I last wrote on Wednesday 6th April. Nothing much happened on Thursday and on Friday we went to St George’s for Massimo’s MMR. Although MMRs are normally done at the surgery, our surgery were slightly hesitant about doing Massimo’s just in case he had a reaction and they felt they would be happier if we went to the hospital for it. Although we had some tears at the time of the jab, Massimo took it all rather in his stride and as no side effects were noticed during our “watch and see” time, we left after about half an hour. The second of the MMR jabs will be done at the surgery like all other children.
On Saturday we were invited to a birthday party from 3 – 4.30 pm. Unfortunately Luca decided to wake from his nap late, then he needed feeding, then just as we were getting ourselves together Massimo decided to have a little tantrum and by the time Max and I were in the car ready to go, it was 4.10! We got to the top of the road and turned back again! I was so determined to make this particular birthday party as we have managed to miss so many recently, mainly due to my bad memory!
On Monday 11th April, we had another appointment with Peppy Brock, Max’s oncologist. She was very pleased to see him in a regular (umbrella) buggy as opposed to the huge wheelchair that we were using at our last appointment. Max even showed her his practice standing! We learnt that the steroids that Max has been on also have an effect on growth and that he should have some serious growth spurts as the steroids wear off. She also measured his head, which although still large and rather misshapen, is now on the growth chart (91st centile). His weight is also on the 91st centile, but his height is on the 50th centile. As time goes on these measurements should stabilise and hopefully meet on the same centile. We also discussed his medication level and again agreed to keep it at the same level, even though Max is becoming quite hairy on his legs and back. We decided this was a small (and reversible) price to pay for the potential benefits of the drug. Another thing which was suggested for the future is possibly cranial surgery to reshape Massimo’s head. Although this would not be on the cards for quite some time, it is food for thought.
The following day, Jemma and I were getting the children ready to go out for a walk up to Balham. We had put Max on the sofa and the next thing we knew he landed on his back on the floor. On his way down he had hit one of the knobs on his low table and blood was pouring out of his head! He was very, very unhappy! Soon enough he calmed down, the bleeding had stopped and we went out as planned, although we kept a beady eye on him for signs of concussion – there were none!
On the Wednesday, Massimo spent a lovely day with Denise, one of his nurses and then had to perform for the physiotherapist that came to visit in the afternoon. Hilary was very pleased with his progress and his sitting and has ordered a standing frame for him. Apparently this one will give him less support than the one he has been using at Christopher’s, which is a good thing as Massimo is rather lazy when he can get away with it!
On Thursday we spent the day at Christopher’s. It was a gentle day as we all seemed a little weary. Jemma went home at lunchtime as she works very hard and deserved some time off. On Friday we had respite in the form of Sheila. As Sheila wasn’t due to arrive until 11 am, Justin worked from home until she arrived so he could be around in case I needed a little support. I spent the day pottering around the house doing housework and washing whilst Sheila took Max for a walk and went to Balham Library for a browse in the children’s section. We will be joining the library and hope to start taking Max to Story Time there.
We then had a quiet family weekend and managed to do a little work in the garden – J mowed the lawn and I did a little weeding and deadheading. On Monday (18th) Jackie came from Portage with Amanda, Max’s educational psychologist. Although it had only been about five weeks since Jackie’s last visit and seven weeks since Amanda’s last visit, they were both impressed by the progress Max’s has made. His sitting is a lot more confidently and he can sit independently as long as he has the comfort of knowing there is something behind him. His playing has come along lots too. He is doing lots of problem solving and his concentration span is growing considerably. Also his fine motor skills are coming along too as well as his co-ordination – his drumming is rather impressive!
On Tuesday, Max went out with Denise. They took the bus and went to Deen City Farm then they went for a walk along the river. They had a lovely outing and a very happy little boy came home ready for cuddles and playtime, before his evening bath. On Wednesday morning we were supposed to be going to St George’s for an appointment with his paediatrician, however she was unwell so the appointment has been postponed to next week. In the afternoon we met Jo and Jasmine and Jasmine’s little friend Helen, for coffee and a walk around Wandsworth Common. It was a lovely day and we enjoyed our outing thoroughly.
On Thursday morning Jemma, Massimo, Luca and I all went to observe a class in action at Small Steps School for Parents. We think it is exactly the right sort of environment for Max and following an assessment session next week, he should be starting “school” once a week from the week after. The sessions are 2 hours long and the parent (or probably in our case, Jemma) stays and basically works with each child whilst the three “teachers” (one teacher, one conductor and one physiotherapist) assist. The basic idea is that they teach us how to encourage the children to achieve the best progress that they can. The children are grouped into about 7 groups, according to physical and mental ability and each group has group goals and which are based on the individual goals of the group. Massimo watched the session for over an hour before he lost concentration, which we were all really impressed by. At the end of each session there is story time and each child gets a sticker for something they did particularly well during the session. Max got one for just being there!
We were all quite tired after all that and after lunch in a friendly tapas bar and a quick hello to Maz and Olivia (Maddy was at nursery) we came home to a refreshing cup of tea! We were supposed to have received Max’s new chair this week and on Friday Max’s Occupational Therapist was coming to set it up for us. As she is also moving on in her job she was bringing the new Occupational Therapist to meet us. On Thursday afternoon I called and left a message to say that the chair had not arrived and we were now expeciting it on Monday. Unfortuately they didn’t recieve the message and turned up to find us in a state of disarray! Emtia was very impressed with how well Max is now doing and after a quick chat and a coffee they left. It was such a lovely day that Jemma and I packed up the children and the dogs into the car and went off to Richmond Park, where we had a walk and a picnic.