Some of you may also know that Jax suffers from Hypoglycaemia Unawareness. This is a condition that can affect diabetics at any time in their lives, but often affects young children with T1D because they are not always as aware of their needs and can be easily distracted. Having Hypoglycaemia Unawareness makes it very hard for Jax to tell us when his blood sugar level is low. And this can put him in very serious danger as low blood sugar can make him susceptible to disorientation, seizure, coma and even death if not caught early enough. This is particularly true for Jax as he also has PDD-NOS (an Autism Spectrum Disorder) which can make it tough for him to recognize his body's needs when he is distracted for any reason.
To top it all off Jax also has a tendency to drop (blood sugar level getting low) in the middle of the night while he is sleeping, and never feels the signals his body should be telling him that would normally wake the diabetic up. Many a sleepless night has been spent threatning to give Jax a Glucagon needle (a fast acting shot of glucose) and a hospital trip should he continue to refuse the juice we are trying to save his life with.
Because the only way for us to know his blood sugar level right now is to test him constantly, low nights = lots and lots of testing:
On the flip side, constantly chasing Jax's lows leads us to often giving him too much sugar and causing him to have high blood sugar. High blood sugar is less dangerous immediately, but can lead to DKA (DiabeticKetoAcidocious) if not treated quickly enough (especially when a diabetic is ill with any sickness at all, including the common cold) which can also lead to coma and/or death. High Blood Sugar is also very dangerous in the long run as it leads to blindness, nerve damage (amputation of the feet and legs), kidney failure, liver failure, more autoimmune disorders and more...
A Continuous Glucose Monitor (CGM) will ALARM us if Jax goes out of range, either high or low blood sugar. It is a devise that tests your blood glucose levels every 5 minutes and charts them. It can tell you if you are trending up or down, and how steeply. It enables you to see patterns and act upon them. This devise would enable us to sleep more soundly, knowing the alarm is there to sound and alert us if Jax's blood sugar goes into the danger zone. This will allow all of us more rest creating a better environment during the day, not only for his diabetes care and management, but for giving Jax as close to the childhood he deserves.
The Dexcom is truly is an amazing piece of machinery that can not only keep Jax safe as well as healthy (as much as we can keep him) but that will allow him as close to a working pancreas as we can offer him. It is the most accurate and comfortable of its kind.
Unfortunately, we cannot financially afford a CGM at the present time. We have done as much research as we can and have spoken to many others who have children (or are) on the pump and have a CGM. Those who have experienced both say that, hands down, if they had to chose they would always pick the CGM over the pump as it gives them peace of mind and helps them manage diabetes better than any other device.
Doctors agree a CGM should be a device all T1D's have working for them.
As the Canadian Government covers most of the cost of a pump we are already on the road to getting that started for Jax, but the government hasn't yet implemented covering the cost of CGM's yet because they are relatively new to the market.
Having four children and living on one salary (so that one of us can always be home to look after Jax's needs because we don't qualify for a Homecare nurse to come into the school to dose him at lunch and snacks) we just cannot afford this much needed devise on our own.
The initial cost of the Dexcom CGM is $1840. Each sensor is then $85 a piece and we are trying to get 12 weeks of sensors to start us off while we save for continued use of the CGM. Our total goal is $2860. Go Fund Me charges us a fee (about $1.50 per $20 donation as we understand it) to use its service so we are asking for $3000 and hoping to come close to what we need.
We understand that many of you are in the same boat financially. We ask that if you can help in any way, even $5, we can make a difference to getting this sweet little boy a little bit closer to living a life many of us have the luxury of taking for granted.
Thank you for taking the time to read this!
Please like and share this page even if you feel you cannot donate. It would mean the world to us.
For more detailed information on CGMs you can visit:
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