We promise not to be too overbearing this month but this is a great opportunity to educate and raise awareness. While I had a post on my personal Facebook earlier today noting how much we value our very visible Type 1 tribe, I also want to talk about the invisible aspects of Type 1.
Like the mini fridge that’s in my office with Logan’s insulin and a temperature monitor to alert me if it goes out of range. Logan can’t live without insulin and it’s important to us to protect it from temperature fluctuations.
Like the mountains of supplies we have to obtain from varying suppliers monthly/quarterly and track shipments, incorrect billing, negotiate authorizations and ensure the correct supplies are sent. It’s honestly more work than I ever let on or tell Logan. I want to protect him from that for as long as possible.
Like his medical expenses–instead of a college fund, we are focusing on saving money for medical supplies when he grows up to protect him for insurance/job changes in his younger years. Our medical expenses average $7K-$10K a year so thinking about how much it will be 10 years from now is scary. We are hopeful the advocacy groups will make progress on insulin and supply pricing but for now we can’t count on that and his medical supplies have to be top priority.
Finally (for now), his pain. Sometimes it just hurts. A new sensor can go in badly. He needs an injection due to a bad site. He falls and rams his pump cannula in too hard. This child is active and moves around constantly with “things” attached to him and thrives despite his disease. The picture here is recent. We had a bad bottle of insulin and needed to give him a shot from a good one to avoid DKA. It was very traumatic as he was super high and emotional, and it had to be in his belly which we usually avoid. We always have on our brave faces but sometimes it just hurts.
Thankfully most of the time it doesn’t as it’s just a normal part of our day to day lives. Most of the time he lives his entire life as any other child, he just needs to do a few extra steps to keep himself safe.
Finally, I know some of you have asked for an almost final Fundraising update for our 10 year diaversary goals so here it is–
So far we have raised $1488.00 for Beyond Type 1 (above goal), sent a kid and Logan to Riding on Insulin ski camp (met goal), $2610 for JDRF and $5119 (online classy) for CWD–getting there. We are still fundraising to meet Logan’s goals for JDRF and CWD until November 14th so get in your year end tax deductions and donate today if you are able!