Baby Georges story

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.
 
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.
 
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.
 
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.
 
Droolinggimp said:
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.
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He doesn't require a special school, he's probably just going to get a teaching assistant to accompany him all day.
It definitely shouldn't work that way but it does, for instance tales from a few other families at the same nursery with children with needs in one of the supposedly best schools in the area, they often come home with dirty nappies, obviously having not been changed at all. I'd rather him go to one with higher efforts on looking after the children rather than pushing a syllabus down their throats.
 
Almost a year since I last updated this thread, had no idea it was so long ago.

So George is off to primary school this year, we got first pick of school and after looking at lots including the nearest special needs place we decided on the nearest school it's always undersubscribed so I think there is only 23 in each class.
The play area outside is amazing right next to a couple of farms and it's 90% grass so safe for George to play on.
Most other schools were just tarmac no grass in sight.
They offer loads that we didn't see in other schools they grow their own veg and some fruit with help from the nearby farms.
Even now the school had started altering procedures and things around the school to make it easier for George bit not just so George is the odd one out, they're changing policies school wide. Like the simple thing of which way the walk up a set of stairs because the handrail is on the right so they're going the other way so it's on your left.

We felt the special needs school just wouldn't push him enough with social skills and it really just depressed us.
George is also getting the full money package and a full time senco to be with him full time as he still needs a lot of help but little things like going to the toilet and cutting his food up.
They're also making sure the same couple of dinner ladies are on when George eats so they can help him as well. They really have been great so far. We're going on for a meeting with them soon as well to go over anything.

He's walking much better now though his right leg is noticeably shorter now so he's on the list for some shoes and may need his leg stretching at a later date with a cage.

His eyes wander so they're looking at that as well, they think it's only cosmetic.

He's started hydrotherapy this week as well for 6 weeks to see if that improves anything.

He's still tiny for his age and height we just can't get the calories in him. His one year old sister is almost as big as him now.

The wife has made the decision to leave work and become his full time carer, she was made redundant and we just couldn't see anywhere keeping her on with the constant appointments George has. With his appointments the primary school just said to let them know and there will be no problems with appointments during school time, he had at least two a week often for hours each time.

That's it for now, when I'm next in the PC I'll see about adding some current photos.
 
Dup said:
That school sounds amazing, hopefully they follow through with everything but the proactive start is very promising. I worry what schools my son (no additional needs) will have access to. We're not exactly settled in an area at the moment and he's going to shcool next September. This housing market has really stitched us up.

Brave moves from your wife for you all. What did she do? She might be able to find some casual flexible hourly work as a teaching assistant or school admin if she finds herself bored, or will she be looking after your youngest to save nursery fees?

More importantly though, is George happy? Is he excited for school?
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Exactly that by the time we would have paid for nursery for the youngest and all George's needs we would be worse off.
She may find something once Emily is in school. No idea of her skills will be relevent then. But among with carers, George gets DLA, then she has yet to apply for universal credit which is annoying me no end. Makes no sense to me that were basically not allowed to save up while on UC I like to have an amount for rainy day but I've had to get rid of it.

She's an Analytical Chemist, lab work basically with chemicals and plastics mostly.
She may still take get employer to court as they made "her" redundant not the job which I'm certain they can't do, the two remaining people she worked with have taken on her work. Seems like they didn't like her having 12 months off with the second child or George's appointments which she took unpaid.
 
@LizardKing we checked out the only special needs school there is around here, there is one primary and one high school both miles away though he would get transport.
I don't know if they are the same as what you have used but basically we went into the class he would be going in and half the students couldn't even speak in any meaningful way, the other half were immobile. The school for them looked brilliant but like I said we felt George would miss out on the social stuff. They'd be great for the physical stuff.

We visited about 10 primary schools in total only this one stood out as suitable. Pupils genuinely walked down corridors, all polite and greeted the head teacher as we walked around, the head teacher knew all their names.
The first thing that did stick out as well is that it has been the head teacher that has shown us around, talked to us, and also the deputy who is also one of the senco.
The others it was always a secretary.
It's just a small primary as well George will be able to walk around, the others some were huge and we felt George would get lost in a sea of children.
One place wouldn't even let us visit and simply told us we'd missed the open day.

Where he's going they even invited the nursery head teacher to visit and they're planning on going to his nursery for a few days to interact with George as well. He's already been given a uniform as well so he can get used to it, but they said they're not very strict with it anyway so send him in what is comfortable.
 
It's been a while since I updated this.

Beginning of this year it was pretty much decided he has drug resistant Epilepsy now. Up until recently we were counting maybe at best 2 seizures at worst 30 seizures a day. Some of these so violent he falls flat on his face and breaks his nose. He's probably in A&E once or twice a month.
November he was back in Alder Hey for a week for a video something brain scan where the room is full of cameras and he has his head covered with sensors.
After 2 hours they came back into the room thinking they had put the sensors on wrong but it actually turns out he's having hundreds of seizures every couple of hours.
They're rushing things through now and he's going back there in January 3rd for a detailed MRI and then most likely for surgery of some kind. Luckily the doctor we have at the minute is in charge of booking it all so we very quickly told them we absolutely didn't want St Mary's doing anything with him so we can carry on going to Alder Hey instead.

He's pretty much not even attending school anymore while they can keep him safe he isn't gaining anything from it. So we're now on the list for a special school and from what we're hear he's pretty much at the top of the list.
He probably sleeps 18 hours a day which they now think is because he's so tired from all the seizures which also explains his BMI of 13. They've said much lower on the BMI and you risk organ damage so that's not great. He gets to eat what ever he wants the more sugar the better.
 
Freefaller said:
I missed this the first time around. Thank you for sharing such a deeply personal and incredible story. I do feel somewhat emotional reading that and I can empathise as a parent, but cannot empathise the difficulties and emotionally charged situation you have found yourself in.

I hope things settle down after the journey he's been on - the poor boy having so many seizures :( What's the long term thoughts of the docs? Will they be able to mitigate them?

As others have sent, sending you big manhugs - not that you need it, but always happy to receive a DM if you want to chat. :)
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It's all moving extremely quickly at the minute so we're not on the same page as the doctors, they have said after the video exam they would with other doctors around the country (they have meetings a few times a year to discuss complex cases) talk about what could be done. From memory the next meeting was mid December but they may be doing things like the MRI just as soon as a slot opens up incase it they may have already decided on surgery we're a bit in the dark at the minute.

He is having a cognitive function test today which is also related to surgery brain surgery specifically, you do one before and after to assess if they altered anything.

They have mentioned surgery a few times, the micro seizers can't be fixed with surgery as far as I generally because it's pretty much the whole brain.
Bit the bigger dangerous ones might be able to be removed depending where they are, they also talked about potentially completely separating what remains of his left side of brain from the right side. Stopping the big seizers could also stop the micro ones as the cause is unknown.
They're are still more medications to try as well but they come with increasing side effects.
 
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