The Supplies

After Maybel was diagnosed we had to put in some serious effort to find products and ideas to help us live a more normal functioning life. It seems easy but it was a lot of trial and error! Once I found the products I felt were best for her care, I created a spreadsheet to house it all. Even if you are not techy, but someone in your family has medical needs, I highly recommend listing all your supplies in one place. I made a spreadsheet listing all her non-prescription and all her prescription supplies. Listing the item, frequency, quantity, cost, where to get it, etc. This was extremely helpful when you make your first few trips to the pharmacy to get your 20 prescriptions and some of it, isn't covered by insurance, out of stock, or the doctor's office didn't call it in. The list below is her old non-perscription list, old as in it still have some items were for her tubing pump. She's changed to a tubeless pump and we also don't have to treat her with maple syrup anymore. Yeah, you read that right. Maple syrup. It was the only thing, aside from juice that we could use to treat lows in the middle of the night. Luckily we found ways to keep her teeth and mouth clean. She doesn't have any cavities for those wondering! We occasionally use syrup if we don't have anything else in the middle of the night but what else do you try to give an 11-month-old at 3 am? We have evolved and found other foods to treat lows, I will have to save that for another day.

The list below is where I housed her prescription list. This list ended up being the most helpful for doctors. When we switched doctors during our move and then we ended up transferring care once we settled. They had no idea what brands we used and when they sent over her prescriptions, they missed over half. It was a lot of leg work, but it saved me so much time during stressful or difficult situations. I fought to the nail, to get funding from the state to help us with the additional costs in the beginning. It was a lot of change for our family and our budget, all at once. Once we found the products we liked it was less expensive, not wasting our money on trial and error. Even still, it's costly. It is a lot of money - sure, some items aren't life or death, but I consider them a T1D necessity for normalcy. Without these products, we struggle to keep her equipment on during normal childhood activity or day-to-day life.

I won't get too deep on how I feel about insurance and not covering prescriptions for items that are very necessary for her treatment. Even if the items are listed in the insurance formulary, they don't cover the whole cost. I just picked up two prescriptions on Tuesday, her lancets, and test strips to test her blood sugar, items we must have to test her blood glucose regularly. Both items listed on the formulary, are not fully covered and cost us $60 out of pocket. Imagine what it looks like every month for all 18 required prescriptions. Talk about breaking the bank. Another kicker, our insurance doesn't even have all 18 required prescriptions on their formulary. Once of those is $82 out of pocket. They don't offer a store brand. I'm sure I'm preaching to the choir - it's just upsetting that so many families and people go through the wringer for medical care and medications they need to survive and it costs an arm and a leg.

Maybel was getting manual injections for the first 2 months after diagnosis. It was a long road. Manual injections in theory are ok for some folks, but for a tiny growing human - it was incredibly stressful and had so much room for error. She would get a manual injection of insulin every time she ate or drank anything - aside from water. She would get two types of insulin, a long-acting and a short-acting. Sometimes people with type 1 diabetes are prescribed Lantus along (long-acting insulin) with mealtime insulin. This is because Lantus is basal insulin, a “background” insulin that helps control blood sugar levels in between meals or overnight. Humalog is a fast-acting insulin used to control high blood sugar or for food intake. We often adjusted how much insulin she was getting for meals or a correction.

Once Maybel was on a pump, things were easier to manage but still came with their own set of challenges.