Friends

Heather, Marci, Carla and Judy came for lunch on Wednesday.  I love these gals; they brought me flowers, candy, and lunch.  I love that they came to visit me and really brightened my day!

I went shopping with Laura and Jenny on Thursday. We went to H&M at the Fashion Place mall.

And Elise took me to a movie on Friday!

It's been a good week!

It's all good!

New Bed

Rich has been offering to buy me a new bed ever since I got sick.  A bed that moves up and down.  I finally relented and I love my new bed.  It moves up and down and does massage.  I'm so much more comfortable than before with a flat bed.  We took these pictures when Mary came down to visit.

 Jenny and Mary showing off the bed

All of us

Jenny's Birthday at the Cabin

 Hillary, Laura, Janet, Jenny

We celebrated Jenny's birthday at the cabin.  

I did it!

I learned how to feed myself through the tube!  I'm so glad because I don't have to count on other people to do it for me.  I like being independent!

From My Valentine

My Valentine

My Valentine and I have been together for 35 years.  Since I got ALS  he has been my rock.  He's kind and loving and serving me all the time.  He has always been a good provider, but now he makes phone calls for me (something I've always done in our relationship) and serves me in more ways than I can name.  He tucks me in at night after putting my bipap machine on and praying with me.  He is always the voice in those prayers since I can't talk any more.  He feeds me and puts water in my feeding tube and generally just takes care of me, more than I deserve.  I'm sorry that he has had to become my caregiver, but I'm so grateful that he does it with loving kindness.

PEG

On Monday I was the proud recipient of a PEG feeding tube. PEG stands for percutaneous endoscopic gastrostomy. Basically it's a feeding tube in my stomach.  The doctor put a scope down my mouth and punches through from the inside, thank goodness, I had IV sedation!  The good news is that it allows me to get plenty of water without choking.  I can also do food (it's a baby-type formula that comes in cans). Unfortunately, with my weak hands I can't really do it by myself.  My daughters and husband have learned how to do it and they are so kind to help me. I've spent the last week recuperating from the surgery and the subsequent gas pains (they fill you with gas to do the procedure). I can still eat the normal way which is good.  For the curious among you, here's what it looks like.

from the inside

this tube hangs down but eventually I can change it for a flat button type one.

Happy Birthday, Alan!

Happy birthday to my son-in-law, Alan.  He's living in both Harlem and Provo.  He's doing this because of me.  When Laura found out about my ALS, she wanted to move here.  And Alan's has been so supportive and they moved here in December. They uprooted their little family to be with me.  Laura lives four days a week as a single parent and Alan travels to and from New York every week.  Words cannot express my gratitude to them for doing this so that I can enjoy the grandkids and Laura and Alan close by. And we got to have Korean food with them last night to celebrate Alan's birthday.

I just love this picture of a periwinkle path!