PH Parents of 09..
Discussion
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.
Glad to see all is going well for everyone.
Nothing to report here really at the moment. No significant development unfortunately, and that is actually a bit depressing.
Still having seizure difficulty too; worse at the moment as his triggers are air movement and temperature changes. At the max dose of sodium valproate, might have to add a second med.
On the plus side he loves school and seems is doing very well there.
Nothing to report here really at the moment. No significant development unfortunately, and that is actually a bit depressing.
Still having seizure difficulty too; worse at the moment as his triggers are air movement and temperature changes. At the max dose of sodium valproate, might have to add a second med.
On the plus side he loves school and seems is doing very well there.
pmanson said:
Alfie turned three last week...
great pics ,your lad was born around the same time as our Sasha,
shes also turning into a petrol head
very Mischievous , and very determined trying to get her to share things with other kids is very difficult , on the plus side , shes developing a very good sense of humour always hiding things i found my shoes buried in the sand pit !!! ,
and she really loves her brother Deryck born last year.............long may it continue !!
I'm finding it harder working away ,Skype is no substitute for hugs and reading bedtime stories
I can't wait for the school term to resume; this was Mason's second 6 week summer break (due to him starting a year and a half early) and he really has not enjoyed it on the whole.
Even worse we are rewarding him with a trip to the dentist today
His school held a swim event during the holidays, his eyes lit up when he saw where he was. He's always loved swimming but he loves it even more since we got his neck ring - he now has freedom in the pool and can move himself around. Watching him walk around the pool on the floor when set to the right level almost brought a tear to my eyes.
Only other change has been the starting of him saying m-u. It's almost like he's teasing her!
Even worse we are rewarding him with a trip to the dentist today
His school held a swim event during the holidays, his eyes lit up when he saw where he was. He's always loved swimming but he loves it even more since we got his neck ring - he now has freedom in the pool and can move himself around. Watching him walk around the pool on the floor when set to the right level almost brought a tear to my eyes.
Only other change has been the starting of him saying m-u. It's almost like he's teasing her!
SBDJ said:
I can't wait for the school term to resume; this was Mason's second 6 week summer break (due to him starting a year and a half early) and he really has not enjoyed it on the whole.
Even worse we are rewarding him with a trip to the dentist today
His school held a swim event during the holidays, his eyes lit up when he saw where he was. He's always loved swimming but he loves it even more since we got his neck ring - he now has freedom in the pool and can move himself around. Watching him walk around the pool on the floor when set to the right level almost brought a tear to my eyes.
Only other change has been the starting of him saying m-u. It's almost like he's teasing her!
He looks absolutely great! Even worse we are rewarding him with a trip to the dentist today
His school held a swim event during the holidays, his eyes lit up when he saw where he was. He's always loved swimming but he loves it even more since we got his neck ring - he now has freedom in the pool and can move himself around. Watching him walk around the pool on the floor when set to the right level almost brought a tear to my eyes.
Only other change has been the starting of him saying m-u. It's almost like he's teasing her!
Some schools do an Extended School Year (ESY) where there's stuff 52 weeks a year, or close to. I wonder if he'd like some sort of summer school, next year - he'll be 5 then?
Good luck at the dentist...
BlackVanDyke said:
He looks absolutely great!
Happiest little man you'll meet. Gets a bit upset sometimes if other kids are around him playing and ignoring him, must be so frustrating for him.BlackVanDyke said:
I wonder if he'd like some sort of summer school, next year - he'll be 5 then?
Possibly, worth looking into at least, yes, 5 next year.BlackVanDyke said:
Good luck at the dentist...
All went perfectly, in and out in 2 minutes and the dentist still has all her fingers.I hope you and yours kids are all doing well?
Got cedric here at the moment and due to the way Christmas works, it's her turn this year so I'm giving him some of his presents now.
For those of you unsure of what to buy for a young boy, I'd wholeheartedly recommend the playmobil large pirate ship. It's utterly amazing. So impressed with it that cedric has barely had a look in so far as daddy has been monopolising it.
Got cedric here at the moment and due to the way Christmas works, it's her turn this year so I'm giving him some of his presents now.
For those of you unsure of what to buy for a young boy, I'd wholeheartedly recommend the playmobil large pirate ship. It's utterly amazing. So impressed with it that cedric has barely had a look in so far as daddy has been monopolising it.
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