Wednesday, November 18, 2009

All I want for Christmas.....

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.

10 comments:

  1. I could donate 200.00 ( from my son Freddy's Army bonus) for the monitoring system, and promise 50.00 a month ( from my family) for the sensors. Maybe someone else could donate and help out. This would really bless your family and help Ayla be more independent. So get a pay pal account and I will start praying.

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  2. Theresa,
    That is the kindest most unselfish thing ever! I can't let you do it, but please know how touched I am by your generosity. I always try to keep in perspective that it could always be worse, and now just a couple hours ago something happened that will change our lives forever and I don't mean in a good way. I can't even write about it, I'm still too numb. The kids are fine and we will be fine again some day but we're in for some rough times ahead. Thank you so much! You are a wonderful person!

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  3. Jessika, I am praying. You have friends. We may be spread out but we love you and will do what we can to help you.

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  4. Jessika you are surrounded with hugs!
    We would like to donate to the CGMS fund too. Consider it a sale, we will collect creamery goods when we get to Maine. I want for you and Dante to have peace and sleep at night and not have to suffer the unknown--what swing in the BS is coming next. It must be terribly frightening and frustrating for you. Call on us to help, we all know you will help us when we need it.
    Thinking of you all and hoping for a restful night. Hugs

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  5. Please keep us in mind to help you when you are ready. My email is ttaylor 1967 @ cox . net

    Just take out the spaces.

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  6. Jessika, I assume you mean it's not covered by your health insurance - may I ask if you've looked into the Katie Beckett program?

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  7. Yes, Its not covered by insurance and NO, I've never heard of the Katie Beckett program. What is it?

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  8. I'll email you a PDF on Katie Beckett.

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  9. Jessika, I am wanting to beam myself up to Lubec to help you somehow. I too would contribute to a fund for Ayla and a good night's sleep. Please know we all are thinking of you. A big hug.

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  10. Jessika, I am wanting to beam myself up to Lubec to help you somehow. I too would contribute to a fund for Ayla and a good night's sleep. Please know we all are thinking of you. A big hug.

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