Thursday was, for me, quite a difficult and tiring day. At first Massimo’s health visitor came to see him and we had originally planned to give him his 3rd set of baby immunisations. Due to the chemotherapy we had to stop giving Max any of his injections and we could only start again 6 months after the last dose of chemotherapy which was in February. Also we plan to give Massimo a flu jab and then his MMR. The plan is to get these done in the next 10 weeks before baby n.2 comes along and all hell is let loose!! The health Visitor came empty-handed, however as the old vaccination has live polio and it was felt that as Massimo is possibly still immuno-suppressed. or at least is a little delicate, it would be best to wait for the new vaccine. As she has taken over from Massimo’s original health visitor she hadn’t met Massimo before so she stuck around for a while to chat to me and watch and play with Max a little. Once she left, a client of mine came round. For some extraordinary reason I thought a little work would be healthy for me, so Mark kindly came round with all the paperwork so I can work from home. Once we’d had a good catch up session, both socially and professionally, I had time for a quick bite to eat before our next visitors.
At 2.30, the Social Services Occupational Therapist and Massimo’s Paediatric Occupational Therapist met here to assess Massimo’s seating requirements and “moving and handling.” As Massimo is now 14.8 kilogrammes (2 stone, 4 pounds) he is heavy even for poor Justin who has to do all the lifting and carrying when he is at home. When I’m on my own I do as little as possible but now at 30 weeks pregnant I’m finding picking Max up off the floor nearly impossible! Anyway the upshot of the meeting was that there isn’t anything they can offer me to help, and the feeling is that once I’m not pregnant any more we’ll be fine and “cope.” Any suggestions of equipment that might be useful is all means tested and as Justin works we would find it all quite difficult to get hold of. Without going into too much detail, suffice to say that this isn’t the end of the matter……
Last but not least the lady from wheelchair services came to measure Massimo up for his wheelchair. Unfortunately I forgot to mention that there are wheelchairs available with a seat for a sibling (as I have been told by other parents) and to request that we look into this further before ordering us the bog standard one. Also, one of Massimo’s SGH nurses has also seen a very snazzy wheelchair that another patient has and which is available not through the usual channels and which is cheaper than the average one. So having thought that at least the wheelchair was sorted, it seems that even that needs further attention. By the time she left, at about 5.20 pm, I was exhausted and desperate for a cup of tea! Massimo, bless him, was as good as gold throughout!
Yesterday luckily we had a wonderful, much more relaxing day at Christopher’s. As you can see from the photos we did some painting. If you look closely you can see that I am holding the piece of paper but Massimo does take over and holds it with his left hand and proceeds to bashing it with the paint-covered brush! We also did some sitting practice in the soft play room, where Massimo was reunited with his pirate sword – to his utter delight – and he proceeded to hold me to ransom with it whilst having a major giggling fit! We have photographic evidence of this but unfortunately on Lizzy’s camera which isn’t digital. We also spent time in the sensory room as you can see, where Massimo gazed adoringly into Lizzy’s eyes.
Today has been a bit of a quiet family day, with no news to report. Massimo still has only one tooth – his bottom right molar – which isn’t quite all the way through. His front two lower teeth are looking promising, but at this rate we won’t be seeing them for at least another week!