Wednesday, April 15, 2015

April - 3 Month Check

We had another 3 month check last week at the UW.  As we have said before, we know we won't learn anything new at these appointments.  They pretty much concur that yes, you still have ALS; and yes, you are declining.  We do enjoy seeing Dr. Weiss and Nurse Jen.  They are our friends!!  This visit confirmed our feeling that Les' lungs have deteriorated.  Dr. Weiss feels they are at about 50% capacity, and his diaphragm is weakening.  We suspected this but when you hear it out loud, it is still a bit sobering.  Les is also losing strength in his left arm/hand and his right leg - these have been the stronger limbs.   His neck is also very weak; he can hardly hold his head up.
Smiles for Dr. and Jen!!
We discussed home health care with Dr. and Jen.  We knew that we would need help, sooner rather than later.  Les is not walking at all.  I can still get him up in a standing position, but his legs are pretty weak and shaky - I will not be able to pull him up myself.  Besides that, his care takes a lot of time!  It took me a while to get the hang of this nursing thing, and I feel like we have finally gotten a schedule figured out.  But I always forget how long it takes to do anything, and then we get pressed for time........that's when we may or may not get a little short with each other :)

After conversations with Dr. Steve, nurse Kay, our kids,  some home health nurses and Hospice, we have decided to start a relationship with Hospice.  They take care of EVERYTHING, and their goal is Les' comfort.  After we filled out all the paperwork with our awesome social worker Eden, we were filled with a sense of relief.  It was a big burden off my mind, for sure.  We still have control over how much help we need, and they are willing to do whatever it takes to keep Les comfortable.  We will still need help with getting Les up in the morning and to bed at night; we are working on a schedule for that.

We continue to be blessed by others.  The cleaning fairies made an appearance while we were at UW.  I walk in our back door after a long exhausting day and I smell CLEAN - makes me cry.

These sweet girls, their sister and their mom Tammy cleaned all our flower beds one afternoon:
We received yummy meals from nurse Kay, Val, Lana, Tammy and dear sweet Lu.  Sheri has been bringing fresh chicken eggs!  Baby girl Leslie made one of our favorite casseroles and shared with us.  Our kids help with whatever we ask!!

My sister shared these verses the other day:  "This is what the Lord says:  he who created you, O Jacob, he who formed you, O Israel - Fear not, for I have redeemed you, I have summoned you by name, YOU ARE MINE.  When you pass through the waters, I WILL BE WITH YOU; and when you pass through the rivers, THEY WILL NOT SWEEP OVER YOU.  When you walk through the fire, YOU WILL NOT BE BURNED; the flames will not set you ablaze.  For I am the Lord your God, the Holy One of Israel, your Savior."  Isaiah 43: 1-3


Monday, April 6, 2015

Family Visits

We have had additional family visitors recently.  My sister Becky and her two youngest came for several days--it was her kids' spring break.  Unfortunately, it was the same week that Les' brother Howard and his wife Vicky were here!  Becky stayed with our parents, which was nice for Mom and Dad.  I haven't been able to spend much time with our parents lately.    I didn't see as much of Becky as I would have liked, but I was glad she could hang with Mom and Dad for a few days.

They saw the tulip fields!

Cousin love
 Howard and Vicky stayed with us.  Vicky and their daughter Emily went to a wedding over that weekend but Howard stayed with us to help out.  It was great to have him around.  He got the garage cleaned out for me, he washed the cars, he helped with Les.  He is a good big brother.  'Twas another hard good bye.
I got to go to a friends' wedding since Howard was here to stay with Les the evening of the wedding.  Was such a fun wedding and so good to get out! 

My girls and I!
That Sunday afternoon, cousin Ron took Les, Howard and friend Steve for a drive out and about.  Les though it was so much fun to listen to Ron and Steve talk about the history of this area - they were born and raised here so have lots of knowledge!!  (Why didn't I get a picture of them???)  Thanks also for the sweet friends who brought food while we had visitors - cousin Ruth, neighbor Jayleen, cousin Judy, amazing Lu,  my Mom.  Thinking about/making food is still one thing that escapes my brain.....
Les goes to the UW this week Wednesday for a 3 month check.  Where did the last 3 months go??  We always look forward to this visit and finding out what Dr. Weiss and Nurse Jen have to share with us.   I will give you an update!