Quick Lessons on how to Melt Down An Aspie -
Lesson One -
Unpredictable reflux episodes - happening any time anywhere with varying degrees of pain ranging from a quick ow to full on taste blood and have dizzy spells because of a nerve irritation causing cardiac changes.
Lesson 2 -
Give them medication which needs to be taken 30 mins before eating each morning and watch them stress when you suggest 1 min before the time is up that they could have some weetbix now - repeat each morning for months on end.
Lesson 3 -
Do various medical investigations - stressful in it's own right and decide that surgery is the best option to deal with the reflux but wait for a couple of weeks for test results.
Lesson 4 -
Get test results and possibly query doing another test which will really set off your sensory issues - and set surgery indefinitely but that it will happen.
Lesson 5 -
Decide the next test is too much and we just want to get on and book the surgery as the surgeon said we could do - but be unable to raise the surgeon...for 3 weeks.
Lesson 6 -
Chase up the surgeon's nurse only to get a call the next day saying surgery's in a week and a half - watch the child completely fall to pieces.
Lesson 7 -
Pull the kid together and tell them it can't happen then because their father is going to be away so there's no childcare for a hospital stay.
Lesson 7 -
Call the nurse, who calls the surgeon and then calls you and we finally get a date set for 1 December.
Fall to pieces a little yourself as you realise that you are about to put another child through major surgery and instead of just thinking and talking about it it's really going to happen.
Child falls to pieces all over again.
Our on-going saga with life with 3 prematurely born boys. The fun doesn't end at the NICU door, even for 'late' preemies.
Wednesday, October 28, 2009
Friday, October 9, 2009
Been a while...
Well, it's been a while and life keeps on moving.
Last month was hectic with 16 medical or related appointments - this month it's a much more manageable projected 10 planned appointments. Of course that's barring disasters but still, touch wood it'll all be fine!
I can't remember where I was up to with kid updates but things keep changing there too.
T's speech was improving and has recently gone down the tubes again too. The SLT did say to expect that so I'm not too concerned - and T has another session on Tues or Wed next week anyway.
On the W front we're still waiting to talk to the surgeon. He's said that W does need surgery at some point for his reflux and our view is, since it's having an effect on his quality of life etc that sooner is better than later. There are reactive cell changes going on in response to the reflux - basically that means he has some but not all the markers of oesophagitis - my guess would be that he has some but not all because he's on medication so it's helping but not stopping the reflux.
The surgeon was suggesting possibly doing a pH probe before going to surgery but was prepared to do the surgery without doing a probe. Now - anyone who has read their way through this blog knows what I think of probes and their reliability and reproducibility (69% reproducibility rate in paeds use) so I'm not going to do another anti probe rant here but needless to say it didn't take us too long to decide against doing a probe!
We should be in contact with the surgeon tis or next week and can hopefully get the surgery booked for December. Otherwise he'll probably have to wait until Feb.
I hate the idea of doing it - at all. But I also know it's the best option for him now and if we have to do it then let's just do it already! It's just over 2 years since N kicked this all off with his fundoplication and in the past two years I have taken a kid to theatre 4 times. I'm really sick of it, the stress and the trauma of it all. It never gets any easier, it doesn't matter how often you do it or how old the kid is. Let's just do it and start 2010 as a good health and no surgery year!
We're working with N on his abysmal eating at the moment too - the paed has pulled the Fortisips for 2 weeks to see if his eating kicks in. Neither of us are holding our breath - it's been 5 days now and while he's eating a bit faster and so less stressful he's not eating any more than he was without them - and currently 500g down. At his current rate, when we go back in 2 weeks he'll be 1.4kg down. He didn't even eat his lunch after spending all morning at the park yesterday.
Other than the kids there have been a lot of other thoughts whirling round in my head lately - mostly prematurity related.
A number of months ago now my father said that we shouldn't count W as a 33 weeker any more because he's 11 now and too old for that.
There has been discussion in the papers here about how early is too early to save, and a couple of cases of 21-23 weekers left without NICU care - and of course if we save these babies then where are the abortion marker dates etc.
So - who is a prem? What does being a prem mean? When are you 'too old to be a prem any more'? As well as the more complex and ethical debate on viability, what's 'too disabled' and who is going to help care for these kids as they grow anyway?
Here in the Catholic Church we have what's known as Respect Life Sunday this Sunday. The monthly paper said on the front page that as part of that they had an article about the difficulties of getting care and support for disabled children.
I got quite excited and eagerly flicked to that section...only to discover it was a mother talking about what it was like 30 odd years ago with her severely autistic son.
