tag:blogger.com,1999:blog-1965890093482499142023-12-12T10:04:03.239-08:00Co-PancreatingApril Annhttp://www.blogger.com/profile/01507843616836131578noreply@blogger.comBlogger20125tag:blogger.com,1999:blog-196589009348249914.post-44266610166335891062013-11-14T11:21:00.000-08:002013-11-14T12:20:54.041-08:00<b><span style="color: #3d85c6;">We were sitting in the living room, chatting about the amazing sky outside. She sat in front of me on the floor, her hands folded under her chin, leaning on the ottoman. My fellow sky watcher was telling me about what it would be like to live in the clouds.</span></b><br />
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<b><span style="color: #3d85c6;"> The light was perfect, softly diffused by the clouds and filtered through the marine fog that was rolling in. I grabbed the camera, hoping it could capture her turquoise eyes and her magical expression. Hoping to capture the feeling of the moment. Peaceful. Dreamy. Lovely.</span></b><br />
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<b><span style="color: #3d85c6;">Click. Click. The picture was perfection. The beauty, the simplicity, the Moment. It captured Her. </span></b><br />
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<b><span style="color: #3d85c6;">The "bzzzzzz, bzzzzzz, dee, dee, dee, do, do, BEEP, BEEP, BEEP" of her continuous glucose monitor (CGM), startled me out of the Moment. </span></b><br />
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<b><span style="color: #3d85c6;">I grabbed her testing stuff. She asked me for a cappuccino. I thought she was joking and we laughed together. She poked while I put in the test strip. She wasn't joking, she just wasn't "here". She was low, and dropping fast.</span></b><br />
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<b><span style="color: #3d85c6;">She mumbled something about cappuccinos again. I opened the skittles and she dutifully starting chomping. I watched the color drain from her face, her lips blanch, her eyes become hollow and distant. There was 4 minutes difference between the first picture and the second. 4 minutes. </span></b><br />
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<b><span style="color: #3d85c6;">Today is "World Diabetes Day" also known as "every single day, 24/7/365" in the Durham household, and in millions of households around the world. Diabetes is a Moment stealer. A silent, insidious, ever present, relentless, giant elephant in the room, burdensome, scary disease. </span></b><br />
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<b><span style="color: #3d85c6;">Dr Frederick Banting was born Nov. 14th, 1891. He won the Nobel Peace prize for perfecting the discovery of insulin in 1922. Prior to that, diabetes was always fatal. It still is without insulin. With all the technological advances since 1922, nothing has compared to Dr. Banting's discovery. So today, I am grateful to a man that worked in a crude lab, with no money, shunned by many colleagues, forced to kill his best friend canine to prove his discovery. My kids are alive today because of his diligence, his passion, his drive.</span></b><br />
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<b><span style="color: #3d85c6;">Thanks to Dr. Banting and his small team, we get to have Moments. Even the ones diabetes steals. </span></b>April Annhttp://www.blogger.com/profile/01507843616836131578noreply@blogger.com3tag:blogger.com,1999:blog-196589009348249914.post-36747046656369464522011-03-07T17:59:00.000-08:002011-03-07T17:59:14.944-08:002011 DiabetesMine Technology Challenge Contest Video featuring none other than...<a name='more'></a><div style="color: #0b5394;">Dealing with diabetes is like having a life dependent, full time job. Every activity, every meal, everything has to be planned and prepared for. Glucose meters, test strips, insulin, syringes, needles, pumps, glucose tabs, infusion set supplies, carb counting tools, the list goes on and on. While technology has come so far in helping people live with diabetes, there is so much room for improvement. Do you have an idea, that you think could help people make living with diabetes easier? Here is your chance to make a difference in the lives of the millions of people coping with diabetes. The <b style="color: #073763;"><a href="http://www.diabetesmine.com/designcontest">2011 DiabetesMine Technology Challenge</a></b><b><span style="color: #073763;"> </span></b>is an online contest that is open to anyone to help foster creative new design ideas to make living with diabetes easier. It is unlike any other contest- it is open to engineers, people with Type 1 or 2 diabetes, caregivers, parents, children-anyone with an idea can enter. Besides the best prize of making a difference in the lives of millions-is the cash! Watch the video for details!!</div><div style="color: #0b5394;"><br />
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</div><div style="color: #0b5394;">Last year, the<b><span style="color: #073763;"> <span style="color: #0b5394;">DiabetesMine Technology Contest</span> </span></b><a href="http://www.diabetesmine.com/designcontest" style="color: #351c75;"></a>was announced just weeks after T was diagnosed. We knew about it through Amy Tendrerich's blog at<b style="color: #0b5394;"><a href="http://www.diabetesmine.com/"> DiabetesMine</a></b><span style="color: #073763;"><span style="color: #351c75;">.</span> </span>T had some ideas, but he was still recovering from diagnosis and was busy preparing for his hospitalization for the clinical trial and he wasn't able to make an entry. This year, when I got an email from the awesome Kathleen Fraser at the University of California San Francisco Diabetes Center about a possible video shoot for T about diabetes technology, I knew that he would be interested. When I found out it was the<b style="color: #073763;"> <a href="http://www.youtube.com/watch?v=36da6MlWTRw&feature=player_embedded" style="color: #0b5394;">DiabetesMine Technology Video</a></b><span style="color: #351c75;"> </span>shoot, I knew it was meant to be. T was excited to support a cause he really believes in.</div><div style="color: #0b5394;"><br />
</div><div style="color: #0b5394;">Please share this video with everyone you know- the more ideas, the more innovation, the more technology, the better! No idea is too big or too small. For entry details and contest rules click here:</div><div style="color: #0b5394;"><br />
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</div><div style="color: #0b5394;"><b><a href="http://www.diabetesmine.com/designcontest">Contest Web Page</a></b></div><div style="color: #0b5394;"><br />
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</div><div style="color: #0b5394;">To help share and spread the word click here: </div><div style="color: #0b5394;"><br />
</div><div style="color: #0b5394;"><b><a href="http://www.diabetesmine.com/wp-content/uploads/2011/03/2011-Design-Challenge-Press-Release-FINAL.pdf">Press Release</a></b></div><div style="color: #0b5394;"><br />
</div><div style="color: #0b5394;"><b><a href="http://www.diabetesmine.com/wp-content/uploads/2010/02/2010DesignChallengePoster-FINAL.pdf">Poster</a></b></div><div style="color: #0b5394;"><br />
</div><div style="color: #0b5394;">Special thanks to Amy Tenderich at <b style="color: #0b5394;"><a href="http://www.diabetesmine.com/designcontest">DiabetesMine</a></b><span style="color: #351c75;"> </span>and the California HealthCare Foundation for providing such an amazing opportunity. Good luck and happy innovating!!</div>April Annhttp://www.blogger.com/profile/01507843616836131578noreply@blogger.com5tag:blogger.com,1999:blog-196589009348249914.post-34996566351875241472011-02-23T07:27:00.000-08:002011-02-23T07:27:53.775-08:00One Year Dia-versary Interview with T<div class="separator" style="clear: both; text-align: center;"><a href="https://1.bp.blogspot.com/-NfMm0a1WARw/TWS8ZWljB_I/AAAAAAAAAGc/mY3h6MdzAHo/s1600/165172_183382951685811_100000423223694_593519_1972037_n+%25282%2529.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="212" src="https://1.bp.blogspot.com/-NfMm0a1WARw/TWS8ZWljB_I/AAAAAAAAAGc/mY3h6MdzAHo/s320/165172_183382951685811_100000423223694_593519_1972037_n+%25282%2529.jpg" width="320" /></a></div> <span class="Apple-style-span" style="color: #0b5394;"><b> My measly vocabulary is preventing me from putting into words how I feel about passing the one year mark of T's diagnosis. Instead, I thought I would let T do the talking. I was surprised at some of his answers and astonished by others. I am amazed at the young man he is and feel absolutely privileged and honored to be his mom. </b></span><br />
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<span class="Apple-style-span" style="color: #0b5394;"><b> Me: One year ago today on February 23, 2010, we were in a very different place than we are today. Can you tell me what you remember about the day you were diagnosed? </b></span><br />
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<span class="Apple-style-span" style="color: #3d85c6;"><b>T:</b></span> <span class="Apple-style-span" style="color: #3d85c6;"><b>I went to school and felt really bad the whole day. We went and got all of the papers for the home study for school because we had a trip planned and we were leaving that day. I remember we went and got the oil changed in the truck and I drank a Pepsi. When we got home, everyone was getting ready for the trip, I had all ready packed, so I was resting on the couch. Dad and our friend Karen got home from work. I remember you were really worried about me, and asked Karen to check me over. We all talked about it, and I started feeling really bad. We decided I should go to the hospital. I remember being really cold that whole day. Even though it was 70 out. We got to the hospital and I sat in a chair. You went over to do paperwork, and then they called me straight back, in front of a lot other people that looked sick. I remember being in a hospital bed, but not getting into it. I remember being hooked up to an EKG machine in front of the nurses station and the nurse who put the IV in. I was glad she did a good job. I remember getting put into the back of an ambulance to go to Children's. I remember snippets of the ambulance ride, I wished I could see out the front of the ambulance instead of the back. When I got out of the ambulance they put me in a hall way and then into a hospital ER room. Honestly, that is about it from that day. </b></span><br />
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<span class="Apple-style-span" style="color: #0b5394;"><b> Me: When you say you felt bad at school, what do you mean by bad?</b></span><br />
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<span class="Apple-style-span" style="color: #3d85c6;"><b>T: I felt like I was moving through molasses. I had heartburn really bad, and my legs hurt. I was cold and I had a headache. </b></span><br />
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<span class="Apple-style-span" style="color: #0b5394;"><b>Me: Do you think having type 1 has changed how you feel about life?</b></span><br />
