A week of School holidays

Well it has again been over a week since I have managed to blog. Sorry about this I am not finding time and energy at the same moment have a computer avaiblable!

We have had a few eventful days over the last week. Friday 9th April we managed a Special Kids in The UK outing to White Post Farm. This trip had been organised for several weeks and it fantastically ended up being on the warmest day of the year so far. Sunshining Children happy and meeting up with friends old and new it really was a great day.

It really is something very special this support group and if you are a UK parent/carer of a special needs child I would sincerely recommend you come and join us online and then get yourself along to a meetup. Having not met many of the families present for over 2 years it was as if we had been together regulalry because of our frequent online contact. Even the children seem to feel this way with Christina and Joshua meeting up with other siblings they havent seen in years and carrying on as if they were out playing yesterday.

Sadly the day ended on a less than good note as Rosie decided to say farewell to friends with a Tonic Clonic Seizure. Thankfully a dose of Rescue medication brought her out of it but she was really unhappy and distressed/confused as we left. This continued all the way home and throughout the early part of the night. She was subdued on Saturday but by Sunday morning was happy and cheerful at Church.

On arriving home from White Post David delivered Christina off to the Girls Brigade Sleep Over. They had a great fun weekend including a trip to Hunstanton, Swimming and a Fish and Chip dinner. This left me Christinaless at home and boy did I miss her!

We had a quietish day on Saturday, Sarah and I took the girls to Tesco and The Factory Shop Joshua came with us to help out and we had a good couple of hours out in Sunny Holbeach.

Sunday we managed to get up and organsied for Church, discovered roads closed on the approach which meant we were facing the wrong way to get onto the Church Drive and Coach parked right outside too. We managed to turn by the Parish Church and come back the right way round to get on the drive and all was well. That is until once the children left for Sunday School and the Sermon Started Proper! There were a significan number of extra little children in the group that Jonathan usually joins and so we decided he would be better off staying with us. I am rather glad we made that decision as just a little while into the Story of Joseph and his Dreams Jonathan collapsed forward off of his chair. With a very slow and barely palpable pulse rate and not really responsive I asked for someone to call an ambulance. Jonathan started to come round and after a few minute we got him out to the Foyer and he was recoving well. by the time the first responder car arrived he was almost back to normal. They took blood presure and blood sugar and checked his SATs. His BP was quite high to my mind at 160/105 which seems odd, as if it were low it would make more sense. but by this time he was quite cheerful and back to respinding normally.
We decided not to head off to hospital but took him home where he ate a good lunch and carried on with all his normal Sunday afternoon activity including his job of emptying the dishwasher.

Monday morning was an early start for Me, Joshua, Sarahe Rosis and Eve. We had to leve the house at 6.30 am to catch the train to London for Rosie's Great Ormond Street Hospital Appointment. We arrived at the hospital ten minutes before the appointment which was great timing! The appointment itself left more questions than answers as the Doctor examining her discovered Mottling on her Macular and pale incomplete Optic Nerve. She felt these were probably not new findings but could find noting mentioning either on Rosie's notes. The main Consultant came in, He has been Rosie's Consultant for 10 years and had never mentioned either but was very much trying to play them down. He was also promising us that he would personally talk with Adult services to ensure Rosie was passed on to someone capable of meeting her needs. We did come away with a safetynet appointment for 6 months so we will wait and see!

Tuesday was Joshua's turn to go off on a sleep over. This time to a friend from School. This is progress! Joshua finds making friends less than easy so it was a big step for him. Again I missed him terribly, it really made me realise how much I rely on Joshua and Christina for so much. We invited one of Christina's friends from Primary School over to sleep Tuesday afternoon till Wednesday Morning. This worked really well, D is a lovely little girl who we barely knew was here. Apart from the shrieks of laughter and the contentment on Christina;s face. They spent time in the Hot Tub and we all enjoyed a trip to Wisbech to get material for Rosie;s curtains.

Wednesday we had a visit from Nursing Staff from the new Hospice to draw up the care plans for Jonathan, Rosie and Eve for our visit next week. This was a traumatic and draining experience as well as a chance to get to know one another a little. Once they left David and I took advantage of having an overlap of carers here for a while and headed out together to escape the pressure of too much thought! It was only an hour and a half, doing some essential Drug ordering and picking up supplies for the Hot Tub but it gave us the opportunity to divert our thoughts from the childrens combined difficulties.

David collected Joshua from his freinds before tea time and then everyone headed to bed early as we had planned an almopst surprise day out for Thursday!

Another early start and we were on the road headed for a day at Thorpe Park. We had a great time for the most part of our day there! Taking full advantage of the children's disabilities to jump the queues! Unfortunately there was no jumoing the queues on the roads as a Volcano Erupting in Iceland caused tremendous traffic congestion on the routes into and out of the Capital. This more or less doubled out traveling time! However apart from Traffic and the fact that on arrival Jonathan did a repeat peformance of his collapse on Sunday...this time resulting in him wearing the contents of the bottle of Coke he was about to drink! We had an amazing day!
It was extremely late by the time we arrived home...around 10pm rather than the 7-8pm we had first planned...sadly this resulted in us having to drag Sarah and Graces Dad out to pick them up...poor chap is supposed to be on holiday and I dont think has had much time to himself so far!

Anyway another HUGE piece of news this week is that Sarah has passed her driving test!!! YEEEHAAAAA! Congratulations Sarah! So pleased for you....of course you now need to work more hours to pay for the insurance and petrol! But at last you are no longer so dependant on Mum and Dad to drive you places! Thank you for wanting to come over and see us almost immediately!

Photos will follow shortly! I am suffering big time from far too much activity over the last couple of weeks and can barely stand this morning! A little worriesome as I have to drive to Grantham in an hour or so for a wheelchair Services appointment for Eve! Not one we can cancel as it is vital she gets her new chair ASAP!