Tuesday, June 06, 2006

A wonderful day at Legoland

We have had such a wonderful couple of days it really feels like we have had a weeks holiday. The zoo day was a real treat and then on Sunday we went to Christopher's Hospice for an overnight stay before Legoland on Monday. We didn't get William's swim as the pool was out of action for 24 months, following a "little accident" the day before and then the chemicals were wrong. We will get him in the pool eventually! As you will see later, he did get to use his suit again though. Instead, WIlliam enjoyed the trampoline with his sisters and was really getting confident. He love sitting and being bounced and even ran across it - much to everyone's amusement as he couldn't stop when he got off!
Once again, we were really chilled out in a couple of hours. This time, I got a complete break from all William's care as we have completed the care plans. It was hard to let go but I was determined and by the time we had finished tea William's TPN was up and running and he was even asleep before I could say goodnight! This was a big step towards, eventually, leaving him there for a night to go out and have some time with Paul and some friends.

Legoland was an amazing day. There were two families and we had clearly been very carefully matched for ages of the children and personalities etc. We all got on really well and had a lot of fun, as well as lots of heart-to-hearts between us Mums. We had made plans to meet up at the City Farm that is half way between us before lunch time! Ellie went round holding hands all day with her new friend and Hope and the eldest son were equally mature and serious about everything and engaged in amusing, friendly competitiveness on the rides that had a race element. Even Willliam had some similarities with his new little friend as there was some overlap in their conditions, especially regarding gut motility and absorption etc. She is not on TPN but nearly was at one point. This similarity led to an interesting insight - she is needing the same test we are waiting for at GOSH but, being a GOSH patient, knows the inside info - the machine (the only one in the country) is currently out of action and awaiting a part from Norway which no-one expects to get for months!!! If only we had been told that reason for the delay. William is still in increasing pain everyday so we need to discuss this situation when our consultant is back as it is unfair to keep him suffering indefinately as this test was supposed to be done prior to an illeostomy.

William loved Legoland, they all did. There is a lot for young children. He loved the model London, especially his beloved trains and buses! He couldn't wait to get off his TPN and start climbing in "Duploland" and have a ride on a lego train.

We went on fire engines, hot air ballooons, monorails, trains...the girls took their driving test and were treated to their license. The children had a really great time and were so happy all day. They felt very special going to the front with their exit passes as 3 people could go with each "disabled" person.

We all went on a very exciting water splash ride. Luckily they still let us get to the front although the two little ones with the "red stamps" clearly couldn't go on. They got their chance to get wet later.



William got to use his suit to discover the water jets and activities in the "Kids Wash". He could't have gone in their without the suit as he got dripping wet. He was scared at first as this is all so new to him and I did get some looks as he was screaming. He does for a while and then really enjoys the water. I'm sure some people thought it hugely over the top as he was in a dry suit!



It was an amazing day and we made some new friends which is great for all of us as the children now have some friends who are in the same boat as them. This was one of the main purposes behind the day - to give the children and Mums some fun and happy memories of a great day out and also to help families get together and form supportive friendships. CHASE has a motto "Just because a child's time may be limited it doesn't mean their life should be" The last few days have certainly been so for us, thanks to them! Both of us Mums were saying yesterday what a huge difference top our lives CHASE has made. She is now planning to do the Hydro-active as well for CHASE. Thanks to those who have sponsored me already - these photos today show where that money goes in making time-limited children have full lives that are anything but limited and helping families enjoy the time they have together. There is more about CHASE on my justgiving page which is linked on this blog, under the profile with the links (I can't do flashy links in the text but may get Paul to do it for me later!) We nearly had tp be blue lighted out though as there was an accident on the motorway, resulting in static traffic right into the carpark! William's TPN was due up and was already going to be an hour late once we had waited to see what was going on. Luckily we were shown the staff way out - an interesting tour of the backstage of Legoland.

The children were even giving spending money and, as I am writing, William is busy with his duplo that we added to with his, racing a duplo train Mummy helped him to make with his Bertie Bus. it is keeping him very happy in his pen on his TPN.

1 comment:

Shadow said...

Wonderful to read such a smiley, happy post. Thank you for cheering me up after all of the sad news around at the moment!
xxx