Two years ago, on October 7, our lives were changed forever. Our 2-year-old daughter was diagnosed with Type 1 Diabetes. I will never forget the night that I realized what was going on, or the three days prior to the diagnosis.
One of your big goals as a mom is to have your child potty-trained. Ashlyn had been doing well with potty training, but all of a sudden we were relapsing, and she was not able to make it to the potty. Monday night I went to check on Ashlyn as she was sleeping, and she had urinated so much that she had leaked out her diaper. This was not just a small leak–the entire bed was soaked and her diaper was as full as if she had been swimming with it on. I thought to myself, “Goodness, you drank too much close to bed time… we need to watch this.” Tuesday, I noticed that she was drinking a lot more water than usual, and, again, she was having accidents all the time. Tuesday night she leaked out her diaper the same amount as the night before. I thought to myself, “Could she have diabetes?” but quickly pushed that thought out of my head. We do not have a family history of diabetes, and she has not had any major illness that could lead to this.
I work part-time, and we are fortunate to have my mom stay with our children while we are both working. On Wednesday afternoon I was working, and I mentioned to my mom to monitor how much Ashlyn was drinking. I had only been at work for an hour and a half, and I received a phone call from my mom. She called to tell me that something was wrong with Ashlyn. She was constantly having accidents. Mom had put her back in pull-ups, and she had filled 3 pull-ups in forty-five minutes.
I am a Family Nurse Practitioner, so I was able to bring a urine dipstick home, and I had a glucometer at home. I was praying that Ashlyn just had a urinary tract infection, knowing that if that was the case she would not be urinating the volume that she was. Instantly, upon testing, I saw that the glucose and ketones in her urine were not only positive, but dangerously elevated. I proceeded to check her blood sugar, which registered at 571. I knew our lives would be changed forever.
Off to the hospital we went. We were able to avoid the intensive care unit because Ashlyn was not in full diabetic ketoacidosis. We were transferred to Springfield, Missouri, where we spent the next three days filling our brains with all the life-saving information we needed to take care of our daughter. In order for someone with Type 1 Diabetes to live, they have to receive insulin via either injections with a syringe or from an insulin pump. The food that Ashlyn eats has to be taken into consideration when dosing her with insulin. Carbohydrates have to be counted, and the amount of protein and fat that she eats also affects her blood sugar. This can be very difficult, especially for a young child, to understand–that they cannot eat until their food has been calculated and insulin given.
One aspect of type 1 diabetes that I did not realize, even as a nurse practitioner, was the affect that this disease has on the entire family. We are very fortunate that we have both sets of grandparents supportive and willing to be involved in the care provided to Ashlyn. Anyone who takes care of Ashlyn must be trained to check her blood sugar and administer insulin, as well as administer glucagon in the event of an emergency.
In August of 2016, Ashlyn developed a rash on her neck, elbows, and other areas. The rash appeared to worsen when she would eat. In late August, Ashlyn was diagnosed with Dermatitis Herpetiformis, which is a rare form of Celiac Disease. This means she cannot eat anything with gluten in it. She is so sensitive that she cannot even use any lotions or soaps that contain gluten. Celiac disease is also an autoimmune disease, and people who have Type 1 diabetes are at a higher risk for developing celiac. This provided another hurdle for our family to overcome. Despite these difficult times Ashlyn has proven to be a very strong little girl. She continues to play with her brother Cooper, and laugh and dress up as a princess, which she does every day. She cannot go anywhere without her crown and princess dress.
Since Ashlyn’s diagnosis, we have become involved with the Juvenile Diabetes Research Foundation (JDRF). We partner with JDRF in order to raise awareness of T1D, as well as to raise funds for research for a cure for Type 1 diabetes. One of the main fundraisers that we are involved with through JDRF is the JDRF One Walk. This year we were blessed with an amazing team. Team Princess Ashlyn Powered by Crossfit Reverence was able to raise $52,000. This money goes directly to research, not only for a cure, but also for therapies to help T1D’s manage diabetes more effectively.
Ashlyn is very strong little girl. From day one, she has not struggled with any of the finger sticks. She handles the injections/pump site changes better each time they have to be done (which is every 2-3 days for pump site changes). She also wears a continuous glucose meter (CGM) that gives us a blood sugar reading every 5 minutes on a receiver. Since Ashlyn is so young, she is not able to communicate to us when her blood sugar is dropping low, or when it is high. This CGM has to be changed every 7 days. This gives you a small glimpse into what it is like living with T1D:
Wake up, check blood sugar, dose insulin, eat breakfast. Check blood sugar at least two hours after breakfast. Sometimes we have to treat low blood sugar with Smarties candies! Check blood sugar before lunch, calculate carbohydrates in lunch, dose insulin. Check blood sugar two hours after lunch. We will have to check blood sugar again and dose insulin if she has a snack. Check blood sugar again before dinner. Calculate carbs, dose insulin. Check blood sugar before bath. Check blood sugar before bed. Mom and Dad wake up and check blood sugar at least three times a night, usually four. If blood sugar is low, we have to wake her and give her Smarties. If blood sugar is high, we have to dose with insulin. As you can see, there is never a break from type 1 diabetes, but you can be involved in all activities of life the same as someone without type 1 diabetes.
Our story is one of the few where the diabetes is caught before the child is in diabetic ketoacidosis (which is a very critical situation and can be fatal). This is why we want Ashlyn’s story told.
Diabetes affects 26 million Americans, including three million who have type 1 diabetes (T1D). T1D is an autoimmune disease, where the body attacks the insulin-producing cells in the pancreas. It is usually diagnosed in children. Those with T1D need daily shots of insulin to live.
We want more people to know the signs of Type 1 Diabetes which are:
+ Extreme Thirst
+ Frequent urination
+ Dramatic weight loss
+ Vomiting or flu-like symptoms
For more information on T1D and how you can help, visit www.jdrf.org
– by: Michelle, Jonathan, Cooper and Ashlyn Wieneke