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<b><span class="Apple-style-span" style="color: #3d85c6;">T: </span></b><span class="Apple-style-span" style="color: #3d85c6;"><b>Yes, I do. I feel more driven. More confident. I know that I have ideas and things that can help manage type 1 and I want to make them happen. I feel like I have more of a purpose. </b></span><br />
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<span class="Apple-style-span" style="color: #0b5394;"><b>Me: What are some of the things that are challenging for you about having type 1?</b></span><br />
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<span class="Apple-style-span" style="color: #3d85c6;"><b>T: </b></span><b><span class="Apple-style-span" style="color: #3d85c6;">Having to teach people about type 1 diabetes. The confusion between type 1 and type 2 is frustrating. The media portrays T1 and T2 as just "diabetes". The common person doesn't even know anything about T1 because they haven't seen T1 in the media. It drives me crazy that most articles about diabetes I get online are about diet and exercise. That is important for all healthy people, I eat well and work out a lot and I still have T1. There isn't anything I could've done to not get it and there isn't anything I can do now to get rid of it. I wish media would cover the struggles of having T1. How much work goes into not just staying "in range", but how much goes into just staying safe. I have to think about T1<i> all. the. time</i>.<span class="Apple-style-span" style="font-size: large;"> </span></span></b><br />
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<span class="Apple-style-span" style="color: #3d85c6;"><b> It's also frustrating to me that there isn't more technology specific for type 1 diabetes. I feel like if an Ipod or a phone can run hundreds of apps and serve hundreds of functions, why can my pump only serve one? And that is to do what <span class="Apple-style-span" style="font-size: large;">I</span> tell it to do. It's not like my life depends on it or anything. *rolls eyes*</b></span><br />
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<span class="Apple-style-span" style="color: #0b5394;"><b> Me: Can you talk about the clinical trial you are participating in and how and why you decided to do it?</b></span><br />
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<span class="Apple-style-span" style="color: #3d85c6;"><b> T: I did the trial because I wanted as many tools as I could to manage the disease. The trial offered the best and most effective care. I wanted to help maintain the function I still had of my pancreas as long as possible. You never told me it would be a cure, but that it might help be part of finding a cure someday. </b></span><br />
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<span class="Apple-style-span" style="color: #0b5394;"><b>Me: Was it a hard decision?</b></span><br />
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<span class="Apple-style-span" style="color: #3d85c6;"><b>T:</b></span> <span class="Apple-style-span" style="color: #3d85c6;"><b>No. I heard about it and researched it. When I had gained enough knowledge I really wanted to do it. </b></span><br />
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<b><span class="Apple-style-span" style="color: #0b5394;"> Me: Do you think we prepared you well enough for the trial? It's okay if you say no. We have always wondered. </span></b><br />
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<span class="Apple-style-span" style="color: #3d85c6;"><b>T: Yeah. You guys told me I would feel the worst I had ever felt. Over. And over. You told me about the risks, the side effects and how bad it would be. You told me about the possible benefits. You never said it would work though. You did tell me there were hopes that it would.</b></span><br />
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<span class="Apple-style-span" style="color: #0b5394;"><b>Me: Did you believe us? About how bad it would be? </b></span><br />
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<span class="Apple-style-span" style="color: #3d85c6;"><b>T: No. *laughs* I was like "Yeah, whatever. Those people were wimps."</b></span><br />
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<span class="Apple-style-span" style="color: #0b5394;"><b>Me: Were you scared?</b></span><br />
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<span class="Apple-style-span" style="color: #3d85c6;"><b>T: </b></span><b><span class="Apple-style-span" style="color: #3d85c6;">No, not really. I was nervous when we walked in.</span></b><br />
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<span class="Apple-style-span" style="color: #0b5394;"><b>Me: Was it worse than you thought it would be?</b></span><br />
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<span class="Apple-style-span" style="color: #3d85c6;"><b>T: Yes. It was worse than I thought it would be. But it was only as bad as you told me it would be. The only time I regretted it was in the beginning, when I didn't think I was getting the thymo. Even as bad as I felt, I never regretted it as soon as I realized I was getting the drug.</b></span><br />
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<span class="Apple-style-span" style="color: #0b5394;"><b>Me: Do you think the trial paid off?</b></span> <br />
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<span class="Apple-style-span" style="color: #3d85c6;"><b>T: Yes. My blood sugars are easier to manage. The test strip supplies help too. The education and getting to work with Dr. Gitelman is awesome. </b></span><br />
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<span class="Apple-style-span" style="color: #0b5394;"><b> Me: Do you have any advice for newly diagnosed families? </b></span><br />
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<span class="Apple-style-span" style="color: #3d85c6;"><b>T: Learn as much as can so you know what to do and can better manage it. Take advantage of every opportunity to learn. Clinical trials aren't for everyone, but I think people should seriously consider them. I think the trial really changed my life. Educate yourself and the people around you. The more you know, the safer you will feel and the more comfortable your life will be. </b></span><br />
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<span class="Apple-style-span" style="color: #0b5394;"><b>Me: We have talked about the complexity of "the cure." Any thoughts?</b></span> <br />
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<span class="Apple-style-span" style="color: #3d85c6;"><b>T: To me a cure would mean that I would go through some sort of process and then I would <span class="Apple-style-span" style="font-size: large;">never</span> have to poke myself again. It would mean that type 1 was preventable. It would mean that my pancreas or some other organ made enough insulin that I wouldn't have to think about it any more. </b></span><br />
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<span class="Apple-style-span" style="color: #0b5394;"><b> Me: How do you want to mark the one year dia-versary of your diagnosis? </b></span><br />
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<span class="Apple-style-span" style="color: #3d85c6;"><b>T: One word. <span class="Apple-style-span" style="font-size: x-large;">PARTY</span></b></span><span class="Apple-style-span" style="font-size: large;">.</span>April Annhttp://www.blogger.com/profile/01507843616836131578noreply@blogger.com12tag:blogger.com,1999:blog-196589009348249914.post-88972774550866929632010-11-30T01:50:00.000-08:002010-11-30T02:56:36.981-08:00A Late T1D Sibling Day Post<div style="text-align: center;"><span class="Apple-style-span" style="color: #073763;"><b><span class="Apple-style-span" style="font-size: large;">This post is to honor and acknowledge C. </span></b></span><br />
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</span></div><div><span class="Apple-style-span" style="color: #073763;"><b>C is one of the most incredible humans I have ever had the privilege to love. He is probably the most simply complicated person I have ever met, and it is amazing to be his mother. </b></span></div><div><span class="Apple-style-span" style="color: #073763;"><b><br />
</b></span></div><div><div class="separator" style="clear: both; text-align: center;"><a href="https://1.bp.blogspot.com/_INtPByfQX5s/TPTSUBrKrzI/AAAAAAAAAFU/Oj6NkTqz1VY/s1600/Orpheus-%252428or-Thracian-Girl-Carrying-The-Head-Of-Orpheus%252429.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><b><img border="0" height="200" src="https://1.bp.blogspot.com/_INtPByfQX5s/TPTSUBrKrzI/AAAAAAAAAFU/Oj6NkTqz1VY/s200/Orpheus-%252428or-Thracian-Girl-Carrying-The-Head-Of-Orpheus%252429.jpg" width="123" /></b></a></div><span class="Apple-style-span" style="color: #073763;"><b>He is 12, 15 months younger than his older brother and 7 years older than his sister. He is passionate about reading, and football and is a second degree brown belt in Shotokan Karate. He is the one kid in his class that ALWAYS has the right answer and is referred to as the "go to guy" by his teacher. He remembers facts and trivia after reading it once, he has a thirst for knowledge and loves to learn anything that he is interested in. In a room full of people presented with a problem, C is the guy who provides the solution that leaves everyone thinking, "Why didn't I think of that?" His brain works different from anyone I know and he uses his gift beautifully. C is the only twelve year old I know that can go to the de Young Museum in San Fransisco and stand before the painting of Orpheus's head on a lyre by Gustave Moreau and then proceed to explain the mythological tale portrayed in the painting in front of twenty five people, including the Docent from the museum. </b></span><br />
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<span class="Apple-style-span" style="color: #073763;"><b>He rounded out that day with a game of flag football and karate that evening. </b></span></div><div class="separator" style="clear: both; text-align: center;"></div><b><br />
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</b></span></div><div class="separator" style="clear: both; text-align: center;"></div><div><span class="Apple-style-span" style="color: #073763;"><b>I have watched him play with the kid no one wants to play with and stand up for what he knows is right, even when it wasn't the popular thing to do. His sense of right and wrong is black and white and rigid. His stubbornness is admirable, and (ahem!) <i>challenging </i>(for the record, he comes by this trait honestly, he comes from a LONG line of pure stubborn. I think it manifested brilliantly in C). He is a hard, diligent worker when he commits himself. He is a perfectionist and his own worst critic. He is a terrible secret keeper, incredibly honest and has a wicked sense of comedic timing that can make laugh until you cry.</b></span></div><div><span class="Apple-style-span" style="color: #073763;"><b><br />
