June to February 2006
Firstly apologies for being very slack in providing monthly updates post May. We seem during the last months to have been exceptionally busy getting our lives back to some sort of normality.
June saw a trip to Chester Zoo specially put on for sick children with police cars fire engines and the army on hand to entertain and a personal guide, Dixie. James and Lauren loved the trip loved the trip.
July and Charles and Jane managed an evening out together at the Bunbury Ball – our first evening together for a long time and very enjoyable time was had by all. By this time James was allowed to see more of his friends as long as they were well. However they all seemed to be too busy with pre-school, swimming lessons etc etc. So understandably James got increasingly bored and frustrated with life and spent the majority of these two months stuck at home with Jane and Lauren, however given the good weather there were a few trip out for the family picnics.
It was great news therefore to hear at the end of July that the medics at Birmingham were happy for James to start school in September. This was a huge milestone for us as only a few months ago we were not even thinking of school as becoming a reality for James. The problem of course was getting him into a school given that the summer holidays had just started and the annual school intake selection procedure had taken place way back in January at the time James was having his transplant.
There were only 2 schools we would be happy to send James to given the fact that he had completely missed out on the whole preschool experience and needed extra support from friends to settle in due to everything he had been through. On visiting these 2 schools however there was a clear favourite for us,EatonPrimary School.
The Headmaster of Eaton has himself got two physically disabled children and he showed great commitment to supporting James and the family should we be lucky enough to get him in. A brand new reception classroom had been built with its own bathroom facilities, and the annual intake of only 14 children greatly reduced infection risk. In addition James’ life long best friend, Emma had a place at the school also to start in September.
Unfortunately Eaton had reached full intake so we had to go to appeal to get him into either. The appeal took place at the start of August. This was quite traumatic as it required both parents to sit in front of a panel of 8 people consisting of independent panelists, a solicitor and a member of the Local Education Authority.
We had to present our case as to why James should have a place at Eaton which meant we had to relay the whole of the past 2 years traumas. Telling James’ story to a room full of strangers sat around a large table bought back all sorts of unpleasant emotions so the whole experience was not very pleasant. At the end the member of the LEA whose job it was to present a case against James joining told us in confidence that he hoped this would be one case he lost. We were informed by the solicitor that we wouldn’t be told whether or not we had been successful for about a week since we had to be informed in writing at the same time as written notification being sent to the LEA.
However, we were not kept waiting this long. Within 5 minutes of our homeward journey we had a call on Charles’ mobile to say that in this instance an exception to this rule was being made because the whole panel wanted us to know that James had been granted a place. This was one of those emotional moments in life when you realize how much people can care about each other. James obviously didn’t really understand what school is all about so wasn’t very interested in the whole subject and found shopping for uniforms a bit of a chore.
During the first week of August the family took a trip down to Cornwall with a few days on the beach, trips on trains and at evening at the local fete with James dog Sammy entered in the dog races. Unfortunately Sammy managed to break his collar just before he races and ended up chasing one of the other dogs in the opposite direction when the race started.
Two weeks before the start of school, on 21st August, it was James’ 4th birthday, and what a different experience it was from last year ! James wanted a pirate party so Jane spent the morning making a pirate ship cake whilst Charles was hanging up pirate flags and a treasure chest pińata.
The weather was glorious and all of James’ special friends, and some others he doesn’t know so well, came to the party. It was a great success and James had a fabulous time jumping on his bouncy castle, eating lots and lots of treats and playing lots of party games including a treasure hunt which ended with James and his friends taking it in turns to bash the pińata. This needed rather a lot of help from Charles, but eventually the pińata broke up and out fell the treasure, lots of chocolate, sweeties and party favours.
This was a far cry from James’ 3rd party, much of which he spent lying on the sofa in agony having his stoma bag changed and feeling dreadfully ill as he was getting increasingly jaundiced and losing a lot of blood. At that party, because James couldn’t eat we hadn’t been able to provide a party tea and James had a square cardboard cake with a hollow middle filled with streamers and gifts – not the same as cream and chocolate!
September saw the start of school. Letting James go off on his own, given everything the family has been through, was very difficult. There was naturally huge concern over infections, how James would cope having spent so much time in isolation with the family, and of course the whole problem of getting the stoma bag regularly emptied and the afternoon medications administered. But it has all been so worth it ! Of course James was very nervous and shy on his first few days.
