Tuesday, August 18, 2015

Some weeks are so busy!

This week is crazy busy! On Monday we had a 9 am appointment an hour away.  So we were up at 7 and Dan was exhausted all day. But we saw the VA ALS doctor.  WOW that was a lot of initials.  VA is the Veterans Affairs out at the Veterans Hospital and of course you know what ALS is or at least you have a pretty good idea by now! He also see patients at KU (Kansas University) So he just signed on there website as a doctor and read what Dr Jeffrey Statland had written.  I just want to add here that Dr Statland is one of the best in America.  He specializes in ALS and does a great job.  He is so calm and sweet and will answer any question and you can ask him anything.  You can even send him an email and he will get right back to you.  He is wonderful! So back to the VA doctor story.  I can't even say his name! So when he introduces himself I was trying to hard to hear how he says it that I missed whatever he said until we got to his office.  Anyway he just looked up what Dr Statland had said and then just did a couple of other test and called it done.  Then he asked was there anything he could get us that we didn't already have.  I asked "like what".  So he listed some things and we already had everything he could have given us. and we had on order the last thing the VA can give us.  That was kind of nice.  I wonder if we have to keep going out there now that we have everything? 
    Late yesterday *Monday in case it takes me a long time to finish this one!  we got a phone call telling us that Dan's communication device is in.  They said we could come at 10am today and pick it up so of course we went and back out to the VA we headed. So we had to get up early again and head out.  So tonight Dan was trying to work with it and failing because he was so tired he couldn't hold his head up.  He went to bed pretty frustrated! I would say that he will have better luck tomorrow but we are heading to the Urologist in the morning. He is hoping to get his catheter out but I am not counting on it.  All our ALS medical people are not even surprised that his bladder could have stopped working right.  I guess we will know more tomorrow. 
     Believe it not I am in the Living Room without him.  That is a miracle! He really doesn't like me to be away from him while he is sleeping.  He is afraid that he will choke and no one will be there to help him.

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