Over the years, we’ve trained a few people on how to care for Ella. We have to show them how to stop and start her feeding pump, disconnect and connect the feeding tube to her G-tube button, lift her from her chair, take her to the bathroom, and even bathe her. All those trained can do some of it, few can do all of it.
Recently, we trained the youngest person ever to take care of Ella, a middle-school-aged girl who is the big sister of one of our son Henry’s friends! Earlier in the year, she was shown how to lift Ella properly from her chair. Just recently, she was trained on how to assist Ella in the bathroom.
Before having her practice the process, I wrote out all of the steps. I told her it seems like a lot, but it’s not that bad when you’re actually doing it:
- Have Ella tilt her wheelchair.
- Unbuckle her.
- Lift her hips and remove her clothing.
- Scoop Ella into your arms (using proper lifting technique!).
- Carry her into the bathroom and place Ella on the toilet.
- After she’s finished and clean, scoop her into your arms.
- Place her back in her wheelchair.
- Lift her hips and put on clothing.
- Buckle her into the wheelchair and fix her shirt.
- Have Ella “un-tilt” her wheelchair.
I demonstrated how the entire process works and then we did it one step at a time. First, I did a step and then she did the same step. Finally, she did the entire process on her own with minimal guidance from me. She did a great job.
It’s important for Ella to get used to other people taking care of her and it’s important for us to let others take care of her. And it’s also important for other people who want to help take care of Ella to get that opportunity.
By the way, the young girl who was trained is also named Ella!
Note: SMA News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of SMA News Today, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.
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