Baby Georges story

[Dis86]

He's adapting well, watching him do things with one hand is frustrating though.
I guess the thing were waiting for now is signs that he will walk. Don't he will ever crawl bit late for that now anyway.
Talking seems to be on the cards at least, swore he said "Hiya" the other day, and in obviously drumming "da da" into him. Lol

I know it's different but I was watching an episode of car s.o.s t'other day. There was a gent on there who had some horrible luck and ended up starved of oxygen for 10 mins. He was in a 2 week coma and when he came round could no longer see, walk, talk or control his bodily functions.

The guy is now learning to walk again. He can talk (they provided subtitles but these were overkill) and he's got good control back.

Never ever lose hope for what George will do. He's very young and his body has many years to start adapting to his disadvantages. It'll definitely wipe a few of those problems out.

 

[robj20]

I'm thrilled so many of you are even reading it. It's a lot of text.

My wife and i are putting a fair bit into raising funds for the house we stayed in so much so my work donated £1000.
Her work are adding them as official sponsers or something and hoping to raise up to £20,000 a year going forward. The woman they went to see at the house apparently was gob smacked as it would instantly make them there biggest donator.

The whole thing had made me see what a great thing the NHS is as well. I almost won't hear a bad word said about then anymore. I know they screw up sometimes and people complain about waiting times, bit I've seen it from a truely "can't wait" perspective so chances are when someone thinks they should be seen next day you just think of what could be happening that really can't wait.

We've spoken to all sorts of doctors was interesting to see there reactions when we tell them about Alder Hey and how they instantly recognised the two surgeons he had they nearly all day the same thing. "God they really threw everything that hospital had at you" apparently the two are highly regarded world wide. Then on the flip side it reminds us how poorly he was.

 

[Thekwango]

He loves his food, some of the stuff he eats, i dont know why people say that cant get there children to eat veg.

This was a pasta sauce made with broccoli, peas, spinach, pine nuts and olive oil, with prawns in it. He went mad for it.


He generally eats what ever we are having, i don't believe in baby food.
The dietitian was amazed at what he eats.

But so far his favourites seem to be fish mainly sea bass and salmon, prawns, chicken, lentils, rice, potato and bread.
He wolfed down moussaka that we had the other day, and we went to a Chinese restaurant and he loved the prawn crackers, prawn toast, spring rolls, and chicken in ginger and spring onion.
He seems to like spices as well, already eating things spicier than my wife will eat such as madras and rogen josh.

Still below that silly 0.4th centile line though. Hate that they are so obsessed with that graph.

said it before and i'll say it again, what an absolute warrior. George has more heart and fight in him than most adults i know. he looks so bright and happy which is amazing given what he has been through in his short but wonderful life. internet love and hugs galore for the little man. he's an absolute inspiration.

 

[robj20]

said it before and i'll say it again, what an absolute warrior. George has more heart and fight in him than most adults i know. he looks so bright and happy which is amazing given what he has been through in his short but wonderful life. internet love and hugs galore for the little man. he's an absolute inspiration.

He certainly makes it all with while. There were times i regretted putting him through it all, but thankfully he won't remember any of it and he's happy.
Also we live in times where there is a lot of support and it's only getting better. Already taking about what they can do in schools to help him, such as moving the toilet roll from the right hand side to the left in a few cubicles, lots of little things that most won't even notice but would make Georges life easier.

 

[Thekwango]

He certainly makes it all with while. There were times i regretted putting him through it all, but thankfully he won't remember any of it and he's happy.
Also we live in times where there is a lot of support and it's only getting better. Already taking about what they can do in schools to help him, such as moving the toilet roll from the right hand side to the left in a few cubicles, lots of little things that most won't even notice but would make Georges life easier.

that's brilliant to hear fella, genuinely. what George and indeed yourselves have been through is unbelievable and puts a lot of the trivial **** that some people think are problems into real perspective.

 

[robj20]

Cant shut him up now, "da da da da" constantly.

Had physio last night as well, and she was mega impressed with him, showed some solid improvement in his right shoulder movement. He managed to push himself up with it on his front. She thinks he should be able to do a commando crawl eventually.

Neurology next week at St Marys, this is his 1 year appointment from leaving hospital, think its every year now for a good few years. He will be having an MRI to see if anything has changed.

 

[DrToffnar]

Incredible story my man. Work at a maternity unit myself and hearing these sorts of inspirational tales is always amazing. Will be sharing it with the other staff for sure.

