watching and waiting for first appointments, I am finding this all so hard..

[hazeyjane]

..I have posted here before about ds, who is 9 months and was referred for developmental assessments 2 months ago. We are waiting for appointments to see physio, OT, medical and developmental assessments, a dietician and a Team around the Child meeting.

He is poorly at the moment, for the 3rd time in the last couple of months (chest infections and now tonsilitis).I am having to carry him round on a hip seat all day, otherwise he just cries and cries.

i feel like I am neglecting our 5 and 4 year old dds, dd1 has just had to have blood tests because of a whole load of health issues, and dd2's behaviour is just awful.

Sorry, just needed to have a moan, it has been a bloody awful day, after 2 hours sleep. The waiting is so hard, and I just keep thinking, 'what if I can't cope', I don't think I'm strong enough for all this.

Didnt want to read and run. Its hard to split yourself three ways and soemtimes whatever you do it wont feel as if good enough, but you can only do your best.

Hope your DS gets better soon. Have a [cuppa] and breathe. Do you have any help at all?

I find school holidays hard at the best of times. Children are designed to make us feel guilty, I think. How long do think you'll have to wait for appointments?

Hi hazyjane sorrry you have one of those days.I too feel like i have run out of hours today but tomorrow is another day.I can remember those horrid months waiting for those first fist full of appointments.You will get there just try and be kind to yourself you are only human.x

I think the "hanging in limbo" times are so incredibly difficult. At least once you know what you're dealing with, from a medical perspective, you can begin to come to terms with it and plan accordingly. So sorry things are a bit of a struggle right now - hope it all sorts out for you soon!

having 3 under 6 is no picnic at the best of times, and with the added whammy of waiting lists/illness etc no wonder you are feeling the lack of sleep. once you get to see physio etc at least you will have something more concrete to focus on - being on waiting lists, feeling like time is running away is stressful.

Thankyou everyone.

Handed ds and hipseat over to dh when he got home, put a Barbie film on for the girls, and went out for walk, which I badly needed.

I am very lucky to have dh, who is wonderful, but I feel bad that he is going through all this too, but I am the one who is falling apart. I also have some amazing friends, who are helping out, looking after dds during appointments.

I am seeing the dietician on Friday, then physio /ot on 21st Apr, medical assessment 16th May, developmental assessment 23rd May and Team meeting on 2nd June. So we haven't got long to wait for things to get started.

I know you are right, Justa. We are probably at the start of a long, vague road, I think I'll feel better when we have started travelling down the road.

I wish i could give each dc more focused attention, but I'm so distracted all the time.

Phew, ds has finally fallen asleep, off to bed.

Hazeyjane - if you're anything like us, you are probably the most involved in appointments for the children and coordinating their care and organising the household. Which means a LOT of pressure on you. It doesn't mean my DH doesn't care or anything, but it's just simply the way it is - I'm home more, I'm more comfortable dealing with the medical stuff. DH gets incredibly stressed over that - I tend to "filter" some of the information to him, because if there is a negative "this might happen" then DH worries about it nonstop. He's on meds for depression, and things like that just throw him. It does, however, mean that a fair bit of the pressure sits on me. We discuss everything, and he can be good about sharing responsibilities, but sometimes I find myself frustrated at having so much to try to cope with.

I am the one who sorts out the appointments, and speaks to the hv and gp (dh comes to the paed appointments). Unfortunately it is me who is on the anti depressants! I have suffered anxiety and panic attacks since ds was born, and when I saw the gp about my awful pmt, she thought that I probably had pnd and a lot of bad feelings over ds's birth (she has referred me to a birth trauma counsellor).Dh has been very supportive throughout the whole thing, but as I'm sure you know, it can be hard being with someone who is suffering with this sort of stuff.

Anyway, as growlybear said earlier, tomorrow (well today now!) is another day, so I am going to try and make this a good one!

Well just had ds's first appointment with the dietician, which was a bit of a farce, because the hv team hadn't informed them about the developmental assessment, so she was ready to talk about things from a behaviour point of view, rather than the fact that he is still on purees and tons of milk because he is not great at swallowing, and all the food gets trapped in his mouth.

On the up side it did make me suddenly realise that I am trying to do things with ds as if everything is following a 'normal' pattern, so i've been stressing about ways to get him to eat more solid foods, whereas - as the dietician said (and as i think you have been trying to say, Justa) I need to be followed by his needs, which means that if he needs to milk feed 3 times a night and just have small amounts of puree, then as long as all his nutritional needs are met, then this is what we have to do. I know it sounds obvious, but I have been beating myself up about things like this, whereas I suddenly realise that we now have different needs as a whole family, and sod what other people think, I have to do what my family needs to be as happy as we all can be.

You'd hope to have finished with night feeds, I suppose. If your DS is delayed all these milestones will take longer? I guess you'll have to try not to compare with other NT children, it's soul destroying. Just compare with your own DS, last week or last month. Small steps. Though months of night feeds is just so hard for you. (((hugs)))