This is Luke at one of his physical therapy sessions blowing grape flavoured bubbles by pushing on a big red button. It's something he's done many times before - I think you can tell that from the look on his face! Really? You want me to do this again? "Blowing bubbles" is also the name we use for venting air from his tummy through his G-tube. This needs to be done regularly - just like burping a baby. Sometimes, like at 5 am this morning, it's really impressive. Luke woke up in some discomfort and you could have got a pretty decent note from a trumpet with the amount of air he blew out. Once done, he was straight back to sleep with the hint of a satisfied smile on his face.
So, a few things to report. First is that we didn't go to Pittsburgh as planned. Unfortunately, dad to go on an emergency trip for work so we had to postpone. Still trying to figure out a time that works for everybody. Second is that a chap called Chris Seymour, whose niece Cori has MLD, is doing a marathon challenge in support of the MLD Foundation. Actually that's 7 marathons on 7 continents! You can buy T shirts to support Chris' fundraising efforts here: https://www.bonfirefunds.com/run-over-mld . Good on you Chris. Lastly, Luke turns FIVE tomorrow! How about that? When we first learned of this awful disease, most of the literature said that children with the late infantile form usually die before they are five. This seems to be a pretty outdated statistic these days, with kids often surviving to seven or eight. Still, it's a milestone that has stuck in our minds and a big deal for Luke. We will be having a party for him at home on Saturday with lots of friends from the neighbourhood and his school and the army of wonderful people who help to take care of him. We'll post pictures to the gallery.
As always, thanks for checking in.
So, a few things to report. First is that we didn't go to Pittsburgh as planned. Unfortunately, dad to go on an emergency trip for work so we had to postpone. Still trying to figure out a time that works for everybody. Second is that a chap called Chris Seymour, whose niece Cori has MLD, is doing a marathon challenge in support of the MLD Foundation. Actually that's 7 marathons on 7 continents! You can buy T shirts to support Chris' fundraising efforts here: https://www.bonfirefunds.com/run-over-mld . Good on you Chris. Lastly, Luke turns FIVE tomorrow! How about that? When we first learned of this awful disease, most of the literature said that children with the late infantile form usually die before they are five. This seems to be a pretty outdated statistic these days, with kids often surviving to seven or eight. Still, it's a milestone that has stuck in our minds and a big deal for Luke. We will be having a party for him at home on Saturday with lots of friends from the neighbourhood and his school and the army of wonderful people who help to take care of him. We'll post pictures to the gallery.
As always, thanks for checking in.