Appointments, Telephone Calls, Letters!

Last week was half term which meant Monday I was looking forward to some child free time. Sadly I forgot the Window men were coming to fit the window board they forgot to fit when they came unannounced to fit the windows...the same window board that the office forgot to issue paperwork for the day I did wait in for them...thankfully I passed them on the way to school and they understood my Makaton Signing of:-" going to school 5 minutes!", and they were waiting for me when I got home.
As far as I was aware I was expecting a visit from another professional at 10 am...at 8.50 I recieved a phone cal canceling same professional who thought she was coming at 2pm....oh wel at least they rang before I was expecting her to arrive.
I settled the window man upstairs and went down to put the kettle on longing to drink my first HOT cup of coffee for over a week. I had not quite got as far as the kettle when the phone rang again...I often pick up a family on my way to school. This Monday morning I did again sadly the little boy had apparantly left his lunch box on the back seat of the car! I said I would take it back later asking the seceratary to call me back if I had not done so by 11 am! Kettle on and coffee made AHHHHHH that was good!
By this time David was home, Window man had almost finished and it was time to start retrieving the house from under the muddles!
Just after lunch the phone rang again with a reporter from a National Newspaper wanting to send a Photographer round to take photos for a news stroy they were doing on Rosie and Cornelia De Lange Syndrome. I managed to organise that for just about as the kids came home form school so at least they would be all together and changed into reasonable play clothes.
Then the task of trying to sort out the hospital appointments and questions to professionals and trying to get some answers to the problems Eve is having,

Hospice Nurse arranged to come out Tuesday Morning, Care is just about resolved fro the admission to Sheffield Childrens on 8th, Jonathan's eye appointment rescheduled.

The Photo shoot went quite well....broke the ice for David as the photographer had a Nikon Camera! David is a Nikon man and they chatted very amicably about lenses and light meters and flash guns etc.
This photographer was very patient with Rosie and managed to get some great shots I think....too late I got a message from a friend suggesting I ask him to download his memory card to our computer...never mind hopefully if he ha some nice pics I could get them from the agency.
Eve arrived home from school very tired, she slept on and off all evening but woke very unhappy later on, we gave her her regular medicine and added in some pain relief but she continued to be unhappy and twitchy, jumpy until 1 am when she finally settled to sleep though still jumpy.

Tuesday dawned hot and sunny again and Eve was not a happy bunny at all. Everyone else headed off for school but Eve stayed home and slept the morning away. I put a call in to the metabolic Nurse to call me back. I have so many questions about Eve's condition. Her heart rate irregularity, her breathing effort, her bowels and these horrid jumpy jerks that wear her out, she also does seem to be in pain at times.

The Hospice nurse arrived and we sat and chatted and thought about Joshua and Christina's issues and how Rosie was doing and how hard it was now Jonathan could not stay at the hospice at the same time as the others and how the new build was coming on for the adolescent unit. Then we got round to talking about Eve and our worries and fears and hopes. P is insistant we need to get to the point of accepting we cannot make her better. We have to accept this is her deterioration, we need to get to the point of accepting we cannot find anything else to help her. It isnt what I want to hear and I am not ready to give on the hope of making her more comfortable.
Accepting her condition is progressive and degenerative I think I have done. But acceppting that we cannot do anything to improve her quality of life or remove her pain or lesson her discomfort???? How can you accept that?

Today I got the call back from the Metabolic Nurse. J is so jolly and supportive and I always feel like a ray of sunshine entered the room. Yes she also mentioned a deterioration, she thought there were things we couldnt change, BUT she also looked at the things we may be able to change or at least look into...she is going to talk to someone about her Myoclonic issues, she suggests we get a stool sample checked out, she also said we could safely give low doses of pain relief regulalry, Hopefully she will be able to see us whilst we are in the sleep unit next week and she is also going to try and arrange for the metabolic consultant to come and hopefully answer some of our questions. She will make him aware of the things we are concerened about.

Also today I had a visit from the Education Authority. Hopefully we have thrashed out the problems with Eve's statement and that will then be one less thing for us to worry about and fight about.

Tomorrow we head towards another milestone. The Children's Community Nurse is coming to start the discussions and paperwork for End of Life Care.....making plans for what we want to happen should an emergency occur, should Eve's condition dramatically deteriorate, Should anything out of the ordinary happen particularly when Eve is not with us, our wishes need to be clear and precise so everyone knows what we want to happen.
A Copy of this plan will be with the GP, The hospitals, the Ambulance Service, School etc etc.
This is going to mean thinking about the unthinkable. Not quite sure how to get my head round this one....it isnt something that has to be completed tomorrow, it is just starting to look at it and getting our thougts out in the open.
One thing we are determined about is should we reach the point where the hospital doctors have nothing to offer, then we want to transfer to the Hospice...we dont want to remain on the ward when there is nothing else left!
Well that's a start isnt it?
Also this week, Christina is reading in Lincoln Cathedral today for the Church Schools Festival. She is quite proud! So am I!
Joshua has his first after School cricket match.....so why do both have to occur on the same night??? Thankfully Christina's Head Teacher has offered to drop her home! It is simple acts of kindness like that that make such a huge difference!

Meanwhile we have revceived a letter from the inland revenue stating a mistake has been made on the National Insurance contributions of 2007/8 for one of my employees! I need a secretary!
Hopefully the payroll company will be able ot sort that one out...I have forwarded the letter to them anyway!

We have also had further communication from the solicitor dealing with our problem with the builder...not particularly looking good! communications seem pretty lax from the other side!

So all in all it's life as normal here Chez Hillier!

Well perhaps not totally normal just had the TV station on the phone now...they want to do a feature on us! URGH! I have stressed we do not want to go on the TV singing our own praises! Please dont put me on a pedastle I am afraid of heights!!!
Our aim with the local paper was for an article to highlight the work of the CdLS foundation...I think the local paper did a good job of that, The reporter from the national Newspaper also knows that is our aim and has promised to make that a large part of the feature.
So now I have to trust the TV to do the same! They are going to talk about it and get back to us!
Watch this space!

Life in our House!!!