Raising a Child With Spinal Muscular Atrophy With Guest Megan Fabrizi

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Episode 100: Raising a Child With Spinal Muscular Atrophy With Guest Megan Fabrizi

In this episode, guest Megan Fabrizi discusses raising children with spinal muscular atrophy. When Liam was born, he was having difficulty regulating his temperature. He wasn’t moving his body. At his 4 month visit, he was diagnosed with hypotonia. The pediatrician was concerned and got him in immediately to a neurologist. When he was 5 months old, he got genetic testing and was diagnosed with SMA Type 1. Megan first noticed symptoms when he would cry and then gasp for breath. Through his treatments, they were able to halt the progression of his SMA and slowly make progress. He has been in PT and OT for most of his life. Liam as had trouble making friends due to other children being nervous about his medical conditions. However, he has a lot of online friends with SMA. Current treatments include a feeding tube, medication, and respiratory treatments.

As he has grown up, he is a happy kid and has remained happy through all of life’s difficulties. Megan has found it challenging to make sure to give each child her all, due to their complex and intensive but differing needs, but goes out of her way to try. They do a lot of video chats, sensory time, and therapies during their day. Through this, she has dealt with anxiety, depression, and PTSD, for which psychotherapy has been very helpful. She also does meditation, playing the ukulele, and singing. She copes by using social support.

Facebook

Love for little Liam’s Fight

Cure SMA

Zac’s Play Day

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Show Music:

Intro Outro: Intro Outro 2 by Mattias Lahoud under CC-BY 3.0 License (www.freesound.org)

Theme Song: 90s rock style by monkeyman535 under CC-BY 3.0 License (www.freesound.org)

Self Care Song: Green and Orange No Water by Duncan Alex under CC-BY 3.0 License (www.freesound.org)

Hosted by: Jessica Temple and Lewis Temple

Disclaimer: Our show is not designed to provide listeners with specific or personal legal, medical, or professional services or advice. Parents of children with health issues should always consult their health care provider for medical advice, medication, or treatment.

Copyright 2021 Jessica Temple

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