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</b></span></div><div><span class="Apple-style-span" style="color: #073763;"><b>But where C really shines is in being a brother. I remember when he found out we were expecting and he was so thrilled. (T was worried about changing diapers!) He wanted to be a big brother so badly. Of course, he wanted a boy. I still laugh when L was born a girl. He said "Well, I will <i>love</i> her, but I'm not sure I will<i> like</i> her." I thought that was so profound and honest for a six year old. Watching him read her a bedtime story, play cars with her and teach her to throw a football makes me misty eyed every time.</b></span></div><div><span class="Apple-style-span" style="color: #073763;"><b><br />
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</b></span></div><div><span class="Apple-style-span" style="color: #073763;"><b> When T was diagnosed it was C who was there for L that first scary night, when Sam and I had to be with T and the kids were welcomed to our awesome, amazing neighbors to stay the night until my parents could arrive from WA state. And it was C who stepped in and helped Grandma and Grandpa keep the house running smoothly through the hospitalization. C took T's diagnosis seriously and understood from the start that our life had changed. He asked intelligent questions and was eager to learn. It has not been easy for him. There is no doubt that T1D takes up our time, our energy and our focus. It has taken attention away from him that he deserved to have. He doesn't complain when I come into the room that he shares with his brother several times a night trying not to disturb his sleep. Or when Dr. appointments and hospital stays interfere with our family. Or when wacky blood sugars or migraines change our plans. He has learned to check blood sugars, how to recognize and treat a low blood sugar and when to get help. C learned to draw up insulin when T was doing injections and now he helps get set change supplies together. L was with C when she had her first low blood sugar. (None of us knew at the time that's was what was happening) He came into the house from playing outside and told me that there was something wrong with her and that he didn't know what to do. Now he keeps an eye on her too. </b></span></div><div><span class="Apple-style-span" style="color: #073763;"><b><br />
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</b></span></div><div class="separator" style="clear: both; text-align: center;"></div><div><span class="Apple-style-span" style="color: #073763;"><b> While he is grown up and mature in so many ways, C is wise enough to enjoy and appreciate being a kid. One of my favorite sounds on this Earth is his giggle. He works hard and PLAYS hard. One of the many reasons I love and admire him so much. I am so grateful he picked our family. We love you C, thanks for being YOU!!!</b></span></div><div><br />
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</div>April Annhttp://www.blogger.com/profile/01507843616836131578noreply@blogger.com4tag:blogger.com,1999:blog-196589009348249914.post-39740767753546199582010-11-08T21:22:00.000-08:002010-11-08T21:22:52.457-08:00Clincal Trial Update<div style="color: #073763;">Deciding to allow Tanner to participate in the Start Thymoglobulin trial was by far one of the most difficult decisions our family has ever made. Our lives were upside down with a new diagnosis, our son was recovering from his close call with mortality, we were learning a whole new language (<a href="http://co-pancreating.blogspot.com/2010_06_01_archive.html" style="color: #0b5394;">diabetenese</a>) and trying to figure out how to ever be okay knowing that our son's life now relied on a little bottle of insulin and our math skills. (I barely pulled a C- in math all through school, thank goodness the kids inherited Sams math skills) Including a clinical trial the magnitude of the thymo trial into the mix felt daunting at best. Through soul searching and scientific research a final decision was reached we all agreed on. To read about the process and details of the trial <a href="http://co-pancreating.blogspot.com/2010/05/its-official-clinical-trial-is-on.html" style="color: #0b5394;">here.</a></div><div style="color: #073763;"><br />
</div><div style="color: #073763;">T1 is caused by the immune system attacking the cells in the pancreas that produce insulin. Thymoglobulin is a drug used in organ donation transplants to stop donor rejection in the recipient. The START trial is being done to see if thymo can stop the immune system from attacking the pancreatic islet cells still functioning in a newly diagnosed Type 1 person. </div><div style="color: #073763;"><br />
</div><div style="color: #073763;">To be honest, the trial was much more difficult than I had imagined. The infusions T went through left him feeling like he had the worst flu EVER. I wrote several blogs in May documenting the trial. The side effect continued for weeks after including side effects we didn't expect. I had moments I seriously doubted our decision and judgment. Moments I wondered if it would ever be worth it. There were so many unknowns, all I knew at the time was how miserable our son felt, and how amazingly positive he remained. </div><div style="color: #073763;"><br />
</div><div style="color: #073763;">Part of the trial protocol involves very strict diabetes management, keeping logs, and multiple appointments that include extensive blood work and follow up testing. In order to have a full understanding of the results so far, you must have some background information in order to understand the significance of the tests. T has appointments every three months for blood work and questions, and every six months for the next two to five years for a test called a Mixed Meal Tolerance Test (MMTT). An MMTT requires T to eat at least 150 carbs for three days prior to testing. Then fast with nothing but water for the last 16 hours. Except for his basal insulin, he can not have bolused or have any active insulin for at least two hours before the test begins. An IV is placed and blood is taken. T tests his blood sugar. He then drinks a supplement drink called Boost that has a determined amount of carbohydrates and protein. He does not bolus (administer through his pump) any insulin for the Boost. His blood sugar is tested and drawn every fifteen minutes for four hours. All data is collected and evaluated. This test helps measure how well his pancreas is producing insulin.</div><div style="color: #073763;"><br />
</div><div style="color: #073763;">I will do my best to keep this as brief and as understandable as possible. Bear with me. First I will describe some terms, definitions and values and how they apply to a person <b>without</b> Type 1 Diabetes. Then I will relate the the same values for a person <b>with</b> Type 1 that would be typical for someone T's age and last I will reveal how T's values measure up. </div><div style="color: #073763;"><br />
</div><div style="color: #073763;">People <b>without </b>Type 1Diabetes:</div><div style="color: #073763;"><br />
</div><div style="color: #073763;"><b>Blood Sugar Value</b>: the amount of glucose (sugar) present in a persons body to provide energy for all organ systems. </div><div style="color: #073763;">Value for someone without diabetes- 70-120 on average, children can be as high as about 140.</div><div style="color: #073763;"><br />
</div><div style="color: #073763;"><b>A1C:</b> Is a numerical value average of the last three months of a persons blood sugar. A person without diabetes will have an A1C of between- 4-5.9</div><div style="color: #073763;"><br />
</div><div style="color: #073763;">A Person <b>with </b>Type 1 Diabetes that is T's age (13) and in puberty.</div><div style="color: #073763;"><br />
</div><div style="color: #073763;">There are thousands of factors that change blood sugar values in people with T1. Puberty is notorious for wreaking havoc with blood sugars in kids with T1. Boys produce testosterone, a steroid hormone, which makes the body very insulin resistant. It can cause blood sugar values to be stubbornly high, even with large amounts of insulin present. Our Dr. explained today that it is typical for a boy in T's stage of puberty to need 25 units of basal insulin for 24 hours (insulin needed to maintain basic body function) and have to take 1 unit of insulin for every 5 carbohydrates eaten. These numbers vary drastically from person to person. </div><div style="color: #073763;"><br />
</div><div style="color: #073763;"> <b>A T1 teen blood sugar values </b>vary depending on the person but most goals are set at having a blood sugar of between 80-180. Because people are not perfect manual pancreas's, despite frequent testing, carb counting and testing at night, it is almost impossible to always remain in those value ranges. T1 is a constant balancing act that requires continually factoring in multiple factors that are never static and can't be predicted. How to you predict hormones? a pending virus? the pancreas suddenly over-achieving and kicking out extra insulin? a set (catheter that administers insulin under the skin) becoming plugged? predict how fast or slow insulin injected into the skin will work? a growth spurt? how much sugar the body burned running in PE? how many carbs are in the cupcake that Johnny's mom unexpectedly brought to school that you are carb counting by your childs description over the phone?You can't!! Resulting in numbers that are out of range and require more insulin or carbohydrates to correct.</div><div style="color: #073763;"><br />
</div><div style="color: #073763;">An <b>A1C </b>goal for a T1 teen in puberty is 6.0-8.5. Multiple factors have to be taken into consideration between a doctor and the family to create a target A1C. It varies greatly and should not be the only criteria when determining how well a teens T1 is being managed. Even teens that diligently test and work hard at managing T1 can still struggle with A1C's. Sometimes an A1C can be well below this, which at first glance may seem great, but can be a result of devastating low blood sugars which can be dangerous-even fatal. Having a lot of low blood sugars can lower an A1C and insulin adjustments have to be made to prevent lows.</div><div style="color: #073763;"><br />
</div><div style="color: #073763;"><b>T's results so far:</b></div><div style="color: #073763;"> </div><div style="color: #073763;"> T did his MMTT today. He did not bolus or inject any insulin for this test. He does continue to use his basal insulin which maintains his body's basic insulin needs for metabolic function. His blood sugar before starting the test was 94. At half an hour after drinking the Boost he was 125. At an hour and a half he was 150. At two hours he was 186. At three hours he was 143. At four hours he was 100. A half hour after the test ended he was 78. T's blood sugars are rarely below 65 and seldom above 150. His average blood sugar value is 103. He uses about 8.5 units of insulin over 24 hours for his basic metabolic needs (basal insulin) and he takes 1 unit of insulin for every 18 carbs. </div><div style="color: #073763;"><br />
</div><div style="color: #073763;">His <b>A1C</b> was 5.1 today. His lowest blood sugar over the last three months was a 64. Even for someone in his "honeymoon" phase of Type 1 diabetes his A1C is rare. His Dr. walked in today toward the end of the MMTT and said jokingly, "Do you have Type1? Why are you here? With this A1C and these blood sugars you don't qualify for this trial!" </div><div style="color: #073763;"><br />
