Since my last entry we have been fairly busy, within the limits of my now pregnant (and therefore tired) state! Wednesday 2nd June was a quiet day at home, with just a quick trip up to Balham for a breath of fresh air. Thursday heralded the arrival of Charlie and Sadie our good friends who decided to leave London last year and bought themselves a derelict castle in Scotland to move into (www.dunanscastle.blog-city.com)! They arrived with their new(ish) 5 month old baby daughter Harriet and I’m sure you will all agree she is a little beauty! It was very interesting to watch the reactions of the dogs and Massimo to the arrival of a little baby who cries, and LOUDLY! The three of them were all stunned, but soon got used to it, and in fairness she didn’t cry very much at all! Claire, Massimo’s respite nurse, arrived at about the same time as the D-Ss, so Sadie and I went running out the door for a little shopping and a cup of tea. The evening was spent extremely companionably, and the children were extremely good that night for us.
Friday was a big day as we had been invited to join Christopher’s for a special event at Marwell Zoo (www.marwell.org.uk). The zoo was opened from 6-9 pm for 3 charities of which Christopher’s was one. As Marwell Zoo is down in Hampshire we went to Grandpa and Mal’s for lunch, then popped in to see Jerry and Selina and their little boy Robert for tea, and then went on to the zoo. We spent nearly the full 3 hours there and although most of the animals were too far away to capture Max’s interest the giraffes were fairly up close and personal, as you can see from the pictures, the fresh air and the whole event gave us a very happy, contented and tired little boy at the end of it.
Saturday and Sunday were spent quietly at home as both Massimo and I were quite overwrought by the previous day’s activities. Monday morning brought a visit from Portage. Portage is a home-visiting educational service for pre-school children with additional support needs and their families www.portage.org.uk. Justin worked from home in the morning so that he could be here for the meeting, but unfortunately Massimo decided that sleep was more important and simply refused to wake up! His sleep patterns are just a little off balance at the moment although we are working on making them more “normal”! The meeting was primarily to tell us about the service and see whether it would be something that we would be interested in. We thought the service would be very useful in helping us assist Massimo to maximise his potential and it was therefore decided that someone from Portage would call, visit and organise for weekly or fortnightly teaching sessions in the near future. Lizzy joined us for lunch and the afternoon, and once properly awake he bestowed plenty of smiles upon her.
Tuesday dawned bright and beautiful but Massimo was not. He didn’t want to wake up at all, he was restless and unhappy and his breathing wasn’t brilliant at all. Granny came to visit but by lunchtime we took the executive decision (having discussed it first with the Sister in charge of PICU) that it would be best if we took Max into A&E. In we went but not until about 3.30 as he seemed quite settled for a little while and it seemed cruel to disturb him. As soon as we walked in to A&E Massimo spiked a temperature of 39.5ºC so a course of antibiotics was started, a paracetamol suppository was given and a dose of sedative was also given to settle him. Once on PICU we saw his consultant and it was decided that they would try to do a fixed bronchoscopy (have a look down his trachea under general) on the following day. This news was very welcome indeed. Unfortunately it was not possible for them to do the procedure and it has been postponed to the 30th June.
After just one night in PICU his temperature was down and he seemed very well so in the evening we collected him and brought him home. We are beginning to think that he just likes to visit the nurses on a regular basis! We think they spoil him a little too much when he is there with them!
Thursday Claire from Tadworth came and rather than do something sensible with my spare time, I spent most of it with her chatting about her forthcoming wedding! But I got to do some serious relaxing too and Massimo enjoyed her undivided (well nearly undivided) attention. Friday was a big day as we were off to Christopher’s with Max for the weekend. Gabi came to look after the dogs, whilst we went off to Guildford. 
It has to be said that Massimo seems to have perfected the art of flirting and he had the whole of Christopher’s staff wrapped around his little finger in no time at all! When we got there we put him in one of their little chairs with a table, and although we do that at home regularly, he tends to just sit there happily looking around even though we try to encourage him to play with a range of toys. For some reason he chose this particular Friday to decide to play as well as sit, and he happily played for a good half an hour in the chair. We were very proud!
Christopher’s rules require that parents spend the first night on the premises with their child, although we were in accommodation upstairs and Massimo was downstairs in the main part of the building, so he was being looked after for us, whilst we had a good night’s sleep. By 11 am Saturday morning we were officially allowed to abandon the wee man and go off which we promptly did, spending the day relaxing at Grandpa’s. From all accounts Massimo had a wonderful day, doing footpainting, going for a walk, spending time in the garden and generally making himself noticed by all and sundry. Sunday morning, once his lordship decided it was time to wake up, we packed up and came home. A successful weekend was had by all and we shall be repeating the experience as soon as possible.
Monday morning and our allocated “teacher” from Portage came to introduce herself and meet Max, Her name is Jackie and we will be seeing her again in a couple of weeks. It was very interesting to talk to her about Max’s specific abilities and how they are developing and it also helped us to be more aware of just how much he has progressed since he came home in March. In the afternoon we met Ned and Kirsty at the one o’clock club in Tooting Bec Common and 
Massimo was absolutely fascinated by all the other children, so much so that I think we will be repeating the experience whenever possible. Tuesday Sheila from Tadworth came and she and Massimo had a marvellous time (see pictures) whilst I recovered from my long walk (and blisters) with Massimo the previous day – tiredness has never been such a problem before, although I suspect that when baby number 2 arrives, things will be much, much harder!
Wednesday, today, has been relatively gentle although it did include a visit to the opticians were Massimo flirted with the lady who helped me spend a fortune on new glasses, sunglasses and contact lenses. On a general note, Massimo has learnt how to roll from side to side and make his way around the room, today he started off with his feet towards the camera in the middle of his gym, as you can see from the two pictures, he turned himself 180º and crossed the room – we think he is very clever!