A digital camera and video have been so vital to us since Getty’s diagnosis. I would hate to think what we could have missed without capturing some really incredible moments. Had Getty been a healthy child and hitting the usual milestones I have a feeling that every flicker of a finger, every smirk would have been in a way overlooked because I would know that there would be more to come. Or heaven forbid I might not have even noticed the rotation of a wrist because that is “normal”.
Tuesday, Getty got her annual immunizations and since then she hasn’t been feeling her usual spunky self. Her oxygen levels are lower and so we are just watching her a lot more closely. A child with SMA is an intense experience. Both physically and emotionally. Their care is 110% if it were possible. So when her O2 sats dropped into the lower 90’s we started getting into trouble shooting mode. Constant vigil due to the fact that anything can change in a moment and then you need to make some decisions. Do you handle things at home and try to remedy the situation or is this situation greater than us and now we need to allow Getty to be in the hands of professionals that don’t know much about SMA? Scary to say the least.
After a lot of diligence and care as of tonight, Getty’s O2 levels are slowly coming back up and her spunky self is started to surface.
It is Friday night and Mark and I are pooped. I am sure some people out there are enjoying a Friday night out and about with a loved one. Perhaps sneaking out for some couple time away from their little bambino. I am envious, but not jealous. I only ask one thing, “could you do me a favor and have a beer for us?” 🙂 Just one, thank you.
So this week while we have been monitoring Getty, I have pulled out the camera several times and video a couple of times to capture special moments.
Yesterday Grammie came over and spent some precious moments with Getty. Thank you Mom for coming over and 1) Bringing dinner and 2) Giving me a short break so I could just do some normal things. I actually enjoyed sweeping the floor, cleaning the bathroom, and doing a bit of laundry. There is something therapeutic in doing household chores. It gave me a chance to clear my mind and to concentrate on some else besides Getty for only moment, but it was enough to kind of recharge. While I was cleaning I was hearing all kinds of giggles coming from our room so I grabbed the video to make sure I didn’t miss a thing. Getty sure loves a good dose of Grammie. I love you Mom!
When I was a kid, I always seemed to wake up early on special occasions. Christmas, Easter, etc. once I was up, well everyone needed to be. Getty has certainly taken after her mama. Mark has been working very hard on a case all week and adding to that has been helping care for Getty. He took a very quick nap to rejuvenate. Little Miss Getty was also sleeping along side of him. She woke up shortly after and wanted to get going. So her next plan of attack was to wake daddy up as well. I felt bad for Mark because his nap was cut short, but it was so darn cute to watch her wake him in such a forceful way. 🙂
The video is kind of dark, but her sweet little right hand is holding some of her birthday balloons and she is beating her daddy with them, and I think she is saying, “Dad, Dad, Dad, wake up!”
I hope everyone has a very special Easter. Getty’s Easter basket is all ready to go and we can’t wait to celebrate with her. We are truly blessed.