A week of woes..trying to spot the diamonds.

It has been a trying time here since the bit of a slip!

The car suffered more damage than we had at first realised...we hope it is all due to water in the fuse box killing fuses and not much else but with the rest of life happening in our house it has been a low priority to get it booked in for looking over. I did find an auto electrician who would come here, unfortunately his promise to ring when he had finished the job he was on has not yet materialised!

The snow conintinued to fall and freeze and begin to thaw and freeze harder and then fall with avengeance on Thursday Friday Saturday c;losing schools and blocking roads and blocking me in the house for days on end. Thankfully our trusty carers battled on through and we were never without the help we needed. Tesco also managed to get through on the Tuesday of David's slip with £271 of groceries....on a side note why did I then have to spend yet another £167 this Friday when I eventually got out the house to replenish the empty cupboards....where does it all go?

Being home from school after just two days in after Christmas was all too much for Rosie who decided 10.30 am Friday morning was a great time to have a mega Tonic Clonic Seizure. Emergency treatment adminsitered she eventually came out of it feeling very upset and disorientated and in need of a cuddle from Dad...or would Mum be better, no Dad...or Mum...or Dad or URGH! a dose of a different rescue medicine eventually settled her to sleep for an hour and half and then she woke up with a cluster of Complex patial siezures and I am unsure of whther I can give more rescue meds....at 2.30 I decide it is 4 hours since the original dose so getting Rosie comfortable is the priority and another dose given. Rosie settles calmer eventually with some bricks and the carer arrives. Appologising for being late but I am so pleased to see her I dont care!

Friday afternoon merges into Friday evening and Rosie was still twitchy and agitated and ataxic and not a happy bunny so we bath her and settle her into bed. Sleep is not coming easily tonight but she is less agitated in bed so we leave her to rest.

Meanwhile Eve is sleeping away not intersted in much we have to stimulate her so we decide to put some clothes away and tidy some bedrooms until carers hours are over. Possibly we should have looked out the window prior to this as the snow had been falling persistantly and there was another inch on the compacted stuff that was lying there. Poor carer looked much less than keen to drive home but decided she had to do it. So promising to text me to let me know she was safely home she left. David walked to the car and made sure she was moving off down the lane and we came in and sat staring at the phone willing it to text! It took her 45 minutes to do a 4 mile journey but I was as relieved as she to know she was home!

Saturday dawned with Rosie banging her bed at 5.30. She looked pale and unsteady but not as agitated as yesterday. I got her up and started her first feed. Since being on total enteral feeds, (tube feeds) again she has been much less stressed about meal times and often doesnt even think of breakfast as a food to eat. This makes it easier on us as we are not then trying to disuade her nor wondering how much of a taste is safe. Bath time mingled on into medicines and then others awake it was time for animal food and Eve's feed set to set up and eventually everyone was up doing their jobs. Eventually looking outside we discovered at least an extra 3 inches on the paths and garden. I was not at all sure our carer was going to make it to us but it was 9.45 and no call so I really wasnt sure. I thought she would have rung and said sorry it's not safe. But I was also hoping they had not tried and failed to get here. Nothing I could do bbut sit and wait. Amazingly she arrived at 10.15 just 15 minutes late and frozen! Her Mum had brought her and the snow was apparantly so deep on our lane the ruts made by the tractors made the central bit a grounding hazard.

Rosie had become more agitated as time went on and so it was a round of medicines drowziness but not enough to settle and tears. With a few smiley moments thrown in. Joshua and Christina enjoyed the snow then decided a video was a warmer option and the day passed with little incident. The snow fell o and off all day but by 5 pm as Sarah was due to go home it didnt look too much worse than it had in the morning. Her Mum arrived and came in for a natter, apparantly the ruts were still causing grounding problems and she had come in hubby's car which is slightly lower than hers so more of a worry. Unbeknown to us at the time they did get stuck going home and had to dig a route out....they were very capable women though, had a shovel in the boot and managed to free themselves without calling us for help.....soemtimes our long front garden is a pain! We had no idea they were struggling!

Sunday was still very snowy so I decided to stay home with Jonathan Rosie and Eve whilst David took Joshua and Christina to Church. I made something warming for lunch as they got home and Rosie remained slightly fitty and unhappy, Eve slept and Jonathan sat doing colouring. it was a peacful morning.

