{"id":15769,"date":"2014-08-06T20:26:06","date_gmt":"2014-08-07T03:26:06","guid":{"rendered":"http:\/\/projectbat.com\/minibat\/?p=15769"},"modified":"2014-08-06T20:26:06","modified_gmt":"2014-08-07T03:26:06","slug":"year-3-week-41-day-6","status":"publish","type":"post","link":"https:\/\/projectbat.com\/minibat\/2014\/08\/06\/year-3-week-41-day-6\/","title":{"rendered":"Year 3 – Week 41 – Day 6"},"content":{"rendered":"

Just one more day filled with furious packing remains before departure!<\/p>\n

Today was terrible and I am glad it is over. Not only did we have a brand new services coordinator, we had a brand new district nurse. These meetings every 90 days determine our nursing and our therapies. So, to a house they have never been to before, they decide to bring yet another new coordinator in training and have her do all of the paperwork.
\nAfter not showing up on time, taking 2hrs to do a meeting that should have taken 45 minutes, and giving me the patronizing, “we know how you feel” line of crap, they cut 8hrs a week away from our nursing hours with a, “please call if you need anything” dismissal.<\/p>\n

It gives me such a headache to have these meetings. It is humiliating. I don’t feel like I am entitled to receive services, I am lucky to have them. I just feel desperate for the help and know that it will all be gone sooner that we will be ready.<\/p>\n

Brendan had a final checkup with his pulmonologist today and got the “all clear” for travel. On the way to the hospital, Trevor slept for 5 minutes in the car. On the way home, Brendan slept for 5 minutes in the car. That was naps for today!<\/p>\n

One wiped out boy!
\n\"341b13\"<\/a><\/p>\n

5:30PM, Trevor hit a wall right before the last bite of PB&J.
\n\"341t21\"<\/a><\/p>\n

UGH. It was too early to put him to bed, too late to allow a nap. I got him up and gave him a long bubble bath and tried to put him to bed early. He still put up an hour long fight to go to bed, but was asleep by 8:20pm.<\/p>\n

The stress of the day is still sitting like a lump in my throat and a pit in my stomach. I am really looking forward to vacation and seeing all of our family. The only thing more relaxing than 2 crazy kids is 7 crazy kids!<\/p>\n","protected":false},"excerpt":{"rendered":"

Just one more day filled with furious packing remains before departure! Today was terrible and I am glad it is over. Not only did we have a brand new services coordinator, we had a brand new district nurse. These meetings … Continue reading →<\/span><\/a><\/p>\n","protected":false},"author":1,"featured_media":0,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[1],"tags":[],"class_list":["post-15769","post","type-post","status-publish","format-standard","hentry","category-updates"],"_links":{"self":[{"href":"https:\/\/projectbat.com\/minibat\/wp-json\/wp\/v2\/posts\/15769","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/projectbat.com\/minibat\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/projectbat.com\/minibat\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/projectbat.com\/minibat\/wp-json\/wp\/v2\/users\/1"}],"replies":[{"embeddable":true,"href":"https:\/\/projectbat.com\/minibat\/wp-json\/wp\/v2\/comments?post=15769"}],"version-history":[{"count":1,"href":"https:\/\/projectbat.com\/minibat\/wp-json\/wp\/v2\/posts\/15769\/revisions"}],"predecessor-version":[{"id":15770,"href":"https:\/\/projectbat.com\/minibat\/wp-json\/wp\/v2\/posts\/15769\/revisions\/15770"}],"wp:attachment":[{"href":"https:\/\/projectbat.com\/minibat\/wp-json\/wp\/v2\/media?parent=15769"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/projectbat.com\/minibat\/wp-json\/wp\/v2\/categories?post=15769"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/projectbat.com\/minibat\/wp-json\/wp\/v2\/tags?post=15769"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}