Jayden’s Story

Site created on November 30, 2018

Welcome to our CaringBridge website. We are using it to keep family and friends updated in one place. We appreciate your support and words of hope and encouragement. Thank you for visiting.

Newest Update

Journal entry by Anna Reed

Jayden's been home a week last week's labs we're still heading in the right direction. We have his kidney levels back to 50% function . We will be continuing weekly labs and just wait and see what happens. We are noticing lots of facial swelling with the steroids. He has his good days and bad the steroids give him lots of energy for short spurts of time.he generally over does it in these moments and is in a lot of pain after because of this and the fact that he can't walk long distances or stand for long periods of time getting a wheelchair for him is in the works,but like LL things with insurance these things take time, still waiting on all the Medicaid waiver paperwork to go through so we can get him a in home nurse. Had the conference call for home tutoring this week all the paperwork is done but we can't seem to find him a teacher to do it they have looked in both Rensselaer school district and north white school district no takers as of yet they are going to reach out to twin lakes district as well 
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