PH Parents of 09..
Discussion
Excellent news, glad to hear some things are looking up.
Mason came down with tonsillitis at the weekend and has picked up a cold too. This means he's still taking nothing at all by mouth unfortunately, and despite the milk he's lost half a kilo this week alone.
He's also perpetually tired and grumpy, almost feels like a different person. Hopefully he'll pick up once he gets better. Had a visit from the community nurse though who was amazed that they haven't been involved previously.
Getting a break now will probably be a lot more difficult - other people are struggling with the concept and operation of his PEG tube. The community nurse mentioned a respite service so hopefully that might be of help once in a while. Babysitters were hard enough before, but are kind of out the window now!
Mason came down with tonsillitis at the weekend and has picked up a cold too. This means he's still taking nothing at all by mouth unfortunately, and despite the milk he's lost half a kilo this week alone.
He's also perpetually tired and grumpy, almost feels like a different person. Hopefully he'll pick up once he gets better. Had a visit from the community nurse though who was amazed that they haven't been involved previously.
Getting a break now will probably be a lot more difficult - other people are struggling with the concept and operation of his PEG tube. The community nurse mentioned a respite service so hopefully that might be of help once in a while. Babysitters were hard enough before, but are kind of out the window now!
BlackVanDyke you'll be happy to know we now have his pump. Plain black bag I'm afraid though, no cute little teddy. Bit of a pain having so much to carry now though!
Still having a few issues - just finishing a course of multiple antibiotics to clear up some infection are the PEG site (and a bit from the keyhole cuts too). Weight is down 1kg since before the operation too
Just come back out of hospital again - he stopped tolerating his feeds (lots of wretching and venting, even managed to vomit orally) and seems to be ill with something although they are unsure what. As it is now he's still not tolerating and is extremely grumpy and tired - sleeping all the time. I want my son back!
Hope all is well with the rest of you
Still having a few issues - just finishing a course of multiple antibiotics to clear up some infection are the PEG site (and a bit from the keyhole cuts too). Weight is down 1kg since before the operation too
Just come back out of hospital again - he stopped tolerating his feeds (lots of wretching and venting, even managed to vomit orally) and seems to be ill with something although they are unsure what. As it is now he's still not tolerating and is extremely grumpy and tired - sleeping all the time. I want my son back!
Hope all is well with the rest of you
Evening folks, how are things going with your '09 babies?
I thought I'd share this link here as I know some of us had some tricky times to over come..
A great piece of writing that perfectly encapsulates the emotions of coming to terms with having a disabled child, unfortunately written in response to the phone hacking debacle..
http://www.guardian.co.uk/commentisfree/2011/jul/1...
I thought I'd share this link here as I know some of us had some tricky times to over come..
A great piece of writing that perfectly encapsulates the emotions of coming to terms with having a disabled child, unfortunately written in response to the phone hacking debacle..
http://www.guardian.co.uk/commentisfree/2011/jul/1...
Daisy is doing well, she is scarily intelligent and her mobility is relatively good.. There are still a bunch of things to deal with..
I, on the other hand, had a rocky day the other day.. It's strange, and the timing of the article I posted is a little spooky, coming to terms with having a disabled child doesn't happen immediately, nor does it happen over night.. You spend days, weeks, months, and even years with some kind of false belief that this thing will go away, but, as kids develop and those around them develop much faster things get brought home..
I found myself hugging Daisy and saying sorry..
She is awesome, no, scrub that, she is f**king awesome, but if I could take from her what is broken and give her parts of me that work I would do it in a second.
I, on the other hand, had a rocky day the other day.. It's strange, and the timing of the article I posted is a little spooky, coming to terms with having a disabled child doesn't happen immediately, nor does it happen over night.. You spend days, weeks, months, and even years with some kind of false belief that this thing will go away, but, as kids develop and those around them develop much faster things get brought home..
I found myself hugging Daisy and saying sorry..
She is awesome, no, scrub that, she is f**king awesome, but if I could take from her what is broken and give her parts of me that work I would do it in a second.
Slinky said:
She is awesome, no, scrub that, she is f**king awesome, but if I could take from her what is broken and give her parts of me that work I would do it in a second.
God mate, that one sentence sums it all up and has given me a lump in my throat.My boy is fine, doing well, running us all ragged though.
escargot said:
God mate, that one sentence sums it all up and has given me a lump in my throat.
My boy is fine, doing well, running us all ragged though.
It did the same as I wrote it, and it brings tears to my eyes reading it back now.. My boy is fine, doing well, running us all ragged though.
I won't lie, I'm finding things really f**king hard right now.. I've been "strong" for nearly 2.5 years..
SBDJ said:
You and me both mate.
Mason is ok, changes to feeding have alleviated a lot of vomiting issues.
No change developmentally unfortunately but we are finally seeing some weight gain!
Hurrah for weight gain - will make more energy available for his brain to grow and he'll feel miles better.Mason is ok, changes to feeding have alleviated a lot of vomiting issues.
No change developmentally unfortunately but we are finally seeing some weight gain!
Development will come with time and physical strength - you'll be amazed what he has been learning but not able to physically show you yet. I have a friend, a year older than me so must now be 27ish who until she was TWELVE was labelled as having profound learning disability and being 'non-responsive' and was in the most special room of a special school, being shown squares circles and triangles year after year. When she was 12 she finally learned to control her hand juuuuuuuuust enough to point to a letter board, with help - long story short, it turned out she'd been able to read for at least 4 years by that point and has just graduated with a 2:1 in English Literature from Nottingham!
Obviously that's a very extreme example but do bear in mind that what he can actually do now is not necessarily any reflection of where he's at understanding wise.
