Wednesday, April 19, 2006

We're on a roll...!!!

We're currently on a most excellent roll of relatively good health and getting out there and enjoying family life. After Easter Sunday's TV excitment we woke up Monday to our usual routine of blood tests and dressing change with our fantastic community team. After that, we all got into the car and drove to Paul's brother on the coast for a family Easter. William had a bucket and spade in place of a chocolate egg and we took him down to beach to christen it. He didn't know what to make of it all at first as it was very windy and not too secure under his newly toddling feet. He loved playing in the sand though, so much that we will be off to get a little sand pit for the garden in the next few days. We took all the IV drugs and TPN and put it all up away from home for the first time - a big milestone towards normality and freedom!

Tuesday was the last day of the school hols so we decided to take another trip out. We went to Greenwich and enjoyed the museums and the park. Hope and Ellie were impressed with the big telescope. Today William had a lovely time playing and painting with the family support nursery nurse. They are so good and have helped us so much with William's development.William has been home 3 weeks tomorrow - the longest for nearly a year! It is great spending so much time together as a family but every day we wait for the letter signalling the next set of inpatient tests and operations that will take us ever closer to the potential transplant assessment. Still, we make the best of every minute we are all home together. However, I have just taken 50 mls of dark green bile from his gastrostomy. This is quite often a sign he is getting poorly so I am hoping he will wake up tomorrow just as well as he has been lately.

Tomorrow is a big day as we are meeting our hospice nurse. We have been accepted at a local hospice, for respite initially. This will be a place we can get away together for a break and relax with the support of nurses but can also leave William if we want to do something with the girls that Wills could not do because of his care. I am looking forward to going all together with the whole family for a break.

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