I went to the hospital this morning to visit my sister-in-law so I came in late to work. My brother came into Boston for an overnight stay with her in the hospital (my parents drove out to western Massachusetts to care for their kids) so I was able to see him for the first time in a few months.<\/p>\n
I don’t know how they do it. It must be so exhausting. When I got there, a doctor (surgeon?) was in there consulting with them. I stayed in the corridor until the doctor left. Apparently, he was giving them their options – both of which sucked. For some reason, he was encouraging them to chose a route that would leave Heidi without her feeding tube for a month and THEN have surgery. The other option (which was the original option) was to have surgery this Friday.<\/p>\n
To the three of us it seemed like a no-brainer: she’s in horrible discomfort so let’s get her treated as soon as possible so she can be released as soon as possible.<\/p>\n
We’ll see what happens. Oh, and I got some additional bad news while there. In the past, I knew that it was suspected that my nephew had symptoms of mitochondrial disease but it was not confirmed that he\u00a0actually had\u00a0it (you may recall that my niece died from it in September). Well, he officially does have it now.<\/p>\n
At 9 years old he’s getting a stroller. Yep, a stroller. This is because he’s too weak to walk long distances. He’s OK for short-term\/local activity, but anything longer than that and he practically collapses. This is on top of his gastro-intestinal issues requiring lactose and gluten-free diets, and the neurological issues of Aspergers (spelling?) and Tourette’s.<\/p>\n
Knock on wood, my niece remains 100% healthy and active.
\nDamn – today’s posting was\u00a0a downer.<\/p>\n","protected":false},"excerpt":{"rendered":"
I went to the hospital this morning to visit my sister-in-law so I came in late to work. My brother came into Boston for an overnight stay with her in the hospital (my parents drove out to western Massachusetts to care for their kids) so I was able to see him for the first time […]<\/p>\n","protected":false},"author":74,"featured_media":0,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[1],"tags":[],"class_list":["post-570","post","type-post","status-publish","format-standard","hentry","category-uncategorized"],"jetpack_featured_media_url":"","_links":{"self":[{"href":"https:\/\/archive.blogs.harvard.edu\/snarl\/wp-json\/wp\/v2\/posts\/570","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/archive.blogs.harvard.edu\/snarl\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/archive.blogs.harvard.edu\/snarl\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/archive.blogs.harvard.edu\/snarl\/wp-json\/wp\/v2\/users\/74"}],"replies":[{"embeddable":true,"href":"https:\/\/archive.blogs.harvard.edu\/snarl\/wp-json\/wp\/v2\/comments?post=570"}],"version-history":[{"count":0,"href":"https:\/\/archive.blogs.harvard.edu\/snarl\/wp-json\/wp\/v2\/posts\/570\/revisions"}],"wp:attachment":[{"href":"https:\/\/archive.blogs.harvard.edu\/snarl\/wp-json\/wp\/v2\/media?parent=570"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/archive.blogs.harvard.edu\/snarl\/wp-json\/wp\/v2\/categories?post=570"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/archive.blogs.harvard.edu\/snarl\/wp-json\/wp\/v2\/tags?post=570"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}