We did our 2 weekly weigh in with the GP on Friday - the good news is it looks like T might have gained 300-400g.
The proviso is that it was a different time of the day and it's still under 12kg but higher than it was. He was higher than 11.5 2 weeks before than so he's at least a fraction up now for a month.
We discussed his retching, spilling, reluctance to eat and his spitting out food - and then he spat out his highly desired jelly beans, all over her floor...
She agreed that it is NOT an attention seeking behaviour.
We're now trying to prop Thomas up on pillows in his bed - in the hopes he'll sleep better and STAY in his own bed. We've noticed that he comes to our bed, settles himself virtually upright and promptly goes to sleep, only to wake once he slips down again.
Saturday I gave him his omeprazole (aka pizza box medicine!) and his customary sweet as a reward for taking it - and he spat out a part chewed jelly dinosaur. I can't even seem to feed this child sweets any more.
He had his hair cut on Friday afternoon and the hairdresser and I were chatting and we were talking about food, eating etc and her comment was I just had to try harder to get him off bottles and eating properly. Yeah, and if it were that easy do you not think I'd have achieved this by now??
I went to work on Sat morning, after T had spat out his dino, almost in tears. I nearly popped in to see the hairdresser to tell her of the morning's events. Yeah, sure, he'll eat if I just try harder - but I can't even get him to eat a sweet any more!!
I came home after work to discover that P had had lots of visitors who had all been coffeed, caked - but the younger two actually eat? Um, no. The initial refusal they give to food had been accepted as the final word on the matter!
Needless to say a detailed description of how hard you actually have to work to get the younger two to eat was delivered - and maybe he has a little understanding of what I actually do with my day!
Anyway, the GP has also found out what I have about the Feeding Team and so she's going to do an urgent referral to them for T. We have to chuck everything we can possibly think of into the referral in the hopes they will deem him meeting the criteria and be 'allowed' in. If they decide he doesn't I don't know what we do to get him to learn to eat!
It's nearly October now, it'll take a couple of months probably before he gets to see anyone so nothing'll happen on that front until next year thanks to the big summer shutdown.
But I despair - how are we going to persuade him to eat when he's maxed out the meds and clearly still symptomatic? I wish we hadn't opted out of surgery - that was really the wrong decision and I was uneasy about it at the time. Never mind - at least by the time we see the paed, get back to the surgeon etc he will have well and truely done his suggested 6 months on the omeprazole and so hopefully the surgeon will be happier to work on him.
I just can't see any end in sight with this - and after battling eating problems with W, N and now T we've been fighting this monster for over 10 years - and I'm battle weary.
I don't know how this is going to end - but I'm NOT looking forward to meeting this dietician. Never mind, I've got to hope for the best...
Our on-going saga with life with 3 prematurely born boys. The fun doesn't end at the NICU door, even for 'late' preemies.
Sunday, September 28, 2008
Thursday, September 25, 2008
Time Ticks on
Okay, let me start by saying I'm frustrated.
Nothing's happened.
That's in part why I'm frustrated!
I finally got hold of the speech therapist helping with T's eating earlier this week. She was very positive about the fact that we've changed dieticians. Apparently this new one is on this mythical 'feeding team' I've caught whispers about - and yes, we have missed on a referral to the team.
Get this - it's part of the Child Development Team and you have to have more than 'just' feeding problems to qualify! It may be that because T is speech delayed he might make it to the criteria. Well, the obvious answer is let him starve, let his development lag and then, hey presto, he'll qualify for the help he desperately needs and with the help his development and possibly whole future wouldn't be endangered.
Obviously I wouldn't ACTUALLY do this - but the situation is ridiculous!
We discussed T's relatively recent increase in pain, gagging, spilling etc and she seemed to think he's doing for attention - so why does he wake in the middle of the night, come to our bed, get propped up high on pillows and promptly go to sleep until he slips down?
Why has he slept through without waking us when I give him pain meds as we go to bed?
