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August 22, 2018
I’ve decided I dislike this site. I have now had 2 posts mysteriously disappear. It’s very frustrating because I pour my soul (sometimes an overshare and sometimes gibberish) into these posts and then somehow they don’t show up on my site. Customer service basically told me that their app sucks and not to post using it. To write it in word and post it in my browser and not the app. —>terrible review coming from their own employees. I will say though that the first time I contacted them about this the woman instantly said she and all of her coworkers had been reading my story and had me and Maxley in their prayers, very sweet! Weird to think that employees of caringbridge, read caringbride. I must be good that pathetic.
As you caught on to, yesterday’s post “mysteriously” vanished. If you said you could pay me $100 to come up with any percent of what I wrote yesterday, I couldn’t. I write and blab and then go to bed and then the day is forgotten. Days turn into weeks and week blur together living here to its impossible to recount specific days. I do remember that yesterday Maxley got his first massage, before I ever got one I might add. He loved it and cooed and stared up at her the whole time.
Today, he was able to get taken off of his glucose meds completely and hopefully for good. They added another diuretic because he gained 230 grams last night, that’s way too much and way too scary. He is so bloated. That seems to be helping a little but he slept most the day and still isn’t himself. He was awake a tiny bit tonight and pretty content so we hope he is coming back to himself. This stuff all set us back weeks because we haven’t been able to bottle with him hardly at all. It’s hard. It’s hard to feel like we have ONLY gone backwards here. People say all the time how hard or frustrating it is to be here so you think you will be prepared but it’s harder that you can prepare for.
I’m tired. Tired of the beeping, tired of dealing with staff people the second I get home from work, tired of the beeping, tired of parking in a parking garage, tired of the cords, did I mention the beeping?
I am so tired I can’t even remember what else my mom told me happened today so I will leave it at that. Thank you to everyone who continues to read my rambles everyday, and for everyone who told me today that they missed my post last night. It makes me feel special, feel loved and feel needed.
As you caught on to, yesterday’s post “mysteriously” vanished. If you said you could pay me $100 to come up with any percent of what I wrote yesterday, I couldn’t. I write and blab and then go to bed and then the day is forgotten. Days turn into weeks and week blur together living here to its impossible to recount specific days. I do remember that yesterday Maxley got his first massage, before I ever got one I might add. He loved it and cooed and stared up at her the whole time.
Today, he was able to get taken off of his glucose meds completely and hopefully for good. They added another diuretic because he gained 230 grams last night, that’s way too much and way too scary. He is so bloated. That seems to be helping a little but he slept most the day and still isn’t himself. He was awake a tiny bit tonight and pretty content so we hope he is coming back to himself. This stuff all set us back weeks because we haven’t been able to bottle with him hardly at all. It’s hard. It’s hard to feel like we have ONLY gone backwards here. People say all the time how hard or frustrating it is to be here so you think you will be prepared but it’s harder that you can prepare for.
I’m tired. Tired of the beeping, tired of dealing with staff people the second I get home from work, tired of the beeping, tired of parking in a parking garage, tired of the cords, did I mention the beeping?
I am so tired I can’t even remember what else my mom told me happened today so I will leave it at that. Thank you to everyone who continues to read my rambles everyday, and for everyone who told me today that they missed my post last night. It makes me feel special, feel loved and feel needed.