Today was another chemo day or as we now like to call it, an MOT day. Helen and I have dubbed it an MOT day because so many checks happen on the same day: change of trachy tube, re-dressing of hickman line, dose of chemo and/or flushing of hickman line, checking of gastrostomy site (today we cleaned it too!), check over by paediatrician, flexible bronchoscopy (camera down trachy to see how the tumour is growing in the windpipe), blood tests. As you can imagine this all takes quite a long time but unlike last week, this week we were home by 3.30 pm, so a long day but shorter than last week. Next week is a GOS chemo day and along with all the above we will also be having a CT scan to check his shunt is correctly positioned and working. I have a feeling that next week will be a very, very long day!
Massimo’s blood is currently being tested twice a week and although his numbers fluctuate, he is still mostly within normal limits. He currently has a cold (J and I look as though we might be coming down with one too) and today the paediatrician decided that a course of antibiotics would be a good idea. At least this way we hope that we are pre-empting any illness.
Massimo currently weighs 6.24 kgs (13 lbs 12 oz) and is on nearly a litre of milk a day. As he will not be weaned until he learns to swallow he will continue on a diet of milk until he reaches the age of one when the hospital will provide high energy liquid food for him. As his milk requirements are getting rather beyond my reach, more from a lack of time rather than a lack of ability or willingness, I have decided that now that he is 6 months old I will be returning the expressing machine to the hospital and upgrading Max to SMA Progress. He has started grabbing toys and pulling them towards him and really making use of his activity mat. He is getting really rather good at holding his head, especially when you think that he is 6 (4) months old and holding a head the size (and weight) of a 9 month old’s. His head has not grown any more since the shunt was put in.
Hopefully we might have some day respite care soon, just a few hours in the afternoon, but it will give me a chance to go to the dentist, the hairdresser and other similar delights!