Support Registry Update

Medical updates and what’s next

In support of
Allie D
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Since the last update there have been many things going on. Allison had her gtube placed February 10th. This has been life changing. She has finally been able to receive the hydration she needs. We also put a few nutrients in there. We have seen the pulmonologist, orthopedic, orthotist, neurologist, and have had multiple tests. Her lung capacity is 50%. She now needs more equipment. A nebulizer and a cough assist machine. The bedroom is looking more and more like a hospital. After many discussions we have found out there isn’t much left for the doctors to do. At this point we will just see individual doctors to treat symptoms. They found degenerative disc disease and a spinal cord finding. As well as bilateral lung opacity. We have a consult for SDR surgery. We also have a planned right foot reconstruction and tendon transfer. This week we drive 5hrs to see neurology, Dysautonomia specialist, and GI. We also have an EMG. There’s a lot going on and it’s a lot. Financially and emotionally.

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