Why does he spit out food when no one's looking in a corner and doesn't bring attention to it? Why does he say 'tummy hurts? Food too heavy?'
It's not like I then go jumping up and down, fuss or give him huge cuddles and anything he wants. It's 'Oh, dear, give it a rub, never mind'.
She said that the new dietician will 'have something to say' about T's brownie intake and that we need to cut it. I have to feed my kid something! This is ridiculous - now I'm to be criticised for ensuring he gets some kind of calorie intake??!
So I tried an experiment yesterday and refused to give him cake unless he'd eaten a couple of mouthfuls of bread. This is a kid who had had only 200 mls of formula all day at that point so wasn't full on that, had had 2 bites of bread for breakfast and 1 tiny brownie for morning tea - and it was 3:30pm!!
He refused and wanted to throw his bread to the birds - 'Birds hungry!' 'Birds turn now!'
In the end he put his dummy in his mouth and went away to play. He didn't get anything more of anything before dinner - and ate 7 strands of spagetti and 1 mouthful of mince chow mein for dinner.
Breakfast today, I hear you ask? Um, eventually had 1/2 a slice of plain bread by 9:30 when he'd been up since 5:30...this child does not seem to feel hunger!
Who knows what his weight will be when he's weighed again tomorrow.
Oh and the speech therapist's plan for T's eating - we wait until we see the dietician on 30 Oct! He first saw this woman in late Feb - early April! Still no plan and no improvement.
And so we keep on keeping on - what else is there to do?
Nothing's happened.
That's in part why I'm frustrated!
I finally got hold of the speech therapist helping with T's eating earlier this week. She was very positive about the fact that we've changed dieticians. Apparently this new one is on this mythical 'feeding team' I've caught whispers about - and yes, we have missed on a referral to the team.
Get this - it's part of the Child Development Team and you have to have more than 'just' feeding problems to qualify! It may be that because T is speech delayed he might make it to the criteria. Well, the obvious answer is let him starve, let his development lag and then, hey presto, he'll qualify for the help he desperately needs and with the help his development and possibly whole future wouldn't be endangered.
Obviously I wouldn't ACTUALLY do this - but the situation is ridiculous!
We discussed T's relatively recent increase in pain, gagging, spilling etc and she seemed to think he's doing for attention - so why does he wake in the middle of the night, come to our bed, get propped up high on pillows and promptly go to sleep until he slips down?
Why has he slept through without waking us when I give him pain meds as we go to bed?
Why does he spit out food when no one's looking in a corner and doesn't bring attention to it? Why does he say 'tummy hurts? Food too heavy?'
It's not like I then go jumping up and down, fuss or give him huge cuddles and anything he wants. It's 'Oh, dear, give it a rub, never mind'.
She said that the new dietician will 'have something to say' about T's brownie intake and that we need to cut it. I have to feed my kid something! This is ridiculous - now I'm to be criticised for ensuring he gets some kind of calorie intake??!
So I tried an experiment yesterday and refused to give him cake unless he'd eaten a couple of mouthfuls of bread. This is a kid who had had only 200 mls of formula all day at that point so wasn't full on that, had had 2 bites of bread for breakfast and 1 tiny brownie for morning tea - and it was 3:30pm!!
He refused and wanted to throw his bread to the birds - 'Birds hungry!' 'Birds turn now!'
In the end he put his dummy in his mouth and went away to play. He didn't get anything more of anything before dinner - and ate 7 strands of spagetti and 1 mouthful of mince chow mein for dinner.
Breakfast today, I hear you ask? Um, eventually had 1/2 a slice of plain bread by 9:30 when he'd been up since 5:30...this child does not seem to feel hunger!
Who knows what his weight will be when he's weighed again tomorrow.
Oh and the speech therapist's plan for T's eating - we wait until we see the dietician on 30 Oct! He first saw this woman in late Feb - early April! Still no plan and no improvement.
And so we keep on keeping on - what else is there to do?
