Hi everyone, we had our social worker visit on Monday, after a 3 month wait to be allocated one! I have to say i was very impressed with her! Not only was she a very lovely lady, but she was very helpful. She said she had already discussed with her manager about us getting direct payments and that she had got them to provisionally agree to 8 hours a week to help out whilst i'm at work! Also as i have someone lined up they are sending the crb forms off now in the hopes it will be returened in time for the payments starting. She is coming back next monday with all the info i need and all the forms, all i have to do is set up and bank account with mine and Lucies names on it!
I also mentioned about needing a room built upstairs for Lucie as her bedroom is so far away from our that we are having difficulties hearing when suctions are needed etc. She said she will refer us to OT as a priority. I was very shocked when i got a call today from the lady who does the ot referals to say she had recieved it. Seems i've lucked in with a socail worker who actually does what she says she will!
Also her leaving comment was that she wished all her parents were as confident as me and that she said it was nice to have a parent who puts her childs need before that of thier own!

However the call from the ot lady wasn;t the best apart from teh fact that i was in kwik fit waiting room for the 4th time in less than a week ( next new thread!) she was quite rude, wanting to know why we brought the house we did. Explained that we had 6 weeks to pick a house or we lost the funding from the govenment for help towards the cost of the new house but also it had to be an empty property with no forward chain. she asked why my 6 &3 year old couldn;t share the bedroom with the onsuite, i pointed out a 3 year old and a bathroom don;t mix! Can;t believe she even asked that really! She then asked why a baby monitor wouldn;t work. We have tried but the crackle is louder than Lucies breathing so wasn;t practical as we couldn;t hear anything so pointless having it on! She then questioned why Lucie doesnt have her sats monitor on all night. i explained it was on temporary loan as Lucie had an episode last year and we only use it when we need to check Lucies saturation levels but she doen;t require contant oxygen so it is unessasary to have it on her all the time, especailly as the sensor can burn if left in place for too long and also Lucie is a fidget and would wrap herself up in the wires which in my opinion is also dangerous. Anyway she said that she has to look at cheaper alternatives to having a room built so we can have her closer to us so is suggesting they use a sleep mat that will bleep us if her breathing changes. However she wouldn;t listen when i said her breathing only changes when her tube is blocked, i want to prevent the blokage so need to be able to hear when she needs a suction not be woken after this because her tube has blocked. Surely prevention is better than cure!!??
Sorry about the long post! lol

wow long post lol
congrats on gettin anice social worker but not so good news on your ot .
i am hoping we never need a room built for jaimee as that snotty attitude would make me angry
i hope u get it sorted xx

its always refreshing to get someone who is nice and on a level and actually does what she says she will ours so far has been good too, she even foned us yesterday to say she hasnt forgot us and our direct payment request goes to pannel tomorow eeek so fingers crossed on that!

what an awfull OT tho i suppose they do have a duty to look for cheaper alternatives however not at the detrement of your childs care!! prevention is deffiantly better than cure, if she persists with that idea could lucies doc back you up? or nurse? that would make her stop and think

goodluck

xx

Hello 'luciesmum1'

Have you thought about a video camera you can actually move it around to see your childs different positions, because i am looking at getting one about over a £100 but i am looking at asking NEWLIFE for a grant for this monitor, i also found the monitors werent very good and in the quiet of the night they are soo very noisy then they are cutting out all the time.

I have seen one in the mothercares catalogue if you are interested i will find the reference number and then you can see picture and then google to find it cheaper if you are interested, let me know.

Your social worker sounds tops we are in the process of getting one, so I hope shes got a twin! When you think its all going smoothly someone else says something they shouldnt and puts a spanner in the works and spoils the day.

TaKE care.

xxx