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New Life

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!
9 people hearted this

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Rachel Hastings
By Rachel Hastings
Suzanne your courage and love bring tears to my eyes. I am so lucky to know you and your family. You are an inspiration and I can't wait to see Shelby growing up - and maybe catching up a little as the years go by. Love you! xx
Deirdre Quinn
By Deirdre
Oh yay!! Sending big snowy(yes it snowed again!) love from Montana. I love you all and miss you. Thank you for your updates. Hang in there. ❤️😋
julie hochstatter
By Hochstatter crew
Loved reading this! Love you guys!!!
kim regensburger
By kim regensburger
Praise God!! Wishing you all continued physical and emotional healing!!

Love you!!
Maria Trueblood
By Maria Trueblood
I am so excited for Shelby and happy she is handling the transition to the naked neck club well!