Back to School

three weeks and a day since we last had a child free day! So should have been chance to take stock, sit down?? take a break???

Not exactly...First off get everyone to school, then off to Jonathan Rosie and Eve's school to ensure everyone was happy with the changes to Eve's Care plan. Back home to organise medications and then ring Community Nurses to organise enough Oxygen Cylinders to enable us to keep Eve's supply up together!
Ringing the Community Nurses was not quite as simple as it sounds. First off I can't find the booklet with the Pager details on, then I can't find the scrap of paper I wrote the landline numebr on, then a search on the internet finds me the details I need and the phone is engaged...for twenty minutes!
Eventually I get through and Our Named Nurse has just left to do a visit then is away all week!
Someone else came on th ephone to talk through what we needed. In trying to relay all the cahnges we have seen with eve over the last three weeks and how we have arrived at the 24 hour Oxygen situation I end up in tears and probably very incoherent!
Eventually we get round to organising the extra cylinders needed for school and then she tells me that actually our CCN is no longer having a caseload so we are being handed over to another CCN. Unfortunately they can't find Eve or Rosie on the system so no one is sure who will be taking them which is probably why we havent hear anything from them in a while!
Howeve this person I am talking to thinks it would be a good idea for whoever is having us on their caseload to come and visit! Due to holidays and workload that probably wont be until next week now....only we are not here next week as we are off to the Hospice for some much needed respite!

Not long after this conversation I realise it is fast approaching 1pm and I have had no thoughts of lunch at all. David has been beavering away all morning and has solved the problem of the tap in the Kitchen, has solved the leak under the kithcen sink so we now have cold water at the mended kitchen tap. He has built shelves in Jonathan's bedroom to house his boat collection and is now in the process of finishing the woodwork around the sliding door! I feel so inadequate! I have achieved only one of the four things I set out to do! Everything else is still in the process or failed!

So lunch! Only there is no bread out the freezer! Thankfully openeing the freezer I spy a pack of crumpets...managing to remember to get bread out al the same I head back into the kitchen with plans of toasted crumpets with Gloucester Cheese with onions and chives!
YUMMMY!

Just finishing eating that and the phone rings...Hello it's L.B I am running late is it still OK to come on through to you?

hmmm I am struggling to think who L.B is and why she should be coming!

I have to be reminded that this is MY Social Wokre and she is coming to go through the Direct Payments that have not been paid to us over the last 14 months....it was when I got the second letter telling us we had a nil contributions that I realised we still had not received a penny of the 10 hours a week I was awarded 14 months ago!
Thankfully her call gave me time to clear away some of the junk from the lounge before she arrived and we did at least have room to sit!
It appears there is no record of a care plan for me. No body knows how the ten hours were arrived at and it appears I wont get anything like that! Hey Ho it was a nice dream! I wont hold my breath whilst she tries to sort something out!

So we are now heading rapidly to 3 pm and schools out!

A quick glance through some messages and I am reminded of a very precious little boys anniversary today!
A little boy who lives in our hearts daily as his parents have been so kind and generous to us. We cannot head to the bathroom with the girls without a reminder of this precious young man.
J's Mum is very special to me as at a time when our lives were in total turmoil her selfless desire to reach out to others in her distress brought us into a group of families of disabled children. At that time in our lives K and J reached out in love and friendship and support and enabled me to think clearly and take stock of where I was and made me believe in myself again!
Since that time nearly 6 years ago K has remained a dear friend...although our contact is infrequent her love has touched a part of us and will always be a part of our life.
Little J sadly lost his batle for life a year ago today. His Mum has written so eloquently of that last day and the wonderful memories of the earlier part of the day and the sadness of the end.
K and family we send our love to you!

Hugs
Tina