The endless todo list shortens v4.0

[JohnHMich]

It has been about three months. The big change is that we had the door to the first floor powder room widened and replaced with a barn door. This makes it a straight shot into the bathroom and easy for caregivers to maneuver. We also replaced the sink with a wall mount so the wheelchair fits under it. Still no vent during the day. Swallowing like a champ. The right hand grip and her voice are flagging. I think we will be feeding her in the next month or so. The speech therapist mentioned an eye gaze device, but I don't know when that will go into use. And we are still waiting to hear about the PEG.

 

[Nikki J]

Sounds like you are doing a great job. I would be checking about the PEG - the earlier the better if she wants it.

also follow up on eyegaze. The sooner she has it and starts practicing the easier it will be when it is her main communication mode. Also speech can go from manageable to virtually impossible to understand without a lot of warning. You don’t want to get caught without your best tools Good luck

 

[affected]

Nikki makes the best points - with anything, being a little, even a lot, ahead can make all the difference.
Getting a PEG before losing weight and having awful choking episodes can make a huge difference to quality of life. Also just recovering from the procedure.
Learning to use eye gaze equipment takes time, patience and lots of practice. It is so much easier to put this time in while still able to communicate without it and feel really confident when things start to really get hard. Finding you can't communicate and need to learn a whole new technology can be overwhelming and frustrating, take longer, and become more exhausting.

However, the first point really is that you are doing an amazing job and the modifications sound fantastic for making life easier, so you know you can tackle these next items on that looooooooong list and soon be slashing them off.

 

[JohnHMich]

Thanks all. In truth, the todo list is no longer endless. There are a couple more options to get in play, and then we will be running with the systems and tools we have. Part of the PEG delay is she wants to do a trip to Europe while she can still be off the vent.

 

[affected]

But she would be far better to have the peg before the trip as then she is ahead of any issues and can easily be hydrated and full of calories. Having a peg inserted (well a RIG really) wouldn't impact being on or off a vent?

 

[affected]

Oh and I'm thrilled there is an end in sight to the list, but shhhhh don't say that too loudly ... 🤭🤫🤣

 

[lgg]

We went to Europe and had a trip that we remembered forever. Have fun. Leslie

 

[JohnHMich]

Her docs seem to be agreed that it can wait. Her body weight has been steady and the speech person thought her swallow mechanics were good for the trip. Her hand gets tired eating, so I have been cutting things up consistently now.