Sunday, September 21, 2008
Circling the drain again
I don't know. I really just don't know any more.
T's feeding therapist is apparently going to call back on Monday morning - I missed her call on Friday.
I'm going to ask for an appointment, going to get rid of the other two and get P to come too.
I'm persisting in the bottle versus cup fight. It was a battle the first time and he didn't drink much for a few days and then gave in. We're on day 2 of this round. He drank a grand total of 230mls all day. He also ate extremely little. He had 1 mouthful of dinner and basically didn't eat any breakfast. He hadn't eaten lunch or afternoon tea either. Hunger clearly doesn't register with this kid.
Interestingly, and sadly, with the reduced formula intake his behaviour, happiness and activity levels slid right back to where they had been pre-Poly Cal. So clearly the Poly Cal and his formula are the ONLY things actually keeping him on track and he can't afford to slow down on a drop. He really is formula dependent - at 3 years 5 months.
I just don't know how or when this is going to end.
He's clearly still in pain, we can't medicate any more than he is, and surgery's a no go for now.
Feeding therapy is going to be useless if it still hurts - and if we push it now when it does still hurt then when it doesn't he's not going to believe us.
P wants me to alternate bottles with cups as he has to get his formula. I think that's just going to prolong the battle and make it confusing for T. It has to be one or the other.
All the formula T drank yesterday was from his nap time bottle! So he hung out for that. Wretched child.
If I don't see an improvement tomorrow or his energy levels dip right out again then I'm going to give in I guess.
What else can I do?
This is a kid who, given free access to potato chips, feeds them to a dog rather than himself!
He gives you back a lollipop half eaten.
I can't feed him.
Just somtimes this whole thing gets me down. What kind of mother can't get her kid to eat or drink enough to survive healthily and thrive?
I know we'll get there in the end but it just seems to stretch out into never never land.
T's feeding therapist is apparently going to call back on Monday morning - I missed her call on Friday.
I'm going to ask for an appointment, going to get rid of the other two and get P to come too.
I'm persisting in the bottle versus cup fight. It was a battle the first time and he didn't drink much for a few days and then gave in. We're on day 2 of this round. He drank a grand total of 230mls all day. He also ate extremely little. He had 1 mouthful of dinner and basically didn't eat any breakfast. He hadn't eaten lunch or afternoon tea either. Hunger clearly doesn't register with this kid.
Interestingly, and sadly, with the reduced formula intake his behaviour, happiness and activity levels slid right back to where they had been pre-Poly Cal. So clearly the Poly Cal and his formula are the ONLY things actually keeping him on track and he can't afford to slow down on a drop. He really is formula dependent - at 3 years 5 months.
I just don't know how or when this is going to end.
He's clearly still in pain, we can't medicate any more than he is, and surgery's a no go for now.
Feeding therapy is going to be useless if it still hurts - and if we push it now when it does still hurt then when it doesn't he's not going to believe us.
P wants me to alternate bottles with cups as he has to get his formula. I think that's just going to prolong the battle and make it confusing for T. It has to be one or the other.
All the formula T drank yesterday was from his nap time bottle! So he hung out for that. Wretched child.
If I don't see an improvement tomorrow or his energy levels dip right out again then I'm going to give in I guess.
What else can I do?
This is a kid who, given free access to potato chips, feeds them to a dog rather than himself!
He gives you back a lollipop half eaten.
I can't feed him.
Just somtimes this whole thing gets me down. What kind of mother can't get her kid to eat or drink enough to survive healthily and thrive?
I know we'll get there in the end but it just seems to stretch out into never never land.
Thursday, September 18, 2008
Putting your best foot forward!
The saga with P's foot continues onward...
The MRI has shown considerable inflamation and so we're doing the same dance with him that we have been doing with T - same meds...again...even though it didn't work the first time.
He's back on anti-inflamatories, the ones which made him dopey - because he didn't think to tell the doc that - for some considerable time.
