Sunday, February 12, 2012

Information Hightway

    Today was a day full of information...I am glad for that but its so much to comprehend some times. I need to remember to write things down, but when I'm being told the information its just one thing after another!!!
     So today we figured a better way to feed Chloe by just placing the nipple in her mouth and dropping the milk in the nipple. At 2pm we wanted to do that again but, while i was doing her bandage changes I looked in her mouth while she was crying like I always do, and she had a pretty good sized blister on the side of her tongue. We are unsure how exactly it got there because, She has had her passie for awhile now, so if she would have had a blister by now, and if it was from the bottle, I would think it would have appeared the first day with the bottle. So we are going to get her a special kind of nipple that is for babies with anything wrong with their mouth and put some aquaphore on the nipple and see if that helps any. A special thanks to The EB group and Janelle for the advice, I told the nurse, and we are using it!!! So until we feel like her tongue is healed, we are pushing her feeds though the feeding tube for now. It makes me so sad, It was like the whole side of her tongue! Thankfully it popped on its own and she didn't have to deal with it for to long.
     After that, where the information stuff really started...
     I have to have a pediatrician picked by Thursday, her primary nurse said so, so that way that Dr can be prepared for EB. Then we have to have a dermatologist, and then we may have to her follow up care appointments with the EB specialist in Cincinnati Ohio, and they meet once a month.
     I guess when now that I have typed it out, it doesn't seem like it is a lot of information, maybe its just because I am so tired.
     I really hope Chloe gets over what ever it is that she has going on. She has had a fever and coughing a lot, dropping her oxygen, or has a really high heart rate. May still be a reaction to her 2 month shots, and she has a minor cold. poor little baby doll.... I wish we wouldn't have to deal with mouth blisters.... but.... I guess we are. I am happy that it seems like more people are becoming aware about EB, Friends and family of ours are always on the look out for elephant and butterfly items for Chloe and I, It is so awesome. I love my butter fly child!


  1. Oh sweet Chloe, I am praying she gets over her fever and coughing very soon, and for no more mouth blisters! You are doing a great job momma! God Bless!


  2. I don't know if you have read Tripps blog but courtney has a lot of information on caring for a baby with eb if you go to her profile she has another one just on information for eb moms although its not complete. Her blog is