Baby Georges story

robj20 said:
Been ages since I have updated this thread.

George is doing well, he's able to stand up using the sofa on his own now.
He's learning a fair few words. Looking to start nursery soon as well one day a week for starters.

Through the wife's work we raised a total of £15,335 for Ronald McDonald House Liverpool. Which everyone was amazed at.
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George is amazing, and so are you and your wife.

As a father whose son went straight into special care for concerns over his lungs, I have experienced only a tiny part of what you've been through and that was horrendous enough.

I'm also pleased that no-one tried to talk to me at work while I was reading your first few posts. I've got a reputation to uphold!
 
robj20 said:
Been ages since I have updated this thread.

George is doing well, he's able to stand up using the sofa on his own now.
He's learning a fair few words. Looking to start nursery soon as well one day a week for starters.

Through the wife's work we raised a total of £15,335 for Ronald McDonald House Liverpool. Which everyone was amazed at.
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that's brilliant to hear. what a trooper he is.
Pookie Bear said:
George is amazing, and so are you and your wife.
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couldn't agree more.
Pookie Bear said:
I'm also pleased that no-one tried to talk to me at work while I was reading your first few posts. I've got a reputation to uphold!
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my 'do not disturb' sign goes up on my office door every time an update to this thread pops up!!
 
robj20 said:
Been ages since I have updated this thread.

George is doing well, he's able to stand up using the sofa on his own now.
He's learning a fair few words. Looking to start nursery soon as well one day a week for starters.

Through the wife's work we raised a total of £15,335 for Ronald McDonald House Liverpool. Which everyone was amazed at.
Click to expand...
That is great news :)
 
Had a meeting a while back with his Designated Key Worker who advised us to get George into nursery this year especially as he gets 15 hours free.

So yesterday we took the day off work and visited 3 local nurseries.
1st one I thought was dirty and a bit chaotic, they brought up about applying for 1on 1 care which we knew nothing about. 27 to a room.

2nd one much older building which put us off initially. But when we met the manager that all changed she had worked there from leaving school and the owners had progressed her so she was not just an office type manager like the 1st.
It was a lot calmer max of 12 to a room, 9 there currently, the staff were amazing really happy you could see they loved what they do you could see the kids running up to the manager as we looked around, so no BS that she doesn't just sit in an office. Place was spotless but much more basic.
We brought up the 1 to 1 care money and she said she didn't think he needed it they could more than handle his needs.

The 3rd place was much like the 1st, again jumping in delight almost as they mentioned the 1 to 1 care fund.

So thoughts were that 1 and 3 were more business looking to make profit.
2 had a lovely family feel to it, they heavily promote patents and family getting involved if and when they can, they were even flexible with days saying if George had an appointment at could just arrange to take him a different day to nursery all they ask is a few days notice.

So easy decision in the end.
 
We had a similar experience selecting a nursery, some were just chaotic and ages too mixed for my linking. Dirty too. Sure they were family run and been going for a long time but I wasn't keen tbh. But one just stood out, similar price yet lower numbers and just lovely people happy to show us everything.

He's been there since October last year (18 months old now) and his development has rocketed becasue of it. He's become a happy loving little man yet curious and independant. It'll be a big positive step for everyone, it's great news Nursery is a possibility for him. The first few weeks are tough, he might struggle being separated and I'm sure you guys will worry leaving him but it gets easier and the separation issues stop almost the moment you leave them to it. After a few days they just put on a show for you but it stops the moment you close the door behind you (used to spy through the window before I left :D).
 
Our daughter has been in full time nursery since she turned 1 (3 tomorrow) and its done her a world of good. I had similar reservations at first as most nurseries seem chaotic when you go in but it's just the nature of nurseries I think!

Most children get a bit overhwlemed at first but soon settle. I think my daughter would rather be at nursery than with us half the time as she's made a lot of friends and does a lot more varied activities than at home. At first she would cry when we left but that stopped after a few weeks and now she can't wait to get in there.
 
Bit of am update.

