A Story of a 3 year old Princess and her diabetes

Wednesday, April 25, 2012


     I have just been LOVING Libby's insulin pump, we have been pumping since November and it has been excellent! We used to give Libby 4-5 insulin shots daily, starting when she was barely 3 years old. Now she has a pump and we change her site every 3 days, no more shots! We still have to do finger pricks, the pump does NOT test her blood sugar for us, and we still have to do between 7-10 pricks per day. And Libby has a serious problem. She is hypo-unaware, which means, she can NOT tell when she has low blood sugar, and therefore can not tell us. They say when the blood sugar reaches 15 that is when brain damage occurs. Libby has frequent lows that unfortunately DO reach the 20-30's. They DO make a device that helps with this. It's called a Continual Glucose Monitor (CGM) and she would wear it, just like her infusion set, it looks like this.

The CGM in on the left, it talks to the pump (on the right) and tells the pump whats going down.
It has a sensor on it that updates her blood Sugar EVERY 5 MINUTES!!!!!!!!! Libby would SIGNIFICANTLY benefit from having one of these! It could save her life. It gets even cooler. This little baby actually has a remote monitoring system. Looks like an alarm clock, goes by my bed, and i can literally roll over in the night and see what her BG is.Uh-may-zing.
This would translate into actual sleep for John and I! Night time is when we worry most, we wake up several times a night to check her bg, usually around 11, 3 am, and 6am again. One or more times a week she will have a low in the night and we will have to sleep-feed her sugar, which can sometimes be really difficult and very scary. Sometimes she just sleeps with us.... :( f we had this little gadget we could avoid low blood sugar totally, she could sleep in her own bed, It would predict her low blood sugar and I could go adjust her basal rate so that low BG would never be reached. Same goes for the highs. We HAVE had an incident where Libby reached a bg of below 29 in the night. She had a seizure and I had to call and ambulance. A Glucagon shot was given and she was taken to the hospital. The ER Doctor there didn't know anything and long story short, he nearly sent her into DKA. We are lucky she didn't have any brain damage. It was a messy situation and if it never happened again, that would be great.
       The stinky sad realty of it all is that our insurance does not deem a CGM as a medically necessary device. I'm very sad about that. So I'm taking donations, yep. Every bit will help. Firstly, we would buy the CGM which is $1100. They don't take payment plans for this part and we just don't have it sitting in our bank account. I sure wish we did! The CGM sensors are $420 per month, which is actually a little cheaper than our test strips so that one we could cover. After we got the CGM, I would be able to get the MySentry Monitor for $2400 and this one they DO have a 12 month payment plan for, which would be tough to swing, but I think we could manage it. I hope I'm not making my blog sound like a Gimme page, but I love my Libby and desperately want the best for her. I have added a Donate button to the top right of the page, and donations of any amount are graciously accepted! We love our Libby Lou and are so excited for a CGM I hope you can help us reach our goal! If you would like to learn more about the Glucose Monitoring System watch the video below. Thanks!

Libby's CGM fund!

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