April Progress Report

This Wednesday was another 3 month check up for Les.  We can't hardly believe it's been six months since we heard Dr. Weiss say, "I'm quite certain that your symptoms are Progressive Bulbar Palsy, which will lead to ALS".  In some ways it seems like last week, and in some ways it seems like this has been our reality for a very long time.  We have been very busy, which makes the time go fast!

Wednesday we had a different doctor, Dr. Childers.  But, since this is a teaching hospital, we had a resident first and they both did all the same tests :).  They mostly checked his physical strength, which is good and they were pleased with that! Les has noticed a little weakness in his hands but otherwise is doing great physically.  He only lost 2 pounds so they were also pleased with that.   Next was William and the lung test. Again, Les did pretty well.  His lungs are a little weaker but still pretty good capacity.

Next up is speech therapy.  First we talked about Les' loss of speech and the process of getting a speaking machine.  Les has researched this and knows what he would like so we are checking to see what his insurance would cover.  He is using his phone app for speaking more and more but would like something a little more sophisticated.  The speech therapist then did some swallowing tests.  We know of course that this has been more difficult for Les and eating is getting much more difficult.  A swallow test has been ordered to find out what's going on his throat and what kinds of food he should and should not be eating.  We have also given the go ahead for a feeding tube, so we will wait to hear from the GI doctor and will then schedule surgery for putting that in.  We would rather be proactive with this and have it done while Les is still healthy.  It takes him so long to eat; he has starting using the Magic Bullet a lot more.....he throws his whole breakfast plate in there and makes a smoothie :). That is so much easier to eat and doesn't take nearly as long.

Next was the heart test (because of some of his meds) and normally this takes 5 minutes but this time he had to wait an hour. BUT we got a free parking pass out of it.  A very nice nurse :)  Last was the blood draw.  We were so hungry at this point that we actually ate in the cafeteria, and it was very good!  I didn't think I would see my friend Jill this day (she is an RN at UW), but she was in a class right off the cafeteria and when she walked out on a break, there we were!  We got to have a quick chat.  Love that girl.

Since we were in Seattle we hopped over to Virginia Mason to see Kris' friend Matt.  Matt has some liver issues and we were looking forward to seeing him.  BUT he was in a procedure and the nurse told us when he gets back he is sleeping, so all we could do was write a note.  We are not the only ones dealing with serious health issues!!!  We are praying for you Matt.

Waiting for Matt...see our car??

 Les and I were talking about his appointments.  They are really just to manage the disease since there is nothing to be done for this disease.  The UW doctors and nurses want to help Les be as comfortable as possible as we go through the different transitions.  And we are glad for that!  Our prayer requests:  Please pray for our frustration levels to stay low as we deal with Les becoming unable to communicate verbally.  Pray that his insurance company will cover the cost of a DynaVox machine.  Pray that he continues to stay physically strong.  THANK YOU!!!