Yesterday, the boys and I ventured into foreign territory - Downtown Phoenix! Oldest gets there more often as he and Steve will go to D-Back games, but the rest of us go only once or twice a year. The boys always comment on just how different it is from Scottsdale; they are so right! We ventured into such a distant land to take part in the Kickoff Rally for the Walk for a Cure, the JDRF fundraiser walk coming up in November.
Lunch was served, and I loved it that the carb count for every part of the meal was accounted for on little table toppers, so the kids could all cover approprately. No one batted an eyelash when I suggested Middle test at the table. The kids compared diagnosis stories (for those who were diagnosed at an age when they would remember) and pumps and meters. It is easy to feel more normal when surrounded by people who do what you do.
Many ideas were shared about ways to gather donations, and there was a feeling of excitement in the room (which, yes, I know, is what a kickoff is supposed to do). Personally, I walked away with 6 new ideas to try this year to help raise money. A cure is getting closer by the day; I follow some manufacturers on Twitter, and can see from their weekly or daily reports that the funding they receive is certainly bringing them closer to a human cure. Many have been able to successfully cure mice already, and just that is HUGE!
And this week has been a very typical example of why this disease needs a cure. I tell people about living with Type-1 Diabetes, and often hear "How do you do it? I could never do that"... well, first of all, yes, you could if it meant the difference between life and death for your child. Trust me, parents can walk over fire if they have to when their child is in danger. Secondly, I think, its just life with a chronic illness. We have good days, and we have bad days.
This week has been rough. We were warned that Puberty, with the Capital P, would wreak havoc on sugar levels. Our Endo alerted us to the fact that the big P is right around the corner, and to buckle our seatbelts, cuz' it's going to be a bumpy ride.. He wasn't kidding! First it was lows we could not shake, so we changed all the pump settings and cut way back in his insulin. Those lows mean alarms going off all night, waking him no fewer than 4 times in the middle of the night to check sugars (Dexie is great, but accurate she is not - more on that later!) and offer sugar when needed.
Then, like day to night, we had highs we could not control, with readings back over 400 and a general unwillingness on his body's part to come DOWN! Always terrified of over-dosing on insulin and seeing a later crash, it was more late nights of watching, waiting, bolusing, waiting some more...
Finally thinking 320 is a perfectly acceptable number to see before you allow your child to go to sleep, finally! Last night it was a little of both - low alarms going off at 3am, so we test, and to find some juice, we reduce his basal rate, and I go back to bed. Oh, and Dexie, his Continuous Glucose Monitor, said he was a 38, which is nearly 911-low, but in reality he was 66, which is still too low, but managable at home. Alarms went off at 4, all was fine; Dexie thought 58 but was 92.
Then at about 5:50, another alarm went off, this time saying he was HIGH, with Dexie thinking 310, when really, he was 205. We test each time, (Middle is really good at basically sleeping through this, which worries me too) set things back on track, and I try to get back to sleep.
This is my normal. This is why I walk..... Please, consider donating your time by joining my walk team, or by donating to our team with money. We are so close... Team name: Matthew's Miracles