tag:blogger.com,1999:blog-7946092121614357964.post2602996858410481213..comments2023-10-28T02:57:57.520-07:00Comments on What Used To Be Perfect But Now Is Broken: Waiting for more surgeryANewKindOfPerfecthttp://www.blogger.com/profile/11978293330074662766noreply@blogger.comBlogger6125tag:blogger.com,1999:blog-7946092121614357964.post-52382980920145166752012-03-18T08:58:23.431-07:002012-03-18T08:58:23.431-07:00Sending Prayers from CT. I want to cry...its just ...Sending Prayers from CT. I want to cry...its just not fair. I dont know how you do it. I dont know how we all do it with our special little girls...but we do! I am unfamiliar with tubes and such but my madie still cannot eat solid foods without gagging and crying..strictly bottle and she is 5..:( hang in there. and pocket those prayers!!Jamiehttps://www.blogger.com/profile/08806816819294256310noreply@blogger.comtag:blogger.com,1999:blog-7946092121614357964.post-70699788606030947682012-03-18T06:36:52.131-07:002012-03-18T06:36:52.131-07:00I hate it when you encounter a know it all like th...I hate it when you encounter a know it all like this doc. I went through this with The Boy with a nasty surgeon who wanted to place a Broviak in his GROIN (a diapered baby!) and refused a port because he had a trache and she didn't want him "spitting secretions all over it." A port? A completely closed system? But she thought a Broviak being sh*t all over was fine? She was later SECRET PEPPER PERSON:https://www.blogger.com/profile/06434583043459305729noreply@blogger.comtag:blogger.com,1999:blog-7946092121614357964.post-81376869324047854652012-03-17T19:48:31.587-07:002012-03-17T19:48:31.587-07:00oh how very frustrating. lots of hugs and prayers...oh how very frustrating. lots of hugs and prayers.Juniorhttps://www.blogger.com/profile/03719754876592849914noreply@blogger.comtag:blogger.com,1999:blog-7946092121614357964.post-31441556766729730272012-03-17T16:23:37.982-07:002012-03-17T16:23:37.982-07:00I'm so sorry that Emily is going through so mu...I'm so sorry that Emily is going through so much lately! I feel as though mitochondrial disorder is kicking our butts too right now! I wish I knew something that could help! Thinking of you guys...Reagan Leighhttps://www.blogger.com/profile/10276933188608521229noreply@blogger.comtag:blogger.com,1999:blog-7946092121614357964.post-17534573621982547272012-03-17T15:09:38.518-07:002012-03-17T15:09:38.518-07:00How frustrating. Am praying this will be a short ...How frustrating. Am praying this will be a short admission.Alisonhttps://www.blogger.com/profile/09793960049542281502noreply@blogger.comtag:blogger.com,1999:blog-7946092121614357964.post-28301579942906332912012-03-17T14:52:36.351-07:002012-03-17T14:52:36.351-07:00Thank you for the update! I will continue to pray ...Thank you for the update! I will continue to pray for Emily and all of you!Lindsay Mariehttps://www.blogger.com/profile/06545086525303015690noreply@blogger.com