Our 3 yo daughter Nikki Tyler DeFruscio was diagnosed with Juvenile Diabetes on
June 19, 2000. This date will be planted in our minds forever. You see that's the day that
our lives and Nikki Tyler's life changed forever.
The best way to describe our life with diabetes would be one big roller coaster. We were constantly chasing highs and lows, forever trying to figure out when the insulin would peak and always trying to predict what the unpredictable Nikki Tyler would want to eat! As most who have small children would agree this was not an easy task. Meals became a battleground where we knew that we had to get Nikki to eat something (often we would have to settle for cheetos) because the insulin was going to peak and she would get to low and cheetos were the only thing that she would eat. Our lives were on hold and everything revolved around handling the high or low of the moment.
Through all of this we searched out websites for information and went to support groups to gain support and knowledge of someway to help our daughter. What became a common theme was that the children on the pump seemed to be getting better numbers more control and enjoying happier times. So at our next doctor visit we asked about putting Nikki on the pump. We were immediately told that she was to young and that maybe when she hit 10 or 11 she would be ready. Also the fact that Nikki had not even had diabetes for a year yet seemed in some way to be in the equation.
What my husband and I couldn't understand was if the ultimate goal was to get Nikki on the pump at 10 or 11 because she would gain better control than why did we have to wait? The question that I thought of often was what kind of damage was being done to our daughters body while we waited for her to get to the age of 10. We didn't understand why it was such an issue putting a small child on the pump, but we weren't the experts. We just wanted help for our daughter and all roads to that help lead us to the pump. Seeing that we were going no where we switched doctors. Our new doctor listened to our concerns, gave us lots of information about the pump but wasn't ready yet to have Nikki go on. (we were new patients to her to). After 3 months of working with this doctor Nikki went in for her 3 month check up and blood work. Her HA1C came back even higher than the last one. We were headed in the wrong direction with no hope in site. Then our doctor said "If you are still interested in the pump I'll work with you ". That was the first day of the rest of our lives! Finally someone willing to help us gain control.
The first 3 months of putting Nikki on the pump were very emotional for me it was hard seeing our beautiful little girl wearing this pump that was her life support. However, Nikki adjusted to the pump in the first week! Another reason I think pumping for little ones is the way to go. It becomes a way of life for them. Our first months on the pump were like Nikki had been diagnosed all over again. We had to start from the beginning and learn everything about the pump, train everyone who would have contact with her and the pump and get a handle on counting the carbs and giving the correct boluses.
Now that Nikki has been on the pump for 6 months I know that we made the right decision. I never thought I could gain so much joy out of being able to tell our little girl "Yes" you can have the chocolate donut! We have been given back our life and the lives of our other 2 children. There were so many times when either my husband or I couldn't go to a baseball game because something was going on with Nikki. I think that this bothered me the most about diabetes. It's a family illness and we were losing precious time with our sons because there was always something going on with Nikki.
The pump has given us back our freedom and allowed us to function as a family again. Now Nikki can sleep in the morning! She can eat lunch at the same time as everyone else! We don't have to home at a certain time so that she can get her insulin and eat. When we have a high we can gain control of it so much quicker. Now we feel like we are in control!
We still have our ups and downs even with the pump but we have better numbers, more control and definitely more freedom in our lives. We know that with Nikki on the pump we are giving her the best chance there is for controlling her diabetes. By being allowed to put her on the pump at the age of 3 we feel like we are saving Nikki from years of out of control blood sugars and the devastation that this can cause to her body. The pump is not a cure for Juvenile Diabetes but it has given us hope!
We would like to thank Dr. Jill Abelseth and RN Diabetes Educator Eileen Hogan. Without these to wonderful people we would still be searching for help. who's time and dedication to our daughter has made our pump experience a success.
Julie JDeFrusc@nycap.rr.com