Taming the wild Trevor requires lots of water. I drove him around this morning, trying desperately to think of something new to do when it is still 100 degrees outside. Anything that came to mind was either too hot, too germy, or takes too much preparation. The mom’s club was meeting at a pizza place with a kids’ play zone but I just could not bring myself to go and face the exposure. Brendan is just getting healthy again and making some progress. I am still worried about our brief library experience and what kind of bugs he picked up.
The only thing I can do when I am out of ideas is to turn on the hose and stand outside and sweat my butt off. (If only that actually worked literally)
During trach care tonight, Brendan kept pulling off his HME and chewing it. So I capped his trach. I didn’t expect he would do as well as he did! He wore it for 45 minutes!!! That is a Brendan record. YAY BRENDAN!!!
He was having his evening power surge I guess, his oxygen is in his hand and he is breathing entirely through his nose/mouth and not through the trach.
We checked him over and over and with NO oxygen attached, he was still sitting at 83%.
He was being extra silly practicing his walking. Even more good news – Trevor tolerated Brendan’s crying, yelling, talking and laughing with only one small bout of sad crying. Maybe he is finally realizing that it is OK for Brendan to have a voice too.
“I’ve got no strings
To hold me down
To make me fret, or make me frown
I had strings
But now I’m free
There are no strings on me”
Unfortunately, his string-freedom was temporary. He gets his feeding tube, Pulse-ox, and vent hooked back up to go to bed. He is on 1.5L of oxygen now on the ventilator to maintain 80% and above. Funny how he needs more oxygen when he has a machine to help him breathe. He has been using 0.5-1.0L on his HME which is where he was before he got sick again. Back to baseline, finally. Time to move FORWARD again. Go go go BRENDAN!!
What a joy to see Brendan doing his silliness. Standing so well and moving forward. Go Lil B Go. Trevor is like me for water. Soon you won’t be so limited in the exciting new things he can get into in cooler weather. Can’t believe October is right around the corner. Hope today is great for all of you.
It is so great to see Brendan totally free from his tubes and breathing with no help whatsoever! The big smiles, standing up so strong and straight…definitely progress. So happy to hear Trevor is getting better at tolerating Brendan’s sounds. 🙂
Trevor is for sure a little water boy! He might be a handful, but all of his antics are so cute to see.
I don’t blame you for avoiding play areas. They are a cess pool of germs. There is no way to protect Trevor from those places. It’s too bad, but a wise decision.
Lots of love and hugs,
Gramma xxxx
Good morning from the East coast!! Would love to frame this blog!! Trevor is adorable. He has so much fun with water!! Brendan!!! You will be totally walking soon!! Happy to hear that Trevor is understanding that Brendan has a voice too! Tiffanie and Bill, again we say, you are amazing parents, guiding your sons each and every day! Big hugs, prayers and much love!! 🙂
Go Brendan, he is jusyso cute unhooked and free of all of his “hookups”. The picture of him standing only touching Bill’s finger shows he is ready to take off on his own. Trevor and the water, to bad it is so hot out or that you don’t have a fenced in yard that he would be safe in. Sorry to hear the heat didn’t take the pounds off, I’d be happy to take some of then, have lost 60 lbs since January and the diagnosis of pancreatic cancer and cannot stop. This too shall pass.
Bless you, Glenna, and thank you for all of your comments, thoughts, and words of encouragement for the boys. You’re a very nice lady! 🙂
If ever there was a reason for doing cartwheels in joyous abandon 😉
today’s blog, with Trevor happily playing in the water and Brendan “unstrung” with that big happy smile, would have to be it !! 🙂 🙂
Can I watch you do that? 😉