The other children had all spent 18 months together at preschool, and had been toilet trained for at least 2 years rather that 6 months like James. James had also received strict instructions to make sure he properly washed his hands after going to the toilet, or playing in sand etc. He had to understand that he was only to drink the sterile water that Jane sent to school with him everyday, and had to watch what he ate at lunch time e.g. no salads washed in tap water.
This was all a huge responsibility for a 4 year old but his attitude proved to us just how quickly he has had to grow up and accept responsibility compared to his peers Having a birthday at the end of August means that James is the baby of the class, yet this and the fact he missed out on the pre-schooling, has not held him back. We are thrilled that within a matter of days James had settled in really well, was loving his time at school, had made lots of new friends and is managing to keep up with the rest of the class in his reading and writing despite all his setbacks. Almost everyday James would announce when picked up that he had had such fun at school.
The first two months of school were not quite so straight forward for Jane. Whilst a process had been commenced to get extra funding for a classroom assistant and support for James, this was a rather long process which meant that Jane (and Lauren) had to spend each day driving backwards and forwards to school to empty the ostomy bag every couple of hours and to administer the medicines.
This meant that there was no time in the day to achieve much else and that Lauren was still missing out on all the activities that other toddlers were enjoying. Occasionally the bag would leak at school so James would need picking up and bringing home to get it changed.
The stoma bag has become the main problem to the family. Some very painful growths have formed around the stoma itself so removing the bag, cleaning up and replacing a new bag has become quite traumatic for James. At one point it was taking us 2 -3 hours to change a bag with James kicking and screaming which is very distressing for everyone. This has improved and it now takes 20 – 30 minutes to change a bag, but James still kicks out and screams in pain which causes a lot of emotional stress.
By November the funding came through and James’ new assistant commenced work. This has been a godsend. James took to Mrs Rigden almost immediately and we couldn’t have asked for a better assistant for him. Mrs Rigden empties his bag whenever necessary, checks it for leaks (which still require a pick up by Jane, but are not too frequent), gives James the medicines that have been drawn up in syringes by Jane and sent to school with James, ensures he only eats and drinks things that are safe, helps James on a one-to-one with his class work, and has overall been a tremendous support to the family.
As a result Lauren now gets to go to toddlers and tumble tots, so she too is happier. Jane and Lauren never venture too far due to calls from school about bag leaks and in case James falls ill. As far as infections go, touch wood, James has done very well so far. Obviously he has had to take time off school for regular blood tests and hospital consultations. However, he has only needed 4 days off sick to date due to chest infections secondary to picking up colds.
In October James went to Birmingham for his 3 monthly endoscopy. Other than the high EBV levels, that continue to cause us some concern, he otherwise looked well. This cleared the way for another week’s holiday in Cornwall in the October Half Term. The weather was mixed but James did spend some time jumping the small waves on the beach and talking Sammy for a walk. Jane and Charles stayed close by to make sure he didn’t fall into the water because he isn’t allowed in the sea. Both James and Lauren also running around the grandparents garden chasing Grandma’s new chickens.
James had a fabulous time at school in the run up to Christmas. This culminated in a fabulous Christmas nativity in which the whole reception class played the part of the angels and performed a lovely dance to Robbie William’s Angels. The whole experience was very moving and a real tear jerker.
Just one year ago we had all thought that it would have been James’ last given how sick he was and he had to have blood transfusions every 4 days fitting the Christmas break in the middle, the thought of ever being in a school xmas nativity was at that time incomprehensible.
And how James loved it ! He put on a fantastic performance and beamed all the way through, and had a sing the loudest competition with some of his classmates in one performance. James was really able to enjoy Christmas this year and it was priceless to see him tucking into a proper Christmas dinner again.
His only disappointment was the lack of snow which he thinks Santa forgot....
There is not too much to report in January and February. James continues to enjoy school and is building on his friendships. Our one concern has been his rising EBV levels which are being closely monitored and he returned to weekly bloods in February to check the levels.
In addition to all of the above, during the months of October through to the end of January we had builders in building an extension to the house. This was quite stressful due to all the muck and dust created and Jane spent a lot of time cleaning but gives the kids a new playroom. However the extension is much needed given that in August we discovered we are expecting our third child ! James and Lauren are really looking forward to meeting their new sibling, due 11th May!