You and you're wife should be bloody proud of yourselves, and of wee George too of course! Though I'm sure you are

 

[Stringy]

I can only begin to imagine how your ordeal was; I'll never forget the heart wrenching feeling when my little one initially didn't breathe for himself when he came out due to my wife having had diamorphine. Watching him rushed out to the fancy little resus table was horrible, especially when they were given him chest compressions with a face mask on. Thankfully it resolved itself quickly and there doesn't appear to have been any effects from it.

I wish you all the best for you and your family for the future, George certainly seems to be a fighter; mine is 20 months old now and I can assure you the 'fun' doesn't stop

 

[WantoN]

I cannot express my delight and joy for you. Little George looks such a happy, wonderful boy. He has the strongest, bravest parents in the world.

I have no idea the pain and worry you went through, but I know the horror and frustration of watching a medical team out of their depth, making choices you know are mistakes, while everyone assumes you're a clueless moron.

I wish you all the best, and I know little George is going to have a wonderful life.

 

[robj20]

MRI went well, no change. Now his soft spot has gone we only have behaviour to go off, but they think it highly unlikely he will ever have issues again. So thats good news.

Saw the Dietitian yesterday and they were very happy, hes still under the 0.4th centile line that they are obsessed with but hes getting closer each time.
They were very impressed with the food we feed him and said they have never experienced a baby with such an advanced and varied diet. Also impressed that he only has a bottle now at 5am weekdays. Breakfast is usually porridge with plenty of golden syrup or weetabix.
Dinner is often chicken with veg and chips. He will have yogurts as snacks. For tea he has what ever the wife and I are having so last night it was Moussaka and some salad, for supper he had some malt loaf with butter on.
They found it funny that he will eat hotter curries than the wife, he goes mad for them.

He just doesn't eat huge volumes and has a fair few off days where he eats very little, like yesterday hes been hot so think hes got some more back teeth coming through, also been sick a couple of times yesterday.

Hes been referred for an eye test as the dietitian thought his eyes weren't always tracking the same, but i have noticed his right eye sometimes goes a bit lazy but its very infrequent. Hes also now referred to a local team (i forget there name) that will take over from Simon his Paediatric Consultant when he decides to discharge him. Hes already had George on his books for much longer than usual, normally discharges patients at 8 months or so.

Speech and Language were there yesterday as well and were happy with him.

So yeah overall everyone is as happy as they can be.

 

[Vidar]

Its great to hear your kid is doing so well Rob.

 

[Thekwango]

well done George. it must be such a relief for you both to know he's improving so well. long may it continue.

 

[Pez]

As a father of a child who needed immediate open heart surgery, that was a harrowing read. My experience left me with PTSD, which I immediately felt setting in just reading this thread. I'm sorry that anyone ever has to experience anything like this and the absolute hopelessness you feel being unable to change the situation in front of you.

I'm also over the moon that your story has a happy ending, he's a cracker

Like you I spend time raising money for the NHS (specifically Birmingham Childrens Hospital) and also volunteer as a community first responder - It's my way of giving something back.

 

[robj20]

As a father of a child who needed immediate open heart surgery, that was a harrowing read. My experience left me with PTSD, which I immediately felt setting in just reading this thread. I'm sorry that anyone ever has to experience anything like this and the absolute hopelessness you feel being unable to change the situation in front of you.

I'm also over the moon that your story has a happy ending, he's a cracker

Like you I spend time raising money for the NHS (specifically Birmingham Childrens Hospital) and also volunteer as a community first responder - It's my way of giving something back.

We have been repeatedly asked if we need someone to talk to. I find I have little to no patience these days and have very little time for people.

 

[.Lethal]

Glad everything worked out in the end but those events are absolutely awful, I wouldn’t wish that on anybody.

I hope they have a long enjoyable life ahead of them

 

[Pez]

We have been repeatedly asked if we need someone to talk to. I find I have little to no patience these days and have very little time for people.

I know that feeling all to well pal My email is in my trust profile if you ever feel the need to vent to someone that's been through a similar set of events.

 

[Blinkz]

Amazing that George is doing so well and managed to push through such a hard start to his life. Its great to hear stories that end well, sadly it isn't always the case.

I'm unfortunately one of the many parents who's children didn't make as far. My son Seb was born premature at 22 weeks, lived for 41 mins before sadly passing away in his mothers arms. The stats are scary; 15 babies die before, during or soon after birth a DAY in the UK. However hardly anyone knows how bad things are as its a taboo subject that people don't talk about.

 

[panthro]

I was ******** myself reading that the whole way through but so glad to see he's doing really well now. The NHS really is an incredible foundation and the medical profession just boggles my mind with what they can do.

 

[LoadsaMoney]

Thats great to hear, that hes doing well right now, all the best George, and to you's too.

 

[robj20]

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.