PH Parents of 09..
Discussion
I believe they want to call a meeting of his specialists, school teachers and social services to discuss it all.
He's much happier at the moment - lots of smiling and laughing and we've got MRI results back that showed no recent damage to his brain. This unfortunately has left them at a complete loss as to why he still won't use his right arm, why his eyes are off to the left and why he won't make any communication sounds any more.
He also won't sleep at all and is helping me post this now...
He's much happier at the moment - lots of smiling and laughing and we've got MRI results back that showed no recent damage to his brain. This unfortunately has left them at a complete loss as to why he still won't use his right arm, why his eyes are off to the left and why he won't make any communication sounds any more.
He also won't sleep at all and is helping me post this now...
escargot said:
Heading over to France tomorrow to fetch my little man. I am so bloody excited, I barely slept a wink last night and there's no chance I'll get any kip tonight at all! 
Have a great time mate. My wee boy is so much fun. He's not little for his age any more which is a bonus. I'm keeping my fingers crossed that we get discharged from the peads this month. We have been constantly under peads since June 2008 as my second child was also prem and was still under the hospital when our youngest was born. 
Recent video of Luca in action.
http://youtu.be/0vIedqLZTq4
I reckon he's got superunleaded in his veins
From Holiday in Italy this summer.
and Summer in the UK
http://youtu.be/0vIedqLZTq4
I reckon he's got superunleaded in his veins
From Holiday in Italy this summer.
and Summer in the UK
Edited by StuB on Monday 15th October 14:50
It's my boys birthday this week. And I am having the usual attack of the guilts. Hopefully this will be the last year. The whole scbu stress thing comes back - I can remember some bits of NICU so vividly. I think it all resurfaced as we had to see the peads consultant last week and to waste a bit of time I did the walk around the hospital and passed the unit.
My son was discharged from the peads recently so all is well.
I just don't know if I could do it all again - being so ill and then sbcu bit then the inevitable hospital stays etc. I am getting on now and need to make up my mind.
My son was discharged from the peads recently so all is well.
I just don't know if I could do it all again - being so ill and then sbcu bit then the inevitable hospital stays etc. I am getting on now and need to make up my mind.
Suprisingly well here.
Since last hospital admission we havent had any admissions which makes a change.
I got the vomiting under control it seems by insisting on a change in his milk feeds.
School has been going well, this is his second year and he started full time in September. He loves it and they love him too. Various respite options are available to us now too. I was a bit wary of the involvement of social services however they are keeping a distance whilst providing advice which is fine in my book.
As a bonus they tried to put a bracelet on him at school, he looked at it, looked at her and said 'off'. I'm hoping he didnt mumble anything first!
Good to see everyone doing so well, hard to believe it has almost been 4 years!
Since last hospital admission we havent had any admissions which makes a change.
I got the vomiting under control it seems by insisting on a change in his milk feeds.
School has been going well, this is his second year and he started full time in September. He loves it and they love him too. Various respite options are available to us now too. I was a bit wary of the involvement of social services however they are keeping a distance whilst providing advice which is fine in my book.
As a bonus they tried to put a bracelet on him at school, he looked at it, looked at her and said 'off'. I'm hoping he didnt mumble anything first!
Good to see everyone doing so well, hard to believe it has almost been 4 years!
SBDJ said:
Suprisingly well here.
Since last hospital admission we havent had any admissions which makes a change.
I got the vomiting under control it seems by insisting on a change in his milk feeds.
School has been going well, this is his second year and he started full time in September. He loves it and they love him too. Various respite options are available to us now too. I was a bit wary of the involvement of social services however they are keeping a distance whilst providing advice which is fine in my book.
As a bonus they tried to put a bracelet on him at school, he looked at it, looked at her and said 'off'. I'm hoping he didnt mumble anything first!
Good to see everyone doing so well, hard to believe it has almost been 4 years!
Since last hospital admission we havent had any admissions which makes a change.
I got the vomiting under control it seems by insisting on a change in his milk feeds.
School has been going well, this is his second year and he started full time in September. He loves it and they love him too. Various respite options are available to us now too. I was a bit wary of the involvement of social services however they are keeping a distance whilst providing advice which is fine in my book.
As a bonus they tried to put a bracelet on him at school, he looked at it, looked at her and said 'off'. I'm hoping he didnt mumble anything first!
