Back in the hospital: I had a restful night at home relatively speaking. I got up at 5:45 a.m. to survey the status of recycling compliance in our neighborhood for a study assignment. I’m trying to keep up with my school work. It is quite a juggling act. The survey of the neighbor’s trash seemed to go quicker than two weeks ago when I did it — or maybe it seems much easier to stand out in the cold, pre-dawn dark, looking at people’s garbage and filling out survey forms, than enduring a restless night in the hospital while watching your little daughter suffer seizures….That is tonight’s assignment. It has been hard, but I feel that Ella is in the good hands of Dr. Duffy. One of the families in our support group that I went to last night, has been through the same thing. Their daughter spent the first 5 months of her life in hospital going through the seizure med routine.<\/p>\n
Dr. Volpe kept saying the right combination and amount of meds would work. They did. I’m optimistic about them gaining control within the next few days. I came away from our meeting at Johns Hopkins with mixed feelings – both hopeful and pessimistic. I’m worried about what the whole unnamed syndrome (hemi-hypertrophy, HME and the nevi syndromes together) mean for the long term.<\/p>\n
Just trying to live each day at a time and put anxiety aside. At this point there doesn’t seem to be any advantage to planning to do the surgery there. We have a meeting with Dr. Black, the senior neurosurgeon here on Monday.<\/p>\n","protected":false},"excerpt":{"rendered":"
Back in the hospital: I had a restful night at home relatively speaking. I got up at 5:45 a.m. to survey the status of recycling compliance in our neighborhood for a study assignment. I’m trying to keep up with my school work. It is quite a juggling act. The survey of the neighbor’s trash seemed […]<\/p>\n","protected":false},"author":3,"featured_media":0,"comment_status":"closed","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_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","default_image_id":0,"font":"","enabled":false},"version":2},"jetpack_post_was_ever_published":false},"categories":[3],"tags":[],"class_list":["post-1116","post","type-post","status-publish","format-standard","hentry","category-ellaslog"],"jetpack_publicize_connections":[],"jetpack_featured_media_url":"","jetpack_sharing_enabled":true,"jetpack_shortlink":"https:\/\/wp.me\/p4PM2I-i0","_links":{"self":[{"href":"https:\/\/www.rozinblog.com\/ella\/wp-json\/wp\/v2\/posts\/1116","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.rozinblog.com\/ella\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.rozinblog.com\/ella\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.rozinblog.com\/ella\/wp-json\/wp\/v2\/users\/3"}],"replies":[{"embeddable":true,"href":"https:\/\/www.rozinblog.com\/ella\/wp-json\/wp\/v2\/comments?post=1116"}],"version-history":[{"count":1,"href":"https:\/\/www.rozinblog.com\/ella\/wp-json\/wp\/v2\/posts\/1116\/revisions"}],"predecessor-version":[{"id":1117,"href":"https:\/\/www.rozinblog.com\/ella\/wp-json\/wp\/v2\/posts\/1116\/revisions\/1117"}],"wp:attachment":[{"href":"https:\/\/www.rozinblog.com\/ella\/wp-json\/wp\/v2\/media?parent=1116"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.rozinblog.com\/ella\/wp-json\/wp\/v2\/categories?post=1116"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.rozinblog.com\/ella\/wp-json\/wp\/v2\/tags?post=1116"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}