Is a cure for diabetes. Or maybe just a break from these really scary lows we've been dealing with. The new trend is for her to have no symptoms and then suddenly say she feels weak and before you can even pull out the meter she is toppling over.
Happened again today. I hesitate to even write about this, because it scares my Mom and I'm afraid she'll never take a turn watching Ayla. As much as I believe Dante and I are the best ones to care for Ayla, I have literally had absolutely no relief from her care and I know for my sanity, I really need to step back somehow. Dante can watch her during the day, but it would be amazing for both of us to go somewhere together sometime. It is hard enough and could really take a toll on our marriage. We need to find someway to have " our " time.
It made me so mad, because we are clearly really good candidates for some technology that could be lifesaving for Ayla, BUT we can't get it because it isn't covered. I'm talking about a Continuous Glucose Monitoring System. There are a few different models on the market. Basically she would wear a sensor, that would measure her BG and display it on a monitor screen. From what I've gathered the actual number may lag behind what she really is, but the value in this technology is more about the PREDICTIVE numbers and trends. You get not just a number, like a snapshot, but a number with an arrow that is either level, or pointing up or down predicting what direction she is going in. A BG reading of 120 can be very deceiving with a standard meter. She could be 120 but rapidly dropping, without us having any idea, we could put her to bed, and be awakened 30 minutes later with her seizing and fighting for her life. We've had that exact thing happen twice. You can also set alarms with one of these CGMS, that will sound an alarm if it predicts your going to go low or high. This would be HUGE for me at night. You can see how important this could be for us, and how much it could improve our whole family's quality of life. A lot of times we feel like we are walking around with a loaded gun.
She does have a pump now, and it is gonna be wonderful but we have been having serious lows and are still fine tuning settings. It doesn't help that she is having a growth spurt that makes her numbers unstable as well.
Anyway, I was brought to tears today because I want this technology for her and can't have it simply because we don't make enough money. I think I'm gonna try to fight this and write some letters as soon as I figure out just who to send it too. Even if we could buy the darn device, which I believe is in the $800-$1000 range, the cost of the sensors are prohibitive for us to maintain and you have to insert a new sensor every seven days, give or take a few days.
I'm just thankful we have Ayla, and all our children. I can't imagine life without them. Things can always be worse and am truly thankful. Everything happens for a reason.