-Diagnosed October, 2019. Going on 2 years past my 3-5 year “expiration date”. “God knows the length of my days”.
-Kevin and a nurse change my trach at home once a month, and my feeding tube every 6 months. He’s become quite the proficient medical expert on all-things-trach!
-Such a blessing having Hannah and Jon and sweet grand babies live within walking distance. Their frequent visits and the kid’s fun antics are bright spots in my days. Hannah is able to get paid for being one of my nurses and helps with my care 1-2 half days a week.
-I’ve appreciated the guest blogs by my two daughters, husband and sister over last several months, but feel unworthy of some of the kind, generous words they shared about me.
-As you may know our nights are very disrupted with my needs for trach suctioning or positioning changes. I would guess our average sleep is about 6 hours between maybe 7 disruptions. The wakeful moments are sometimes much more, occasionally a little less.
-Nathan and Daniela surprised us and came up from Texas for both Mother’s Day and Father’s Day. Always so great being all together!
-Lately I have been wearing a rag over my mouth all the time. It looks awkward, but helps so much to absorb my incessant drooling and save caregivers from having to constantly suction my mouth. I also can’t really close my mouth anymore and my tongue sticks out so it probably looks better with the rag than without. I miss smiling!
-My blogs are my own personal, original writing. (I’ve only used AI once to help with some closing thoughts on one post). I’m sure my writing would be more polished with using AI, but I like to keep them really “me”!
-Our two youngest two, Bethany and Micah, recently went on a two week mission trip to Kenya. We greatly missed them, but so thankful that God blessed and they had an incredible trip!
-Our beloved nurse, Harlie, is leaving us. Sigh. We are so sad, but trusting that Jesus will supply our need and bless her next chapter. So thankful for the 1 1/2 years we were blessed to have her.
-One of the things I miss most is going on dates and weekend outings with Kevin. Although we did have a hot date (was probably 90 outside!) with just the two of us recently to a doctor’s appointment and even splurged on the way home and went through a car wash together! Dates are nothing like they used to be, but so very thankful we still have each other and we’re still doing life together!
-We’re having a Neall family reunion here in Arkansas in a couple weeks. There will be about 40 of us and will be renting rooms in the college men’s dorm. A great AirBnB! As it’s difficult to travel I’m grateful for my families’ willingness to do the driving so that I can still be part of things, but sleep in my own bed!
-One of my biggest pet peeves is when I’m by myself and a fly or gnat decides to land on my face! Can you imagine not being able to swat a fly away! My urgent appeal when I call my family to rescue me is: “Fly alert. kill it, murder it, annihilate it!” No tolerance around here for pesky insects!
-Thank you for the many prayers for me and my eyes. They are dry, sometimes blurry, my blink is weaker, but still functioning, questionably maybe about the same. PTL! Checking into getting special contacts, called scleral lenses, that would provide continual hydration and several with ALS have found helpful. Keep praying!
-“It is of the Lord’s mercies that we are not consumed, because His compassions fail not. They are new every morning: great is thy faithfulness.” Lamentations 3: 22, 23 God is still good!
Leave a Reply