I don't know what to do

[elliejjtiny]

DS4 has a cleft palate, ventriculomegaly, development delay, hypotonia. He is meant to see the paed every 2 months. We don't have a health visitor at the moment as she is doing her MA but we can see the HV from another dr surgery on a Wednesday morning but she doesn't know ds4 and we usually have other appointments that clash anyway. We've missed the last 2 paed appointments because the first one it was raining, hailing, floods etc (we live in somerset and the appointment was at the worst time of the floods) so after waiting for ages at the bus stop getting wet we gave up and came home. I'd been to hospital for another appointment the previous day and the bus home had been 25 mins late and taken 45 minutes to do the normally 15 minute journey home. Next time DS1 had a tummy bug. There is only DH who would be willing to look after a vomiting 7 year old and his boss wouldn't let him go.

New appointment scheduled next Thursday. DH is on holiday from work next week so I spent about 5 hours on the phone last week getting as many appointments that week as I could because DH can drive and I can't and these things are so much easier with a car. On Monday my Dad died, really suddenly and today my mum rang to say the funeral is next Thursday. I don't know what to do. I can't not go to my dad's funeral but if I cancel the paed appointment it will be another 3 weeks before I can get another one. I'm worried that it's been too long with no monitoring. I've told my mum not to worry and I'll sort out another appointment. What should I do? DS4 is 9 months old and it's been 3 months since he saw the paed.

I would go to the funeral and explain to the hospital you have been the victim of a horrible set of circumstances so sorry to hear of your loss x

Sorry for the loss of your dad and so suddenly too.

Phone the hospital, explain all the circumstances, say you are really worried about ds4 and ask for the earliest possible appointment.

Thanks everyone. The irony is that my dad offered to take me to this appointment, even though he lived 3 hours away to make sure we actually got there this time so now my mum is worrying that my dad wouldn't have wanted me to miss the appointment because of him. So it's partly me worrying about ds4 and partly me wanting to be able to tell my mum that it's all sorted and it's rescheduled. I can't go without DH because I can't drive and I've already said to DS1 and DS2 that they can come. I don't think I could take a 7 year old and a 5 year old plus wheelchair on 2 trains and the underground on my own. I've been trying to get hold of the paed but no answer so far. I know she sees emergency patients on the paeds assessment unit so I'm hoping she will be able to fit ds4 in then or maybe she has a cancellation.

Just updating to say that I phoned the paed's secretary and she is going to squeeze him in at the end of clinic on Monday .

Im so pleased that its been rearranged. I lost my mum in the last week of my pregnancy of my twins and I had no end of appointments at is was a difficult pregnancy. When I saw the paed and told him my mum had dies, the team did everything they could to accommodate me and to make sure I could go to her funeral. They wanted to admit me to hospital as the shock obviously had an effect but they arranged nurses to come to my home and I was put in bed rest and was able to get to the funeral. Medical professionals when you are going through difficult times usually will do something to help you. Hope the appointment goes well on Monday x

Thankyou. DS2 is pleased about the date as it clashes with the school disco so he won't have to cope with the TA asking where his permission form is (I'd explained to the teacher that he wouldn't be going) and suggesting that if he tries it he might enjoy it.

Thanks for the honks as well. Much appreciated after being told that DS2 isn't "properly disabled" by some twit who thinks DLA and wheelchairs are handed out like smarties and that DS4's disabilities don't exist but the tiny scar on his face is a terrible tragedy .

Glad its got sorted.

You know some people talk nonsense but it is really hurtful when they do it to your face.