by Normally I have a wordy update every few days.
Today I thought I’d try something different, so here’s a video collage from the last week or so. Note I didn’t say anything about it being short. I think it’s about 2 minutes long.
The big things in AJs world this week are continuing to try to adjust his feeds to reduce his gas and spitting up, allowing him to practice his favorite trick of rolling over to his stomach that he’s now remastered post stroke, and hoping that he figures out how to roll back soon. This week his new CPT vest arrived (the clip of him shaking is from that) and he sprung a leak in his gtube and had to have that replaced so now it’s leaking a little again. That aside, just more time training up nurses as we work towards being fully staffed!
Lots of prayers that we get the feeding business sorted out sooner than later. Right now that (and his lack of wanting to go to bed appropriately) are what’s causing us to lose the most amount of sleep and leaving us to worry as we keep a close eye on his weight to make sure he’s doing okay. We have Ferrell bags for feedings arriving shortly and have high hopes that using them will help. Fingers crossed! Until then we are having to manually let the air out of his stomach via his gtube on a regular basis. (Sometimes as often as every 15 minutes or so — and often it’s because some of the super cute noises he likes to make are made by swallowing air… Not much that can be done there!!)
Thank you to everyone for all the continued love and support. It really does mean so much!! Going home was such a huge part of this battle, but it’s nowhere near over yet, and we are still struggling to find a routine.
Also, a huge thank you to everyone who ordered from 31. We were able to get the emergency bags and things we were looking at for AJ. I’m excited for them to arrive and things to start to find their permanent homes as we get ourselves more organized. And a big thank you to Jessica for donating her commissions back to us. They will definitely get put to use. Funny thing is I think we have more expenses now at home than we did when inpatient.
Okay, that’s it for real. So much for a video instead of lengthy text. 😂🙈
