Support Groups

Support Groups are amazing but sometimes hard to find!

After Austin was diagnosed I knew I had to share my T1 parent contacts with Jodi and Nathan, but how.

That was the hard part.

So I decided to create a private Facebook just for Type 1 parents in my local area. Since the group is private, you had to be invited by a mutual friend to be in it. I wanted it this way, so people could vent, ask for help, anything but only with people who completely understood where they were coming from to feel that way. This way you don't get nosey people trying to put his/her two cents in on matters that they have no clue about.

The support group has been such a blessing.

We have members who were able to schedule meetings in a local church once a month, and those who can make it go and meet other parents, the kids get to play and meet other kids who have to stop and sometimes check his/her blood just like them.

We have had college age kids join the group and it has been helpful getting information from them as to things that our T1 might not be able to communicate with us.

I know the Parents of Type 1 Diabetics on Facebook, is a national group and there are often posts to share where you are from in hopes of getting locals together.

Try to find local support and/or create your own group.

The parents in our group are amazing. We share insight, we vent, we ask questions, we schedule playdates, we share fundraising opportunities, and we share experiences.

It's amazing knowing that even though at times we feel all alone, we aren't. There are tons of people sadly who are in our shoes battling this same disease.

~ Heather

Life Happens

So when I originally started this blog, I had intentions of writing about our life with Type 1 diabetes.

I was unsure of really where to start after the initial diagnosis story and first day of school story (which apparently I wrote but never published, until today:), so that resulted in me not writing anything. Which then resulted in me forgetting that I had started a blog. Oops!

Well I hope that I am back!

Again just like the last time a person close to me had a son diagnosed last week. He is 3 and had about 10 days of monitoring blood sugars before an official diagnosis of T1D. So that along with the fact that my sister-in-law Jodi went to a JDRF mentoring class today got me to really thinking that I need to give this another go.

While discussing the mentor class that Jodi attended today, it dawned on both of us, that we need to do more. I had never heard of a mentor program and when she posted about it on Facebook, there were other experienced moms who were clueless as well.

I think there are many opportunities to learn and grow to help others who are in our shoes, but I don't feel that information is readily available.

I feel that if people were more knowledgeable about opportunities, we would have better turn outs at events that are available.

I want to share our stories.

I want to be able to vent.

I want others to know they are not alone.

I want to help others because I feel that there are so many times with this disease that if you don't have support your life could take a turn for the worse extremely quickly.

This journey is not easy, it's not fun, but it's what we have to deal with on a daily basis whether we like it or not.

So here is my promise to get Too Sweet Cousins back up and running.

Sydney's journey and Austin's journey are similar and completely different at the same time.

So hopefully between the two of them, we can share a multitude of life with Type 1.

~Heather

Sydney's First Day of School

     Sydney's first day of school was probably quicker than most. She was diagnosed on Friday and returned to school on Wednesday. This was due to multiple reasons. First she did not have to stay in the hospital long because we were lucky and found what was wrong prior to her being in DKA (Diabetic Ketoacidosis). Second I am a kindergarten teacher and work in her school and since she was in kindergarten I was three doors down from where she would be, and we are lucky to have a school nurse in our building at all times. And lastly because we wanted to get back to a normal routine as soon as possible. 

     So we get up and get ready, her daddy gets her checked, dosed for breakfast and she eats. I take all of her supplies, doctor orders, and snacks to the car. I know it's going to be a long day. We drop sister off at daycare and head to school. Once I see the nurse has arrived, we head down to give Sydney's supplies and doctors orders, and discuss her day(when will she need to be checked, etc). Our school nurse has had diabetics before, but it had been awhile since she had anyone on shots. Most of the kids were on pumps or older and gave themselves shots, she just checked blood sugar and dosage to verify. I told the nurse I would be there when Sydney would be checked to help get her started. 

     Next, we stopped by her classroom and dropped off her snacks. I gave the teacher the sheets on what to look for if she was hypoglycemic (low blood sugar) or hyperglycemic (high blood sugar). I had used the same sheets when I had a diabetic years ago and it helps you try to keep an eye on what could be happening since the child may or may not be able to tell you. We were told in the hospital that she might be able to say she feels funny but you would have to check and ask her to explain what she feels to help make her aware of the symptoms. I gave the teacher instructions on when she was suppose to have snack, once in the morning and once at the classes regular snack time in the afternoon. Told her she needed to go to the nurse prior to lunch to get checked and get her insulin shot, and that anytime she felt funny she needed to go get her sugar checked and had to have someone walk with her in case she passed out or something happened on the way to the nurse. Thankfully her teacher's classroom is the closest class to the nurse. At the hospital, Sydney had received a book about Coco one of Mickey Mouse's friends who is diabetic and returns to school. It tells about what Sydney has to do in a very kid friendly way. So Sydney had asked that I read it to the class. So to start the day, I read it, then talked a little about it. They listened very attentively and were extremely curious. After all that, I slowly walked out and returned to my classroom and left my newly diagnosed baby three doors down from me. 

     Once in my classroom, I also read them the book about Coco. I thought it was important for them to understand more about what Sydney was going through and to explain why Mrs. Shelton had to go to the nurse the first few days and why Sydney would sometimes need to come to our classroom and be checked. From my experience with my previous diagnosed student, I felt it was important for her class to know because they could sometimes help see when she wasn't feeling right and point it out to the teacher. And I felt it was good for the students to know that just because Sydney has to check her blood sugar and take insulin shots, she isn't any different from them. 

     So the first day, my assistant watched my class anytime Sydney was to go to the nurse. We had to teach the nurse how to use the Novalog pen to give Sydney's injections. 

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

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