Good to see everyone doing so well, hard to believe it has almost been 4 years!
that's bloody brilliant!Especially the 'off' bit.
Chip off the old block!
Struggling to believe that Doodles is now 4... Crazy..
Anyway, I should have posted about this time last year to tell you about a drama with had with Daisy after a routine sedation at BCH for an MRI, we were discharged with doodles still, ultimately, unconscious. Which resulted, later in the day, in a trip under blues and twos to Worcester Royal and a dose of Naloxone as we were unable to ascertain from BCH exactly what had been used for sedation. Naloxone is normally used to counter opiate overdoses!
Fortunately a good buddy of mine is a senior doctor in the local A&E and met us there, the Ambo crew did the hand over to him and he made sure we were looked after well. Daisy recovered without issue, but consultants at Worcester were unhappy with what happened and made contact with BCH.
This was followed up with contact from a medical director at BCH to ask if we wished to raise a complaint. I pointed out that I didn't want to raise a complaint, but had a number of issues which needed to be addressed to give me assurances that this would never happen to another child/family.
We had confirmation from BCH that an investigation had been carried out and measures taken, which was a relief.
Fast forward to today and we're at BCH for a routine appointment with our Neuro consultant. He opened with thanks for raising the issue, as it had gone to the chief exec and everyone below, which had led to massive change in process and procedure across multiple hospitals! our neuro guy was quite really pushing the thanks, we didn't need it but it was great to here that change happens!
Today's appointment was a good positive one, with no concerns and and good look at the results from the MRI last year.
Now we just need to work out how we're going to deal with the urology side of things on a long term basis.
Doodles has got a place at the school a spitting distance from our house, changes are already being made in readiness for her arrival and we've just had a note advising that she's been awarded school action plus, so will get 5 hours of additional TA support each week..
All in all, things are good.. we're bloody knackered though!
Hope things are going well with everyone else?
Anyway, I should have posted about this time last year to tell you about a drama with had with Daisy after a routine sedation at BCH for an MRI, we were discharged with doodles still, ultimately, unconscious. Which resulted, later in the day, in a trip under blues and twos to Worcester Royal and a dose of Naloxone as we were unable to ascertain from BCH exactly what had been used for sedation. Naloxone is normally used to counter opiate overdoses!
Fortunately a good buddy of mine is a senior doctor in the local A&E and met us there, the Ambo crew did the hand over to him and he made sure we were looked after well. Daisy recovered without issue, but consultants at Worcester were unhappy with what happened and made contact with BCH.
This was followed up with contact from a medical director at BCH to ask if we wished to raise a complaint. I pointed out that I didn't want to raise a complaint, but had a number of issues which needed to be addressed to give me assurances that this would never happen to another child/family.
We had confirmation from BCH that an investigation had been carried out and measures taken, which was a relief.
Fast forward to today and we're at BCH for a routine appointment with our Neuro consultant. He opened with thanks for raising the issue, as it had gone to the chief exec and everyone below, which had led to massive change in process and procedure across multiple hospitals! our neuro guy was quite really pushing the thanks, we didn't need it but it was great to here that change happens!
Today's appointment was a good positive one, with no concerns and and good look at the results from the MRI last year.
Now we just need to work out how we're going to deal with the urology side of things on a long term basis.
Doodles has got a place at the school a spitting distance from our house, changes are already being made in readiness for her arrival and we've just had a note advising that she's been awarded school action plus, so will get 5 hours of additional TA support each week..
All in all, things are good.. we're bloody knackered though!
Hope things are going well with everyone else?
That it is good news.
All good here, Alfie was 3 back in October, still not talking much but seems to be taking everything in.
We've had his hearing checked and completed four group speech therapy sessions to try and boost his confidence. Pre-school wise he's doing well and they're pleased with his progress.
All good here, Alfie was 3 back in October, still not talking much but seems to be taking everything in.
We've had his hearing checked and completed four group speech therapy sessions to try and boost his confidence. Pre-school wise he's doing well and they're pleased with his progress.
My boy is good. Discharged in August from the peads but still having food digestion issues so we may need to rethink things in the future. He's still more vulnerable than the others to illness in general - gets hit harder and takes significantly longer to recover. He's still short for his age but now is rotund. He's speaking well but can't write yet. He can only manage the first letter of his name. He's 3.5 and I was hoping he would follow his sister by writing his name by now.
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