Life doesn’t always go as planned! But that’s ok. Sometimes we need to change our plans, and realize that our plans are meant to be changed. And sometimes we just need to take a rest. Join this channel to support what we do, and get perks: youtube.com/channel/… Our Other YouTube channels: ▶️ Our Family’s channel:…
All posts by chris
LESS SEIZURES means I can do THIS!
I never would have thought I would have gotten to do this. Raelynn at times has averaged 8 tonic-clonic seizures per day, even within the last year. So I’m so happy that she’s having so much less! Join this channel to support what we do, and get perks: youtube.com/channel/… Our Other YouTube channels: ▶️ Our…
Helpful things for our medically complex daughter
We’re always on the look out for things that will help Raelynn (and us, as we care for her). Sometimes it’s the little things that help the most! If you have any ideas, leave them in the comments! Join this channel to support what we do, and get perks: youtube.com/channel/… Our Other YouTube channels: ▶️…
Medically Complex Interview after a PACKED day!
I had the privilege of being interviewed by Anna from CP Life! You might have seen my community post about it last week. But if you didn’t yet, go check out the full video on her channel! youtu.be/orCoc8AFvzw Also check out my oldest daughter’s YouTube channel if you like books and words and things! youtube.com/channel/…
Our Quadriplegic Daughter LOVES her NEW CHAIR!
We’ve never had a really comfortable set up for our daughter to sit with us in the family room. But now we do! It’s perfect! Join this channel to support what we do, and get perks: youtube.com/channel/… Our Other YouTube channels: ▶️ Our Family’s channel: youtube.com/smalltow… ▶️ Abby’s channel: youtube.com/NurseAbb… ▶️ Amber’s channel: youtube.com/channel/… ▶️…
Medically Complex Child gets the COVID VACCINE!
Being medically complex, and since Covid is a respiratory virus, Raelynn is particularly at risk when it comes to Covid. So we weight the pros and cons, and decided it was best (and the right time) to give her to Covid vaccine. Go watch more of Abby talk about how much nursing she’s learned from…
A Hard Conversation about Nursing Pay
Sometimes we have to wear different roles as Raelynn’s caregivers. Not only do we put on the roles of parents, nurses, and doctors, we also take on the roles of advocates for Raelynn’s nurses. We want to make sure they are getting the best pay that they can, so that Raelynn will continue to get…
Getting an Oxygen Concentrator for our Daughter
Raelynn recently got an oxygen concentrator because her oxygen level often dips down into the 80’s during the night. We’ve been going through a TON of oxygen tanks. So having an oxygen concentrator in our home will make certain aspects of Raelynn’s care much more streamlined. Of course, we’d love if Raelynn didn’t have oxygen…
Why Does Raelynn Still Have Seizures?
Raelynn has epilepsy. Specifically, she has refractory epilepsy, which simply means that they have not been able to control her seizures through all of the things that they’ve tried, and trying more things likely would not be effective. That being said, Raelynn’s VNS has eliminated a LOT of her seizures. She isn’t have nearly as…
Do AFOs & Casting Help with Her Clubfoot?
Raelynn has Cerebral Palsy, which often comes with things like spasticity and clubfoot. Raelynn wears AFOs to help with that. Raelynn recently had hip surgery, and her legs were casted in an A-frame in order to prevent her from undoing part of her surgery. She was casted all the way down to her toes because…