Sunday, January 18, 2015

Sydney's First Day Home

     The day Sydney was diagnosed with Type 1 Diabetes, our world felt like it fell apart. We were thrown into two days of intense training to learn how to take care of our little girl. We learned to check blood sugar, count carbs, figure insulin dosage, and give shots to keep our child alive. And then we were sent home, terrified that we didn't know enough. That was just the beginning. 
     The first night, I don't think I slept much if at all. Checking her before I went to bed, setting the alarm clock for 2 am, getting up checking then, checking as soon as she awoke the next morning. We dosed insulin and fed her breakfast. 
     We took little sister to daycare and began our day of picking up prescriptions and grocery shopping. Our next shock was the pharmacy. Yesterday on our way home from the hospital we had dropped off Sydney's prescriptions. We had to get double of some things (glucagon, glucose tablets, and keytone strips) because she needed those at school too. I knew it would be expensive, but I didn't realize the extent of it. I left the pharmacy with two brown bags filled with all the supplies we would need to take care of Sydney. When we got home I spread out all the supplies we had and I cried. It was enough supplies for a three month period, but there was so much. I wondered how we would be able to afford it every three months and how fast we would actually go through it. It was a lot to take in.
     After we dropped the prescriptions off at home, we went back to town to shop for foods Sydney could eat. This was the third shock we got. About halfway through the aisles, I again wanted to sit down and cry! The things Sydney loved were full of carbs. We learned at the hospital that she can still eat almost anything she wants, but much smaller amounts. Her original carbs was 15 for snacks and 45 for meals. We tried our best to hit those exact numbers. She needed things for school lunch and snacks. She needed regular meals. We found some things to get us started and returned home. That afternoon, she helped me as we counted objects and put in bags and labeled with the carb count to take to school for snack. We had bought Hug drink boxes to send to school due to low carb count and made a pile in the floor with supplies, snacks, and drinks to be ready to take to school the next morning. 
     Our meals at home didn't change much. We just had to measure and count Sydney's food. She did get better at eating. Prior to diagnosis Sydney was not the best eater, she would eat a meal and multiple little snacks between meals, etc. Once she knew she had to eat what she said she would because we gave insulin prior to eating, she ate much better. She knew that she had to eat what she said.
     That night my mom and dad came over to visit. It was time for Sydney's shot and due to her being such a champ always having a finger ready to be pricked, and already knowing where she wanted her shot, we asked who was going to give it to her. She looked around and said "Papaw", so I got the shot ready, walked him through how to give it and he did! It was a wild day, but we made it through. 

~Heather

Sunday, January 4, 2015

Sydney's 2nd Diaversary

     I wanted to start this blog on Sydney's 2nd diaversary today January 4th, 2015. I begin this journey due to an overwhelming feeling that I need to share our story to hopefully encourage, support, and raise awareness of juvenile diabetes. Sydney was diagnosed at the age of 6 and in kindergarten. I put symptoms together and helped diagnose my daughter before she was in DKA or a coma. Please read Sydney's Diagnosis for complete details. It has been an extremely different two years, the first year was full of insulin shots and strict carb counting, an admittance to the hospital due to stomach bug and not having a clue how to give insulin when she could not keep anything down. The second year we moved to an insulin pump and sadly do not keep her on such strict carb ratio, and no hospital trips. We have had our good days and bad days, our highest hi's and lowest lows (42) and each time she hits a new high or low number we are thankful that she doesn't have a side effect. She is still my little trooper and takes it with more strength than I ever thought she could. My hope for this coming year is to convince her to get a CGM considering that she has no feeling of when she is low or high. Plus I want it to be able to get a better idea of what her sugar does throughout the day.   


     I learned that after Sydney was diagnosed we would be able to yearly Trialnet test her sister. Trialnet is a test that checks blood for autoantibodies that are predictive of the development of Type 1 diabetes. Sydney's sister, Bree, has been Trailnet tested twice (negative both times) and will continue to be tested yearly. My husband have been tested once as that is all that parents are allowed to be tested. It never occurred to me to get my nephew tested even though Trailnet will test cousins too. Now I wish that I had at least tried to get my brother and sister in law to test him because about a month and a half ago I helped diagnose my nephew Austin on November 15, 2014 with a simple blood sugar check on my daughters meter. Please read Austin's Diagnosis for complete details.


     A week prior to diagnosing my nephew, a 3rd grade student at school was diagnosed. I reached out to his mother for support like had been given to me when Sydney was diagnosed. I let her know that I knew she was overwhelmed, but I was there when she was ready to talk, vent, or question. I told her Sydney's diagnosis story and waited for her to be ready for me. At that time it began bothering me that I am not a big enough advocate for my daughter and Type 1 diabetics. I had wanted to do a write up about what T1D is and the symptoms to be aware of to go on our school's newsletter in November since it was Diabetes Awareness month, but I had talked myself out of it. I reached out to a friend Amy whose blog Naturally Sweet Sisters, I follow and ask questions about diabetic stuff frequently. I asked for guidance in how I could become a better advocate. She told me I could get in touch with my local JDRF and become an advocate. She also gave me the opportunity to tell Sydney's story on her blog. I told her I would love the chance to tell our story, because I truly believe that sharing our stories will help educate the public and get support from others. Considering Austin's diagnosis was less than a week later, I am just now getting the opportunity to write that post for her and that helped give me the idea to create this blog. 

     On National Diabetes Awareness day, I wrote a Facebook post about how when you know someone dealing with an issue and you have personal experience with the same issue that you should reach out to offer support and guidance. I shared that when Sydney was diagnosed a complete stranger heard about her diagnosis and reached out to offer me support. I have since offered my support to two others upon finding our news that their little boys were diagnosed. Little did I know that the next day, I would eat those words and have to reach to my support group whom helped me and I have helped due to my nephew being diagnosed.  Even though I knew everything going on, it was a different situation because he was terrified of needles and had never been hospitalized and I didn't know how to help prepare my brother and Jodi for him to go back to school. I work where Sydney goes to school, so I am always at the school with her. I spent the first day or two in the nurses clinic when Sydney returned to school to be happy with the nurse giving my child her needed insulin. But I was scared to send him back to school when he would go, because I honestly don't know how parents adapt to barely learning to take care of their child then trusting a school nurse who is a stranger to take care of him/her. My support group was quickly able to give support to me and were ready and waiting for my brother and Jodi to join the group to help and encourage them as well. I don't talk to them much, but I try to touch base every now and then to check in. I continue to look to my support group for guidance and strength and I feel that the more people who share their stories can help those newly diagnosed families who have no one to understand exactly what they are going through. We have been lucky to have a pretty immediate support group, but I know that others are not as fortunate.

I have asked Jodi to join me on this journey, so that you all can get not one families perspective, but two. They are still new to this journey. Sydney is on the pump and Austin is on shots and still in the honeymoon phase. So we have multiple options of posts, concerns, and randomness to hopefully make this blog a success. So my main purpose of this blog will be to share our stories about Sydney's journey, Austin's journey, our families journey as we take care of two Type 1 Diabetic cousins.

~Heather