Sunday, August 16, 2015

Another week

As we start another week I realized a few things.  One he was diagnosed (second opinion) a year ago yesterday.  And another is a year ago today Dan was dancing at our baby daughter's wedding.  He was worried about it but was able to do it.  He also stood for an hour while the pictures were being taken.  He was so healthy except for a weak arm and weak leg.  But it was just weak nothing big.
 The daddy/daughter shot. Even having just gotten bad news he was still thrilled to be there with her.
He was so happy to dance with our baby girl.  And she was thrilled to be with him.  We have 2 daughters who aren't married yet who are worried that he won't be at their weddings.  I tell them if they want him there they need to get out there and date! :)
Some days we worry about a lot of things other days we just try to be happy.  But this week we did get a bit of good news.  He doesn't have to take the Lovenox shots anymore.  I am so excited since that was twice a day and it burns.  He was super excited that that was over! For me since I don't like to hurt him I am super excited too!  We went to see the pulmonary doctor this week and found that his breathing hasn't changed much from 49% to 46%.  So he said he doesn't want to see us for 4 months unless we have new problems.  Like if we need a trac. Something he has not decided if he wants to get when the time comes.  He was so sure what he wanted until now and it gets closer so now he is not so sure what he wants.  He wants me to decide but I told him that it is his body and he has to decide.  So he is working on figuring out what he wants.   I believe when it gets even closer he will know and if not we will go with what he decided a while back when he could still talk. 
It gets harder and harder to understand him.  Some days I can't understand about half and other days not even that.  We found out this week that the reason we don't have his communication device is that it wasn't marked urgent.  Turns out ALS patients are supposed to be marked "urgent" so the guy in charge is planning to do that on Monday so we can get it soon.  I hope because these days I can't understand so much and he has so many needs.  I am not sure why but I laugh when he tells me long drawn out sentences.  It just hits my funny bone just right and then he gets really mad.  I feel bad and I am not sure why but I do it any time it is long.  On shorter sentences I do fine as long as I can figure out what we are talking about I can figure the sentence out.  Some times we both get frustrated and he will just say never mind.  Church was great today.  We have so many people who love us and care how he is and actually stop to listen to the answer when they ask how I am.  Some times I feel so broken that I don't know which way is up and other times I am able to learn how to take care of the new problem he has.   Yes this week was hard but I don't see any easy ones in my future.  So I will press forward. 
 Dan a few weeks ago with his sisters.

No comments:

Post a Comment