Hi Paige -
So far, no one watches Will but me and my husband. We do have a babysitter (she’s a nanny that we use for “date nights”) but I haven’t called her yet to ask if she would like to be trained on taking care of him for us. I just don’t feel comfortable having anyone but us take care of him yet. I’m sure that day will come because, as you know, taking care of someone 24x7 get’s really exhausting.
My mom did come and help me right after Will was diagnosed. She felt comfortable giving the injections (she a retired nurse) but strangely, didn’t feel comfortable taking his BG. My best friend recently visited and she felt comfortable doing both (while I was at home with her) and wouldn’t you know, the one time me and my hubby went out, Will’s BG went up to almost 400!! We don’t know why. Of course, we rushed home only to be told by the endo to just sit tight and let it go down naturally.
The food thing has been the worst for me. Our endo at Stanford (we’re in the bay area) discourages us giving the insulin after the meal so the constant battle of the food is maddening. That’s really one of the reasons I want to go to a pump. I hate the fact that my five year old has to eat his snacks in the other room or before his brother wakes up from his nap so that Will doesn’t see the food and go crazy. Unfortunately can’t even have 5 grams of carbs for a snack if he’s above 100 because 5 grams will shoot him up 100 points!! He’s eating alot of cheese but it just sucks because he sees goldfish and cookies and wants them. I’m looking forward to the day that he’ll eat raw veggies. I’ve been giving them to him and so far, he has absolutely no interest in them.
I’m just learning all the little things about the disease that no one tells you. My new find is that hot weather makes you go low or high??? We went to our neighborhood BBQ for 4th of July and Will was running around, having a blast, he had just eaten and within an hour he went down to 55? The insulin dosage was right - I had him eat what he usually eats for lunch with no issues. Today, it was hot again and he went up 100 points in 45 minutes - hadn’t eaten a thing and his BG went up from 165 to 265. I ended up correcting him at dinner. Anyway, it was a learning experience.
Regarding sitters, if you are in the bay area, there are some kids with Diabetes 1 at the Stanford clinic who are advertising their babysitting - one that I have the flyer for is 14 years old - which is pretty young but could work as a mother’s helper while you are at home. I’m hoping that as we progress through this that we might find some older kids with D1 who might want to babysit.
Sorry to here about the I-Port. We’re considering the OmniPod for William. It’s very small and the infusion set is actually part of the pod - you just press a button and the needle goes in with the catheter and then comes out. I like that’s it’s small and that evenually (it’s in the approval stages with FDA) it will also have a CGM as part of it. I think that in litte kids, the CGM would be great. I test Will about 10 times a day. It’s horrible. He actually sticks his fingers out when I bring out the monitor. He’s very good about it.
Thanks for joining the discussion. I’m sorry to hear about Olivia. I’m not a particularly religious person but have been finding myself praying for a cure and also, strangely, for the researchers and that one of them will come up with something new and wonderful that will help our children and everyone who is touched by this disease.