Family
管理複雜孩子的旅程
在這次對話中，您將遇到 Blyth Lord——卡梅倫的母親，她患有遺傳性疾病並在 2 歲時去世。
閱讀更多防止護理人員倦怠：增強復原力研討會
這個關於建立復原力和防止護理人員倦怠的研討會是由一對了不起的母女二人組舉辦的——STXBP1 媽媽和社會工作者，Amelia Seraphia Derr 和她的媽媽，…
閱讀更多未確診
本次 DEE-P 討論錄製於 2023 年 9 月 13 日。我們討論不同的…
閱讀更多罕見的護理和自我護理的挑戰 – DEE-P 討論
本次網路研討會錄製於 2023 年 6 月 30 日。人們喜歡告訴我們我們需要…
閱讀更多家庭內替代通訊和存取的高科技選項
“High-tech Options for Alternative Communication and Access within the Home” is the fifth in our 6-part series on Optimizing Therapies for those Living with DEEs in partnership with our friends…
閱讀更多適用於具有複雜溝通需求的兒童的低技術/無技術通訊系統
“Low-Tech/No-Tech Communication Systems for Children with Complex Communication Needs” is the fourth in our 6-part series on Optimizing Therapies for those Living with DEEs in partnership with our friends at…
閱讀更多揭開共濟失調、肌張力過高、手足徐動症和混合音的奧秘
“Unraveling the Mysteries of Ataxia, Hypertonicity, Athetosis and Mixed Tone” is the second in our 6-part series on Optimizing Therapies for those Living with DEEs in partnership with our friends…
閱讀更多針對嚴重發育遲緩兒童的適應性設備和治療策略
“Adaptive Equipment and Therapy Strategies for Children with Severe Developmental Delays” is the third in our 6-part series on Optimizing Therapies for those Living with DEEs in partnership with our…
閱讀更多肌張力減退及其如何影響整體功能和發育的概述
“An Overview of Hypotonia and How it Impacts overall Functioning and Development” is the first in our 6-part series on Optimizing Therapies for those Living with DEEs in partnership with…
閱讀更多兒科臨終關懷支持與護理
This is a recording of the webinar “Complex Continual Care for those with living DEEs and their families,” which was held on November 30th, 2021. Pediatric hospice support is not…
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