I don’t want to bore anyone (not that anyone is ever boring on this website) but I am so fed up! This is why I’m whinging

We adopted our precious little man at 15 months. He went straight into good foster care from birth. We all knew he was Tof and he had his repair done at 6 days - a straight H fistula. The hospital lost his notes and didn’t follow him up. The fistula grew back within 6 month .sand we did not know So our lad has been inhaling his food for the last 3 years. Since the age of 18 months I had been complaining that something was wrong and was ignored by GP’s etc (although they have been excellent once the condition was explained).

Josh has been on antibioitics since Oct last year but is now facing another Tof repair - it was supposed to be April but as we approached the nearest village traffic lights - the op was cancelled - due to a lack of an ICU bed in case he might need an emergency tracheostomy. I am so cross - and very cross that the birth family have been allowed by the SS to write when they feel like it to @see how he his@ but they don’t even know how he is and I want to scream ‘just leave us alone to deal with this’ I am not allowed to tell them we have ;problems in case we worry them - fine then just leave us alone. He is OUR son.

We love Josh completely. When he runs towards me shouting ’ my mum!’ my heart melts and he makes more of a fuss over his cut finger than any of the ops he’s been through. He has been with 2 years now and despite Tof and Vactryl we could not wish for a better braver baba.

Right - my whinge over

Best love to all of you out there

Hi Alison

Sorry to hear they cancelled Josh’s op, hope they manage to get it done soon.

Hang in there and remember how great you are to take on such an amazing little man in life and remember at the end of the day you can always say if it wasnt for me he wouldnt have such a great life.  You and your family are special and wonderful people for taking on a special child that has TOF and not wanted by their birth family.

My GP says this to me each month so now I will say it to you as I feel you need to feel special.

TOF kids are only ever born for those that have patiences and caring hearts to look after them.  You must be an amazing parent to have been choosen to be a parent of a TOF, and you will be a better parent than a parent of a non TOF at the end of the day due to the little things that you have to go through each day in life with your TOF child.

Funny enough he is right and it is true.  Keep us updated on how Josh’s op goes when he gets it.  We will be thinking of him.

Jo

Thank you Jo. I think I needed to hear that. I’m now off to murder a few social workers…....

Love Ali, Grant and Josh

You and your family are truly great people.We love our little TOF and wouldn’t change him for the world, he has brought us so much joy along with the tears but to have choosen the path of a TOF parent you are special Wishing you all the best of health and better times

Andy, Chris & Charlie

hi, just wanted to say how brve i think you are.

my boy jordan who is 8 now had a re-occuring fistual at 6 months too. however i dont understand why they dont bring him in.

he had another brand new fistual at 3 and he was nil by mouth until they could admit him because of beds etc.

i fully understand what u are going through.

big hugs to you and your family

Thank you. Your wonderful supportive comments mean so much to us. I’m sorry I didn’t reply before but we’ve just come back from a few days in Cornwall and feel much better. As a result I’ve ripped a few heads off at the SS and banned birth family letterbox contact except for the twice a year as originally agreed. Josh’s op has been rescheduled for 4th June so fingers crossed….

Anna - we went through IVF and failed so we can empaphise with the hell you go through. Your efforts and willingness to go through it makes your littlie not only a miracle but to be celebrated. Two fingers to those who think IVF caused Tof and their mindless ignorance. It’s never been proven and never likely to be. S…w ‘em.

I’ll let you all know the outcome for Josh when I can - just wanted to say THANK YOU

Love Grant, Ali and Josh