It's the same old, same old - if it's not improving in x months then come back, it's going to be a long term problem, slow healing etc.
At least with his orthotic in place now - a mission in it's own right, over a week and a half and the wrong sent out 3 times - he's much more comfortable and happier.
But none of these 'solutions' explain the rash he gets coming up and down unpredictably, or the general feeling of unwellness which keeps occuring.
Gee, I LOVE the medical limbo - and now I can do it in two arenas at the same time!!!
And as for T, he really seems to love his current pothole. Yes, he's happy, yes he's energetic, yes he's doing what he needs to do - oh, yeah, except EAT!
His eating went down badly over his run of bugs and it just isn't recovering. He isn't eating much at all, he isn't gaining, and since I'm fighting the bottle battle all over again he's not drinking much!
But what worries me, and I'm definately going to raise with the GP is his periodic complaints of a sore tummy. I have tried to tell him he must be hungry and to get him to eat something but it doesn't seem to help him. The other night he doubled over saying "Tummy hurts!" He was gasping/panting and had tears in his eyes. After I'd comforted him and he felt better he decided, not unreasonably, that that was it for dinner!
Whenever you ask where his sore tummy is he always points to where you'd expect reflux pain.
As if that wasn't bad enough he's just taken to spitting out chewed up food instead of swallowing it! He's done it 4 times over 4 meals now - he shoves probably 2-3 mouthfuls in at once, gaggs and then spits it out on the floor - or fishes it out and throws it on the floor.
I haven't heard back from our GP about where we're at with a feeding team kind of approach, we don't see the dietician until 30 Oct or the paed until 27 Nov.
My feeling is we get him checked out by the GP with these 'new' reflux symptoms, we can't medicate him any more than he already is. So then we wait until we see the dietician - just going in circles until then. There's no point in bringing the paed appointment forward because we need time to try out the dietician's suggestions - I hope she has some!
And we really question where we're going to when we see the paed and possibly go back to the surgeon. The surgeon said to try the omeprazole for 6 months - we're up to 7 weeks now, by Nov we'll be up to about 4 months. Thanks to Christmas and the summer bringing everything to a screaming halt we'll be well over the 6 months by the time things return to normal and can possibly do surgery. The poor kid will be 4 in April - enough's enough!!
Gee, the medical limbo's the most exciting game ever! I'm soooo glad I've been given the chance to learn to do it so well!
The MRI has shown considerable inflamation and so we're doing the same dance with him that we have been doing with T - same meds...again...even though it didn't work the first time.
He's back on anti-inflamatories, the ones which made him dopey - because he didn't think to tell the doc that - for some considerable time.
It's the same old, same old - if it's not improving in x months then come back, it's going to be a long term problem, slow healing etc.
At least with his orthotic in place now - a mission in it's own right, over a week and a half and the wrong sent out 3 times - he's much more comfortable and happier.
But none of these 'solutions' explain the rash he gets coming up and down unpredictably, or the general feeling of unwellness which keeps occuring.
Gee, I LOVE the medical limbo - and now I can do it in two arenas at the same time!!!
And as for T, he really seems to love his current pothole. Yes, he's happy, yes he's energetic, yes he's doing what he needs to do - oh, yeah, except EAT!
His eating went down badly over his run of bugs and it just isn't recovering. He isn't eating much at all, he isn't gaining, and since I'm fighting the bottle battle all over again he's not drinking much!
But what worries me, and I'm definately going to raise with the GP is his periodic complaints of a sore tummy. I have tried to tell him he must be hungry and to get him to eat something but it doesn't seem to help him. The other night he doubled over saying "Tummy hurts!" He was gasping/panting and had tears in his eyes. After I'd comforted him and he felt better he decided, not unreasonably, that that was it for dinner!
Whenever you ask where his sore tummy is he always points to where you'd expect reflux pain.
