Kyli's story starts on the second day of her life. A gentleman came into our room and asked if he could take a sample of blood from Kyli's cord. He was here speaking for a study called TEDDY (The Environmental Determinants of Diabetes in the Young.) With the blood from his cord they would test to see if Kyli had a gene that puts her at a higher risk of developing Type 1 diabetes, also know as juvenile diabetes. The TEDDY program is a study to try and determine the enivromental factors that cause children with the high risk gene to develop juvenile diabetes. Mike was on his 2nd deployment at this time and my Mom was with me for Kyli's birth and stayed with me at the hospital. When this gentleman came in we both looked at each other after hearing his speech and knew that this is something Kyli was meant to do. Some background, my Mom is a juvenile diabetic, she was diagnosed when she 10 years old, after many months of being ill. She lost a lot of weight and had many of the symptoms of a undiagnosed diabetic. Both Mom and I felt that if we could protect Kyli from ever having these symptoms that we should. So, I signed the the release granting TEDDY some of Kyli's blood and forgot about it for a month and half and enjoyed my 2 kiddos.
In February of 2010, I received a large envelope from TEDDY. Immediately, I knew that Kyli had to have the gene. It was like when you applied for college, if they accepted you, you received the large envelope and if they denied you, you received the normal letter envelope. So, without opening the envelope, I bundled up the babies, and took them and my envelope to my Mom's house. Mike was not scheduled to come home for at least another 4 months. When I got there, my Mom was not home, so we waited. When she got home, I opened it and read the news I already knew. Kyli has the gene they look for that puts her at a higher risk than other children. I was in tears. I have been through enough with my Mom to know that it is not as easy as it seems. As a matter of fact, in January, just a month before, my Mom and I had attended her orientation for a kidney transplant that was diabetic related. That same day, I called TEDDY and said yes we want to be a part of the study. Our first appointment was scheduled for when Kyli turned 3 months...
The first TEDDY appointment was a lot of information. The basic idea is this: for juvenile diabetes they look for 3 antibodies. They have ranges of safe numbers, but when the amount of the antibodies gets over a certain range, they then consider the antibody overly active and assume that the antibodies are attacking the body, usually the pancreas. At each of Kyli's visits, every 3 months, they take blood from Kyli and test it for the three antibodies. Luckily, they have this AWESOME numbing agent for their arms. If she showed positive, then they would notify us and we would go from there. They said most the time that the children never develop the antibodies and that they use the information they get about the children's environment to apply to the study. Seemed easy enough and I agreed to put Kyli in the study, we can help children in the future with the information they gain from Kyli and kids like her.
All was fine for her 2 visits, no anitbodies, just a healthy baby. On 10/13/2010, I received a letter stating that Kyli was showing an elevated number on one antibody. I received a phone call soon thereafter and was told that a lot of children at some time or another will have one elevated antibody; they do not know why, but it happens. Usually, they said, it will go away in a couple visits. Well, I was thinking about Kyli's visit and "realized" that Kyli was getting over a cold when we had that visit, so for sure the next one I would have to make sure she was healthy and we would get accurate results. The next visit happened, 6 weeks later we received another letter. Her antibodies for that particular one had nearly doubled. Another 3 months go by and we have another visit, another letter, once again the antibodies doubled and this time I notice that another had elevated, but was not in the red zone. Another 3 months, another test, another letter, this time she has 2 antibodies elevated. I got two phone calls, one from our nurse and the other from one of the doctors. I was told that the next visit was going to be longer so they can explain how the study is going to change for Kyli. I was also told because she has 2 out of 3 antibodies, she is at an even higher chance now of getting Type 1 Diabetes.
So, we showed up to this last appointment not knowing what to really expect, except that the open is double the time. They sat me down and told me that they are the line to keep us from going into denial that Kyli will not get sick. They will have to be mean sometimes to get through to me, but that they are only doing it because they care. We did our normal routine, weight, height and blood. They then instructed me how to take a sample of Kyli's blood with a meter, I tried it on myself first to see how painful it is and then had to do Kyli. This was the part I was not looking forward to, I remember how much it hurt when my Mom used to test my blood when I was little. Talk about a change, the needles that stick your finger are less than half the size of what I remember. I did not feel it and neither did Kyli. She was more upset that I had to squeeze her finger to get enough blood to put on the blood stick. It was easy and now I can test her sugars at home and make sure she is feeling okay. It actually gave me comfort.
We are currently waiting for the results from the last appointment. While it causes some anxiety, I think more about if Kyli ends up getting diabetes rather then these next results. I have cried many times over this and keep hoping that each time we have her blood taken the results are going to change for the better. I know that children are diagnosed with diabetes often enough, but it is hard to think that someday either in the near or distant future, we may get a phone call from the TEDDY study telling us that Kyli is now diabetic and we need to come and meet with all her new doctors. It breaks my heart to think about this and how her life is going to change. I think about all the hardships that my Mom went through and how something as simple as walking a 5k can affect her sugars. I think about how I want Kyli to be active and how she could have her sugars bottom out and that we will all have to learn how to keep her healthy. Kyli will have to have shots if she gets it and that just seems cruel to have to give her injections multiple times a day; that means I will have to inflict pain on my child daily, mulitple times and it makes my heart hurt. I just don't want it to happen. The huge positive to her being in the study though, is if she ends up becoming diabetic we will know quickly and she will not get as sick as my Mom did before she was diagnosed; for that I am grateful.
I know that other kids have been diagnosed with things much worse than diabetes, but at the same time any hardship on a child seems like cruel punishment to me. I often think that issues Kyli may have could be worse, but why does it have to be anything?!
I guess the hardest part of this, is waiting and not knowing the outcome. IF she will become diabetic and IF, when? I try to stay positive but sometimes it almost seems easier to just think that she will get it and be prepared for it.
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