OK, so maybe we are switching from Beatles song titles to Pink Floyd. Anyway, just a couple of quick things to report.
First, we have been in and out of St Josephs Hospital having ultrasound and MRI scans of Luke's gallbladder. He's been having some GI issues, and there was a concern that he might be developing gall stones or "sludge" which is quite common for MLD patients. The good news is that the MRI last week showed that his gallbladder is fine. So his symptoms may simply be part and parcel of his lack of GI motility, which is an on-going challenge. We have switched his diet to virtually 100% Neocate (his "amino acid" formula) at a slow rate around the clock. This seems to be helping and we will try to re-introduce some higher calorie supplements once things settle down a bit.
Second, we are off on a road trip to South Carolina next week courtesy of Make-A-Wish! We have a week in a beach front condo (apartment) that we are all very excited about. We'll try to post updates and photos daily so you can follow along on our adventure. And of course: Wish You Were Here!
First, we have been in and out of St Josephs Hospital having ultrasound and MRI scans of Luke's gallbladder. He's been having some GI issues, and there was a concern that he might be developing gall stones or "sludge" which is quite common for MLD patients. The good news is that the MRI last week showed that his gallbladder is fine. So his symptoms may simply be part and parcel of his lack of GI motility, which is an on-going challenge. We have switched his diet to virtually 100% Neocate (his "amino acid" formula) at a slow rate around the clock. This seems to be helping and we will try to re-introduce some higher calorie supplements once things settle down a bit.
Second, we are off on a road trip to South Carolina next week courtesy of Make-A-Wish! We have a week in a beach front condo (apartment) that we are all very excited about. We'll try to post updates and photos daily so you can follow along on our adventure. And of course: Wish You Were Here!