(Apologies for posting this so late)
I have to say that the signing course was absolutely marvellous and I would recommend this to everyone with children under 2. The idea is that babies over 6 months but under two have developped sufficiently physically in order to use their hands to communicate, but their vocal cords and facial muscles have not yet developped enough to enable speech. Apparently the terrible twos are terrible because children are desperate to tell you stuff but do not yet have the means to do it. Do I sound like an advert? I certainly don’t mind if I do and here is a link to the course I did signing infants!
Other than that some fun stuff has happened. Massimo has found his willy and grabs it at every opportunity – typical male, I think! He has also found his trachy and spends many hours pulling the humidifier off and then has a go at getting his thumb under the trachy to see if he can pull that off too. Not such a clever idea really! His gastrostomy is currently a long tube which comes out of his tummy (it will become a button in due course) and his Hickman line is a tube coming out of his chest – two fantastic things to grab and pull at! He often also assists when suctioning grabbing the catheter or your hand. This new ability means he is making more use of the things on his activity mat. His smiles are bigger, brighter and more frequent and his attention span and concentration have improved vastly. He has learnt that being crotchety gets him lots of cuddles and smiling gets him lots of interaction.
On the not so fun side, having got home on the Friday night we discovered that the gadget that GOS had attached onto Massimo’s (temporary) gastrostomy tube which was supposed to make life easier actually made life much harder as we spent all of Friday night and morning feeding Massimo’s bed and clothes more often than managing to feed the little chap himself as various bits came loose during the feeding process. We called the community nurses and Sue who happened to be on duty (and who rather brilliantly calls herself the wee and poo nurse) for the weekend raided every cupboard, store room and operating theatre to find us something that would attach and above all stay on, so that we can survive the next 6 weeks until the permanent gastrostomy button is attached. (This temporary tube is standard procedure to ensure that the hole into his stomach is properly formed before the put the button in but because of Massimo’s size the tube is not quite standard and therefore the fitting that GOS gave us, although great in principle, didn’t work in practice.) Sue found us a solution and on Sunday morning she brought round a very unwieldy attachment which is designed for use on urine catheters but which does the job brilliantly. Three cheers for Sue and her inventiveness. Since this little problem has been solved things have been fairly standard here and there isn’t much to report. The chemo gave Massimo some pain but nothing that a little Calpol couldn’t solve.