I woke up late today. That is not good as it takes a while to get mare up and dressed and out the door. It was an ALS clinic day. We were suppose to be in seattle at 1130. We were a little late. When we go to Virginia Mason to the ALS clinic, it is a well oiled machine. They put her in a room and all the specialists come to see her. We saw a nutritionist and they want mare to start using the feeding tube for some of her nutrition. She sleeps so much it is difficult for her to get enough fuel for the day. She is down to 116 pounds. Respiratory was next. The dreaded lung capacity tests. We knew it would not be good. We have noticed a marked difference in the last few days. The tests bore that out. 6 weeks ago at her last apptmt, she was at 28% capacity, today the tests showed her to be at 14% :( Dr ravits the als specialist came in next and encouraged mare to stay on the bipap machine as much as she wants. That machine pushes air into mare's lungs according to her needs. When she is not on it, it is obvious she is laboring to breathe. The big thing they are going to help us with is to get mare a battery for her bipap machine so she can travel with it. Appaently it is not easy. The chair company doesnt help as they dont want the liability and the same for the bipap folks. We finished there and said goodbye to Gina, Rick and the girls as they headed back to oregon. It is quiet here tonight and i miss them. After we said goodbye we headed straight to Dicks in seattle for burgers. I love that place.
Tonight i was watching videos that were recovered from my damaged laptop. I watched clips from the benefit tennis tourney for John Carl and Marilyn. I saw Marilyn walking, hugging me and she looked so good. I so much miss her hugging me. It made me miss what we use to have. Our life is so different now. It was painful. Lynn Walker was watching with me and said as painful as it is, i will be glad to have that in the future.
Lauren got home safe and will see us tomorrow and tell us nothing as what happens in Vegas...... We are scheduled to have family time for the next few days with no visitors. Marilyn is sitting watching the M's with her lap dog saddie comfortably in her lap where she should be. May Mare have a restful and peaceful sleep.
Subscribe to:
Post Comments (Atom)
Thanks for keeping us updated Jeff. It makes me sad to read about the decline but am thankful you are sharing the day to day events so we can feel a part of this. You are so lucky to have each other! You have a huge cheering team "army" behind you all and many prayer warriors.
ReplyDeleteBless the 4 of you as you gather quietly these next few days. With love, Kathy Larson
I appreciate this blog so much, your in my prayers daily. This is so incredibly sad, and I'm amazed at how stong Marilyn is thru this whole thing! You'll have wonderful memories for years to come, your children will always be a reminder of the love you share and will continue to share. Hold each other up!
ReplyDeleteLove to all of you
Laurie Sharp