Luke had his feeding tube replaced with a Mic-Key button on Friday. This is much more comfortable for him and makes it much easier for us to pick him up and hug him. The process of feeding him is still the same, but now we have a separate tube to fit onto his button rather than it being permanently attached. Of course this means we have another thing we mustn't forget to take with us, but overall it's much better for everyone. Luke came through the process very well and was on good form yesterday evening to welcome his big brother and sister back from France. It's great to have them back safely. Can't believe a new school year will be starting again soon.
Luke's brother Yannick is a cub scout and his Pack (Pack 25) asked us how they might be able to help. We talked it through and came up with a couple of things. We now receive regular visits from Pack families to keep our yard in good shape. This is very much appreciated. It's one thing at least that we don't have to worry about now. Scott Rodriguez and Marshall Ferrell and their two sons (Landon and Addison) kicked things off at the end of July. Many many thanks to them. They had a lot to do to bring things back under control and they certainly rose to the challenge. The other idea is to hold a charity car wash in support of Dr Escolar's research group at Pittsburgh Children's Hospital. They have been very helpful to us in terms of what to expect as Luke's condition progresses and how to head off certain things before they become critical. Basically, as they put it, to keep us out of the Emergency Room. Surprisingly, even though their lab is one of the pre-eminent centers in the US for the treatment of MLD, their research is not very well funded. But if there is ever going to be a proper and effective treatment for this horrible disease, the work they do is essential to gain a better understanding of it's natural history and thereby determine what treatments make a real difference. The car wash will probably happen in the Fall when the heat eases off and we will be hoping for a good turn out to give as much support as we can.
Luke's brother Yannick is a cub scout and his Pack (Pack 25) asked us how they might be able to help. We talked it through and came up with a couple of things. We now receive regular visits from Pack families to keep our yard in good shape. This is very much appreciated. It's one thing at least that we don't have to worry about now. Scott Rodriguez and Marshall Ferrell and their two sons (Landon and Addison) kicked things off at the end of July. Many many thanks to them. They had a lot to do to bring things back under control and they certainly rose to the challenge. The other idea is to hold a charity car wash in support of Dr Escolar's research group at Pittsburgh Children's Hospital. They have been very helpful to us in terms of what to expect as Luke's condition progresses and how to head off certain things before they become critical. Basically, as they put it, to keep us out of the Emergency Room. Surprisingly, even though their lab is one of the pre-eminent centers in the US for the treatment of MLD, their research is not very well funded. But if there is ever going to be a proper and effective treatment for this horrible disease, the work they do is essential to gain a better understanding of it's natural history and thereby determine what treatments make a real difference. The car wash will probably happen in the Fall when the heat eases off and we will be hoping for a good turn out to give as much support as we can.