</div><div style="color: #073763;">We have no way of knowing how long this will last. T has never once regretted the trial and what he went through. Many of the "what if's" and worries, while warranted at the time, have faded now. T's T1 still requires work, diligence, testing, carb counting and worrying. And we realize how different his T1 is from families and people struggling with this disease. We also know that it can change anytime and and there is no way to predict that. We are just so happy to have been presented with an opportunity and for having a son brave enough to seize it. </div><div style="color: #073763;"><br />
</div><span style="color: #073763;"> </span>April Annhttp://www.blogger.com/profile/01507843616836131578noreply@blogger.com7tag:blogger.com,1999:blog-196589009348249914.post-37050292570561896932010-10-26T09:18:00.000-07:002010-10-26T09:18:43.159-07:00JDRF Walk Day 2010 Golden Gate BridgeI had so many plans for our first JDRF Walk. I was going to write a letter worthy of the Oprah show. Make a video worthy of an Oscar. Raise thousands of dollars.<br />
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And every single time I sat down to work on my Oprah letter and Oscar nomination worthy video, I found myself emotionally crippled. Overwhelmed by grief and sadness. I couldn't look at the pictures and the words that came out seemed sad and desperate. Not inspirational and heartfelt. I agonized and felt guilty. Here I claimed I would do anything to find a cure for our son, yet I couldn't write a letter or make a video and could barely bring myself to sign up? I could talk the talk but not walk the walk. Not like me at all.<br />
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I needed a new perspective. I forget that it has been eight months since our lives changed forever. Then with our recent scare with L it brought up so many emotions from T's diagnosis and the fear and anxiety I feel for her overwhelmed me. Instead of denying the feelings, I let them come. I decided that this year the walk was for <b>US</b>. It was to acknowledge all we have been through and celebrate the triumphs. To acknowledge the challenges and tribulations and how we keep conquering them. We walked to show how grateful we are that we are together and healthy. We walked to honor T and what an amazing job he is doing and for his brother and sister and all their support.<br />
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Here is a video of our JDRF Walk Day 2010.<br />
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We had an amazing time, walking with amazing friends (Go team Schuwalker!), meeting new people and feeling like part of a world community. T's clinical trial team was there and we had a happy reunion. They were amazed at how well T is doing.<br />
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We continued our celebration by visiting the de Young Museum in San Francisco and seeing beautiful tribal artwork from Africa. We didn't bring a change of clothes, so we wore our walk shirts to the museum.<br />
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The highlight of our trip was when a beautiful woman walked up and said, "So did you guys walk today or are you all wearing matching shirts to find each other in the museum?" We explained that we had walked today and she went on to tell us that she had been Type 1 for 25 years. Diagnosed when she was 14. She had traveled all over the world, to Europe, and Asia, and had just returned from Africa, had two healthy kids and told us she had never been in the hospital for Type 1. She gave T advice about college, driving and how to "manage" his parents. I found it interesting that she said that Type 1 is way harder for parents, than it is for the kids who have it. She wanted T to know that Type 1 would never stop him from doing anything he wanted to do. I hugged her and thanked her. She had no idea how badly <b>I</b> needed to hear that. And T was lit up the rest of the day. To the beautiful, world traveling, wedding attending, fellow T1D woman from Texas- THANK YOU.<br />
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Then we played and splashed in the park in the rain. We finished off our day with our favorite Burmese restaurant- where we SWAGed with awesome accuracy (or just plain dumb luck-but hell, I'll take it)!<br />
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I am so glad we went. We had a wonderful day. This was a practice video for next years donation drive video. I am preparing my speech all ready.April Annhttp://www.blogger.com/profile/01507843616836131578noreply@blogger.com2tag:blogger.com,1999:blog-196589009348249914.post-85151750702155486272010-10-21T12:53:00.000-07:002010-10-21T22:00:23.137-07:00Results Without AnswersI have sat down to write this post several times, yet I keep finding myself unable to put my thoughts together. My thoughts and feelings are scattered like dandelion seeds on the wind.<br />
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Last month our daughter had a frightening episode of hypoglycemia (low blood sugar). You can read about it <a href="http://co-pancreating.blogspot.com/">here</a>. In the back of every Type 1 parent's mind lurks the fear that your non-diabetic children will develop Type 1. When your child is first diagnosed there is a certain amount naivety, you just don't know all the intricacies of having Type1. You don't know how much work it is. You don't know how scary it can be. You don't realize the impact it will have. I felt like the realizations came along the same time as my resolve and strength when T was diagnosed. Facing a possible second diagnoses, that naivety is gone. You know how bad it can really suck. You know the fear, the anxiety. You know the impact it has on your child, you can see into the future and imagine what the lows will look like, how the highs will feel, because you have seen it before.<br />
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We had L admitted to UCSF for further testing. She fasted for 22 hours in an attempt to create a low blood sugar. She was amazing and never complained, never cried. The staff fell in love with her. They were so impressed with how she handled everything. She watched as they put the IV in and made jokes about her blood. She rocks. Parenting her is such a gift.<br />
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She never did have a low blood sugar, we were relieved that her body seem to do exactly what it was supposed to, but worried to have not found definitive answers. Before discharge we weighed the options. There are some blood tests that can help determine your risk of developing Type 1 diabetes. They measure the amount of autobodies in your blood. There are four different autobodies that can be tested. The tests are not perfect and there are only a few labs in the US that perform the tests. L and our other son C are both enrolled in a clinical trial called TrialNet that tests their blood every year until they are 18 to test for these autobodies. Both kids were tested in March of 2010 and the results were negative for autobodies. Indicating that their risk for developing type 1 was very low. That can change at anytime. Researchers are using the study to try to determine how and why people develop autobodies and if they do, if it is possible to delay the onset of Type 1.<br />
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We decided to run these autobodies tests again on L. The blood was sent to a lab that is different than the TrialNet lab. We had no idea it would take weeks to get results. L has not had any low blood sugars since her hospitalization. We only test her blood sugars if she seems symptomatic for highs or lows or if she asks. We have seen some numbers in the 190's that have created concern. (normal is 70-140) Last Friday L and C 's school had their annual huge fundraiser, a Walk-a-thon that they entire school participates in. C and L both walked 10 miles to support the school. It was half way through when I got an email from L's Dr. with the results. Two out of the four of her autobodies were elevated.<br />
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The normal GAD value range is 1.0 or less. L's was 1.8.<br />
The normal ICN value range is .8 or less. L's was .9<br />
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Dr. G went on to explain that although her values were elevated, he was not comfortable calling them positive. He explained that this lab is not as sensitive or advanced in technology as the TrialNet lab and that the results are not as precise. He felt that her values were not "off" enough to say that she she is definitely positive. He also said he was concerned to see that they were elevated in combination with the higher blood sugar values. His advice was to continue careful monitoring, testing her blood sugar when she seemed symptomatic, and randomly 2 hours post meal and fasting every week or so and keep track of the numbers for trends. If we start seeing numbers in the 190+ range longer than two hours after meals or higher fasting numbers then we will reevaluate. We will retest through TrialNet in March or sooner if necessary.<br />
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I feel like I was prepared for a positive or a negative result. I am grateful it wasn't positive, but I really had hoped for a negative result. This in-between isn't what I expected. My emotions run the gamete ranging from grateful and hopeful, to angry and heartbroke. I can't get the look on T's face out of my head when we told him the results. <br />
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Here we are with results without answers. Next time I find a dandelion and blow on the seeds, I think you all know what I will be wishing for.April Annhttp://www.blogger.com/profile/01507843616836131578noreply@blogger.com2tag:blogger.com,1999:blog-196589009348249914.post-40251754613696342322010-09-08T23:03:00.000-07:002010-09-09T23:21:28.861-07:00"Mommy, my legs feel scared...."<span class="Apple-style-span" style="color: #073763;">Today might have been one of those days that changes our lives forever. One of those days we never forget and sends our life on a whole new path. Or it might have been a random fluke, a weird, scary, rotten reminder of the deep fear we all carry about Type 1 diabetes and siblings.</span><br />
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<span class="Apple-style-span" style="color: #073763;">This morning T's little sister L was tough to wake up. Incredibly unusual for a girl who is in love with Kindergarten and her new teacher. She has been battling a mild virus, a stuffy nose, no cough, no fever kind of virus. She was pretty much over it, I never kept her home from school, it was hardly noticeable and didn't bother her. It was oddly similar to the type of virus T had three weeks or so before he was diagnosed. I thought maybe she was hard to wake because her virus had returned and worsened. She would wake up and then dose off, she was soaked in sweat and completely not herself.</span><br />
