What a Day!

Last night was punctuated every 90 mins with Eve's Alarm, with an added element of cat crying followed by cat eating mouse noises! Loverly! At 5.15 am I gave up and got up t have a cup of tea.

On Friday I had had an email from the Deputy head of Christina and Joshua's school tentatively setting up an appointment for 9.05 am today. I had emailed back to say yes that was fine but was too late and didn't get a reply. So I decided to plan for the appointment going ahead anyway.

Yesterday I had had a call from our carer who now also does the school transport escort, she had a tummy bug and would not be able to work. This meant she couldn't do the morning escort either. So I had spoken to my other carer who helped out yesterday afternoon and offered to do the morning transport...so far so good. I rang the Driver and got his answer phone so I left a message and also texted him. By 10 pm I still had not had an answer so at 7 am this morning I rang again, I still got his answer phone. Having to get on and get the girls up and me ready to be out the house by 8.10 I forgot to try again at 7.30 and it was 7.45 when I rmembered, this is the time he should be picking up the carer. I rang again and texted again and still got no response so I rang the carer, she was still at Tesco waiting for him. I presumed he was still the other side of town waiting for carer number 1! What do I do? I rang the head office and eventually got through to the taxi firm owner. He was not impressed with his driver not having his phone switched on. I had still heard nothing by the time I needed to be ushering Joshua and Christina into the bus. So I headed off towards town in a roundabout route to school in the hope I would either pass them coming up or find him still waiting for carer number 1! Thankfully I passed them half way to town and we diverted back towards school.

Arriving at school in plenty of time thankfully I sent Christina and Joshua off and checked my phone for emails to see if the Deputy Head had emailed me, she hadnt so I went on in to see if they were expecting me or not. After a few minutes she came out of staff briefing and assured me that the meeting was about to happen.

This meeting was really somewhat bizarre in it's origins! A few weeks ago Christina had come out of school quite upset about an incident in Maths. One of her friends had been trying to get her drink out of her bag as they entered the maths lesson. Christina had tried to stop him and he had continued so Eventualy Christina got quite cross and there was a bit if a scuffle. Teacher shouted at them and they sat down. However this lad kept trying to get Christina's bag and she had pushed it under her table with her foot. I am not quite sure of the details but there must have been an altercation between them and the teacher gave Christina a detention. Christina, mistress of fair play, felt this was totally not fair as the lad got no punishment and it had been his fault. Later in the lesson somthing else had happened that Christina got the blame for.

OK, so probably fairly minor issue but it was unusual for Christina to protest at a punishment, she usually accepts if she is in the wrong but she was totally indignant about this.

Christina often gets a raw deal in the attention stakes at home, I feel she has a right to as much of my battling power as everyone else but often I just don't have the energy to do anything. In an attempt to let her know that her problems matter as much as anyone elses I wote to the teacher. I told him that I had only Christina's side of the story and that from that it appeared to me that he was picking on her. However this was only Christina's side and I would like an opportunity to discuss the issues with him and hear his version of events leading to the detention.

I got no response. So driving into school one evening that Christina had been at an afterschool event her form tutor was walking to her car. So I wound down my window and asked her if she had heard anything from him. (Christina's form tutor is also a maths teacher). She promised to speak with him and ask him to contact me, still I heard nothing. Lots happened in the intervening weeks and I had almost forgotten the incident, but then the annual reports came out. Although many teachers commented that Christina often chatted too much in class everyone said she was easily brought back onto task and many commented she was a pleasure to teach, was always helpful and cheerful etc. In all but one subject her effort level was between 5 and 7.

In contrast her Maths level was 2....indicating little or no effort! I was horrified! I am not intereseted much in the level achieved, it is the effort they put in that concerns me. However the fact that every other teacher had said very different to this one made me think there was a problem with the teacher rather than the child. The fact that this is the teacher that failed to respond to a request for contact made me even more frustrated.

reading the report a little more in depth I realised that in Maths Christina had reached her end of year target, even though she had apparantly put in little or no effort. There was also contradiction in the comments and even then there was little in the comments that backed up this level 2 effort!

I had therefore contacted the Deputy head to discuss this.

