Wednesday, July 20, 2016

7.5 Year TEDDY Visit

We recently completed my son’s 7 ½ year visit. My son is happy to go to TEDDY each time because he likes playing on the Kindle Fire, getting a prize, and receiving the TEDDY money. I also think he likes coming to my work, seeing my office, and meeting with Kim. When I asked him to draw something about TEDDY he remembered the new slime with bugs from his most recent visit. He asked to have his visit early because he was saving up for his first large purchase and some of the TEDDY money helped him reach the full amount. He saved money from two TEDDY visits, worked extra chores, and helped on several house projects to earn enough money for a new Star Wars Lego. He and I both have a special connection with TEDDY so I was happy the TEDDY money helped him buy the Lego set he later built with my brother.
Though the prizes are fun and the money is awesome, my son at 7 still does not quite understand why he participates in TEDDY. I have tried explaining diabetes to him and his risk, using tools like the Junior Scientist book, but I believe this is a difficult concept to understand for a child of his age who does not know anyone with type 1 diabetes. I hope to continue the conversation using the books and videos TEDDY has developed so when he’s older he can understand why he is in TEDDY and how he and other children are helping scientists discover the causes of type 1 diabetes. 

We are lucky that his blood draws have gone very well. A year and a half ago my son had a reaction to the numbing cream so now they only uses the cooling spray that numbs the skin for a few seconds. My husband and I wish it was this easy when he has to get shots!

Tuesday, April 12, 2016

Bye Laraine!

Hello! My name is Laraine and I have been working as a TEDDY clinician since the fall of 2010. In June I will be leaving the study to pursue a master’s degree in education. The program will prepare me to teach Special Education in Denver Public Schools. My last five years of interacting with TEDDY participants and families has led me to become a teacher. Working with the children and families has shown me that I truly have an aptitude for connecting with children and have developed a desire to teach children in a classroom setting. In this blog I want to say goodbye by giving a big shout out to our TEDDY staff and of course to our families.

The TEDDY staff has been a huge part of my life the last five years. I have grown both as an individual and as a professional because of the support of our team. I value their friendships and appreciate their support of my decision to become a teacher. I will miss them! I will miss the energy the TEDDY kids bring to the clinic, the funny things the kids say, and watching them grow up. I have learned a lot about dedication by watching the TEDDY families throughout the years. I admire families’ commitment to TEDDY and finding the causes of type 1 diabetes. My experiences have helped me to pursue new dreams thanks to the support and encouragement I’ve received here at TEDDY. Now, onward to the next step in my journey. I will be sure to bring my professionalism, dedication, and determination to help others, to a new place of work where I can explore special needs and help children reach their full potential. Thank you TEDDY for all you’ve done and for all you’ve been for me and for the research community. Farewell!

Thursday, September 10, 2015

Science Day

TEDDY Science Day was a blast for my son and daughter this spring. They both loved participating in the experiments. The bouncy ball station was a big hit followed by the candy blood components station. Our bouncy ball actually lasted a few days even though it flattened out and had to be reshaped several times. My favorite was the strawberry DNA followed by the lava lamps.

In addition to the experiments my son enjoyed helping me at the Science Day. I brought him early to help setup. He was eager to assist and watch all the TEDDY staff getting ready. He also volunteered to stay late with me as opposed to leaving with his sister and dad so he could help with the cleanup. Since he was about 4 he has been very interested in what I do at the TEDDY events even if it was just putting food out. It was so enjoyable to be able to go through the experiments with my son and daughter and watch the other TEDDY children have a good time.

A lot of planning went into the TEDDY Science Day and it was fun to see all the TEDDY staff get so involved. Almost everyone was on an experiment team. Teams were first assigned an experiment but then had to figure out all the materials that would be needed, cost for the budget, write instructions, and create posters. The creativity was awesome! Some of the posters will be displayed in the clinic rooms and hallway starting this fall. We hope this will be an event we will run once a year as TEDDY is always trying new ways to keep you and your child engaged in our study. If you attended we hope you had a great time, if you could not attend we hope to see you next year!

Thursday, March 26, 2015

My son’s “job” with TEDDY

My son has enjoyed many parts of participating in TEDDY over the years. We have been lucky because blood draws have been easy for him. He is someone who thrives on being the center of attention, feeling special, and TEDDY visits are all about him. He loves playing with the toys, using the Kindle Fire during the visits, and picking out prizes. This past visit was even more exciting

because one week before his appointment he spent an evening with me in the Wal-Mart toy section picking out new toys for the playroom and clinic rooms. He asked every day that week if the next morning was his TEDDY visit because he wanted to play with the Transformers he picked out for the clinic.

A benefit of participating in TEDDY is he/we are paid for participation for visits, stool samples, and completing diet records. Thus far my son has not been actively involved in the payment from TEDDY. We set up a bank account for him when he was 6 months old and put all his TEDDY checks in that account. Over the years he has received over $1,000! We were able to use $500 of that money to start a college 529 savings plan last year. Now that TEDDY will be switching to paying in cash for in-person visits, my husband and I are excited for this opportunity to teach him about his “job” with TEDDY. Participation in research is key to learning more about the science of a problem or disease, but it takes time and effort on the part of those who participate in the study. Many research studies pay subjects for their effort, just like TEDDY. My son is old enough to understand money and has a goal to save up for another Transformer. He does extra chores to earn money for his Transformers, but at his next TEDDY visit we are excited to teach our son how his job with TEDDY pays him cash. We will help him divide the money to purchase the Transformer, deposit some in his savings account, and add some to his Christmas gift wallet. We know that not only will this be a good learning experience, but he will be even more excited to go to his next TEDDY visit.

