Marleysgirl
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Bumped for Maevesmummy 
Andrew - born at 29 weeks!
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MaevesMummy
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Bumped for Maevesmummy
thank you so much, what a little hero.
xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx
Marleysgirl
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Another month goes by, time for another update!
Andrew is walking more often than crawling, so we class that as "walking"
He's not quite at the point of sticking reins on him and letting him walk round the supermarket, but he's getting there. It does mean that everything in the house is now more accessible, so we've had to tidy the livingroom substantially.
His eating is improving too, in that he can cope with stage 2 and sometimes even stage 3 lumpy jars. He does however still have an issue with flavours, he didn't think much of pasta at the weekend and is still fixated on chicken to the exclusion of other meats & fish. No progress on finger foods or hand feeding. The weather has warmed up and we cannot get him to increase his fluid intake, we have tried every cup on the market to no avail; and if his bottle doesn't contain milk, he doesn't want to know.
Today we were back at the hospital for him to have MRI & CT scans on his ears, to assess whether there is any physical dysfunction. The scans almost didn't happen, he fought the sedation with every breath of his body - had to have oral and anal sedation - we were almost at the point of giving up when he finally slept. Presumably we find out the "results" in a few weeks.
He's still a happy little boy
Andrew is walking more often than crawling, so we class that as "walking"
He's not quite at the point of sticking reins on him and letting him walk round the supermarket, but he's getting there. It does mean that everything in the house is now more accessible, so we've had to tidy the livingroom substantially.His eating is improving too, in that he can cope with stage 2 and sometimes even stage 3 lumpy jars. He does however still have an issue with flavours, he didn't think much of pasta at the weekend and is still fixated on chicken to the exclusion of other meats & fish. No progress on finger foods or hand feeding. The weather has warmed up and we cannot get him to increase his fluid intake, we have tried every cup on the market to no avail; and if his bottle doesn't contain milk, he doesn't want to know.
Today we were back at the hospital for him to have MRI & CT scans on his ears, to assess whether there is any physical dysfunction. The scans almost didn't happen, he fought the sedation with every breath of his body - had to have oral and anal sedation - we were almost at the point of giving up when he finally slept. Presumably we find out the "results" in a few weeks.
He's still a happy little boy
inperfected
Mum to a 29 weeker
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Thanks so much for this thread. My wee man in tummy is 28 weeks today an currently dilated fully so just waiting now but probably within next few days or at beat 2 weeks approx max they think.
AuntBug
Mom of one, expecting #2
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Good luck inperfected, keep us updated. My LO is 30 +4 and it's a waiting game to see how much longer we can get.
Marleysgirl
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We attended Andrew's "Child Development Team" meeting today with his paediatrician, health visitor, teacher of the deaf, and special needs assistant.
Not really sure what the purpose of the meeting was, got the impression it was more of a box-ticking exercise now that he's approaching 2 years old. We didn't have any questions for any of them as we're on good terms and see them all regularly anyway.
They did say that decisions as regards to Andrew's schooling wouldn't be reached until about another year hence, when they have a better understanding of his hearing loss (ie whether special school is necessary) and development delay; so we are to plan now for him entering nursery after his 3rd birthday even though his development (& size) will be more like that of a 2-year-old. I suppose the theory is that it's better to have him on the list now rather than later.
They also said something about writing a "3.3.2" document about him, I've only just remembered this so I'm off to Google!
Not really sure what the purpose of the meeting was, got the impression it was more of a box-ticking exercise now that he's approaching 2 years old. We didn't have any questions for any of them as we're on good terms and see them all regularly anyway.
They did say that decisions as regards to Andrew's schooling wouldn't be reached until about another year hence, when they have a better understanding of his hearing loss (ie whether special school is necessary) and development delay; so we are to plan now for him entering nursery after his 3rd birthday even though his development (& size) will be more like that of a 2-year-old. I suppose the theory is that it's better to have him on the list now rather than later.
They also said something about writing a "3.3.2" document about him, I've only just remembered this so I'm off to Google!
sherryberry79
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It must be nice though to know what the plan for the future is, and that everyone else is in on the picture too! I wish there was a multi agency meeting for Millie.......I don't seem to be able to get a straight answer regarding preschool/school from anyone!!
i will pick your brains about it when I see you!!
i will pick your brains about it when I see you!!
Marleysgirl
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Thought you might - I wrote this with you in mind!
I actually mentioned in the meeting that I had a friend based under Stockport with a similar preemie, and that we were comparing the two Council's approaches to monitoring progress. I think the fact that Andrew has an "official" special need, i.e. his hearing loss, means that he's already on all the appropriate lists here; whereas Millie's needs aren't being assessed. Does Portage have any contact with the Family Information Service (Stockport's is https://www.fil.org.uk/)? Andrew's progress is being managed by his Pre-Schools lady (Portage equivalent) and she works under Manchester's FIS.
sherryberry79
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I am not sure if portage are affiliated with the FIS, but i will ask Gill from portage about this when I next see her. There are no plans at the mo for Millie to have a meeting like this, probably for the reasons you mentioned.