As if that wasn't bad enough he's just taken to spitting out chewed up food instead of swallowing it! He's done it 4 times over 4 meals now - he shoves probably 2-3 mouthfuls in at once, gaggs and then spits it out on the floor - or fishes it out and throws it on the floor.
I haven't heard back from our GP about where we're at with a feeding team kind of approach, we don't see the dietician until 30 Oct or the paed until 27 Nov.
My feeling is we get him checked out by the GP with these 'new' reflux symptoms, we can't medicate him any more than he already is. So then we wait until we see the dietician - just going in circles until then. There's no point in bringing the paed appointment forward because we need time to try out the dietician's suggestions - I hope she has some!
And we really question where we're going to when we see the paed and possibly go back to the surgeon. The surgeon said to try the omeprazole for 6 months - we're up to 7 weeks now, by Nov we'll be up to about 4 months. Thanks to Christmas and the summer bringing everything to a screaming halt we'll be well over the 6 months by the time things return to normal and can possibly do surgery. The poor kid will be 4 in April - enough's enough!!
Gee, the medical limbo's the most exciting game ever! I'm soooo glad I've been given the chance to learn to do it so well!
Thursday, September 11, 2008
T throws a tantrum!
Yes, I know, not usually the kind of thing you celebrate - but, this is T we're talking about!
I was forced by necessity to take all 3 boys out lingerie shopping yesterday. I usually try to get rid of at least a couple of them so I can actually think and choose rather than just grabbing the first thing that I know will work! Anyway T was having a ball running around and swiping items off the stands. His wicked sense of humour has re-asserted itself - it's very hard to discipline a kid who is running up to padded bras and pushing the cups while going "Honk! Honk!"
It was great (although very disruptive!) to see his sense of fun and his higher energy levels in his running. However, especially since his energy is improving, it's essential to maintain control. The boys wanted to go to the Toy Department after I'd finished to drool over the toys they'd buy if only they had a spare $300. So W and N got to go - and T had to stay with me in the Baby Dept next door! He screamed, fought, cried, went rigid and generally packed a major hissy fit! When I went to the counter to buy something I had to put him down and he took off! I excused myself and fished him back - and he gave in after that and was very penitential and sad but knew exactly why it had happened. But it's really wonderful that he had the fire and energy to misbehave!
But while it's wonderful to revel in this we need to keep riding the wave and actually move towards actually sorting him out. His fluid intake seems to have increased and solids intake decreased since starting the Polycal - so on paper this is probably a failure. But if you make him decrease his fluid intake his solid intake doesn't increase and he needs the calories so what do you do?
I'm probably making a bigger feeding problem for us further down the track but right now the improvements in energy, exploration and development are clear indicators he's starting to get what he needs and I'm not going to do anything to stop that and so I'm not going to stop pushing the formula. He's always preferred to drink than eat and at least with the combination of nutritionally complete formula and Polycal he'll be getting a decent diet.
We've got a referral to another dietician who, being part of the hospital, should be able to work closely with the feeding therapist, but we can't see her until 30 Oct so I've got until then before someone throws a major hissy fit about his lack of solid food!
Currently no one has come up with an action plan on HOW we're actually going to get this child to eat enough to actually sustain him and no one is supporting us in the battle. My priority has to be his mental and physical development and the lack calories endangers that. We and he are the only ones who have to deal with the consequences of that and as far as I'm concerned we need to focus on the much bigger long term picture here. I'm sure he'll learn to eat eventually but you can never get back that time and brain development.
I have discovered that there is a clinical psych, SLT and I think dietician associated with the Child Development Unit that is alongside the hospital. I'm not sure if we've somehow got into the hospital system rather than that or if they are one and the same or what the issue is here.
When T goes to the GP for his weigh in tomorrow I'm going to ask which bit of the system we're in, if they are all the same and which might be best for T. He needs a concerted, sensible team approach if we are to get anywhere.
Wish me luck!