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<span class="Apple-style-span" style="color: #073763;">It wasn't until she looked at me and said; "Mommy, my legs feel scared," that my stomach sunk, my heart broke and I felt the panic rising. She held up her arms to me and she was shaking terribly. I looked at T and he was all ready heading to the kitchen to get the meter, poker and test strips. Poke. 5,4,3,2,1... 41. Juice. 15 min. 61. Juice. 15 min 81. Oatmeal and cheese. (I know not the best choice for BG, I wasn't thinking very coherently). In the meant time she was drowsy, we could wake her and ask questions and she would respond and then fall immediately back to sleep. She was 145 an hour after breakfast.</span><br />
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<span class="Apple-style-span" style="color: #073763;">I called T's Endo and asked for advice. After some deliberation about where to go and with L continuing to be very sleepy, we chose the ER with the Endo's pager number in hand. We arrived at the ER and they took us straight back and paged the Endo to get orders for blood work. Her blood sugar was 208 at 11 am in the hospital with small ketones by urine. We put in an IV and waited for the blood lab work to return. She was back to herself at this point. By 1:00 she was hungry. We tested her BG and she was 54. She ate a good lunch and then we waited some more. Her blood sugars were between 90-100 the rest of the afternoon.</span><br />
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<span class="Apple-style-span" style="color: #073763;">The test results are inconclusive. So far everything we know is positive. Her A1C was 5.4. A good indication that her sugars haven't been too high for any period of time, it also indicates that if she has been having hypoglycemic episodes (low blood sugars), they have not been occurring for very long. A "normal" A1C is between 5.0-6.0. Her blood was negative for ketones, indicating that she has insulin available in her body. The ketones in her urine were probably from fasting overnight. We made a collaborative decision with the Endo, the ER Dr,. and us to go home. We will be monitoring her blood sugars and activities. Over the last few weeks L has said that her legs felt scared a few times, I didn't make the connection. There have been other things as well, but it is difficult to say if it is symptoms or coincidence, or fear and paranoia. If she has any more episodes of hypoglycemia she will be admitted to the hospital for observation and to create a low blood sugar, in order to do lab work while it is happening, hoping to result in some answers.</span><br />
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<span class="Apple-style-span" style="color: #073763;">Our other two children were tested in April for anti-autoantibodies for Type 1 diabetes and both were negative, indicating that their chance for developing T1 was unlikely. That can change at anytime. Our immune systems can create anti-autobodies at anytime, increasing the risk of developing T1. Sometimes a virus triggers this change. Our local hospital was unable to do these tests. We are getting the paperwork together and will be having her retested for anti-autobodies this week. A negative result should mean that her chances of T1 are slim, a positive could indicate that she is in the early phase of developing T1.</span><br />
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<span class="Apple-style-span" style="color: #073763;">I am too exhausted to post about how I feel. The fear, the anger, the HOPE. I know we can handle anything-I just hope we don't have to.</span>April Annhttp://www.blogger.com/profile/01507843616836131578noreply@blogger.com3tag:blogger.com,1999:blog-196589009348249914.post-87352074804233944442010-08-22T22:09:00.000-07:002010-08-23T00:07:36.815-07:00Life B.D./A.D.<span class="Apple-style-span" style="color:#330099;">Six months ago today, on February 22 our lives changed forever. </span><div><span class="Apple-style-span" style="color:#330099;"><br /></span><div><span class="Apple-style-span" style="color:#330099;">Unlike many of the amazing families of T1 kids that were diagnosed as baby and toddlers, T was diagnosed about three weeks before his 13th Birthday. Many of them don't know what it is like to parent a child without T1. They all have my deep love and respect, I am so grateful that I can still remember what life was like Before Diabetes. <b>(B.D.)</b></span></div><div><span class="Apple-style-span" style="color:#330099;"><br /></span></div><div><span class="Apple-style-span" style="font-size:medium;"><b><span class="Apple-style-span" style="color:#330099;">B.D.</span></b></span><span class="Apple-style-span" style="color:#330099;"> poker was a game that I taught my kids and never won again, not a little torture device that is used to stab his finger to keep him healthy.</span></div><div><span class="Apple-style-span" style="color:#330099;"><br /></span></div><div><b><span class="Apple-style-span" style="color:#330099;">B.D.</span></b><span class="Apple-style-span" style="color:#330099;"> the only time I ever thought about "BG" (stands for blood glucose) was for the two seconds it took me to change the radio station every time a BeeGee song came on. (Sorry fans it is something about that nasally high pitch voice that drives me bonkers!)</span></div><div><span class="Apple-style-span" style="color:#330099;"><br /></span></div><div><b><span class="Apple-style-span" style="color:#330099;">B.D.</span></b><span class="Apple-style-span" style="color:#330099;"> we took for granted the </span><span class="Apple-style-span" style="font-size:large;"><span class="Apple-style-span" style="color:#330099;">CraZy</span></span><span class="Apple-style-span" style="color:#330099;"> freedom of going out for dinner and eating mexican food and ice cream in one night, or going out for pizza and to a movie with popcorn and candy without calculating, weighing and SWAGging the carb counts and insulin dosage and then worrying and checking all night about how it will effect his blood sugar.</span></div><div><span class="Apple-style-span" style="color:#330099;"><br /></span></div><div><b><span class="Apple-style-span" style="color:#330099;">B.D.</span></b><span class="Apple-style-span" style="color:#330099;"> T would run in the house dirty, laughing, exhausted from riding bikes and playing outside with his brother and sister and grab a couple of cookies and a huge glass of milk and swig it down. Without even thinking twice about it. Without worrying about a low blood sugar from the activity and without calculating carbs.</span></div><div><span class="Apple-style-span" style="color:#330099;"><br /></span></div><div><b><span class="Apple-style-span" style="color:#330099;">B.D.</span></b><span class="Apple-style-span" style="color:#330099;"> a pump was a part that went out in our Ford diesel truck that cost us about $1200, I shouldn't have complained, it was cheap compared to T's.</span></div><div><span class="Apple-style-span" style="color:#330099;"><br /></span></div><div><b><span class="Apple-style-span" style="color:#330099;">B.D.</span></b><span class="Apple-style-span" style="color:#330099;"> a "Square" was a shape like a box, and a "dual wave" would have been two waves in a row on the lake or ocean. Not scientific methods of delivering insulin with a pump over an extended period of time to help deal with high fat foods.</span></div><div><span class="Apple-style-span" style="color:#330099;"><br /></span></div><div><b><span class="Apple-style-span" style="color:#330099;">B.D.</span></b><span class="Apple-style-span" style="color:#330099;"> "diabetus" was a word I associated with the grumpy, kinda cool old guy on the Liberty Medical Supply commercial and not the disease that almost claimed our boys life. </span></div><div><span class="Apple-style-span" style="color:#330099;"><br /></span></div><div><b><span class="Apple-style-span" style="color:#330099;">B.D. </span></b><span class="Apple-style-span" style="color:#330099;">I remember what it was like to let him play or work outside all day long and only worry about a sunburn. And to hug him goodnight every night and only worry about nightmares and migraines, not serious low blood sugars and worse. </span></div><div><span class="Apple-style-span" style="color:#330099;"><br /></span></div><div><span class="Apple-style-span" style="color:#330099;">T does too. He remembers. He knows "what he is missing." He knows what life was like <b>B.D.</b> There has been grief, sadness, anger, fear. Some days, there still is. Dealing with my own feelings is hard, watching our son deal with his has been harder. There has also been, strength, grace, courage, emotional and spiritual growth, maturity, compassion and LOVE.</span></div><div><span class="Apple-style-span" style="color:#330099;"><br /></span></div><div><span class="Apple-style-span" style="color:#330099;">Life After Diabetes <b>(A.D.)</b> is a work in progress. </span></div><div><span class="Apple-style-span" style="color:#330099;"><br /></span></div><div><span class="Apple-style-span" style="color:#330099;">There has been an immediate sense of "prioritization". Life issues are much easier to categorize according to importance. </span></div><div><span class="Apple-style-span" style="color:#330099;"><br /></span></div><div><b><span class="Apple-style-span" style="color:#330099;">A.D.</span></b><span class="Apple-style-span" style="color:#330099;"> There is less sleep and more productive worrying. I use to worry about things I couldn't change or didn't know. I still worry, but my worry helps me stay vigilant and focused. </span></div><div><span class="Apple-style-span" style="color:#330099;"><br /></span></div><div><b><span class="Apple-style-span" style="color:#330099;">A.D. </span></b><span class="Apple-style-span" style="color:#330099;">We are more aware of what we eat and our health. More appreciative of how incredible our bodies are and how they work. </span></div><div><span class="Apple-style-span" style="color:#330099;"><br /></span></div><div><b><span class="Apple-style-span" style="color:#330099;">A.D.</span></b><span class="Apple-style-span" style="color:#330099;"> We are more aware of time and how fast it is going by. How fast life can change. How to be more grateful and appreciative. More compassionate, less judgmental. More aware and less hurried. </span></div><div><span class="Apple-style-span" style="color:#330099;"><br /></span></div><div><b><span class="Apple-style-span" style="color:#330099;">A.D.</span></b><span class="Apple-style-span" style="color:#330099;"> We have an met an entire amazing network and support system of T1 families and people affected by T1. People I can't imagine my life without now.</span></div><div><span class="Apple-style-span" style="color:#330099;"><br /></span></div><div><b><span class="Apple-style-span" style="color:#330099;">A.D.