It has been months since I last posted anything on here and I’m back again but only with worries!!!!

Our little Max is back in LGI today as he is due to have surgery tomorrow morning. He was short gap, but had many stretches and then in Jan during surgery they perforated it!!! 6 weeks in hospital and back and forth to theatre we decided to bite the bullet and have his oesophagus removed( didnt really have a choice!) and went home in March having to sham feed him and a gastrostomy button!!! Luckily I was given an email address of a family, who lived near us, who had been through this a few years ago. I have to say that her emails have helped me get through some of my bad days. Thanks Caroline x

We have had an amazing 7 months at home. No visits to theatre, 2 holidays, one of which was abroad, and I have been back at work full time. Life has been ‘normal’.

Well, the bags are packed for this afternoon and the tears have been coming since, well weeks ago. As much as I know its for the best, he wont know anything as he is only 13 months old etc etc etc. It is so hard to go through this that only now do the tears start again.

Thank god for the website and for families out there that understand.

Mum to Max, 13 months old x

Hi Not sure I can offer much direct advice as you have been through far more than we have, but I didn’t want to read and not reply. This forum is indeed a godsend and you are right that there are families out there who do understand. I never fail to be floored by how isolating it can feel having a child with this condition but am constantly reminded that we and you are not alone. Keep strong. Little Max will once again amaze you by his strength, I am constantly astonished by the bravery, cheekiness, good humour and strength displayed by our little TOF children. He will get there and you will too. Draw comfort form the fact you have had 7 months that have been great and those months will come again.
I wish you lots of luck for tomorrow, hope it goes well and that Max will be home again soon. Finally to say things do get easier as they get older. Eva is now 4 1/2 and although we still have our issues I am amazed that she has got this far!
Lots of love
claire