A trip to Leicester with Jonathan proved a total waste of time. I am still trying to compose the letter to the consultant expressing our concerns and frustrations.
Several routine non eventful but time consuming general follow up appointments with eyes, chests and general ovehauls. Nothing to report from those really.
A meeting with the new Lincolnshire Service for sensory impairment.. This was quite useful but was also a meeting that I had not recorderd properly on th diary and had actualy not been prepared for, I was sat trying to motivate myself after David had left to take Joshua and Christina and Jonathan to school. Just coming to the conclusion I really ought to make an effort and at least get dressed before he came home, when I realised there were two ladies approaching my front door. I recognised one but couldnt put her in place then they knocked and I opened the door sheepishly. It was Joshua's VI teacher and the lady from SILCS. EEEK!
I appologised profusely and hobbled up the stairs to get dressed.
It was as I was madly throwing clothes on whilst searching my underwear drawer I realised there was a large pile of neatly folded underwear downstairs on the sideboard! ARGH!
OK long skirt and smartish top and sandals, I proceeded downstairs.
Why was it I had not laid eyes in that pile before my guests arrived and yet now they were all that caught my eye through the whole 2 hour meeting. Of course my guests never guessed my dark secret! But as soon as they left I was back upstairs with pile of underwear to finish getting dressed!
The meeting had been useful and some lines of enquirey that will hopefully lead to further independence for Joshua. Some useful discussion around GCSE paper provision. and some thoughts about the what if's with the degeneration of Joshua's vision further.
Also this last two weeks we have had an ongoing disaster with school transport, resulting in us having to make some of the journeys to school and on one evening having to go and rescue Rosie and carers from a broken down bus. The regular driver has let his Boston Borough Badge run out and so we now have a relief driver with no medical training, one of our carers being paid by the taxi firm and us providing a second carer so that there are two trained people on the bus. It is a nightmare!
We have had the girls reviews and the CIN meeting. This has resulted in school coming to an agreement to limit Eve's 1-1 carers to 2 LSA's and the class teacher. They were very not keen to do this but managed to save face by coming up with a solution that they made sound as though it was their idea all along, I was happy to play along with them. I wasnt interested in them accepting they were wrong or being made to back down, all I want is a safe situation for Eve and we have achieved that....I think. Eve though is really not well enough to go back to school, this is not a bad thing as the replacement bus whilst the main one is being repaired would not carry two wheelchairs.
Yesterday morning Christina woke with a lump the size of a golf ball under her right ear. She said it wasn'tt terribly painful but she couldn't hear in that ear. She has had a cold for a few days and has always been prone to ear infections so I rang to make an appointment for her at the doctors. Rosie already had one for 4.45 so to get two together would make life easier. You have to ring at 1pm to get an afternoon appointment, so I did, I was on hold for 10 minutes but eventually spoke to a receptionist, who informed me that they had no appointments today as the computer system was down and they could not access medical records! GREAT!
Today Our minibus has to go for repair to the central locking. The back door does not lock and the key needs a battery replacement. I do hope David remembers the battery.
Next week we have a multi professional meeting at Sheffield Children's hospital for Eve. We are really concerned about her breathing issues. She has not been able to sit for any length of time recently and there is a concern over obstruction. There is talk about Tracheostomy. I really dont know, it is a question of what will give her the best quality of life. We know her prognosis is poor and we know that she has been life threateningly ill and we know that a trachy could improve things but we also know there is a lot of increased care and the potential for things to go wrong. There is no right or wrong answer and we need to be weighing up the pros and cons.
Meanwhile Joshua is being assessed for placement at New College Worcester as part of our tribunal appeal against his statement. He will be going there from 30th to 1st June/July. This coincides with the other going to Hospice so has worked out well.
Matters for praise..... We did get to visit my parents! My Brothers surgery went better than we could have hoped, Tia's Little Princess also had major surgery that has gone extremely well and recovery has been good thus far.
Our God is a great big God....His way, His time, His Love is perfect!
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