Its only taken three years and two months!!!

GwylimT

So my son has had it tough, he was born with a deformed sternum and hypoplastic left heart syndrome.

Due to this he has had lots of operations, his deformed sternum meant he had to be tube fed for a very long time and really we didn't know if he would ever be able to eat and drink normally.

He is back home after a very lenghty stay in hospital for open heart surgery, where he spent most of his time giving everyone the evils.

He gets very frustrated, going by his progress mentally he is pretty much where he should be, but he can't do normal things physically as his heart condition made him too tired. We always said he would make a fantastic actor in walle.

After this latest operation he has been able to get into the sitting up position on his own, lift things without being exhausted.

But this morning he made his biggest leap and crawled for the first time!!

oystercatcher

How lovely for you all. I hope he continues to improve and reach many more milestones.

Primrose

What a wonderful milestone to celebrate. We will all hope that things will now improve for him nand that you can have some hope for the future.

kingfisherblue

That's brilliant news! It sounds as though his operation has been successful, and then to achieve such a milestone so soon afterwards - you must be very proud of him.

Well done Master Gwylim x

Artytarty

A big HOORAY from Belfast!!!

gayleygoo

Wonderful news! May he go from strength to strength I can't imagine how tough it must be to have a sick child, but wish you all the best in your family's future x

pollypenny

Wonderful news, Gwylim.

All the best to him.

Pollycat

You've obviously got a real fighter there, Gwylim.

Thanks for sharing your wonderful news.

Better_Days

You must be thrilled after such a difficult journey. Can I ask how old your son is? (ETA sorry - now read the title of the thread properly!)

My 6mo niece also has hypoplastic left heart syndrome and only managed to get well enough to come home in the last month. She has already had one op on her heart and has to go back into Alder Hey later this month for an op to move her pulmonary artery.

Like your son she is fed by a peg. She also has fluid pooling in her lungs and needs regular suctioning. Her little fingers, toes and nose are permanently blue and it is clear she is often tired.

My SIL got so frustrated not being able to bring her daughter home, and the daily visits to the hospital were a big strain on the whole family. It must be lovely to have your son home and the family together. I do hope all continues to go well.

itsanne

Great news, Gwylim! Hopefully this is just the start of things to come. Good luck to all of you.

GwylimT

Better_Days wrote: »

You must be thrilled after such a difficult journey. Can I ask how old your son is? (ETA sorry - now read the title of the thread properly!)

My 6mo niece also has hypoplastic left heart syndrome and only managed to get well enough to come home in the last month. She has already had one op on her heart and has to go back into Alder Hey later this month for an op to move her pulmonary artery.

Like your son she is fed by a peg. She also has fluid pooling in her lungs and needs regular suctioning. Her little fingers, toes and nose are permanently blue and it is clear she is often tired.

My SIL got so frustrated not being able to bring her daughter home, and the daily visits to the hospital were a big strain on the whole family. It must be lovely to have your son home and the family together. I do hope all continues to go well.

We've been quite lucky to be honest, he was able to come home at 11 weeks, he has only ever had one infection, which was during his last surgery. I hope her surgery goes well, our son recovered much quicker with his second norwood.

Even in older children extremeties are often blue, the blood thinners can cause this too, which then causes all the nosebleeds, which of course never happen in his room, the bathroom or kitchen, so, always when his nose is inches away from the carpet!

He has just had his Fontan procedure, so hopefully that will be his last surgery.