Wednesday, September 16, 2009

Tuesday September 15th

Thanks to my two night angels, i slept again last night. I am so amazed so many people are willing to give up so much time to help us.
Ok so this lady below is Lisa our neighbor who loves mare and was going to punch me after yesterdays picture. She is not that wierd.
Mare cried again today. Not because she cant use her right hand. This time tears of joy. We got to watch Laurens video of her talking about her mom and then singing you lift me up at the scholarship contest. Lauren is a pretty strong girl. She holds it together pretty well but even she was not as composed as she normally is. I loved the look on mares face as she watched it.

As composed as my lauren is, even she recognizes the need for more support at her new school. She has some terrific roommates who are very supportive but she was at school reading and praying for more friends who she can lean on along this journey. She had some young lady come up and ask her if she was lauren leer?? If i have the story right, turns out this girls mom works with laurens best friends mom in bham. The two moms starting talking about stuff and laurens friends mom shared the story of Mare and her lauren down at Northwest U. The mom tells her daughter at NW and together, they have been praying for our family for two weeks. She made a genuine gesture to Lauren that she wants to be there for her. Pretty cool!

We got some bad news that our hospice nurse is changing positions within hospice and we will not have her anymore :( We meet the new nurse on Thur.

I started dripping the food into mares tube yesterday. It was actually kind of cool. It goes in over a longer period of time than just pushing it directly into the tube and is easier for mare. What is not getting easier is her breathing. She is complaining more and more of not being able to breath even on the Avaps unit. It actually shut down yesterday. Apparently, mare was not able to breathe and an alarm went off and it would not work. Having dealt with this the other day, we quickly got out the other machine while the rest in the room comforted mare and we got her breathing again. Turning off the power source reboot the machine and it has been working since. I called the supplier and he said if she is not able to breathe on this machine, the next step is the ventilator. I explained to him we are not going that route.

Every day is so surreal. We dont want to lose her but we dont want her to suffer either. Your emotions get played hard. You cant help but wonder, is this the day? And then she makes it through another. A week ago, we thought she would go. A week later she is still here. To say she is a fighter would be an understatement. Most of her family went in 12-14 months. Mare just started her 21st month since symptoms. Seems like 21 years.

When the football team wore the shirts (see last weekends blog) that told her to fight ALS. She took them up on their challenge.

May mare have a restful and peaceful sleep.


  1. Jeff, Thank you for sharing this very private time in your lives with all of us. I so enjoyed my visit yesterday. The video you showed us of your daughter Lauren was hands down awesome. She is such a talented singer. Please remember to post it here so all of us may enjoy it again. Thank you, Jill (formerly from the clinic)

  2. Can you post the video of Lauren? I would love to see it!


  3. Jeff, please give Marilyn my love...this disease that plagues our family stinks! I sent that article to the neurologist at the U of W that followed my mom and sister's journey....I am anxious to hear back from him. I will let you know....Hugs to you are all in my thoughts many times everyday....