This last week has been as busy as ever. On Tuesday we spent the day at home with Tatie Lucy discussing and preparing for the charity event of the year to be held in September to raise money for the Neonatal Unit at St George’s Hospital in honour of our little man. For now all I will say is that it should be a fun evening and there will be an auction of promises and a very good raffle (at least that is what we are hoping for!)
On Wednesday we went to Christopher’s and this time we took Dylan and his mum, Kerry. Well it has to be said that Dylan took such obvious enjoyment and pleasure at being there that it was great to witness. After some messy play and lunch, he had a good sleep ignoring the joys of the sensory room around him, but when he awoke and saw where he was he was more than happy! 
Dylan has weak head control, however the sensory room held such fascination for him that he forced himself to hold that head just so he could have a look around! The swimming pool, being so much warmer than your average pool also meant that he could cope with enjoying the water for longer and the jacuzzi was a very new experience. The day ended badly as Max got himself worked up into quite a state, his breathing became laboured and his gastrostomy leaked and showed signs of needing to be changed to a bigger tube. He had a sleep in the car on the way home, and by the time he saw his daddy he was right as rain!
Thursday we drove down to Robertsbridge near Hastings to see Lizzy and her Mum, Sue. Last time Sue saw Massimo he was at Great Ormond Street attached to numerous machines (see entry dated Feb 19) and kept fully sedated and it was great to take him to visit when he is doing so well. It was a long day, but a lovely day.
Friday was spent at home with the physio and Marina visiting. Marina came for a quick run round the house so that she would be prepared for baby sitting the following day. Annette was also here and she looked after Massimo whilst I went for a quick wash and blow dry, then Moira and Sarah (Clews) came to visit. They were very impressed by how much Max has grown, admittedly though they haven’t seen him since last summer!
Saturday Max was left in Marina’s most capable hands whilst Mummy and Daddy went off to the wedding, which was a lovely occasion. I am sure you will all agree that the bride looked stunning! http://homepage.mac.com/jhopemason/PhotoAlbum5.html
Marina took Massimo to Christopher’s where he had a ride on the miniature train and then promptly fell asleep for the rest of the day but the pictures on our camera tell a different story! Here is just one of Massimo swimming with Tania.
That night Massimo decided to worsen his wheeze and generally worry the nurse looking after him, but he has since improved, lots. On Monday we were due to go to Christopher’s again, but whilst driving past St George’s on our way down, Massimo’s gastrostomy leaked for the hundredth time and we decided to go straight in to see if it could be sorted. No immediate solution has been found but we are hoping that the current strategy might work in the longer term.
On Tuesday Jo and her little daughter Jasmine came over for lunch and and Jasmine had many kisses for little Max! Wednesday and Thursday were spent doing very unfun things like going to hospital for a blood test.