Monkey Music and More

On Wednesday 18th May we took Max and Luca to their first session at Monkey Music which Luca thoroughly enjoyed. Actually Luca got so excited he was bouncing up and down so much he made himself sick! Max on the other hand couldn’t believe that he was up and about at such an ungodly hour (it started at 9.30!) and refused to crack a smile for the entire 30 minute session! We will be going again after half term but we’ll probably go to a slightly later session and hope that Max enjoys it more. After Monkey Music we went to St George’s Hospital to meet Hilary, Max’s physiotherapist, and to pick up and learn to use Max’s standing frame. There is a picture here of Max in his standing frame so you can see how it works and you can see he stands in it very well.

In the afternoon we took the boys to the surgery to see their health visitor to get them both weighed and measured. Max is now 14.4 kgs and 87 cms tall, Luca is 7.48 kgs and 68 cms. Just in case you can’t remember, Max used to weight 19 kgs and he looked like this. Quite a difference! Whilst we were there we booked Max in to have his second MMR jab the following day but he managed to be very grumpy and have a temperature the next morning so we had to cancel.

Our wonderful, fantastic Community Nurse Helen is moving on and will be working primarily with asthma patients so she is being replaced by two new community nurses, Sheron and Sarah. They came to meet us and the dogs on Thursday morning and to watch a trachy change and Max was fine, but just before they left he started getting grumpy and upset so even though he was due to have a session with Jackie from Portage, we put him to bed for a rest. He slept for 3 hours, which is unheard of and would normally indicate that he wasn’t quite himself. He was much more cheerful after his sleep so it was clearly the right thing to do. The following day we had respite with Ann, Jemma had the day off. Ann has been off work recently and hasn’t seen Max for ages so she was absolutely thrilled to see how well he has come on. Once he’d done all his showing off we decided to take the dogs for a walk altogether. The dogs, the children, Ann and I spent a very enjoyable afternoon in the park, in the sunshine. It was bliss. The dogs behaved, the children were good, and Ann and I had the chance to have a very relaxing time.

On Saturday, we had a relaxing morning and then in the afternoon we went to The London Door Company, to check out possible folding, sliding doors for our possible extension. The extension has been something we have talked about doing for such a long time but now that we really don’t fit in the house – Max’s room is so full of equipment and a huge hospital bed that Luca can’t share – we are hoping to have works start as soon as planning permission has been granted (again). The following day the Viñas came for lunch. We haven’t seen them since last summer so it was nice to catch up. On Monday 23rd May, Luca was officially 6 months old. People always tell you how quickly children grow up, but it is still a shock when you take stock. We spent the day visiting Justin’s aunt near Amersham. We were appalling guests. Firstly, the minute we arrived one of our dogs (Jasper, I suspect) poo’ed on the mat in the conservatory. Apparently as Sandra dog-sits a lot of dogs, this is a common occurrence, but embarassing nonetheless! Then Jasper managed to escape out of the garden, spend 20 minutes investigating the surrounding gardens then sauntered back looking very pleased with himself.During the commotion, one of the other dogs (Sandra has one and was dog-sitting another) spilt Jemma’s tea all over the carpet. Once Jasper was back, both children needed nappy changing – more smell, then after lunch Sandra and I took the four dogs for a lovely walk. When we got back we had a quick cuppa before we left, but unfortunately Max chose that moment to have another poo but this time it seeped through his clothes and onto the sofa! Sandra took this all in her stride but I’m not entirely sure we would be welcomed back!

On Tuesday Justin, Max and I went to see another school, Paddock School. I had been led to believe that Paddock would not be appropriate for Max. One person just said it wouldn’t be considered as a school for him and another said that he would have to be walking to go there. We decided to visit it anyway as it is one of the available schools in the borough. We found a bright, airy nursery with four pupils and three teachers. The nursery teacher was very friendly and we had a long chat with her. Once we got Max out of his buggy to show them his sitting and bum shuffling, he disappeared into the class as the teachers took it in turns to show him things and play with him. At one point he was just one little boy playing on the floor with everyone else. It was really cute. All in all, choosing between Paddock and Bedelsford will be difficult. We have one more school to visit next week. Whilst all this has been going on, Max’s statement is being compiled by all the professionals dealing with him. Each person writing about him is sending me their report for double checking before sending it on to Wandsworth Council. We have also had to compile our own report. I cannot tell you how much time this process has taken up, and this is only the beginning. The whole process takes about 6 months. Once everything that we are currently all submitting has been compiled, we then get a chance to re-read it all and at that point we have to say which school we would like Max to attend. As both Bedelsford and Paddock would take Max for a couple of sessions a week as soon as his statement is complete, it would be good for the whole thing to go smoothly, but these things never seem to. Max’s requirement for a one-to-one carer to take responsibility for his trachy will also put a spanner in the works, but at the beginning we will suggest that Jemma accompanies him to school to be his one-to-one carer until an official one is found and trained.

On Wednesday Max went to his second Small Steps session and as predicted this group suits Max better than the Monday afternoon group. It is hard work, both for Jemma and for Max and occasionally I will be taking him, especially now that Luca doesn’t need me during the day any more as he is quite happy with his three meals a day and a bottle if necessary. On Thursday Lizzy, Max, Luca and I went to spend the day at Christopher’s. To Lizzy’s utter surprise the children and I were ready and waiting for her at 9.45 am! We got down to Christopher’s and spent some time in the soft play area. Max was impressed by my juggling skills, but other than that he was not pleased at being in there at all, so we went into the lounge where Max showed off his new skills to Marina as we haven’t seen her for weeks and weeks! After lunch we went for a swim, shower and haircut for Max, followed by a stroll in the garden, a go on the swings that neither boy enjoyed, a play in the Wendy house some relaxation in the sensory garden. We also put Max in the car. At first he was wearing no shoes and he didn’t like his feet touching the ground at all, so we put his shoes on and he was much happier, until … we tried moving the car, he couldn’t cope with that at all! As you can see from the many photos here we had a great day!

The bank holiday weekend was spent at home not doing very much at all, except dog walking and playing with the children, although Justin and I did manage to sneak a visit to the cinema to see The Hitchhiker’s Guide to the Galaxy, which we both thoroughly enjoyed. We tend to go to the late night showing cinema on a Saturday night and leave the children asleep with Verna.