New Developments

A quick update on the Botox.  It's working great - Les has hardly any saliva.

The not so great part?  He can't swallow anything.  Not even a sip of water.  When he swallows anything he has awful choking spells.  We are thinking it's the Botox; we were told that was a possibility.  SO Les has about 6 weeks to decide which option he would prefer--lots of saliva, or no swallowing.  What a choice, eh??

He is currently getting ALL his nutrition and water through his feeding tube.  He misses eating - even his blended foods!  He misses the taste.  I suggested he just chew food up and then spit it out.  We'll see.  He's taking in 5 or 6 cans of his nutrition a day.  These feedings take awhile, about an hour each session (which is usually 2 cans).

Also an update on the Dynavox speech machine.  Not sure if I ever blogged about all the problems we were having with it.  I spent HOURS on the phone as the go between between Les and the Dynavox people.  We think it was a lemon!  They finally approved a call tag and had UPS pick it back up.  We didn't hear anything from them for several days.  And then last week a brand new Dynavox showed up with the UPS man!!  Les is happy to have it back.  He was pretty good with  using just his phone app which spoke his texts, but the machine is much nicer.  Plus the internet is on it, so it's like an iPad.

Les also received his BiPap machine, which he wears when sleeping.  I think he is sleeping much better.  It's a quiet machine, so it doesn't bother me.  And today Les received a cough assist machine.  He requested it yesterday after having a horrible choking spell.  He can't swallow at all, and had burped up what he thought was acid reflux and he just couldn't get rid of it.  We called Jen at UW and she suggested the cough assist.  Les doesn't need it all the time since he still has about 70% lung capacity, but in those situations we hope it helps.   All kinds of fun new toys at our house!

I need to give a shout out to Les.  Even without being able to speak at all, he continues to run errands for me.  He goes to the grocery store, gets gas in my car - whatever needs to be done.  If I were in his shoes, I don't think I would do that.  Pretty sure I would stay at home and not go anywhere!!  I greatly admire him for getting out in the world and being as normal as possible.