tag:blogger.com,1999:blog-793772659866386394.post3602875695462530888..comments2023-03-26T09:02:06.239-05:00Comments on Olivia's Special Heart: Our HLHS Journey: SOOOO Angry!Melaniehttp://www.blogger.com/profile/07975116801763990568noreply@blogger.comBlogger4125tag:blogger.com,1999:blog-793772659866386394.post-33050661258926393902011-12-20T22:53:04.806-06:002011-12-20T22:53:04.806-06:00That is a terrible, horrible, no good, very bad da...That is a terrible, horrible, no good, very bad day! Seriously, when it rains it pours. All-in-all, the fact that Olivia checked out at the pediatrician and went back to RMH instead of to CHOP is great news. One of the reasons I found RMH (at least in Philly) to be inconvenient is the fact that we had no fridge. Every time I pumped, I had to walk to the main kitchen - every 3 hours. That didn't work well for us, so we went elsewhere. I'm glad you're settled in your new room. Is this Diego's room or some other Nick-themed room? <br /><br />I would definitely call down and request a fridge - tell them you have a cardiac baby who cannot breastfeed and you're pumping every 2-3 hours and fortifying and need a more convenient set up.Staceyhttps://www.blogger.com/profile/00236715948080857359noreply@blogger.comtag:blogger.com,1999:blog-793772659866386394.post-7099134220851273732011-12-20T18:46:18.498-06:002011-12-20T18:46:18.498-06:00Dear Melanie,I am really sorry you and Olivia had ...Dear Melanie,I am really sorry you and Olivia had such a bad day. It is so overwhelming when you have to deal with all this alone. It's so disappointing that the staff at the house were not able or willing to be some support and help for you. I had to respond to this but I actually wanted to ask you about something totally different, although you may not have time and energy to respond and that's ok. I am Sheila's cousin, Kathryn. I'm the one that makes a family calendar. Since all of us Jordans watch and pray for you and Olivia everyday even though we may not say much online, I especially wanted to include some of your photos of you all and Olivia on the calendar this year. I can print them out at home myself. I asked Sheila about it and she thought it was fine, but I felt uncomfortable about doing it without asking you directly,late as usual. Lots of love from ours to yours.<br />PS I hope you find a friend there at the house, immediately if not sooner.Kathrynnoreply@blogger.comtag:blogger.com,1999:blog-793772659866386394.post-31726338338599954452011-12-20T08:20:48.471-06:002011-12-20T08:20:48.471-06:00I would have agreed to the room change, but that I...I would have agreed to the room change, but that I would need someone to pack all of my stuff because I couldn't possibly do it with my special needs child while I am here alone. Then, I would have watched them move it all.Brittanynoreply@blogger.comtag:blogger.com,1999:blog-793772659866386394.post-72115941480411212022011-12-20T07:53:46.005-06:002011-12-20T07:53:46.005-06:00Oh no...that really sucks. I am surprised they ma...Oh no...that really sucks. I am surprised they made you move. I would think they would give the room you are in to the new family. No fridge is going to be really hard...maybe you need to talk to the house manager and see what they can do for you.<br /><br />Many prayers for sleep and a relaxing day.Wodzisz Familyhttps://www.blogger.com/profile/03402962907991995167noreply@blogger.com