Description
We tried a couple of head restraints including one built into the headrest of Steve’s chair. We ran into a couple of issues for him. One issue was comfort. They were made of uncomfortable material or they were too tight. No one wanted his head to explode. This leads to the second issue which was slippage. A head restraint isn’t very helpful if it won’t restrain.
We discussed this with our chair tech Roddy from Apex Mobility. He gave us one of these baby head restraints to try. It worked for us. It is very comfortable, it’s made for babies after all. We like it because it can be tightened but is still elastic enough to be comfortable. It still slips on occasion, but it still holds very well.
I would definitely recommend this option. Eventually, we may need to upgrade to the expensive option, but until then, we will treat my head like a baby.
Luckyiren Head Support for Baby Car Seat, Straps with Pillow Support Band, Neck Relief Headrest for Stroller, Slumber Sling Sleep Positioner for Toddler Infants Child Children Kids
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We are using these stages to help you understand when these tools and apps were most effective for Steve.
EARLY STAGE | July 2021 – November 2022
From first symptoms to the walker
Key points
• No ventilation
• Able to walk without help
• Limited upper limb function
MIDDLE STAGE | November 2022 – August 2023
From walker to power chair
Key points
• Limited ventilation with an NIV
• Help needed to transfer
• Limited upper and lower limb function
• Work transitions
• Supplemental nutrition through feeding tube
LATE STAGE | August 2023 – Current
Power chair
Key points
• 50% to full time ventilation
• From NIV to tracheostomy
• Lift transfers
• Loss of limb function
• Most nutrition through feeding tube
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