Stefany Shaheen

I found Kailyn’s diagnosis story on a blog that I started well before Kailyn was diagnosed. She never had some of the “classic” symptoms and she would beg me for food instead of water. So, here it is, 3 days after diagnosis:

From www.lifeistwosweet.blogspot.com

Type I Diabetes

This is the BIGGEST change in our life since my last entry. On Tuesday August 5, 2008 I took Kailyn to the doctor because she had been having a stomach ache for weeks. The night before it seemed to have gotten worse. She was crying about it and had not done that before, so I decided it was time to get it checked out. I was chalking the stomach aches up to nerves about first grade (which she talks about all the time) or just growing pains. During this time she was also eating a TON. She was ravenous all the time and cranky because of it. I figured this was because of an impending growth spurt. She wet the bed a few times in the last few weeks too, but I thought it might be a result of the virus I thought she had. Her urinating had increased quite a bit, but her brother goes so often this did not ring a bell for some reason either. Not odd for this family to have to stop 4 times to go the bathroom on the side of the road for a one hour trip. During all this time she started to look skinnier and skinnier. Her bathing suits were drooping off of her and the size 6 clothing we bought for the next school year were WAY too big. I did not understand this because she was 46 pounds which was within the limit for 46-51 pounds that a size 6 was for. (little did I know that she was only 43 pounds)

We had a routine exam at the doctors office. She had a yeast infection (her first ever), a three pound weight loss since May and we thought her stomach aches might be reflux. The doctor thought this might be all stuff left over from the virus we thought she had a few weeks ago. She had some cold sores in and around her mouth a few weeks ago, which is why I thought she had had a virus. He told us to get cream for the yeast and mylanta for the stomach aches and to come back into the office in two weeks for a weight check. If she had not gained weight in that time they would do testing.

On our way out the door he stopped us and said that he decided we should do a urine test and wondered if we could get a sample. We could not because Kailyn had gone before, so we decided we would get the next sample and bring it back to the office before 5.(when they closed)

It did not take long to get the sample. We went to get Sam at Grammie and Grandpa’s and she had to go then. We went and brought the sample and then went to Rite Aid to get the cream for the yeast and the mylanta. It seemed like we were in Rite Aid forever because Kailyn had to urinate twice and so did Sam (Sam constantly has to go to the bathroom). When we got out of Rite Aid I looked at my phone and noticed I had 6 missed calls. One of them being the Doctor’s office. I promptly dialed their numbe,r told them who I was and they said they would get the Doctor right away. (That immediately put a lump in my throat).
The Doctor got on the phone and said something I will never forget. “I hate to tell you this on the phone because I like to tell people this face to face, but Kailyn has Diabetes and you need to go to the ER at Maine Med immediately” He let us know that the Pediatric Endocrinologist was waiting for us and to get there as quickly as possible. The whole time I knew it was an emergency, but I was still hopeful that there was a mistake and the endocrinologist would tell us otherwise. WELL, he did not.

When we got to the ER the Endocrinologist was waiting there. He rushed us through admitting and helped us during triage. When the nurse was asking us why we were there I was giving her all her symptoms and Dr. Jerry (the Endocrinologist) pipes in and said.”and she has type I diabetes” Right then I finally realized it was true and our life was going to change forever. We found out later her blood sugars were in the thousands and she was a ketone level away from the Ped ICU.

I stopped blogging because it became too painful. Sam had been diagnosed with Autism in Sept of 07 and Kailyn Diabetes in August of 08. They both are doing wonderful now and we have been blessed with a new addition, Keira. We have our ups and downs with Kailyn and Sam will be in a regular K class next year and only has speech issues to work on, but I am still not ready to share our day to day life. Here is the link to August when our journey began. You can scroll to the bottom to see when it all started if you would like. http://lifeistwosweet.blogspot.com/2008_08_01_archive.html

Trent with his son, Jack on Halloween

When people find out that one of my children has Type 1 Diabetes, often the first question asked is whether or not anyone else in our family has diabetes. Unfortunately, we do have another family member who has been living with Type 1 diabetes for years. The one person who has this distinction is my brother-in-law, Trent.

When you think about the term brother-in-law you might imagine some distant relative who you make small talk with at holiday gatherings, but my relationship with Trent is quite different. Trent is more like my brother than my brother-in-law. Trent lived with my husband and I when he first moved back to New Hampshire; he married a member of my extended family – a woman who I grew up with; I had the privilege of being present when his son was born; and our children are now great friends. So it is safe to say that we are close relatives and are regularly part of each other’s lives. Trent was the person who helped our family come to terms with the realities of living with diabetes. He taught us how to grocery shop, hosted Elle for sleepovers – complete with late night blood sugar checks and was always at the end of a 24-hour helpline when I had questions about any one of the complex and confusing dynamics that accompanies diabetes.

Trent was diagnosed with so called “juvenile diabetes” or Type 1 diabetes as an adult. His relatively sedentary lifestyle and hearty appetite was well established, but he did not get the opportunities afforded by Type 2 diabetes to make lifestyle changes and ultimately avoid insulin. Unfortunately, Trent was handed the super charged autoimmune disease requiring multiple daily injections of insulin.

We learned about Trent’s diagnosis soon after he returned from a vacation in Florida when his symptoms became acute after drinking copious amounts of the Sunshine State’s orange juice. Blurry vision, headaches, frequent urination and an unquenchable thirst prompted long conversations with his mother, my mother-in-law, about the possibility of diabetes. Trent’s life changed even before his diagnosis was confirmed. Immediately after that conversation with his mother, Trent drastically changed his eating habits and began exercising more regularly.

Today, Trent’s A1C rarely climbs above 5.5. He maintains tight blood sugar control, eats a lean healthy diet and is remarkably disciplined about exercise. Trent’s story is one of hope and possibility. In the scariest moments after Elle was diagnosed, I found it comforting to think about my brother-in-law and friend, Trent. He is a shining example of the good that can come from the challenging realities of living with a chronic disease. Trent is not sick. He is in outstanding physical condition. In fact, when I told him that I wanted to write about him, he told me that it was important for people to understand that he feels better today than he did before he was diagnosed with diabetes. Amazing – right?

Whether your story is hopeful or painful or lots of both, I trust that Trent’s story will inspire you to share your struggles and triumphs. Are you living with diabetes? Are you caring for someone who is or who might be? Please feel free to post your thoughts, anxieties and victories here. I look forward to the comfort and reassurance these stories will provide to my family and so many others.