Sally has had a fantastic month, totally oblivious to the stresses we have all been through. Sally, in contrast to Joshua, loved going back to school. She is now walking everywhere, getting into everything and more importantly getting away with it. During school assembly she will just stand up and walk across the hall to the soft play room. The staff are that excited about her walking they let her get away with it. We've had brilliant comments this year in her school diary.
"Another good day, Sally has been quite wild, she has been very vocal again."
"Sally wheezy but energetic!!! Sally is doing brilliantly."
"Sally is constantly escaping out of her chair and making a run for it!"
"Sally has been in the happy book for her fantastic walking."
"Sally is in fine form!"
Sally's school have been brilliant this year and really make it obvious they love her to bits and enjoy teaching her.
At home, we have been keeping the excitement going each weekend...
I took Sally to an American Wrestling show along with her cousin Luke and a friend from work with his little lad. Well Sally excelled herself and gave her lungs a good workout. She spent the first hour squealing, babbling, clapping, bouncing and was very very very excited. A couple of Dads in front of us with their two lads kept staring at Sally for making a noise! So, when she decided to grab the man's shoulder I ignored his scowls. This then led to Sally putting her feet on his head, I had to apologise for this one. But to top it all in one of her excitable slapping moments she decide to smack the twelve year old lad on the head in front of us. He just turned around in disgust just like his Dad. I again apologised but secretly was laughing inside as it annoyed me how they kept looking at Sally for no reason apart from the fact she was special needs.
It was an amusing afternoon and Sally provided equal entertainment and noise to the wrestlers on the stage. On the way home I thought Sally would collapse in the car but no she was wild after having such a fantastic afternoon. She marched around the house before eventually collapsing in bed and falling asleep in about two minutes. I must add here that for some miracle both children are sleeping very well. I know it will soon end but we are actually getting seven hours sleep. Sally does still get up at 6am but generally plays in her room. Maybe after twelve years we will get some sleep! But I wouldn't put money on it just yet as once they realise what they are doing they will come up with some scheme to wake us up multiple times a night!
We are planning to buy a touring caravan this year and leave it on a campsite throughout the summer in order to get some weekend breaks in a safe and easy environment. It will mean I can make the caravan completely safe and we could leave a batch of medication in the caravan so it doesn't take the usual two hours to pack all the extra bits every time we go away. One past time children love is going around caravan shops. They can go into every caravan, twiddle every knob, press every switch and we don't get into trouble. We quickly found a caravan so the next task was a night in a travel lodge in North Wales looking for a caravan park. Not the best time of year to go in the cold but the children love going to a ‘hotel'.
The staff were fantastic and Joshua had a great conversation with the receptionist, followed by an in-depth conversation with a waitress at breakfast about not wanting to swim in the sea. He is so confident at talking to adults now. However, he gets to the ‘hello' bit and doesn't know how to progress so keeps saying ‘hello' like a stuck record. Eventually we drag him away as the conversation gets a little stifled. Sally loves hotels and has to press every switch in the room in the first five minutes, test the bathroom taps, have a bath which means she gives the bathroom a good wash as she splashes water from floor to ceiling. Eventually they went to sleep, some time after 10:30pm.
The next day we drove around campsite after campsite, stopping at the beach where Sally refused to sit on the sand. She has a thing about sand at the moment. Joshua was saying ‘cold' which to be fair it was so he quickly returned to the car. By this time Sally was trying to get into the sea so I let her splash her hands in the water before also getting her back into the warmth of the car. We found a nice caravan park which we booked the following week. So we are now officially caravan owners and have a holiday place in Wales. I am picking up the caravan on the 25 Feb and then our camping season starts on the 17 March, assuming the sun arrives and the temperature increases considerably.
In the midst of all this both children have been for respite again, with Tracy dropping Joshua off to avoid the severe sickness, which improved matters. The good news is that a nurse from the hospital ward is now working at the respite centre and will be working every time Sally is there. This means she can do the IV medication when it is due and saves the silly situation where we get respite but have to call in at 11:30pm and 7:30am the next day. We are also really pleased because we know the nurse and she is fantastic with Sally. We have absolute faith that she will look after Sally like we do. This is always a concern when your handing your children over to someone else, especially someone like Sally with such complex medical conditions.
As part of the caravan shop tour we called into Cadburys' World where we were force fed lots of chocolates. Joshua and Sally had a really exciting day, concentrating on the videos, the moving benches and the chocolate car ride. During the ride Sally spotted a small play roundabout, about 18 inches wide. Now Sally loves roundabouts and was fighting me to get on the ride to have a go, even though it was very small. She shrieked the whole way round so that we had to ask if we could stay on the ride and go round again. The staff were brilliant and were very amused at the excitement of the children so let us go around again.
Just before I finish the only outstanding issue which we are no further on is the dentist for Sally. Back in October she was due to have some teeth out. The operation was cancelled because the consultant wasn't happy with operating on Sally and we would be transferred to another hospital. Well we haven't heard a single thing and have been left in limbo not knowing who is managing this request. We are now 18 months from the initial referral and back to square one. I'm sure this will keep us busy for a while with lots of phone calls etc....
I'm not sure what the year will bring, as all previous years have brought both joy and tears. This year we will have to contend with an operation on Joshua's feet, getting over his anxiety, Sally's quarterly IV antibiotics, a possible dental operation and who can even guess what else will happen considering our families chequered past. But I know we will have a year to remember, going away as many weekends as we can in the caravan, playing on the beach, drinking wine in a caravan field, playing in lots of parks and having lots and lots of fun memorable moments. Sally and Joshua will bring use no end of joy as we watch them develop and spread their loving nature amongst all their carers. We were told today "we're not supposed to have favourites, but your children are our favourite". Nearly every carer has told us this and we just enjoy every moment we have together. We just don't know how long it will last.