I am feeling overwhelmed and stressed and sad for my daughter. She has many health conditions including dandy-Walker, seizures, severe developmental delay, hearing and vision loss, and tons of GI issues. The current problem is vomiting. She has a G-button and is fed elecare. She has been throwing up for a couple months now, daily. She is losing weight and just isnt herself anymore. Ive been going back and forth with her GI doc the entire time. They have done scopes, blood work, tried different meds. But i dont feel like they are doing enough. I am waiting on an appointment with palliative care to help me out. Ive done lots of research and have several ideas and plans in my head. Im so ready to have a team on my side to help me carry these plans out to help my daughter. I guess Im just sharing to get it out in the open to a group of parents who may understand my feelings. Theres really no one i can really talk to about this. Have you ever been asked hows your daughter/son? and you just say they are fine because to tell the truth would be a whole long conversation that they may not understand anyways? Or you dont feel like bringing someone else down with the not so happy info? Thats how i feel a lot lately. Thanks for taking the time to read this. Any words of encouragement would be appreciated. Just knowing Im not alone is nice. https://facebook/madeline.kinne
Posted on: Wed, 13 Aug 2014 21:48:28 +0000
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