Ice Buckets and Updates

We love the ice buckets!  The timing of all of this is amazing.  We are in the middle of a fight with ALS, and all of a sudden there is national awareness of this dreadful disease.  Thank you for all the buckets poured in Les' name.  He is honored by all of them.  So far he has gotten to pour one bucket- -on our neighbor Jeany.  I want to share the following picture.  It's some of Les' best buddies from high school, from Iowa.  They are GOOD friends, they go WAY back....  Kevin Boeve, Steve Kooima, Elmer Boon - well done!

ALS strikes about 2 people in 100,000.  That's about 30,000 in the US with this disease right now.  Of those, about 25% are Bulbar ALS, which is what Les has.  This means the disease starts in the bulbar region, or the neck/throat area.  And of these 25% bulbar onset, about 19% are affected by the vocal cords/folds spasms.  Again, this is what Les has.  We always knew he was unique, right?  Because of his version of this disease, Les' vocal chords are freezing up.  Makes sense, as his first symptom was difficulty singing.  Since his vocal chords are freezing up and his tongue is basically useless, he had trouble breathing.  After two emergency room visits because of breathing, a trach was inserted to ease his breathing.  For an ALS patient to receive a trach is actually not very common.  Nurse Jen at UW told us this is only the 2nd patient she has worked with that has had a trach.

It's been about a week and half since we've been home from the hospital.  Les is doing pretty well.  The trach seems to be healing well.  Our followup appointment with Dr. Verneuil was helpful; Dr. said everything looks great.  Again, I am so thankful that Les is so self sufficient!  He suctions the trach himself, cleans it himself, hooks up his feedings himself.  The biggest adjustment has been getting used to the humidifer machine - it sounds like a generator running!   It's also been an adjustment getting used to breathing and coughing through his throat.  Our friends Rod & Lana dropped off a lift chair for Les and he LOVES it!  He has decided to keep the humidifier set up by that chair in the living room, and if he feels he needs it in the night he moves to sleep in the new chair for awhile. 

Countdown is on for the wedding.  Our first guests have arrived - Les' brother Howard & wife Vicky and my sister Sharon.  We are very excited!  AND praying for good weather since the wedding is in the bride's family yard.  Please pray that Les feels well and is rested for the wedding day.