Wednesday, July 30, 2014

I worry about my son's TEDDY results

Since finding out my son’s increased risk for developing diabetes, there has always been the thought and worry that he may one day get the disease. Even now we are waiting on his most resent antibody results. I always hold my breath as I’m finding out his results. Will they still be negative?
I've thought maybe my increased anxiety stems from working in this field, surrounded every day by type 1 diabetes research and knowing that some children his age have antibodies or even diabetes. But knowing me, I’d still have some anxiety even if I didn't work for TEDDY. Are other families like me? Do they wait for that letter in the mail hoping that everything is still negative?
Plenty of adults have the high risk genes and never develop diabetes. I’m one of them, I found out years ago through participation as a control in an adult type 1 research study. I was very surprised that I have those genes and now I look at my childhood a little differently. I think how different my life could have been and how lucky I am that I didn't develop diabetes.  One day I hope a research study will be able to tell everyone what triggers type 1 and what people should avoid or do to prevent getting diabetes. This information may not be able to help our sons and daughters, but I’m holding out hope for their children.

Thursday, May 1, 2014

Guest post: My daughter’s diagnosis of type 1 through TEDDY

Just like all TEDDY kiddos, we were approached at the hospital right after Kyli was born. With my mom being a type 1 diabetic, I figured this was God knocking on our door telling us to do the study. About 2 months later, we received "the envelope."  In college, this is a great thing, but from a study, it meant they wanted Kyli in the study. From this point forward, I knew Kyli was going to develop diabetes...
At 33 months, Kyli was diagnosed with Diabetes in our TEDDY facility.
Her 33 month visit went like any other visit. Ask all the questions, take some blood, nose swipe. We started discussing a few things she would be able to do once she turned 3 years old.  I thought this appointment was going to be a piece of cake. Kyli did wonderfully, no fighting the blood draw.  We were going to be in and out.  I look back and I still think, I should never have been so comfortable. I knew something was up the moment Nurse Ruth (our favorite nurse) came into the playroom and told us Kyli's A1C was next in line and we would have to wait a few more minutes. I thought it was odd, but dismissed it. A few minutes later when she asked us to come back to our room, I got scared.  I grabbed Kyli and held her tight as they then told me her A1C was elevated to 7.4, not bad for a diabetic, but bad for a healthy child. As I wept silent tears, I listened as our life began a huge change.  They brought up an endocrinologist from the downstairs Barbara Davis Center clinic to talk with me and what all this meant. I was asked to watch her sugars closely for the next few days, let her eat what she wants and test her 2 hours later, and if she was high, to call them. 
I packed up Kyli after nurses made sure I was able to safely drive and I drove straight to my Mom's work, which was thankfully on the way home. I cried and we went to lunch at Jack in the Box. Kyli ate a handful of fries, about half of a cheeseburger, and drank some milk. I went home and waited the longest 2 hours of my life. I did everything to make that time go faster.  The two hour mark finally came through, she was napping… I went in tested her sugars, 440.  I then went to my room and cried, my 2 year old daughter was now diabetic.  I called the doctor then and asked, "What is too high?" He said 250.
We then made an appointment for us to come in the next day, Saturday, to do a quick injection overview to get us started. Kyli was diagnosed September 21, 2012. 
This last year has been a blur. We have adjusted to her having diabetes. Her early diagnosis was a blessing, we are still in our Honeymoon Phase, which means that her pancreas still works some. She requires very small doses of insulin, but nonetheless gets 4-8 shots a day depending on what she eats and when. We have become carb counting machines.  We were able to get a Dexcom G4 Continous Glucose Monitor in June, it is my new best friend.  Kyli will be getting her insulin pump in October, it will be a blessing.
Kyli has adjusted to all the changes very well. A month after her diagnosis, we did our first Diabetes walk with the ADA. We are doing that walk again this year in November. Go Team Tiny! 
What we missed before her diagnosis. It was the end of summer in Colorado, it is still hot then. All of Kyli's symptoms were accounted for. Kyli slept a lot, 10-12 hours a night and usually a 4hour nap- she was going through a growth spurt. Kyli was peeing more, we were potty training. Kyli was drinking more, it was during a super hot spell in Colorado and she played outside every day. She never lost weight. Now, when I look back, I remember thinking her sleeping so much was odd, but I dismissed it. We were lucky, if a few more weeks had gone by, Kyli could have gone DKA and we could have ended up in the hospital and Kyli is a coma.  Thankfully, TEDDY was there and in my eyes TEDDY saved Kyli's life.

Kyli with her family in 2013
 We will be doing a follow-up blog post with questions and answers for Kyli's parents. If you have questions you'd like us to ask please email include a note referring to this blog and your question.

Thursday, August 15, 2013

TEDDY Fun with the Big Bad Wolf

At our TEDDY site we were lucky that there was a planned event where families could get together for a free evening of fun and meet other TEDDY families. The tradition for 4 years was a light dinner and free evening at the Children’s Museum. I attended all 4 years and my son has attended 3 years, the 1st party was before my son was born. The last Children’s Museum event was one of my favorites as my son was at a great age to really play. Halfway through the evening we found a wolf costume and he was so excited to be the Big Bad Wolf a character he had learned about on Sesame Street and reading books. He ran around the room and climbed up the tree roots yelling to other kids “I’m the Bad Wolf.” I think he was roaring at kids too, I hope he didn’t scare any young ones! He had so much fun and asked for days, “Go to TEDDY Party again mommy?”

We look forward to this year’s TEDDY event at the Butterfly Pavilion!