who couldn't. We were staring down the barrel of very slow continuous tube feeds and virtually no solid food for years to come.
But that doesn't make N's issues any less important, significant - or emotionally important.
It's all relative to the person and child - the molehill in one person's view may well be the biggest mountain that person's ever encountered.
Often people say to me they feel they shouldn't complain/worry/whatever about their child and their issues when so much more is going on for my boys. But their issues do not de-value someone else's mountain, just as my boys' issues are laughable to someone else with a critically ill child - they'd love to swap situations I'm sure.
But it is this emotional journey in parenting, this responsibility, guilt, whatever emotion is popping at that time that affects and guides us to be better parents.
And so when a new problem arises, new research comes out, events change and you realise that decisions you made - even those which were really beyond your control - actually may have laid the groundwork for a new issue, problem, hurdle - you react emotionally.
For those where life is more complex, there is always an element of on-going grief. I don't think you can parent a child with 'differences' without it. It is a constantly evolving spiral. Some times you are further away from it and other times it is brought into sharp relief. It may not even be a new issue or a new face of the same issue which sharpens it up. It can be anniversaries, reminders of what has happened, what could have been.
I spent time today gathering information to start an assessment process for W and I think of what might have been, how different his life could have been if only he hadn't been early. Some times that's just a twinge, other times, like now in the run up to his birthday it's a lot sharper.
I look at T reveling in eating chippies today, a huge grin over his face. Some days that's fantastic to watch, other days it's bitter sweet as I contemplate how different, how unscarred his tummy would have been if only I'd stood my ground when he was a baby, if only the doctor hadn't dropped the ball so badly.
Situations both well out of my control, times when I made the best decisions I could based on what information available at the time - but that drive to do the best I can for the kids sits and niggles.
We gave W a medication for his reflux which carried a risk of cardiac problems. At the times we made the best decision we could. The reflux caused apnoea episodes which the medication reduced. We had the 'choice' of keeping him breathing now and face potential issues later. When it looked like that had come home to roost a couple of years ago I felt dreadful, second-guessing every element of that so-called decision, feeling guilty.
It doesn't have to be a life and death situation like that to trigger that emotional response. It can be triggered in a mother with a child with behaviour issues, health problems, whatever. They were unable, for whatever reason to breast feed, and now research comes out showing reduced risk of the issue they are facing if only they'd breast fed. You can't go back on that decision, you can't change history, there may have been overwhelming medical, physical whatever reasons to totally justify or explain the feeding decision but the emotional response is there, the 'Oh crap, did I cause this? Could life have been different? What have I done?'
This is no reason NOT to put the information out there, but it is a reason for the visceral response so many have to this kind of situation.
I cannot change my kids' premature births, the damage done, the risk factors for all sorts of life long issues they face. But reading the studies, gathering the information still hurts, still leaves me with the woulda, coulda, shouldas, the emotional response. I need the information, I believe in aware, quiet watching, not expecting trouble but knowing the potential pot holes so when a stumble starts I don't wait to see the fall but jump in sooner than I otherwise would. But I don't have to LIKE the information.
Your response is often shaped by where you are on the journey too, I can handle reports of potential risks much better if I don't have a kid fresh from surgery, on the verge of a new issue being diagnosed.
Just as doctors know bad news is often greeted with anger, so those with new studies, research, information need to remember the core drive in parenting - the emotions involved.
Now I search out the information, I can choose when I'm feeling strong enough or need the information right now. So many of the 'humdrum', the 'ordinary' parenting situations are actually blasted in a way that you can't avoid. You can't choose when you are ready to receive the information. When I'm dealing with a really bad ADHD temper tantrum I do not want to open the paper and read some research saying it's diagnosed too freely and it's really bad parenting. That makes me react emotionally. You can't wonder at it really.
But the magic key, as I see it, is what you do with this emotion and how you harness it.
Bad news throws you into a hole. If you stay impossibly chipper all the time you probably aren't actually seeing the situation for what it is, taking it seriously.