Monday David was off to Stafford to buy a landrover. Fed up of struggling to get out, worried by his trip to the bottom of the Dyke and concerned that should this persist or worsen we may end up unable to seek medical help and supplies should they be needed. He had spent the last three days scouring Ebay and eventually decided on a 1995 Landrover Discvory. Unfortunately there was nothing available nearby so it meant a train journey to collect it. I spent much of the time he was out taking Joshua and Christina to school trying to work out the best train route....an incident in Cambridge meant trains through there were subject too delay. The route through Grantham looked OK but meant a dash as soon as he got home to get to Grantham for the 10.07. Any other posibility meant me driving him over an hour away to a station....not something i relished having not driven since Sunday after Christmas and not really having left the house too much either.
Thankfully by the time he got back and I went to show him the routes trains from Peterborough were now running fine so I was able to just drop him in Spalding and leave him to it. He was going Spalding to Stafford...unfortunately I realised too late I had not given him a written Itenary...I was panicking as to whether he would know which train to get on at Peterborough as he had to change twice for Stafford.,
Spalding to Peterborough.....that bit is fine as the train only runs peterborough to lincoln and back so he had to get off at peterborough. the worry was would he know what came next.

Peterborough to Nuneaton. Thankfully he did have the common sense to ask before he got off the train and good job too as the train had been delayed 15 minutes and there was originally a 23 minute wait between trains that was now down to 8 minutes. He manged to find the platform as the train pulled in and was able to get on and find a seat before it left!

Nuneaton to Stafford hopefully then he would find that as Stafford would be mentioned in the calling at points. The destination of the train was Crewe...I prayed he would find it.

He rang me just outside Stafford to let me know he was going to be on time, I rang the garage and they picked him up....it worked like clockwork! He also liked the Landrover and bought it thankfully....I dont think my nerves could have stood him trying to organise a train home! I had sorted the insurance out ready for him to drive home so that was good. The only breath holding minute left was when Tom Tom wouldnt switch on....thankfully he sorted that out himself.....possibly had something to do with plugging it into the cigarette lighter socket and starting the landy engine!

He made good time and was home for 5.30!

Tuesday they all piled out to school in the landrover...the snow was now compacted polished ice thankfully the school transport turned up for the girls and eventually for Jonathan, although it did get lost on the way here and instead of 9 am Jonathan got picked up at 9.50...he was getting quite anxious and upset before it arrived, another new driver who didnt know him too.

I spent a fair bit of time on Tuesday trying to prepare for the Big Children in Need meeting on Wednesday I am so grateful to Nic, minister and great friend who supports me through these meetings every time. Despite haveing forgotten to put this one on his diary he managed at short notice to change things to be able to take me.

Children in Need Meeting. It is the one time we are able and encouraged to face all out difficulties at once. Both terrifying and very useful. Having to sort through all of the children's needs and how they have changed or not since the last time is always difficult when you have children whose condition has worsened in that time. This is the case for 3 out of 5 of our children. Reading through the minutes of the last meeting it becomes starkley apparant how much things have changed for Rosie and Eve in particular but also for Joshua. I make some notes and think about the order I want to deal with things in and I am bowed down by the enormity of a problem caused by one small aprt of the team that supports us. An agency who is only involved because of the law around NHS funding. We have continuing care funding to supply some parts of the girls care...continuing care is funded by the NHS and the NHS has to del;iver that care by agency staff and cannot give it as Direct Payments to allow us to buy in our own care as we do with the Social Services part of their funding. We were told this could be partly overcome by the Agency employing our existing carer. Sounded really simple! No such luck. It has involved our carer undertaking all the agencies statutary training, involving her in a 75 mile round trip to thier offices each day. 6 meetings in all and no funding for petrol costs or time. Then a huge pack of paperwork and training papers to answer and return to them. I took the agency from March to October to get everything organised to take over her payroll. And since then they ring her two or three times a week to query something straight forward, complain about the time sheets being a day late and then most recently they want to know what hours she is working the next week on a Friday. As much of Iris' time is emergency cover where we either call her in during the day, or ask her to stay later or start earlier this is totally impossible. Things came to a head on Tuesday as we spotted we had made a silly mistake on the time sheet. totally my fault but actually anyone with half a brain would see what we had done and cross it out. This agency would not do that we knew, so at 8.30 I rang them. I explained what had happened, and asked if they would change it. The lady said oh yes that should be OK but my manager will have to ring just to confirm. I said that was fine bu ring me not Iris as Iris had gone home to bed having worked a busy waking night here Monday night. I repeated that twice more before hanging up.
At 3.30 my phone rang, it was Iris, had I rung the agency as she had been woken by the phone and although she hadnt answered it the message left was from them asking her to ring as soon as possible.
I was fuming, I rang them back and blasted. I was told it had not been about the time sheet it was something about Iris' file. I explained this made no difference to the fact Iris was in bed sleeping after a busy night. Oh we didnt need her to answer we wanted to leave a message! But the phone woke her up! I asked you not to phone as she had gone to bed. Oh I am sorry I didnt realise!

ARGH I was so angry! ready to ensure that everyone knew at the meeting tomorrow how riddiculous they were!