</span></b><span class="Apple-style-span" style="color:#330099;"> We are closer. Stronger. Life after Diabetes is becoming life with diabetes. And we are </span><span class="Apple-style-span" style="font-size:large;"><span class="Apple-style-span" style="color:#330099;">LIVING</span></span><span class="Apple-style-span" style="color:#330099;"> it. </span></div><div><span class="Apple-style-span" style="color:#330099;"><br /></span></div><div><br /></div><div><br /></div><div><br /></div></div>April Annhttp://www.blogger.com/profile/01507843616836131578noreply@blogger.com9tag:blogger.com,1999:blog-196589009348249914.post-87966607445902295932010-07-22T00:47:00.000-07:002010-07-22T01:58:05.643-07:00The Voice<b><span class="Apple-style-span" style="font-size:medium;">I will start this by saying that I am really grateful I don't have to boil T's urine to check his blood sugar. Seriously, I have met many people with type 1 that spent years boiling urine to determine what their blood sugar was before they had blood glucose meters for home use. Sugar crystals don't even appear unless your blood sugar is over 200. I am grateful to have better tools. And, as grateful as I am, the tools we have aren't good enough. </span></b><div><b><span class="Apple-style-span" style="font-size:medium;"><br /></span></b></div><div><div><b><span class="Apple-style-span" style="font-size:medium;">Four nights ago T went to bed with a blood sugar of 99 and two hours later when I checked he was 177. The Voice in my head said "Recheck". With his honeymoon in full swing it is unusual for him to be that high. I rechecked him and the meter said 134. I breathed a sigh a relief, and thanked The Voice. Had I given him insulin, he surely would have gone low. </span></b></div><div><b><span class="Apple-style-span" style="font-size:medium;"><br /></span></b></div><div><b><span class="Apple-style-span" style="font-size:medium;">The next night, he was 106 when he went to bed and two hours later I checked him and was 167. I washed his finger and rechecked and got 172. Gave him his correction and rechecked him in an hour and got 160. Hmmm. I knew his hands were clean, The Voice said "Retest." </span></b></div><div><b><span class="Apple-style-span" style="font-size:medium;"><br /></span></b></div><div><span class="Apple-style-span" style="color:#000066;"><b><span class="Apple-style-span" style="font-size:large;">126</span></b></span></div><div><b><span class="Apple-style-span" style="font-size:medium;"><br /></span></b></div><div><b><span class="Apple-style-span" style="font-size:medium;">The Voice can't be repeated here, my Mom reads this blog.</span></b></div><div><b><span class="Apple-style-span" style="font-size:medium;"><br /></span></b></div><div><b><span class="Apple-style-span" style="font-size:medium;">Deciding to give his meter the benefit of doubt, I changed the battery in his meter, thinking that it might be bad. Even though it is only a month old. </span></b></div><div><b><span class="Apple-style-span" style="font-size:medium;"><br /></span></b></div><div><b><span class="Apple-style-span" style="font-size:medium;">Last night T went to bed with a blood sugar of 104. Cool. Normal for him. He had a low in the afternoon and I planned on checking him earlier than I normally would have that night. At midnight I checked him and got 208. Yes, his hands were clean. The Voice screamed "B.S. Retest." </span></b></div><div><b><span class="Apple-style-span" style="font-size:medium;"><br /></span></b></div><div><b><span class="Apple-style-span" style="color:#000066;"><span class="Apple-style-span" style="font-size:large;">82</span></span></b></div></div><div><br /></div><div><b><span class="Apple-style-span" style="color:#000066;"><span class="Apple-style-span" style="font-size:large;">8 freakin' 2</span></span></b></div><div><b><span class="Apple-style-span" style="font-size:medium;"><br /></span></b></div><div><b><span class="Apple-style-span" style="font-size:medium;">I fed him. Had I not listened to The Voice, I would have given him 1.6 units of insulin and rechecked him in an hour. If 1 unit of insulin brings his blood sugar down 50 points and he was only 82... you do the math. Every time I think of it I get a horrid feeling in the pit of my stomach.</span></b></div><div><b><span class="Apple-style-span" style="font-size:medium;"><br /></span></b></div><div><b><span class="Apple-style-span" style="font-size:medium;">I tried to sleep, but all I could think was "what if". What if, I ignored The Voice. What if, it had been the 3 a.m. blood sugar check when my brain is complete mush and I can't figure out why the stupid meter isn't working after I have all ready stabbed him twice to get him to bleed, only to realize that the damn test strip is in BACKWARDS. Turn the test strip around, but of course he has moved his finger and wiped the blood off. What if, it had been then and I had just reacted. What if, it happens in a year and I am complacent and more comfortable and I have forgotten to be vigilant? What if, my brain is so full of numbers and worry I can't hear The Voice? </span></b></div><div><b><span class="Apple-style-span" style="font-size:medium;"><br /></span></b></div><div><b><span class="Apple-style-span" style="font-size:medium;">The insulin, meter, test strips, pump, etc are all tools that help us keep T healthy. But I am not sure how I would do this without The Voice. My instinct, intuition, gut feeling. Even with all the "what if's", I trust it more than his damn meter.</span></b></div>April Annhttp://www.blogger.com/profile/01507843616836131578noreply@blogger.com6tag:blogger.com,1999:blog-196589009348249914.post-77222337132531472010-06-28T00:00:00.000-07:002010-07-22T00:47:32.514-07:00Diabetes Crash Course 102<span class="Apple-style-span" style="color:#333333;"><span class="Apple-style-span" style="font-size:large;">My worst subjects in school were foreign language and mathematics. T1 has given me the opportunity to revisit both those subjects and forced me to become proficient. Your kids health is a powerful motivator. In the beginning I felt like everyone was fluent in "Diabetenese" and I was baffled how fast people could calculate the amount of carbs in a dish with the serving size and then determine how much insulin to take to keep their blood sugar in the proper range. I don't have that many fingers.</span></span><div><span class="Apple-style-span" style="color:#333333;"><span class="Apple-style-span" style="font-size:large;"><br /></span></span></div><div><span class="Apple-style-span" style="color:#333333;"><span class="Apple-style-span" style="font-size:large;">I won't make you do math, but I hope to give you an idea of what it takes to co-pancreate 24/7, 365 to keep T healthy. You may not be fluent in "Diabetenese" at the end of class, but you will feel more comfortable with it. </span></span></div><div><span class="Apple-style-span" style="color:#333333;"><span class="Apple-style-span" style="font-size:large;"><br /></span></span></div><div><b><span class="Apple-style-span" style="color:#000066;"><span class="Apple-style-span" style="font-size:x-large;">Diabetenese 101</span></span></b></div><div><span class="Apple-style-span" style="color:#333333;"><span class="Apple-style-span" style="font-size:large;"><br /></span></span></div><div><b><span class="Apple-style-span" style="font-size:large;"><span class="Apple-style-span" style="color:#000066;">Common terms and definitions</span></span></b></div><div><b><span class="Apple-style-span" style="color:#333333;"><span class="Apple-style-span" style="font-size:large;"><br /></span></span></b></div><div><b><span class="Apple-style-span" style="color:#333333;"><span class="Apple-style-span" style="font-size:large;"><span class="Apple-style-span" style="color:#000066;">Blood Glucose (Sugar)-</span> </span></span><span class="Apple-style-span" style="color:#333333;"><span class="Apple-style-span" style="font-size:large;"><span class="Apple-style-span" style="font-weight: normal;"> the main sugar that the body gets from food to use as energy. Glucose is carried through the blood stream and delivered to all cells in the body. Every cell in the human body requires glucose to function.</span></span></span></b></div><div><b><span class="Apple-style-span" style="color:#333333;"><span class="Apple-style-span" style="font-size:large;"><br /></span></span></b></div><div><b><span class="Apple-style-span" style="font-size:large;"><span class="Apple-style-span" style="color:#000066;">Carbohydrates-</span></span></b><span class="Apple-style-span" style="font-size:large;"><span class="Apple-style-span" style="color:#000066;"> </span></span><span class="Apple-style-span" style="color:#333333;"><span class="Apple-style-span" style="font-size:large;">Okay, most everyone knows what carbs are, but I felt like we had to cover this. Carbohydrates are a source of energy from food that is converted in the body into glucose. </span></span></div><div><span class="Apple-style-span" style="color:#333333;"><span class="Apple-style-span" style="font-size:large;">Some foods contain carbs and others do not. </span></span><span class="Apple-style-span" style="color:#333333;"><span class="Apple-style-span" style="font-size:large;">Foods that contain carbs are breads, grains, rice, pasta, baked goods, desserts, fruit, some vegetables, (especially potato's), milk, flavored yogurt, etc., ect. Foods that do not contain carbs are meats, cheese, eggs and heavy cream. If you have T1, all carbohydrates consumed must be properly calculated to keep blood sugars in a range that keeps you feeling good. </span></span></div><div><span class="Apple-style-span" style="color:#333333;"><span class="Apple-style-span" style="font-size:large;"><br /></span></span></div><div><span class="Apple-style-span" style="color:#333333;"><span class="Apple-style-span" style="font-size:large;">We use our smart phones, books, labels and calculating recipes to determine how many carbs are in everything T puts in his mouth. We weigh, measure and SWAG (scientific wild ass guess) portions to determine serving size. Right now T takes 1 unit of insulin for every 20 carbohydrates he eats. </span></span></div><div><span class="Apple-style-span" style="color:#333333;"><span class="Apple-style-span" style="font-size:large;"><br /></span></span></div><div><b><span class="Apple-style-span" style="font-size:large;"><span class="Apple-style-span" style="color:#000066;">Pop quiz!! </span></span></b></div><div><span class="Apple-style-span" style="color:#333333;"><span class="Apple-style-span" style="font-size:large;"><br /></span></span></div><div><span class="Apple-style-span" style="color:#333333;"><span class="Apple-style-span" style="font-size:large;">Just kidding. We will quickly carb count a meal. A hamburger and fries. Buns have about 30 carbs, the meat is carb free and fries have 45 carbs per cup (or 100 grams) of fries. Here is where you get to SWAG or weigh. The typical serving T eats is about 60 carbs of fries. Don't worry, I will do the math for you- and I don't even need my fingers anymore. </span></span></div><div><span class="Apple-style-span" style="color:#333333;"><span class="Apple-style-span" style="font-size:large;"><br /></span></span></div><div><span class="Apple-style-span" style="color:#333333;"><span class="Apple-style-span" style="font-size:large;">60(fries) + 30(bun)=90</span></span></div><div><span class="Apple-style-span" style="color:#333333;"><span class="Apple-style-span" style="font-size:large;"><br /></span></span></div><div><span class="Apple-style-span" style="color:#333333;"><span class="Apple-style-span" style="font-size:large;">1 unit insulin/20 grams of carbs </span></span></div><div><span class="Apple-style-span" style="color:#333333;"><span class="Apple-style-span" style="font-size:large;"><br /></span></span></div><div><span class="Apple-style-span" style="color:#333333;"><span class="Apple-style-span" style="font-size:large;">90/20= 4.5 units of insulin</span></span></div><div><span class="Apple-style-span" style="color:#333333;"><span class="Apple-style-span" style="font-size:large;"><br /></span></span></div><div><b><span class="Apple-style-span" style="font-size:large;"><span class="Apple-style-span" style="color:#000066;">Insulin-</span></span><span class="Apple-style-span" style="font-weight: normal;"><span class="Apple-style-span" style="color:#333333;"><span class="Apple-style-span" style="font-size:large;"> The hormone produced by the pancreas, or if you have T1, is administered by shots or by insulin pump that allows your cells to use the sugar they need to function. It works like this- Your pancreas starts releasing insulin when you smell your food, before you even eat it. </span></span></span></b><b><span class="Apple-style-span" style="font-weight: normal; "><span class="Apple-style-span" style="color:#333333;"><span class="Apple-style-span" style=" ;font-size:large;">You eat carbs.