The virus has had us on edge for a long time, but during about July it was confirmed they didnt consider him at any more risk than those with Asthma so that was a huge relief.
Hes started Nursery and loving it, only Fridays for now. The nursery allow us to bank time so he can carry on going for free all through the holidays as well which is good of them.
Hes started standing up on his own and making his first assisted steps, which is fantastic news, almost brought a tear to our eyes to see him doing this.

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Hes had his final MRI a week or so ago as well, were waiting on the results. At age 3 in February he will get his Cerebral Palsy diagnosis, which at the minute seems to be only his right arm. Still hopeful he will gain some use of it as he gets older and we can force him to use it.

And good but stressful news we have baby number two on the way. All Georges consultants and what not say a sibling will help him massively, it would be nice for him to have someone as he grows up. But the thought is in the back of both our heads of things going wrong again.
 
Awesome moment when they make first steps, well done.

Awaiting number 2 here as well, and expecting (hoping) that a sibling only improves things. Increased workload for sure, but I think kids definitely love siblings. Good luck.
 
Brilliant news on baby #2 and as always congratulations to George for continuing to fight the good fight. What a champ.

I know it’s easy to say, but try and not worry too much about the second baby. Lightning very rarely strikes twice in these situations.
 
@robj20 I know it will be difficult but put the thoughts of something going wrong out of your heads. The chances are infinitesimally small. Plus, it's not as if George has turned out half bad despite the awful luck he's had and the difficult journey for all of you. Is it?
From your posts things are certainly looking better and better by the month for him, I don't know if you have already but put perspective this is a guy whose lungs wouldn't work; now you're watching him take steps, waffle on, shovel everything and anything in to his mouth and really the biggest question seems to be how long until he gets use of his right arm.

I can't wait for that post. Until then he can have a spot in the lefty club with me.
 
Keep forgetting to update this thread. Baby two is with us now, little drama with the wife needing to be induced as a precaution. Its nice to experience a newborn as nature intended.

George has taken well to his big brother duties.
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George himself is doing really well, turns 3 in a few weeks. He's getting a pressure suite made soon to help his posture as he is slumping to the right side. He's walking well with the exception that he's falling over a lot and with no right hand to use often bangs his head, can you believe its so bad that he has a flag on his NHS file so we don't get reported for repeated bruises.

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Mid year update, fair bit has happened.

First up his body suite continues to aid his posture, though during the hot spells he hasn't had it on.
He has once again been referred to Neurology at St Marys for some tests to see what is causing his arm to fling out and throw him off balance, so he's been fast tracked for a test where they put electrodes all over his head to see exactly what happens when it does it. They're hopeful the right drugs could fix this.

He's been awarded full disability along with a blue badge and car. The wife has really been struggling to get him in and out of the car as he gets bigger and he cant walk far yet so still needs a trolley. The council are also coming to the house to see if we qualify for some help altering the front garden so its easier to park and get him in and out.

He's talking much better these days. He's started to have some major tantrums where he will smash his head onto the floor often really hurting himself.

He was again in hospital a few weeks back with RSV, needed oxygen overnight and fluids. Been told in future if he shows similar symptoms to start giving him plenty of sugar to keep his energy high.

We have to start looking at schools now as well ready for 2023, nursery will help us and even walk around any schools with us asking the right questions. They told us to actively looks at schools with average or below rankings as to avoid schools that are only concerned with high achievements.
 
robj20 said:
They told us to actively looks at schools with average or below rankings as to avoid schools that are only concerned with high achievements.
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That's not right at all. They shouldn't be telling you that. My lads SEN worker at his current school told us to look at special schools that deal with children of all disabilities after we asked her what sort of school to go for, we have 1 year left before he's in Junior school you see. She short listed 3 schools in Derby and suggested the one we looked at before. St Giles with Ofsted rating of 1. It's a special school.
 
Sounds good on the whole mate, good to hear speech and walking coming on. My guess RE schools would be not to worry about what the rankings are or what ofsted say, and to go for the one that feels right when you look around. Demeanour of the staff and quality of the facilities the two most important, in that order I'd say. And ideally not too huge of a class size but that's getting harder to find I think. Good luck and hope he keeps developing well.
 
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