You could get mad with the person bringing you the bad news - slinging insults, discrediting them in all sorts of ridiculous ways, sticking your fingers in your ears and lah lah lahing.
You can sit and cry for a while, contemplating the situation, feeling the complex and swirling emotions.
But eventually you have to do something, you have to progress the journey onwards - for your child's sake if not your own.
I personally use that time, after hitting the bottom and acknowledging it, to look at the situation and trying to map out a plan to fix or re-mediate the situation as best you can.
But again, so often, your response is part of your own unique parenting journey - is this the biggest mountain you have to climb? Is this your first stumbling point? Did you even expect a stumbling point in your journey?
In so many ways you also need this emotional fuel to keep moving, it stays with you, as part of your journey.
You don't, you can't let go, move on. It is part of what has shaped and fired your parenting - and all the emotions, in whatever form they come in, are all part of that spiral.
Parenting is certainly not for the faint hearted.
No one ever said it was going to be easy.
It's one of those things in life you actually have to approach in an emotional way to make a good job of it I think. As T went into surgery recently someone told me not to worry about him - if I wasn't worrying I actually wasn't doing my job.
But how do you manage those emotions, how do you harness them for the good of your parenting and not let them bog you down, stopping the progress which is vital for both you and your child/children in life's journey?
From one of the discussion today which got me thinking I wonder how you even classify emotions - one person's regret is another's grief is another's guilt. Parenting seems to be laden with opportunities for guilt but what is it really? People talk about 'mother guilt' but is guilt really a conglomeration of emotions and not actually a single emotion at all?
The tricky bit to labeling motions is that, by their nature, they aren't rational. You can't pin them down, they squirm and flip away from you under the pin of a label.
'Mother guilt', so called guilt over events, choices, even things which there was no way you could control, rationally you know that, but the shoulda, woulda, couldas will always haunt you.
I think so called guilt, in parenting terms anyway, isn't a true, single, isolatable emotion but a conglomeration.
It's a mixture of many other emotions and probably the primary elements are those of sadness, regret, frustration, anger at the situation you find yourself in, however the situation arose, what ever 'choices' got you there.
Responsibility also sneaks in there. You wouldn't feel these other things if you didn't feel responsible, responsible for this small person entrusted to you, responsible for your decisions and the outcomes - whether they could actually be predicted or not, even if you actually can't be held responsible for the events or outcomes - I told you emotions aren't rational!
Born from this emotion of responsibility I think comes the search which is almost universal in parenting, well good parenting anyway, the constant search for what is best for your particular child. It doesn't actually matter what path you took to become a parent, what hurdles you've jumped, how smooth, medical or otherwise your path has been. It is the search to do the best you can that unites us all.
The impact of the hurdles, how far you actually CAN jump, where your expectations lie, what your hopes and dreams are for that child - that is affected by your path, but not that core desire.
That's why parenting, especially modern parenting is a competitive sport in so many arenas.
Your perception of the size of those hurdles is also shaped by your path and so how much each individual bit impacts on you as you journey through your parenting. For some their biggest hurdle is being able to breast feed or not, for others your child living through another night is it. Some beg, hope, plead and pray that their child will be able to walk, talk, see.
I know that over the past few months with T's eating difficulties, N's have paled in comparison.
I had a child who WANTED to eat - but who couldn't. We were staring down the barrel of very slow continuous tube feeds and virtually no solid food for years to come.
But that doesn't make N's issues any less important, significant - or emotionally important.
It's all relative to the person and child - the molehill in one person's view may well be the biggest mountain that person's ever encountered.
Often people say to me they feel they shouldn't complain/worry/whatever about their child and their issues when so much more is going on for my boys. But their issues do not de-value someone else's mountain, just as my boys' issues are laughable to someone else with a critically ill child - they'd love to swap situations I'm sure.
But it is this emotional journey in parenting, this responsibility, guilt, whatever emotion is popping at that time that affects and guides us to be better parents.
And so when a new problem arises, new research comes out, events change and you realise that decisions you made - even those which were really beyond your control - actually may have laid the groundwork for a new issue, problem, hurdle - you react emotionally.