She had asked the Maths teacher to contact me, he didnt, I asked her what I should do about this, she promised to investigate, and this morning's meeting was the culmination of this. The Maths teacher had preferred to meet me with a third party present, this really made me giggle, I am in school so often with Joshua's situation, I have had meetings alone with many members of staff and had even travelled with the SENCO to Worcester for the day. Yet this 6 foot + Burly man was afraid to meet with me alone! I suggested to my wondeful, dippy, scatterbrained carer that she should dress herself up in hr black suit and scrape her hair back into a bun and come with me posing as my solicitor....we decided against it though.

So Here I was at school ready to meet with the pair of them. I was early, I spent 20 minutes sat outside the offices people watching, Always a favourite hobby of mine. It is a busy thorough fare. Several teachers commented on how often I had been there in recent weeks, always with a laugh and a joke. One teacher I had had a previous run in with walked by and scowled at me, again causing me to giggle!

Eventually I was asked to go along to the Deputy's office and there we had our meeting. Over the course of half an hour I think he realised I dont eat maths teacher for dinner, I dont think he answered all my questions I feel a bit fobbed off, but we have established that I want to be involved in my child's education, I want to know if there are discipline issues, I want to know if there are problems with her learning, in short he needs to communicate with me!

At the end I confessed my desire to bring my "solicitor" he thanked me quite seriously for not carrying it through....

So home then and an hour to sort through some emails before heading off to fetch Jonathan from College and take him to a cardiac appointment. One of the emails was from Eve's respiratologist telling me she was meeting to discuss Eve's potential tracheostomy at lunch time and would be in touch later today. I took the opportunity to let a few people know to pray.

Then after a quick Sandwhich I was off to get jonathan, via the petrol station as the tank was empty! That was another £100 gone! Jonathan was ready for me and e headed off to Boston. The traffic was quite bad but thankfully I was able to park quite near the unit I needed so not too much walking. Amazingly we were called in almost immediately and left before the appointment time. I checked my emails again and found I had an email from the respiratologist telling me she had spoken to David and if I wanted to speak to her tomorrow afternoon would be best. URGH, How frustrating, I would have much rather spoken to her myself. Oh Well nothing I could do now, David wouldnt tell me anything over the phone so I had to wait till I got home. As we have to pass Joshua and Christina's school to get home I just parked up there and waited for them. It gave me another 50 minutes to just sit and read more emails, and answer the phone and talk to a teacher who came out....

Once home David would not talk to me until the carer and Christina had gone to fetch the girls from the bus, I agreed with him but desperately needed to know what had been said.

As it turned out nothing had actually been decided, One of the consultants had been concerned about the possibility of Eve becoming 24 hour dependent on her ventilator. His concern being if she was dependent on the ventilator when would we stop.

This is an issue we have already faced and are really quite certain on, our need is to ensure we have given Eve the best quality of life for the time she has, we want to preserve and enhance her quality of life, we dont want to be prolonging her death.

As things are with Eve now her quality of life is compromised by her breathing difficulties, other than that she is happy and interested and animated, if we can relieve some of the issues around her breathing with the trachy then that would be the improvement in quality of life we want.

Looking to the future, as Eve's muscles of respiration weaken then the trachy would allow us to assist her breathing with the ventilator, keeping her more comfortable without the cocnerns of the mask on her face, surely improving then even the quality of her end of life.

I put this and more into an email to the respiratologist, I then forwarded to her a conversation I had had by email with another mother of a child with Leighs, with the Mum's permission of course.

Within minutes my phone rang, it was the respiratologist. She had read the email having finished her clinic and felt it was appropriate to ring me. I Love our respiratologist, she cares so much. I only hope she takes time out to look after herself, I would hate to think of her being burnt out, She really does care.

So we had the conversation again, and she agreed with all our points of view. She feels the next best step would be to have a meeting with the ENT, Intensivist, and the metabolic specialist to talk this through again. She would like me and David to be present to put our views across ourselves.

No Sooner had I finished that conversation than the phone rang again, this time the Local Government Ombudsman, to get further details about the situation with Rosie and Joshua, I spent almost half an hour on the phone to her and then sat down. I felt totally drained.

Tonight Eve is being a real giggle guts. I have just spent a good quarter of an hour sorting out her ventilator mask, every time she gets the giggles the mask slips and the alarm goes off......it could be a long night! Thank goodness it is Monday and we have a carer!

Your prayers for these issues would be gratefully received. Particularly the concern about Eve. We really do want to make the most of what life she has left. Her smile is so precious.

Thanks and goodnight!

I do not know what the future holds but I am glad He holds the future....and the present and me!