It’s\u00a0Mommy -standing in for your usual narrator Daddy-<\/p>\n
I know it had been a day or two since we posted.\u00a0 So first to catch you up to this morning.\u00a0 On Friday we asked them to take her off the gentamicin antibiotic that she had been receiving due to potential serious side effects to children with mitochondrial disorders.\u00a0 However on Saturday night she ran a low grade fever (that went away on it’s own) so they put her on cipro and vancomycin.\u00a0 They also took cultures and they should be final tomorrow.\u00a0 So far they have been negative and if they are tomorrow they will take her back off those antibiotics.\u00a0 On a related note after they took her off the gentamicin her blood pressure has returned to normal-ish.\u00a0 so yea!\u00a0 She has seemed perkier and been sillier over the past few day off and on.\u00a0 She is still trying to recover nutritionally but acts healthier.\u00a0 They are continuing to up her Elecare feeds and continuing TPN to get her where she need to be.\u00a0<\/p>\n
Now on to the title sequence:\u00a0 Today we had our “care conference”.\u00a0 This is a meeting set up between all the doctors and specialists on a case and the parents (apparently it doesn’t happen very often)\u00a0.\u00a0 They told us a little about they were following up on and we got to ask them some of our questions and actually get the different specialists talk with each other.\u00a0\u00a0\u00a0 We know they are still working on getting her nutrition better.\u00a0 They were hoping that the gut would heal some more on its own, but they have decided to go ahead with some steroids probably tomorrow.\u00a0 It needs to heal for her to get better nutrition and she needs better nutrition to get it to heal.<\/p>\n
The geneticist is following up on a whole slew of tests and is VERY interested in further in-depth test of Adela’s karyotype as she calls it the chances of that karyotype are one-in-a-billion to imposssible. (sounds like Adela to me) She also said that Adela would most likely be presented at the big genetics conference and supposedly UNC is receiving a grant for genome sequencing\u00a0 within a year or two and she is consider Adela for one of the test subject positions –\u00a0 which would be a huge deal –\u00a0 this is cutting edge – ten’s of thousands of dollars of research — and would give them a lot of information of what is going on (long-term)\u00a0and what she is likely to have problems with.<\/p>\n
I’m know I’ve forgotten a bunch, but that will do for now.<\/p>\n","protected":false},"excerpt":{"rendered":"
It’s\u00a0Mommy -standing in for your usual narrator Daddy- I know it had been a day or two since we posted.\u00a0 So first to catch you up to this morning.\u00a0 On Friday we asked them to take her off the gentamicin antibiotic that she had been receiving due to potential serious side effects to children with […]<\/p>\n","protected":false},"author":1,"featured_media":0,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"jetpack_post_was_ever_published":false,"_jetpack_newsletter_access":"","_jetpack_dont_email_post_to_subs":false,"_jetpack_newsletter_tier_id":0,"_jetpack_memberships_contains_paywalled_content":false,"_jetpack_memberships_contains_paid_content":false,"footnotes":"","jetpack_publicize_message":"","jetpack_publicize_feature_enabled":true,"jetpack_social_post_already_shared":false,"jetpack_social_options":{"image_generator_settings":{"template":"highway","enabled":false},"version":2}},"categories":[1],"tags":[],"jetpack_publicize_connections":[],"jetpack_featured_media_url":"","jetpack_shortlink":"https:\/\/wp.me\/pviUd-7u","jetpack_sharing_enabled":true,"_links":{"self":[{"href":"http:\/\/www.raisingladybug.com\/index.php?rest_route=\/wp\/v2\/posts\/464"}],"collection":[{"href":"http:\/\/www.raisingladybug.com\/index.php?rest_route=\/wp\/v2\/posts"}],"about":[{"href":"http:\/\/www.raisingladybug.com\/index.php?rest_route=\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"http:\/\/www.raisingladybug.com\/index.php?rest_route=\/wp\/v2\/users\/1"}],"replies":[{"embeddable":true,"href":"http:\/\/www.raisingladybug.com\/index.php?rest_route=%2Fwp%2Fv2%2Fcomments&post=464"}],"version-history":[{"count":2,"href":"http:\/\/www.raisingladybug.com\/index.php?rest_route=\/wp\/v2\/posts\/464\/revisions"}],"predecessor-version":[{"id":466,"href":"http:\/\/www.raisingladybug.com\/index.php?rest_route=\/wp\/v2\/posts\/464\/revisions\/466"}],"wp:attachment":[{"href":"http:\/\/www.raisingladybug.com\/index.php?rest_route=%2Fwp%2Fv2%2Fmedia&parent=464"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"http:\/\/www.raisingladybug.com\/index.php?rest_route=%2Fwp%2Fv2%2Fcategories&post=464"},{"taxonomy":"post_tag","embeddable":true,"href":"http:\/\/www.raisingladybug.com\/index.php?rest_route=%2Fwp%2Fv2%2Ftags&post=464"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}