Why could they not have got a parent going through it all NOW? Why could they have not got kids on the more marginal aspects - like mine? Everyone knows that basically it's incredibly hard and funding is near non-existent for those severely impacted. What people congratulate themselves on is tht at least we're serving the minorly impacted kids out there in our community. BUT WE'RE NOT!
That's the dirty dark secret, that while resources are scarce for the severely disabled, they are virtually non existent for the less impacted, the multiple 'minor' impacted kids are struggling by with nothing - unless the parents make it their full time job to find out how the system works and scream until their child gets some help, which is often so fragmented that they wind up with input from multiple agencies individually and on seperate waiting lists.
So you tackle one aspect of a problem by finally getting to the top of a list (if you are allowed on it in the first place - if you are disabled enough!) start work on it and either get to the end of the problem or discover there's another facet which actually needs a different therapist so you join a different waiting list.
In the intervening 12-18 months while you wait, the old problem has reverted to the way it was because the first therapist couldn't quite help with it fully because there was this other aspect you needed to deal with. So you re-join your first waiting list and hope madly that they'll both come up together!
So many people think that arriving 4, 6, 8 weeks early really isn't that significant, isn't really prem, is something you grow out of - magically get 'too old to be a prem'.
But life's not like that for many of these late prems, the invisable prems, the 'not really prem'.
The stats are showing that even 36 weekers have a 5 fold increase in ADHD, significantly more 32 to 36 weekers need extra help in school with their reading, writing and maths than their full term peers. You are meant to float around, cushioned from touch, light and sound for 40 weeks and when that gets cut short it has affects on their wiring.
The late premature children even have a rate of feeding problems comparable to that of much more significantly premature babies to to the age of around 2 years old. It is now being acknowledged that when feeding problems start to occur in the late pre-term cohort they actually need as much specilised input as a 28 or so weeker. They don't get it because their prematurity risk is ignored and so the problems compound.
So in answer to one of the questions posed at the start of this - how old is 'too old to be a prem any more' in my book the answer is never. While it is a risk factor which needs to be added in developmentally, educationally and, as he ages, medically then it always has to be in mind.
Some 36 weekers come out fine or the impacts are so minor that you wouldn't know it unless you did a detailed MRI of their brain and found the 'premmy brain'. That's wonderful and fantastic for them and their families - they've got to the "can't pick them out on the playground, what were they wearing this morning?" stage. W, thanks to his Asperger's (due to prematurity) will never get to that indistinguishable point. N, with his ADHD (due to prematurity) won't reliably get to that point. Who knows with T but if, as is suspected there is some kind of language processing problem going on, then he won't either.
They have to live with the marks and affects of their prematurity every day of their lives, it has marked, affected and changed the kids from who they might have been. Some changes may well be positive ones but they are changes none the less. Their prematurity and struggles have also marked and changed me - as a person but particularly as a mother. Again, some of the changes may well be positives, but they are changes.
Prematurity will always be with us - and they will always be premature, among other things.
But first and foremost they will always be my W, N and T - my wonderful, amazing beings of whom I am intensely, crazily proud!
Last month was hectic with 16 medical or related appointments - this month it's a much more manageable projected 10 planned appointments. Of course that's barring disasters but still, touch wood it'll all be fine!
I can't remember where I was up to with kid updates but things keep changing there too.
T's speech was improving and has recently gone down the tubes again too. The SLT did say to expect that so I'm not too concerned - and T has another session on Tues or Wed next week anyway.
On the W front we're still waiting to talk to the surgeon. He's said that W does need surgery at some point for his reflux and our view is, since it's having an effect on his quality of life etc that sooner is better than later. There are reactive cell changes going on in response to the reflux - basically that means he has some but not all the markers of oesophagitis - my guess would be that he has some but not all because he's on medication so it's helping but not stopping the reflux.
The surgeon was suggesting possibly doing a pH probe before going to surgery but was prepared to do the surgery without doing a probe. Now - anyone who has read their way through this blog knows what I think of probes and their reliability and reproducibility (69% reproducibility rate in paeds use) so I'm not going to do another anti probe rant here but needless to say it didn't take us too long to decide against doing a probe!
We should be in contact with the surgeon tis or next week and can hopefully get the surgery booked for December. Otherwise he'll probably have to wait until Feb.
I hate the idea of doing it - at all. But I also know it's the best option for him now and if we have to do it then let's just do it already! It's just over 2 years since N kicked this all off with his fundoplication and in the past two years I have taken a kid to theatre 4 times. I'm really sick of it, the stress and the trauma of it all. It never gets any easier, it doesn't matter how often you do it or how old the kid is. Let's just do it and start 2010 as a good health and no surgery year!