For those where life is more complex, there is always an element of on-going grief. I don't think you can parent a child with 'differences' without it. It is a constantly evolving spiral. Some times you are further away from it and other times it is brought into sharp relief. It may not even be a new issue or a new face of the same issue which sharpens it up. It can be anniversaries, reminders of what has happened, what could have been.
I spent time today gathering information to start an assessment process for W and I think of what might have been, how different his life could have been if only he hadn't been early. Some times that's just a twinge, other times, like now in the run up to his birthday it's a lot sharper.
I look at T reveling in eating chippies today, a huge grin over his face. Some days that's fantastic to watch, other days it's bitter sweet as I contemplate how different, how unscarred his tummy would have been if only I'd stood my ground when he was a baby, if only the doctor hadn't dropped the ball so badly.
Situations both well out of my control, times when I made the best decisions I could based on what information available at the time - but that drive to do the best I can for the kids sits and niggles.
We gave W a medication for his reflux which carried a risk of cardiac problems. At the times we made the best decision we could. The reflux caused apnoea episodes which the medication reduced. We had the 'choice' of keeping him breathing now and face potential issues later. When it looked like that had come home to roost a couple of years ago I felt dreadful, second-guessing every element of that so-called decision, feeling guilty.
It doesn't have to be a life and death situation like that to trigger that emotional response. It can be triggered in a mother with a child with behaviour issues, health problems, whatever. They were unable, for whatever reason to breast feed, and now research comes out showing reduced risk of the issue they are facing if only they'd breast fed. You can't go back on that decision, you can't change history, there may have been overwhelming medical, physical whatever reasons to totally justify or explain the feeding decision but the emotional response is there, the 'Oh crap, did I cause this? Could life have been different? What have I done?'
This is no reason NOT to put the information out there, but it is a reason for the visceral response so many have to this kind of situation.
I cannot change my kids' premature births, the damage done, the risk factors for all sorts of life long issues they face. But reading the studies, gathering the information still hurts, still leaves me with the woulda, coulda, shouldas, the emotional response. I need the information, I believe in aware, quiet watching, not expecting trouble but knowing the potential pot holes so when a stumble starts I don't wait to see the fall but jump in sooner than I otherwise would. But I don't have to LIKE the information.
Your response is often shaped by where you are on the journey too, I can handle reports of potential risks much better if I don't have a kid fresh from surgery, on the verge of a new issue being diagnosed.
Just as doctors know bad news is often greeted with anger, so those with new studies, research, information need to remember the core drive in parenting - the emotions involved.
Now I search out the information, I can choose when I'm feeling strong enough or need the information right now. So many of the 'humdrum', the 'ordinary' parenting situations are actually blasted in a way that you can't avoid. You can't choose when you are ready to receive the information. When I'm dealing with a really bad ADHD temper tantrum I do not want to open the paper and read some research saying it's diagnosed too freely and it's really bad parenting. That makes me react emotionally. You can't wonder at it really.
But the magic key, as I see it, is what you do with this emotion and how you harness it.
Bad news throws you into a hole. If you stay impossibly chipper all the time you probably aren't actually seeing the situation for what it is, taking it seriously.
You could get mad with the person bringing you the bad news - slinging insults, discrediting them in all sorts of ridiculous ways, sticking your fingers in your ears and lah lah lahing.
You can sit and cry for a while, contemplating the situation, feeling the complex and swirling emotions.
But eventually you have to do something, you have to progress the journey onwards - for your child's sake if not your own.
I personally use that time, after hitting the bottom and acknowledging it, to look at the situation and trying to map out a plan to fix or re-mediate the situation as best you can.
But again, so often, your response is part of your own unique parenting journey - is this the biggest mountain you have to climb? Is this your first stumbling point? Did you even expect a stumbling point in your journey?
In so many ways you also need this emotional fuel to keep moving, it stays with you, as part of your journey.
You don't, you can't let go, move on. It is part of what has shaped and fired your parenting - and all the emotions, in whatever form they come in, are all part of that spiral.
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