So we entered the meeting and Eve's Social Worker explained that the lady from Continuing care needed to leave fairly early on so could we please start with Eve and Rosie. That was fine but actually she hadnt arrived. Everyone else was there by 10:10 so as the AYC worker also had limited time I suggested we start with Joshua and Christina. The agency manager wasnt there eithr and I really did not want her party to Joshua and Christina's needs as it was not relevant to her.
There was a representative from J and C's school which was really pleasing as it was the first time they had been. I explained the deterioration in Joshua's vision and the difficulties he had when he was moved away form the front of the class. I also explained that he was on the assessment programme for a guide dog and I would need to speak to school about how that would work in school.
Christina has had some difficulties settling into life in secondary school and also has come up against some staff who seem to be unaware of her own difficulties. There were promises to address these and to organise a card for her to show staff when difficulties arise.
I was very impressed that before 2 pm that afternoon I had had a call from school setting up appointments to speak with the VI teacher and the Headmaster, along with a promise that two of the immediate concerns had already been addressed and the final one the pass for Christina was in the pipeline for authorisation.

By the time we had finished that bit the agency manager and the lady from Continuing Care had both arrived so we began with Eve.
Since the last meeting Eve's condition has deteriorated, her breathing issues have become more worriesomes and the respiratologist has arranged for a follow up sleep study....on a side note prayer that she actually shows what she can stop doing overnight this time would be good!
Eve's myoclonic seizures were treated over the last couple of months and the result has been almost miraculous school agreed this had been an improvement.
The biggest change in Eve has been her limited ability to remain awake. She sleeps most of the time, and even when not actually asleep she can barely manage to keep her eyes open for more than a few minutes at atime. Although at times when she looks asleep if you speak to her she will smile and if you ask her to look at something she will open her eyes and interact with you for a short while but as soon as you cease the interaction they will close again.

School have emptied a resource cupboard that leads off the classroom and redecorated it to turn it into a rest area for Eve. So now when she needs to sleep she and her support worker retire to this little room and Eve can sleep, her support worker has the comfort of knowing her colleagues are only a shout away and it frees up the sensory room for others to use!

School reiterated everything I had said, and in some instances had word for word in their report that I had spoken. IN some ways it was comforting to know they were seeing what we were, I wasnt having to make them understand or convince them of waht we were concerened about. On another level though it was just more confirmation of the deterioration and took away any hope we might be wrong!

So we moved to Rosie. Rosie has now had investiagtions into her swallow and gastrointestinal dismotility. The findings were that her swallow was no longer safe, this was felt to be a neurological deterioration. We had considered this over the last month and realised that looking carefully at Rosie and looking back at what Rosie once did, her gross motor skills have also deteriorated, and looking more critically so have her fine motor. Taken all together this was a worrying discovery. What we had first thought to be a mechanical error in her oesophagus turns out to be a general Neurological loss of function.
On a brighter note the return to total tube feeding had not been the nightmare we had first thought it woul be. Rosie had accepted it easily. Was actually much happier, spent less time demanding something from the cupboard or the fridge and more time playing happily.
School interupted at this point and said they too had been amazed at the ease with which Rosie accepted only tastes of food and that they too thought she was much happier and less anxious since the change.
Unfortunately there had been no such easy fix lower down the Gastrointestinal tract. The investigations had confirmed that motility was a huge problem the food and waste matter just does not travel alond as it should. This leaves Rosie prone to painful constipation and impaction complicated by the fact that the laxatives we have tried so far....and we have tried many, have either not worked, caused serious side effects or have only worked for a short period then stopped working or developped the side effects. We are supposed to be trialing something new but there has been a mishap in the communicationn between hospitals and that has not yet been sorted.
We discussed the support needed to enable us to meet Rosie's huge care needs, the direct payment carers were working great, we had had difficulty finding a replacement carer when the girls went back to Uni but we are over half way there and with the girls holidays we are coping. This led us to discussing the agency, the principle of how this should work is fantastic, and has freed up direct payments to enable us to employ someone for many of the hours Rosie is home from school and awake, however the practicalities were not so simple and as things stood we are at risk of losing our carer due to the hassle involved.
The agency manager tried several ways to explain why things were difficult, promised to ensure that Iris wasnt called on her sleep days but was insistant they need to know in advance when Iris is working. Despite many peoples insistance that insurance issues were solvable she was not going to budge. We really didnt get very far and I was left feeling let down and angry to a degree. The woman had the audacity to ask me if I wanted them to identify a carer who could come if iris was to go on long term sick or leave. I am not even sure what I said at that point!
Appointments were made for Physio to do another assessment of Rosie and Eve, For Social Workers to revamp Care plans, for Continuing Care lady to ring me and everyone else was going to go back to office and contact me to let me know what would be actioned.
It was a useful meeting but hard emotionally.
Before we left nic and I went to check out Eve's cupboard!
hehehe how many of you would love to put your kid in a cupboard?
It really is nice, cozy, restful. Eve obviously loves it she was smiling away listening to music and ready to drift off. She slept from not long after we left to 2.45!

Hmmm I think I best leave my week in catch up there....To Be Continued!
Thanks for reading this far if you did. I need sleep!