</span></span></span></b><b><span class="Apple-style-span" style="font-weight: normal;"><span class="Apple-style-span" style="color:#333333;"><span class="Apple-style-span" style="font-size:large;"> Your body processes the food and releases sugar into your blood stream. The insulin acts as "the bridge" that goes from your blood stream into the cells, delivering the sugar the cells need to function and live.</span></span></span></b></div><div><b><span class="Apple-style-span" style="font-weight: normal;"><span class="Apple-style-span" style="color:#333333;"><span class="Apple-style-span" style="font-size:large;"><br /></span></span></span></b></div><div><b><span class="Apple-style-span" style="color:#333333;"><span class="Apple-style-span" style="font-size:large;"><span class="Apple-style-span" style="color:#000066;">High (Hyperglycemia)-</span> </span></span><span class="Apple-style-span" style="font-weight: normal;"><span class="Apple-style-span" style="color:#333333;"><span class="Apple-style-span" style="font-size:large;">"Are you high?" Try asking that to your thirteen year old in a public place and see how many heads turn. We joke about it all the time. Of course, we are talking blood sugars here! If there isn't enough insulin in the body, the bridge between the blood stream and the cells isn't there. The sugar accumulates in the blood stream and remains unavailable to cells, leaving them to starve and breakdown. A "high" leaves T feeling tired, lethargic, he gets a headache and his muscles hurt. Left untreated without insulin and fluids it can result in a serious life threatening condition called diabetic ketoacidosis (DKA).</span></span></span></b></div><div><b><span class="Apple-style-span" style="font-weight: normal;"><span class="Apple-style-span" style="color:#333333;"><span class="Apple-style-span" style="font-size:large;"><br /></span></span></span></b></div><div><b><span class="Apple-style-span" style="color:#333333;"><span class="Apple-style-span" style="font-size:large;"><span class="Apple-style-span" style="color:#000066;">Low (Hypo, hypoglycemia)</span>- </span></span><span class="Apple-style-span" style="font-weight: normal;"><span class="Apple-style-span" style="color:#333333;"><span class="Apple-style-span" style="font-size:large;">If there is too much insulin in the body it uses up all the sugar available resulting in a low blood sugar. Lows are treated with fast acting carbs that are high in easily absorbed sugar like glucose tablets, juice, honey, candy (not chocolate-I know, not fair but it has too much fat and slows the absorption), regular soda, graham crackers, etc. Low blood sugars left untreated are life threatening and can be fatal. They can happen from too much insulin, too much exercise or activity, excitement, hot weather and sometimes for no obvious reason at all. They leave T feeling, shaky, sweaty, dizzy, anxious and it also affects his ability to make decisions and treat himself. He usually gets a migraine after a low. </span></span></span></b></div><div><b><span class="Apple-style-span" style="font-weight: normal;"><span class="Apple-style-span" style="color:#333333;"><span class="Apple-style-span" style="font-size:large;"><br /></span></span></span></b></div><div><b><span class="Apple-style-span" style=" ;font-size:large;"><span class="Apple-style-span" style="color:#000066;">Correction- </span></span></b><b><span class="Apple-style-span" style="font-weight: normal;"><span class="Apple-style-span" style="color:#333333;"><span class="Apple-style-span" style="font-size:large;">People without T1 have a blood sugar value on average of 70-120. People with T1 become manual pancreas's and keeping blood sugars in range is a constant balancing act. If blood sugar is too low (less than 65 or 70) then you would "correct" by eating a fast acting carb like glucose tablets or drinking juice.</span></span></span></b></div><div><b><span class="Apple-style-span" style="font-weight: normal;"><span class="Apple-style-span" style="color:#333333;"><span class="Apple-style-span" style="font-size:large;"><br /></span></span></span></b></div><div><b><span class="Apple-style-span" style="font-weight: normal;"><span class="Apple-style-span" style="color:#333333;"><span class="Apple-style-span" style="font-size:large;">If blood sugar is too high then more insulin must be administered. Calculating the amount of insulin needed to lower the blood sugar to a safer range requires MORE MATH. Right now for every 50 points of blood sugar that needs to be lowered T needs 1 unit of insulin. His target range is 70-120. We "correct" his blood sugar to 100 during the day and 150 at night. If his blood sugar is 175 here is how we would calculate how much insulin he needs. </span></span></span></b></div><div><b><span class="Apple-style-span" style="font-weight: normal;"><span class="Apple-style-span" style="color:#333333;"><span class="Apple-style-span" style="font-size:large;"><br /></span></span></span></b></div><div><b><span class="Apple-style-span" style="font-weight: normal;"><span class="Apple-style-span" style="color:#333333;"><span class="Apple-style-span" style="font-size:large;">175-100(his blood sugar target)=75</span></span></span></b></div><div><b><span class="Apple-style-span" style="font-weight: normal;"><span class="Apple-style-span" style="color:#333333;"><span class="Apple-style-span" style="font-size:large;"><br /></span></span></span></b></div><div><b><span class="Apple-style-span" style="font-weight: normal;"><span class="Apple-style-span" style="color:#333333;"><span class="Apple-style-span" style="font-size:large;">75/50=1.5 units of insulin</span></span></span></b></div><div><b><span class="Apple-style-span" style="font-weight: normal;"><span class="Apple-style-span" style="color:#333333;"><span class="Apple-style-span" style="font-size:large;"><br /></span></span></span></b></div><div><b><span class="Apple-style-span" style="font-weight: normal;"><span class="Apple-style-span" style="color:#333333;"><span class="Apple-style-span" style="font-size:large;">If he was about to eat, we would add up the carbs of his meal and calculate how much insulin he needed to cover his food, then we would add the "correction" amount of insulin. </span></span></span></b></div><div><b><span class="Apple-style-span" style="font-weight: normal;"><span class="Apple-style-span" style="color:#333333;"><span class="Apple-style-span" style="font-size:large;"><br /></span></span></span></b></div><div><span class="Apple-style-span" style="color:#333333;"><span class="Apple-style-span" style="font-size:large;">4.5 units (meal) + 1.5 (correction)= 6 units of insulin administered by shot or insulin pump.</span></span></div><div><span class="Apple-style-span" style="color:#333333;"><span class="Apple-style-span" style="font-size:large;"><br /></span></span></div><div><span class="Apple-style-span" style="color:#333333;"><span class="Apple-style-span" style="font-size:large;">If his blood sugar was 75 before he ate we would subtract 1.5 units from his food insulin to help bring his blood sugar up to 100. </span></span></div><div><b><span class="Apple-style-span" style="font-weight: normal;"><span class="Apple-style-span" style="color:#333333;"><span class="Apple-style-span" style="font-size:large;"><br /></span></span></span></b></div><div><b><span class="Apple-style-span" style="font-weight: normal;"><span class="Apple-style-span" style="color:#333333;"><span class="Apple-style-span" style="font-size:large;"><br /></span></span></span></b></div><div><b><span class="Apple-style-span" style="font-weight: normal;"><span class="Apple-style-span" style="color:#333333;"><span class="Apple-style-span" style="font-size:large;">So how do you know what your blood sugar is? How do you know how to carb count? How do you get insulin?</span></span></span></b></div><div><b><span class="Apple-style-span" style="color:#333333;"><span class="Apple-style-span" style="font-size:large;"><br /></span></span></b></div><div><b><span class="Apple-style-span" style="color:#000066;"><span class="Apple-style-span" style="font-size:x-large;">Tools</span></span></b></div><div><b><span class="Apple-style-span" style="color:#333333;"><span class="Apple-style-span" style="font-size:large;"><br /></span></span></b></div><div><b><span class="Apple-style-span" style="color:#333333;"><span class="Apple-style-span" style="font-size:large;"><br /></span></span></b></div><div><b><span class="Apple-style-span" style="color:#333333;"><span class="Apple-style-span" style="font-size:large;"><img src="https://1.bp.blogspot.com/_INtPByfQX5s/TChmtS6cKVI/AAAAAAAAADk/qXpFCGeGRgc/s320/D+supplie.jpg" /></span></span></b></div><div><b><span class="Apple-style-span" style="font-weight: normal;"><span class="Apple-style-span" style="color:#333333;"><span class="Apple-style-span" style="font-size:large;"><br /></span></span></span></b></div><div><b><span class="Apple-style-span" style="font-weight: normal;"><span class="Apple-style-span" style="color:#333333;"><span class="Apple-style-span" style="font-size:large;"><br /></span></span></span></b></div><div><b><span class="Apple-style-span" style="font-size:large;"><span class="Apple-style-span" style="color:#000066;">The Poker-</span></span><span class="Apple-style-span" style="font-weight: normal;"><span class="Apple-style-span" style="color:#333333;"><span class="Apple-style-span" style="font-size:large;">Spring loaded torture device that pokes T's finger and makes it bleed. He uses it every time he checks his blood sugar. Before meals, before exercise, when he wakes up, before he goes to bed and anytime he feels high or low. </span></span></span></b></div><div><b><span class="Apple-style-span" style="font-weight: normal; "><b><span class="Apple-style-span" style="color:#333333;"><span class="Apple-style-span" style="font-size:large;"><br /></span></span></b></span></b></div><div><b><span class="Apple-style-span" style="font-weight: normal; "><b><span class="Apple-style-span" style="font-size:large;"><span class="Apple-style-span" style="color:#000066;">Test Strip-</span></span><span class="Apple-style-span" style="font-weight: normal;"><span class="Apple-style-span" style="color:#333333;"><span class="Apple-style-span" style="font-size:large;">Little strips of something scientific that have legs and travel when you aren't looking. You insert one into a glucose meter and apply the blood from the poked finger. I find these little buggers everywhere! (dryer, couch, floor, bed, the dishwasher?!, and yesterday stuck to my leg while outside working, wth?)