Kelsey & Co.: Questions and Answers

We have been asked a lot of questions these last few weeks by friends, family, and neighbors. Here are some of the more frequently asked questions and the best answers I can give at this time with our limited experience and knowledge:

What is Type 1 Diabetes and how do you get it?

Type 1 diabetes is the result of an autoimmune process. Your body's immune system, which is responsible for protecting your body from invading illness, attacks your own healthy tissue by mistake. With Type 1, the autoimmune process attacks the pancreas (specifically the beta cells of the pancreas which produce insulin), damaging it so it can't produce enough insulin.

There are no answers for what starts the autoimmune process in the first place, but studies show there are two factors that seem to play a role in determining who gets type 1:

Genetics- People with Type 1 are more likely to have inherited certain genes that make them vulnerable to the disease.

Environment- Something sets off, or triggers the autoimmune process in a person with a genetic tendency toward diabetes. The trigger could be a virus, a chemical, stress, or something else. What you eat, how much you exercise has nothing to do with the development of Type 1.

How did you know to take Porter to the doctor? What were his symptoms?

Porter woke up two nights in a row needing to use the restroom and feeling very thirsty. It's not unusual for Porter to wake in the night, being our lightest sleeper. We were very busy that week with Christmas activities and packing for our trip to California, so the first night I didn't think too much about it, but when it happened a second night I had a sinking feeling that something was wrong, and that I needed to take him to our pediatrician.

Does he have to have shots? How many?

Porter normally has four injections a day. One before each meal and an extra one in the morning. The extra one in the morning is a long-acting insulin called Lantus, while the shots before meals are the short-acting insulin, we use NovoLog. We rotate the injections on different parts of the body to prevent the build up of scar tissue.

We also check his blood glucose 6-8 times a day depending on his activities, this includes a 2am check that we will do until his levels are more predictable. This is done with a needle stick in the finger. Our goal is to keep his blood sugars within a healthy target range for his age. If he's too high, we correct it at meal times with extra insulin, or a "correction dose". If he's too low we give him a 15 gram carb snack like a juice or fruit leather and check him again 15 minutes later to make sure he's back up to where he should be.

Can he eat sugar?

Yes. His diet is not limited, he can enjoy sweets and treats like others, he just needs to receive insulin for the carbs/sugars he consumes. We have noticed though that when he consumes something that has a large fat/sugar combo his blood glucose seems to go much higher than we'd like, even with the proper amount of insulin... so those items we do limit with smaller portions (for our whole family), which is actually a healthier way to eat treats anyway. We were healthy eaters before this experience (lots of veggies, whole grains, eating organic when possible, and avoiding processed foods), so eating healthy has already been part of Porter's life, making this transition a bit easier.

What is the process for meal time?

15 or 20 minutes before dinner we check his blood glucose with the needle and meter. We talk about how hungry he is and how much food he thinks he will eat. Then we count the carbohydrates for the foods he will be eating and give him an insulin injection for those carbs. He can continue to eat the same foods and snacks as he did before, only now because his body is not producing the needed insulin to break down the sugars that come from the carbohydrates he eats, we need to give him insulin through injections. If he chooses to have a carb snack between meals he would just need another injection for that snack. Right now he prefers just to snack on no or low carb snacks to avoid any extra injections.

Extra explanation:

In a person without diabetes- Your body breaks down the food you eat into glucose. Glucose is a type of sugar that is your body's main source of energy. Glucose from food goes into your bloodstream. Your blood glucose (the amount of sugar in your blood) begins to rise. As your blood glucose rises, your pancreas responds by releasing a hormone called insulin. Insulin allows glucose to cross out of your bloodstream and go into your body's cells- it's like a key that "unlocks" the cells. Once glucose gets in your cells, it's used for energy. Your liver also stores glucose from your bloodstream and releases it when your cells need fuel (like if you haven't eaten in awhile). When you have eaten however, insulin blocks this release of glucose from your liver.

In a person with Type 1- Your body still breaks down the food you eat into glucose. The problem is that your body doesn't have the insulin "key" to move the glucose from your bloodstream into your cells. Unused glucose from the food you eat builds up in your bloodstream. Your liver then releases even more glucose because your cells aren't getting the fuel they need. So your cells are starved for energy and your blood glucose is too high.

Will he have diabetes his whole life?

Yes, unless a cure is found. Unlike Type 2, with Type 1 you can't reverse it or maintain it with diet and exercise.

How are you guys doing? How's Porter doing?

The social worker who came to visit us in the hospital said that a lot of families question why. Why did this happen to our child? Our family? Though I do understand those feelings, we have never felt that way. We know that our Father in Heaven knows and loves our family. We know that He knows and loves Porter, and for whatever reasons this has been given to him, to us. And though we may not know the specific reasons at this time, we do know that trials, hard things, are given to us as a gift.... an opportunity for learning and growth. I have felt over and over these last few weeks... oh how I wish I could take this from my little boy. I wish I could have the type 1 and he could be free of it. But then I'm reminded that there is a plan for his life and this is part of it. And it will bring tears at times and frustration, but I know there will be blessings and experiences related to this disease that he's meant to have, that we as a family were meant to have.

While the injections are difficult for him, he is getting used to having his blood glucose checked and has even now started doing his own finger stick with the needle while I hold his meter.

When you experience death, tragedy or disease within your family, the life that you know, your "normal" is taken away. And you grieve for that familiar normal that you love....

The challenge is to find your new normal and to love that too. The time period varies for individuals and families. We are not quite there yet, I know the road might be long, but we've started the journey.

photos taken from my iphone in the hospital:

Our dear boy the day of his diagnosis/first night at the hospital.