Ryan had a better night than the previous. Not ideal, by any means, but with less coughing. We gave him a non-medicated nebulizer treatment — with straight saline — right before turning him on to his side for the first part of the night. Around two o’clock he started getting fidgety, so we rolled him on his back. He seemed to get his best rest after four o’clock.

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So I let him sleep in an extra hour and waited until just before seven o’clock to get him out of bed. I nearly always have him up by six. Most days it’s earlier.
It would be oversimplifying it to say every hour matters. Truth is, every minute does. I’m not joking when I tell you that there are not enough of them in the day to get everything in. The math just doesn’t add up. The strange thing is, somehow we get it all done. It defies the physical rules of the universe. I’m scared to think about it much, else Father Time might just take this magic away.
Come this Saturday, it gets even tighter. Ryan begins his monthly HBOT (Hyperbaric Oxygen Treatment) cycle of two sessions of ninety minutes each (three hours a day), eating up roughly twenty percent of his active time. Those thirty days always feel like a pressure cooker, where time is compressed and one glitch will blow the top off the day.
The weekends are so welcomed. I scale back his therapy and allow him more opportunity to rest and recover. I think of these two days as “maintenance” days, where I’m not pushing him to make gains. Days when he simply keeps the status quo and doesn’t lose ground. To me, they are every bit as important to his well-being as the weekdays.
It’s a strange existence. One in which all I have is time, but there’s never enough.
Glad Ryan had a better night. Hope things are better today and into the weekend. Our prayers are with you.
Watching TV tonight and saw an ad for Helping Hands. Saw Kari, Sue, and Ryan : ) Hope you all are having a wonderful evening.
i’m glad Ryan had a better night. I hope what ever was/is causing the coughing will subside. Maybe allergies are kicking in? I hope you, Sue and Ryan have a peaceful weekend. Still here.
Hello Ken,
I hope today has been a good one for you and Ryan so far– trees are starting to really bloom now, we all need the kleenex with aloe in it. Just came in from grilling hot dogs and was thinking about you guys — there’s nothing like being outside in the dusk with the winds blowing and the stars turning on their lights. sighhh okay, just having a moment there, thank God for the opportunity to escape into nature. The evening’s duties are calling, let us commence with our nightly obligations.
Wishing you both a good night of rest and happy dreams.
Sending love, hugs, and prayers without ceasing
Paula
Glad Ryan had a better night. He is always in my prayers and thought right along with his family. I just get over a bout with pneumonia and have no idea how I cought the darn thing. It wasn’t pretty.
Been thinkin’ ’bout you already this morning and glad Ryan’s night was better. Never enough time — wouldn’t it be great if we could give you a few hours like government employees when others run out of leave time benefits?
Always here, but going to pester you today, Kenneth, except to ask if you would kindly run this ad:
WANTED
Steamed Crabs-on-Wheels
500 bushels of *free* #1 Jimmies wanted by fun-loving support group for Crabs on the Patio Party with *FREE* DJ of note and Anheuser–Busch beer truck thrown in. If A~B could trot out their Clydesdale’s pulling that stagecoach, it would add much festivity to our party, especially for the kids, but only if it’s no trouble.
I know — “not” going to pester you and “Clydesdales” — ya see this? I’m affected by the solar flares!
I’m so glad that one of you got to “sleep in” a little today! We know that you and Sue make every minute count for Ryan, and somehow you’ll continue to accomplish everything you need to for him — even this weekend as you lose and hour to Daylight Savings Time. (I hate to be the one to remind you to spring ahead, but there you have it. Sorry!) Love and prayers for you guys always.
Oh no! I didn’t realize this weekend switched to DST.
Ken,I see how true that statement ,not enough hours ,is with everything you have to get in each day. Glad things ease on weekends for you both .Good to hear Ryan didn’t have cough ,but hope tonight he sleeps more peacefully. You take care .Always here. NGA Have a good day ,Ken Love Gail
So glad to hear that Ryan had a better night. I may not comment very often but I do keep up with Ryan everyday and pray for all of you. You are an amazing father! God bless .