Hope you and Andrew are feeling better by the way!
Hope you and Andrew are feeling better by the way!
Marleysgirl
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Still very snuffly at the moment, but getting better. Last weekend was a complete write-off!!!
I've finally found what the "332" reference means. It's a letter from Andrew's healthcare team (ie. the Child Development Team who met today) to the local education authority, alerting them to the fact that Andrew may have "special educational needs". I remember now that she did go on to explain, Andrew will probably need to be assessed by an educational psychologist before any kind of formal statementing.
I've finally found what the "332" reference means. It's a letter from Andrew's healthcare team (ie. the Child Development Team who met today) to the local education authority, alerting them to the fact that Andrew may have "special educational needs". I remember now that she did go on to explain, Andrew will probably need to be assessed by an educational psychologist before any kind of formal statementing.
Marleysgirl
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Small snippets of news:
We got a copy of the "332" letter and it says exactly what I thought it would - that Andrew will probably have additional educational needs. Nothing more. I guess we wait and see!
He had his final appointment with the hospital's Paediatric consultant last week - but didn't actually have the appointment as she was running over 90 minutes late and we had to leave for another appointment. She has said (by email) that she's happy to discharge him to the community Paediatrician now (whose clinics are only 5 mins from our house).
And he had a third appointment at the Eye Hospital today - and they've discharged him too! Nowt wrong with his eyes other than shortsightedness, which we expected as it runs down my family. The fact he doesn't really look at us is more a behavioural issue than any sight problem.
We got a copy of the "332" letter and it says exactly what I thought it would - that Andrew will probably have additional educational needs. Nothing more. I guess we wait and see!
He had his final appointment with the hospital's Paediatric consultant last week - but didn't actually have the appointment as she was running over 90 minutes late and we had to leave for another appointment. She has said (by email) that she's happy to discharge him to the community Paediatrician now (whose clinics are only 5 mins from our house).
And he had a third appointment at the Eye Hospital today - and they've discharged him too! Nowt wrong with his eyes other than shortsightedness, which we expected as it runs down my family. The fact he doesn't really look at us is more a behavioural issue than any sight problem.
Marleysgirl
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Bumped for Beakerange 
Latest updates:
Audiology report that there is no malformation of his inner ears, cochlea or auditory nerves. So we are no further forward with measuring his level of hearing, and all we can rely on is reactionary testing. We could still be doing this a year or two down the line ...
We may have made a breakthrough on feeding
Today he has willingly eaten normal Stage 2 food, because I added herbs to it. We realised that the restricted diet he preferred, was heavy on herby meals ... So perhaps normal baby food is too bland for him? We may even be able to start introducing "our" food soon, so long as I add herbs to enhance the flavour.
(At what point do I have to leave here? He'll be two years old in a fortnight!)
Latest updates:
Audiology report that there is no malformation of his inner ears, cochlea or auditory nerves. So we are no further forward with measuring his level of hearing, and all we can rely on is reactionary testing. We could still be doing this a year or two down the line ...
We may have made a breakthrough on feeding
Today he has willingly eaten normal Stage 2 food, because I added herbs to it. We realised that the restricted diet he preferred, was heavy on herby meals ... So perhaps normal baby food is too bland for him? We may even be able to start introducing "our" food soon, so long as I add herbs to enhance the flavour.(At what point do I have to leave here? He'll be two years old in a fortnight!)
Foogirl
Baby Abby 11 weeks early
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Latest updates:
Audiology report that there is no malformation of his inner ears, cochlea or auditory nerves. So we are no further forward with measuring his level of hearing, and all we can rely on is reactionary testing. We could still be doing this a year or two down the line ...
We may have made a breakthrough on feeding
(At what point do I have to leave here? He'll be two years old in a fortnight!)
Abby was 2 in April, I haven't left yet!!
Great news on the food. Mr Foo inevitably said when he tried Abby's food "would be fine with some salt.....". It is very bland!
I'm so happy for you that Andrew is eating stage 2 food!! And its nearly his birthday!
Jeez im going no-where either now Alex is 2 - and this section needs your experiences MarleysGirl! I always thought the journey would be over now she's two but its not. Sometimes new mums like reading what could be ahead too - I know I googled LOADS for older prem stories when Alex was in neonatal!
Jeez im going no-where either now Alex is 2 - and this section needs your experiences MarleysGirl! I always thought the journey would be over now she's two but its not. Sometimes new mums like reading what could be ahead too - I know I googled LOADS for older prem stories when Alex was in neonatal!
Marleysgirl
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Have to say that I'm inclined to stay - our preemies may be toddlers, but they still have issues that are related to them having been premature, so we need our little community to remain
Foogirl
Baby Abby 11 weeks early
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Hey! I've just realised that's you!
Marleysgirl
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Happy 2nd Birthday
Andrew
Andrew
From this:
https://i306.photobucket.com/albums/nn274/Tigsteroonie/Baby/DSC01382.jpg
To this:
https://i306.photobucket.com/albums/nn274/Tigsteroonie/Baby/CIMG5368.jpg
In two very fast and very fun years
