We are so excited to say that we are home and Shelby is still without her trach! The ENT told us that everything looks great and didn't need to laser anything! YAY we went up to the PICU and stayed for 24 hours of observation to make sure she can keep her sats up and be able to breathe on her own throughout the night. We came home and all has been good! She has been telling us that she is a big girl and the sound of her laugh has been making her laugh even harder :) But not everything has been perfect...Shelby has been traumatized by being in the hospital again, she was refusing to take a bath and wouldn't let us touch her in fear that something was gong to hurt her. I have to say that is the hardest thing about having a child that has a chronic illness, they know what is going on and want nothing to do with it! We took Shelby to the Science Museum today and it was really weird we only brought a small bag with a few things in it for her and the diapers took up most of the room! If you have ever traveled with us you know we normally take a small ER with us everywhere we go!! Honestly we could help anyone in almost all situations with the stuff we carry around! Including a full time staff of nursing that also comes with us everywhere! Life is going change for us and we are only hoping for good things! I don't know how to explain it but for us we live life everyday as of it is our last day, we grieve for our child still and we also celebrate milestones as if it were never going to happen! Its a tough life we live but it is also an amazing one! I want to say thank you everyone for all of your prayers! Without all of your continued support I am not sure we would have made it as far as we have in these past 4 years!! Thank you again and God Bless to everyone!
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