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  1. Bad days mean beter days are just around the corner...

    Been kinda a down day...Avarey stayed stable all night but started having blood pressure issues throughout the day. She is now back on her paralysis medicine because she was becoming to active and trying to breathe on her on and upsetting this vent. All of this led to her blood pressure dropping. She has been added to another blood pressure medicine, but they are weeening her off of one of the stronger bp meds. So we are up to 3 bp meds for the night, but hopefully down to one in the morning! The ...
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  2. Soul Searching

    Good Afternoon, My Gorgeous, Liam!

    I have been doing a lot of internal soul searching and talking with just a couple of people. I won't dwell on my milions of thoughts, fears, and questions, but what I've surmised from everything is that I believe with all of my being that you would not want me to dwell and turn myself inside out with the shoulda, coulda, woulda's and what if's. I know that you want us to believe that God had a plan from the very beginning and that God would never ...
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  3. Avarey Grace Update!! <3

    Ok...big update on Avarey...first of all thank you for every last thought prayer question well wish and concerbs...it is amazing to see how many peoples hearts Avarey has touched...she sure has grabbed a hold of ours...Kevin and I are so thankful to be blessed with such amazing people in our lives...thank you!! Now the princess has had a great day!!! They kept ger on the jet vent instead of switching to the traditional bc right now it is gentler on her...they have completely turned her paralisys ...
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  4. Not Many Words

    Good Afternnon, My Gorgeous, Most Precious Angel Boy, Liam,

    My mind is flooded with many thoughts, fears and questions. I am struggling to find any words that can properly express what I am thinking and feeling, but I am at a loss. I know that you have your little arms around me and are comforting me and guiding me through the particular valley we are all walking through right now. I know that you are listening to my every word and hear me loud and clear, as I talk with you every ...
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  5. CDH Repair

    Quote Originally Posted by KimFitzgerald View Post
    My little boy is a CDH survivor and he is now 2. We just went to our yearly follow-up appointment with Pediatric Surgery. According to his x-ray his diaphram is up to high. The doctor refered to it as being "loose". We are now looking at a repair. Has any other family had this or a similar issue?
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