I was forced by necessity to take all 3 boys out lingerie shopping yesterday. I usually try to get rid of at least a couple of them so I can actually think and choose rather than just grabbing the first thing that I know will work! Anyway T was having a ball running around and swiping items off the stands. His wicked sense of humour has re-asserted itself - it's very hard to discipline a kid who is running up to padded bras and pushing the cups while going "Honk! Honk!"
It was great (although very disruptive!) to see his sense of fun and his higher energy levels in his running. However, especially since his energy is improving, it's essential to maintain control. The boys wanted to go to the Toy Department after I'd finished to drool over the toys they'd buy if only they had a spare $300. So W and N got to go - and T had to stay with me in the Baby Dept next door! He screamed, fought, cried, went rigid and generally packed a major hissy fit! When I went to the counter to buy something I had to put him down and he took off! I excused myself and fished him back - and he gave in after that and was very penitential and sad but knew exactly why it had happened. But it's really wonderful that he had the fire and energy to misbehave!
But while it's wonderful to revel in this we need to keep riding the wave and actually move towards actually sorting him out. His fluid intake seems to have increased and solids intake decreased since starting the Polycal - so on paper this is probably a failure. But if you make him decrease his fluid intake his solid intake doesn't increase and he needs the calories so what do you do?
I'm probably making a bigger feeding problem for us further down the track but right now the improvements in energy, exploration and development are clear indicators he's starting to get what he needs and I'm not going to do anything to stop that and so I'm not going to stop pushing the formula. He's always preferred to drink than eat and at least with the combination of nutritionally complete formula and Polycal he'll be getting a decent diet.
We've got a referral to another dietician who, being part of the hospital, should be able to work closely with the feeding therapist, but we can't see her until 30 Oct so I've got until then before someone throws a major hissy fit about his lack of solid food!
Currently no one has come up with an action plan on HOW we're actually going to get this child to eat enough to actually sustain him and no one is supporting us in the battle. My priority has to be his mental and physical development and the lack calories endangers that. We and he are the only ones who have to deal with the consequences of that and as far as I'm concerned we need to focus on the much bigger long term picture here. I'm sure he'll learn to eat eventually but you can never get back that time and brain development.
I have discovered that there is a clinical psych, SLT and I think dietician associated with the Child Development Unit that is alongside the hospital. I'm not sure if we've somehow got into the hospital system rather than that or if they are one and the same or what the issue is here.
When T goes to the GP for his weigh in tomorrow I'm going to ask which bit of the system we're in, if they are all the same and which might be best for T. He needs a concerted, sensible team approach if we are to get anywhere.
Wish me luck!
Wednesday, September 10, 2008
And T stands for Tigger!
A bit of good T news for a change!
He's been on the Polycal for a couple of weeks now and T definitely stands for Tigger!
You never really know what you've lost until you get it back again - and I never thought I'd be happy to have a naughty child, but now he has more energy that's what I've got!
He's happy, singing, dancing, challenging, bouncing, exploring and simply fantastic. We'd forgotten what a gorgeous giggle the boy has!
He's been on the Polycal for a couple of weeks now and T definitely stands for Tigger!
You never really know what you've lost until you get it back again - and I never thought I'd be happy to have a naughty child, but now he has more energy that's what I've got!
He's happy, singing, dancing, challenging, bouncing, exploring and simply fantastic. We'd forgotten what a gorgeous giggle the boy has!
My uncle is in town briefly and so we had a family lunch after church. Normally (as I did a couple of months ago) I’d have skipped church so T could rest and last the party. We went to church, on to the family lunch and he didn’t go to sleep until well after his normal sleep time and didn’t lose it until very close to the end.
I’ve even had to cajole him into bed for a nap! I used to have a kid who would come and find me and ask to go to bed!
He gets weighed again at the end of this week and I doubt he’s gained anything – having watched him running around the church foyer pretending to be a train!
But he’s happy, exploring, doing his needed developmental stuff and delightful to be with! I don’t care too much about the weight if I can be sure we’re feeding the brain anyway!