Slinky said:
I won't lie, I'm finding things really f**king hard right now.. I've been "strong" for nearly 2.5 years..
I'm really sorry that you're struggling, is there a particular aspect that you're finding hard at the moment?Also... are you in touch with other parents of kids with Spina Bifida? Or adults, for that matter? Got a mate with a 6 year old who has pretty severe disability (paralysed from torso down and also has hydrocephalus and a few other issues) but is doing absolutely beautifully well, is a pro with both power and manual wheelchairs, going to mainstream school and somehow is toilet training to an extent - the latter is frankly miraculous for a kid who's totally paraplegic!
I suppose we are lucky. Our youngest has come out of the otherside of straightforward prematurity with nothing but a bit of asthma, a few food allergies and developmental delay - all of which may have happened anyway.
I read the article linked above and strangely it brought back memories I have when my first child was going downhill. I can remember a lot about the room and the exact smell at the time.
I am starting to think that we may one day (and very much a may one day) think about another. I would have another child tomorrow if I could miss out pregnancy and birth and SCBU. I think the odds must be against me now having had 3 very similar pregnancies with similar outcomes. And there are implications that we simply weren't really aware of - our eldest is having real trouble at school - we never thought to mention he was prem and had been assessed as 3 months behind when he was 6 months old and again at 2.5 because it was such a long time ago. Now they tell us that it is extremely common for people to experience these things with prem boys!
I read the article linked above and strangely it brought back memories I have when my first child was going downhill. I can remember a lot about the room and the exact smell at the time.
I am starting to think that we may one day (and very much a may one day) think about another. I would have another child tomorrow if I could miss out pregnancy and birth and SCBU. I think the odds must be against me now having had 3 very similar pregnancies with similar outcomes. And there are implications that we simply weren't really aware of - our eldest is having real trouble at school - we never thought to mention he was prem and had been assessed as 3 months behind when he was 6 months old and again at 2.5 because it was such a long time ago. Now they tell us that it is extremely common for people to experience these things with prem boys!
Coco H said:
I suppose we are lucky. Our youngest has come out of the otherside of straightforward prematurity with nothing but a bit of asthma, a few food allergies and developmental delay - all of which may have happened anyway.
I read the article linked above and strangely it brought back memories I have when my first child was going downhill. I can remember a lot about the room and the exact smell at the time.
I am starting to think that we may one day (and very much a may one day) think about another. I would have another child tomorrow if I could miss out pregnancy and birth and SCBU. I think the odds must be against me now having had 3 very similar pregnancies with similar outcomes. And there are implications that we simply weren't really aware of - our eldest is having real trouble at school - we never thought to mention he was prem and had been assessed as 3 months behind when he was 6 months old and again at 2.5 because it was such a long time ago. Now they tell us that it is extremely common for people to experience these things with prem boys!
Coco, I have good friends who have just had their second quite premature baby with some significant (likely genetic) health and developmental issues - can only imagine what you've been through having had to do it three times over!I read the article linked above and strangely it brought back memories I have when my first child was going downhill. I can remember a lot about the room and the exact smell at the time.
I am starting to think that we may one day (and very much a may one day) think about another. I would have another child tomorrow if I could miss out pregnancy and birth and SCBU. I think the odds must be against me now having had 3 very similar pregnancies with similar outcomes. And there are implications that we simply weren't really aware of - our eldest is having real trouble at school - we never thought to mention he was prem and had been assessed as 3 months behind when he was 6 months old and again at 2.5 because it was such a long time ago. Now they tell us that it is extremely common for people to experience these things with prem boys!
In all seriousness, you really should consider fostering/adoption - there are SO many kids out there desperate for a family and while foster/adopted kids don't exactly come with a warranty at least any significant issues you'll know about before you take them on. Got a friend who's heavily involved in supporting people to adopt from former Eastern Bloc countries, you honestly wouldn't believe how desperate some of the conditions are and how many beautiful, perfect kids are pretty much rotting in orphanages because of lack of food/care/homes/money etc.
I've been breaking my heart over one little girl they've been putting appeals out for - 6ish years old with severe disabilities, 'should' have been transferred to an adult (!) mental institution by now but orphanage director is trying to hang onto her in genuine fear for this kid's life if she is transferred... I'd be on a plane to get her tomorrow if I could, financial hardship be damned, but pretty much every country will refuse a prospective adoptive parent with any sort of even minor disability or health problem, let alone the likes of me.
This is my first post in thread but I was just wondering now everyone else's little one's are coming on with eating solid foods. Alice (born in Sept 09) had been doing really well eating until a few weeks ago and shes became really fussy with what she'll eat. At the moment she will eat her chips, roasties etc and leave everything else. She used to be great and eat everything that was put in front of her and now I havn't a clue how to help her. Has any one else had this with there kids?
My lad (born end of Aug 09) has his moments too. Sometimes he won't eat anything at all but we've come to realise that's just how he is and there really isn't much point in forcing the issue (that's not to say we let him do whatever he wants).
I wouldn't worry too much about it personally. As the doc said to us, as soon as they get hungry they'll suddenly become less fussy.
I wouldn't worry too much about it personally. As the doc said to us, as soon as they get hungry they'll suddenly become less fussy.
tractorguy said:
This is my first post in thread but I was just wondering now everyone else's little one's are coming on with eating solid foods. Alice (born in Sept 09) had been doing really well eating until a few weeks ago and shes became really fussy with what she'll eat. At the moment she will eat her chips, roasties etc and leave everything else. She used to be great and eat everything that was put in front of her and now I havn't a clue how to help her. Has any one else had this with there kids?
They all do that sir. Just leave her to it and don't make a big deal of it.
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