Message From Kathy -

On Wednesday January 17, 2007, Courtney drove me up to Seattle and we stopped at Jay's shop so he could drive us to Virginia Mason Hospital and then my car would stay in the shop.

We saw the respiratory lady who tested my breathing.  My numbers went down to 36 or 35.   Which if the numbers goes below 50 then they worry about it.  She told us that when we were done the team would make decisions.

Jay stopped by.

Mary from ALS talked to us about insurance and what the ALS group would cover 96 hours of respite care for the year.  So I am looking to get it.

We had a little break.  Jay stayed with me.  Court went down to bring back something to eat.  Jay left after she got back.

Then we saw speech and nutrition.  Speech was concerned about getting my Dynavox (the machine that will say what I type.)  Jay has a lot of trouble hearing any of the voices.  So I haven't used it much.  I write down what I want to say.  Nutrition was concerned because I have lost so much weight.  They don't want us to lose weight.  But I told them I am now at my goal weight.  But instead of losing fat I lost more muscles.  We were wrapping up and we heard THIS IS THE SEATTLE FIRE DEPARTMENT AND EVERYONE NEEDS TO EVACUTE AS THERE IS A CAR FIRE IN THE GARAGE.   We picked up our stuff and we went out to the hall. 

I was in a wheelchair and it was our first time out in the wheelchair.  The evacuation was a mess.  It seemed they didn't know what to do with us in wheelchairs.  However, Mary showed up and an elevator opened and four of us got in.  I was in a manual chair and the other lady was in an electric chair; her husband was with her and Court was with me.   Then we had to get off at the floor for the sky bridge was.  Then it got real smoky.  Then we got into another elevator and it took us to the lobby.  So Court pushed me as fast as she could.  We got outside and then she pushed me up the hill for 2-3 blocks and Mary showed up again.  When we stopped Court called Dad and he called Pat who drove my car to get us.  We were so cold I turned the heat up.  I heard from Jay that Pat was very hot but he didn't want to say anything.  If he would have we could have turned his side off.

We went home.

Friday, January 19, 2007, we returned.  First we saw PT and we went over my neck brace which was too high so they gave me a lower one.  I had just told them it was Jay's birthday and I asked if they would sing Happy Birthday for him.  He walked in right when she was reading my note.  So the three of them sang him.  Then they showed me how to get up from the floor.  Not that I could do it.  But we also talked about Life Alert so I will look into that.

Then we met with Dr. Ravitz and a resident.  Dr. R explained to the resident what ALS does while he used me as his project.  Then he answered our questions.  He told us that I had bulbar symptoms (my speech, swallowing and now my mouth won't open very far) and he told us that I was progressing fast and I broke down. 

My heart is breaking because I probably won't be able to see Courtney get married.  As most mom and daughters we talked about what she wanted at her wedding and the wedding dress she wants.   After she got home after going to a wedding once, she told me she wanted a wedding like that one except she didn't want the ice sculpture.   We laughed so hard.  Courtney and I have been very close and we still have close moments.  I love her so much I want her to be happy and that she could have the wedding of her dreams.

I am very happy with Corey and his fiancée Keri.  They make a wonderful couple.  They are counting down the days till March 3, 2007.  He will look very handsome on his wedding day!

I wish all the folks that read this to have a very happy and healthy life.  Love, Kathy