Sitting at the car dealership getting the brakes fixed on Lauren’s van. Trying to get everything taken care of ahead of camp, so it’s not such a frantic day Saturday. I’d love to have most of the stuff packed by Friday night, so that Saturday morning we can just get up and shower and eat, and be ready to hit the road stress free.
We always seem to forget little things and I’d love for that not to happen this time. I’m a very forgetful schmuck sometimes, so we will see how this pans out. Lauren has a lot of specific things she needs while being away from home for such a long time and I’m always afraid I will forget something important. She uses a bi-pap machine to breathe at night, and so we need to carry a jug of distilled water with us and I forgot that once before. Oops!
We are lucky that Lauren’s condition still allows her to breathe on her own, but she needs help at night because her body forgets to breathe in her sleep. SMA is a very individual disease. It affects everyone a bit differently. Lauren is way weaker than a lot of people her age with SMA. She can’t move her arms or hands at all, besides a tiny bit of movement of her left hand, thankfully enough to drive her chair and control a small wireless mouse that she uses with an on screen keyboard allowing her to use a computer. Which is SO awesome because it allows her to do her job as a graphic designer for a non-profit organization. A lot of SMA people we know can still lift their arms up a bit and feed themselves, but Lauren hasn’t been able to do this for years. BUT on a good note, her breathing is a lot better than some of her peers. A lot of them have to be on a breathing machine with a trach. So we are happy with what we’ve got.
It amazes me having met a lot of people with SMA and MD, how they learn to adapt to their disabilities. Talk about determination! After a lot of fiddling around and practice, followed by getting the controller on her tray just right, she can sort of use a playstation controller!! So we have been playing chess together! She whooped my ass the other night.
Ok van is done. $614 later. Ugh. Catch you later!
Timothy on Remotecontrolwife? Kurt on Omg it’s tomorrow! Erin Diericx on Omg it’s tomorrow! remotecontrolgf on Coffee savior! Karen Foxgrover on Coffee savior!