We're working with N on his abysmal eating at the moment too - the paed has pulled the Fortisips for 2 weeks to see if his eating kicks in. Neither of us are holding our breath - it's been 5 days now and while he's eating a bit faster and so less stressful he's not eating any more than he was without them - and currently 500g down. At his current rate, when we go back in 2 weeks he'll be 1.4kg down. He didn't even eat his lunch after spending all morning at the park yesterday.
Other than the kids there have been a lot of other thoughts whirling round in my head lately - mostly prematurity related.
A number of months ago now my father said that we shouldn't count W as a 33 weeker any more because he's 11 now and too old for that.
There has been discussion in the papers here about how early is too early to save, and a couple of cases of 21-23 weekers left without NICU care - and of course if we save these babies then where are the abortion marker dates etc.
So - who is a prem? What does being a prem mean? When are you 'too old to be a prem any more'? As well as the more complex and ethical debate on viability, what's 'too disabled' and who is going to help care for these kids as they grow anyway?
Here in the Catholic Church we have what's known as Respect Life Sunday this Sunday. The monthly paper said on the front page that as part of that they had an article about the difficulties of getting care and support for disabled children.
I got quite excited and eagerly flicked to that section...only to discover it was a mother talking about what it was like 30 odd years ago with her severely autistic son.
Why could they not have got a parent going through it all NOW? Why could they have not got kids on the more marginal aspects - like mine? Everyone knows that basically it's incredibly hard and funding is near non-existent for those severely impacted. What people congratulate themselves on is tht at least we're serving the minorly impacted kids out there in our community. BUT WE'RE NOT!
That's the dirty dark secret, that while resources are scarce for the severely disabled, they are virtually non existent for the less impacted, the multiple 'minor' impacted kids are struggling by with nothing - unless the parents make it their full time job to find out how the system works and scream until their child gets some help, which is often so fragmented that they wind up with input from multiple agencies individually and on seperate waiting lists.
So you tackle one aspect of a problem by finally getting to the top of a list (if you are allowed on it in the first place - if you are disabled enough!) start work on it and either get to the end of the problem or discover there's another facet which actually needs a different therapist so you join a different waiting list.
In the intervening 12-18 months while you wait, the old problem has reverted to the way it was because the first therapist couldn't quite help with it fully because there was this other aspect you needed to deal with. So you re-join your first waiting list and hope madly that they'll both come up together!
So many people think that arriving 4, 6, 8 weeks early really isn't that significant, isn't really prem, is something you grow out of - magically get 'too old to be a prem'.
But life's not like that for many of these late prems, the invisable prems, the 'not really prem'.
The stats are showing that even 36 weekers have a 5 fold increase in ADHD, significantly more 32 to 36 weekers need extra help in school with their reading, writing and maths than their full term peers. You are meant to float around, cushioned from touch, light and sound for 40 weeks and when that gets cut short it has affects on their wiring.
The late premature children even have a rate of feeding problems comparable to that of much more significantly premature babies to to the age of around 2 years old. It is now being acknowledged that when feeding problems start to occur in the late pre-term cohort they actually need as much specilised input as a 28 or so weeker. They don't get it because their prematurity risk is ignored and so the problems compound.
So in answer to one of the questions posed at the start of this - how old is 'too old to be a prem any more' in my book the answer is never. While it is a risk factor which needs to be added in developmentally, educationally and, as he ages, medically then it always has to be in mind.
Some 36 weekers come out fine or the impacts are so minor that you wouldn't know it unless you did a detailed MRI of their brain and found the 'premmy brain'. That's wonderful and fantastic for them and their families - they've got to the "can't pick them out on the playground, what were they wearing this morning?" stage. W, thanks to his Asperger's (due to prematurity) will never get to that indistinguishable point. N, with his ADHD (due to prematurity) won't reliably get to that point. Who knows with T but if, as is suspected there is some kind of language processing problem going on, then he won't either.
They have to live with the marks and affects of their prematurity every day of their lives, it has marked, affected and changed the kids from who they might have been. Some changes may well be positive ones but they are changes none the less. Their prematurity and struggles have also marked and changed me - as a person but particularly as a mother. Again, some of the changes may well be positives, but they are changes.
Prematurity will always be with us - and they will always be premature, among other things.
But first and foremost they will always be my W, N and T - my wonderful, amazing beings of whom I am intensely, crazily proud!
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