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    Traveling with a child is never easy. Traveling with a child in a wheelchair is an extra challenge. The first time Leah flew on an airplane, she was six months old, almost a year before she was diagnosed. We have always been a traveling family and once she was diagnosed, we were both hopeful and determined that it wouldn’t hold us back.

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    This topic contains 3 replies, has 4 voices, and was last updated by  Tracy Odell 4 months ago.

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    • #19374
       Ryan Berhar 
      Keymaster

      Recently, my left ear has been a bit dry and irritated. Last night, I couldn’t really even sleep on it, as it was too painful. I’m guessing this has happened because I lay on it so frequently. Has anyone dealt with this? Is there any sort of lotion or something that fixed it?

    • #19375
       Katie Napiwocki 
      Participant

      Hey, Ryan!  Yes!  I can definitely relate to this.  I get flare-ups of redness, pain and dryness whenever my sleeping position has been consistently exerting too much pressure on the outer curve of my ear. I don’t know of any topical treatment (although I’m sure a healthcare provider could recommend something), but what’s worked for me is repositioning in a way that tilts my head differently to relieve the pressure.  I know sleep positions can be challenging for us with SMA.  I’m not able to lay on my back at all, as my breathing feels too shallow.  Sometimes the strap on my cpap mask irritates my ears, too.  I’ve been told there are special pillows to accommodate masks for cpap & bipap, but I haven’t looked into it yet.  Maybe a different pillow like that could help relieve the pressure?  I hope you can find a solution soon for more restful nights!

    • #19377
       Halsey Blocher 
      Participant

      I think I’ve mentioned this before, but sometimes I roll up a wash cloth or hand towel and wedge the roll between my forehead and pillow to lift some of the weight of my head off of my ear.

    • #19378
       Tracy Odell 
      Participant

      I have used a thin towel rolled into a rolled donut shape so my ear can “float” in its hollow centre, off of the mattress. You will need to experiment with different sizes and thicknesses until you come up with the comfort zone that works for you.

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