</span></span></span></b></span></b></div><div><b><span class="Apple-style-span" style="color:#333333;"><span class="Apple-style-span" style="font-size:large;"><br /></span></span></b></div><div><b><span class="Apple-style-span" style="font-weight: normal; "><b><span class="Apple-style-span" style="font-size:large;"></span></b></span><span class="Apple-style-span" style="color:#333333;"><span class="Apple-style-span" style="font-size:large;"><span class="Apple-style-span" style="color:#000066;">Glucose meter-</span> </span></span><span class="Apple-style-span" style="font-weight: normal;"><span class="Apple-style-span" style="color:#333333;"><span class="Apple-style-span" style="font-size:large;">This mini machine does something else scientific and magically determines the amount of sugar in the blood applied to aforementioned traveling test strips. As sophisticated as it seems there is a 20% margin of error in glucose meters. Frustrating and unacceptable, but at this point unavoidable. A story for another blog. </span></span></span></b></div><div><b><span class="Apple-style-span" style="color:#333333;"><span class="Apple-style-span" style="font-size:large;"><br /></span></span></b></div><div><b><span class="Apple-style-span" style="color:#333333;"><span class="Apple-style-span" style="font-size:large;"><span class="Apple-style-span" style="color:#000066;">Insulin Pen-</span> </span></span><span class="Apple-style-span" style="font-weight: normal;"><span class="Apple-style-span" style="color:#333333;"><span class="Apple-style-span" style="font-size:large;">A device for administering insulin by injection that has a cartridge of insulin that is in a plastic device shaped like a large pen. It is easier to measure the insulin in an insulin pen than by drawing insulin into a syringe from a vial and then injecting it. These made our lives much easier. You attach the disposable, detachable needle, </span></span></span></b><b><span class="Apple-style-span" style="font-weight: normal; "><span class="Apple-style-span" style="color:#333333;"><span class="Apple-style-span" style="font-size:large;">dial the end of the pen to the corresponding number of insulin units needed, </span></span></span></b><b><span class="Apple-style-span" style="font-weight: normal;"><span class="Apple-style-span" style="color:#333333;"><span class="Apple-style-span" style="font-size:large;">insert it under the skin of the abdomen, buttocks, thigh or upper arm and push the plunger down. </span></span></span></b></div><div><b><span class="Apple-style-span" style="color:#333333;"><span class="Apple-style-span" style="font-size:large;"><br /></span></span></b></div><div><b><span class="Apple-style-span" style="color:#333333;"><span class="Apple-style-span" style="font-size:large;"><img src="https://1.bp.blogspot.com/_INtPByfQX5s/TChsXTkPP3I/AAAAAAAAADs/bkyX7s2l8JA/s320/T+injection+pen.jpg" /></span></span></b></div><div><b><span class="Apple-style-span" style="color:#333333;"><span class="Apple-style-span" style="font-size:large;"><br /></span></span></b></div><div><b><span class="Apple-style-span" style="color:#333333;"><span class="Apple-style-span" style="font-size:large;"><br /></span></span></b></div><div><b><span class="Apple-style-span" style="color:#333333;"><span class="Apple-style-span" style="font-size:large;"><br /></span></span></b></div><div><b><span class="Apple-style-span" style="color:#333333;"><span class="Apple-style-span" style="font-size:large;"><span class="Apple-style-span" style="color:#000066;">Insulin Pump-</span> </span></span></b><span class="Apple-style-span" style="color:#333333;"><span class="Apple-style-span" style="font-size:large;">A mechanical, manual pancreas. A pump is a computer that contains a resevoir of insulin. It comes with its own blood glucose meter that communicates with the pump. Insulin is administered to the body through a tube attached to a small cannula (a small catheter we call "a set") that is inserted and worn under the skin of the abdomen, buttocks, thigh or upper arm. It must be worn day and night and not be removed for more than an hour or so at a time. The set must be changed and new insulin put into the resevoir every three days. The tubing and pump can be removed from the set for showers and bathing. Some pumps are water proof and can be worn while swimming. T's is not. </span></span></div><div><span class="Apple-style-span" style="color:#333333;"><span class="Apple-style-span" style="font-size:large;"><br /></span></span></div><div><span class="Apple-style-span" style="color:#333333;"><span class="Apple-style-span" style="font-size:large;">Insulin is administered in a slow steady stream to help cover the amount of sugar the body needs to cover all basic needs. This is called a basal rate. It is the amount of insulin needed to make your heart beat, your food digest, your brain to function, your body grow (kids) and cells to regenerate.</span></span></div><div><span class="Apple-style-span" style="color:#333333;"><span class="Apple-style-span" style="font-size:large;"><br /></span></span></div><div><span class="Apple-style-span" style="color:#333333;"><span class="Apple-style-span" style="font-size:large;">Insulin is also bolused in larger amounts to cover carbohydrates. Blood sugar is measured by the meter that corresponds with the pump, the number is wireless transmitted to the pump. T then enters the amount of carbs he is going to eat. The pump calculates how much insulin is necessary based on the ratios manually entered and then saved by the pump. Any correction is calculated by the pump based on values manually entered that the pump saves. A total amount of insulin is shown and then T tells the pump to administer the insulin. </span></span></div><div><span class="Apple-style-span" style="color:#333333;"><span class="Apple-style-span" style="font-size:large;"><br /></span></span></div><div><span class="Apple-style-span" style="color:#333333;"><span class="Apple-style-span" style="font-size:large;"><img src="https://1.bp.blogspot.com/_INtPByfQX5s/TCh1keow6FI/AAAAAAAAAD0/vAknc5P49i4/s320/pump+cgm.jpg" /></span></span></div><div><span class="Apple-style-span" style="color:#333333;"><span class="Apple-style-span" style="font-size:large;"><br /></span></span></div><div><b><span class="Apple-style-span" style="color:#333333;"><span class="Apple-style-span" style="font-size:large;"><br /></span></span></b></div><div><b><span class="Apple-style-span" style="color:#333333;"><span class="Apple-style-span" style="font-size:large;"><span class="Apple-style-span" style="color:#000066;">Continuous Glucose Monitor (CGM)-</span> </span></span></b><span class="Apple-style-span" style="color:#333333;"><span class="Apple-style-span" style="font-size:large;">T's CGM is a wireless device that has a catheter (sensor) worn under the skin that measures the glucose in the tissue below the skin on the abdomen, buttocks, thigh or upper arm. It measures it frequently and then averages the readings and transmits it to T's pump. It requires frequent calibration with his blood sugar values. It is not as accurate as using glucose testing in blood sugar and it doesn't mean he tests his blood sugar less. It does help us see when his blood sugar is raising or lowering or if it is holding steady. It also helps predict when his blood sugar is changing rapidly. It has multiple alarm settings that can be set to help predict when the blood sugar values may be getting too low or too high. It is waterproof and the sensor can be worn for 6-10 days. </span></span></div><div><span class="Apple-style-span" style="color:#333333;"><span class="Apple-style-span" style="font-size:large;"><br /></span></span></div><div><span class="Apple-style-span" style="color:#333333;"><span class="Apple-style-span" style="font-size:large;">Whew! We covered a lot today. Thank you for taking the time to learn about what it takes to become a pancreas. There is a lot more to cover, but for now- enjoy summer. We certainly are!</span></span></div><div><span class="Apple-style-span" style="color:#333333;"><span class="Apple-style-span" style="font-size:large;"><br /></span></span></div><div><span class="Apple-style-span" style="color:#333333;"><span class="Apple-style-span" style="font-size:large;">Class dismissed. </span></span></div><div><span class="Apple-style-span" style="color:#333333;"><span class="Apple-style-span" style="font-size:large;"><br /></span></span></div><div><br /></div>April Annhttp://www.blogger.com/profile/01507843616836131578noreply@blogger.com4tag:blogger.com,1999:blog-196589009348249914.post-82973359911140758352010-06-16T11:45:00.000-07:002010-06-16T18:14:46.156-07:00Diabetes 101 Crash Course<div>I will never forget arriving at the ER with T and being taken directly back to the exam room in front of several other people waiting. I remember thinking- this isn't good. The nurse grabbed a small device thingy and told T she was going to poke his finger. I watched her place a little strip thingy in this little device with a screen on it. She poked T and then held the little strip thingy up to the bead of blood on his finger. The little device counted down 5-4-3-2-1. The nurse showed me the number with a scary concerned look on her face. 688. Then she ran out of the room. </div><div><br /></div><div>I looked at T and said- "T, have you ever heard of a condition called Type 1 diabetes?" His eyes welled with tears and I grabbed his hand. "No, well yeah, sort of, is that what I have?" </div><div><br /></div><div>"Yes, it is. It's going to be okay T. We are going to have a lot to learn, but you will be okay. We are going to figure this out as a family. This is one of those conditions that can be managed." I said. I couldn't bring myself to use the word disease.</div><div><br /></div><div>"Is there a cure Mom? Can we make it go away?" I took a deep breath, so I could look him in the eye and not break down. "No, there isn't- yet. We are going to learn as much as we can T. You will be able to do whatever you want with your life. This isn't going to stop you from anything."</div><div><br /></div><div>The Type 1 Diabetes Crash Course began. Honestly, I am glad I didn't know everything I know now, back then. I would have been so much more terrified and heart broke if I had understood how sick he was at the moment. I didn't know enough to be as scared as I should have been. That all came later in the night, after we learned just how seriously sick T was. His health rapidly declined, plateaued and then returned. Over the next several days, weeks, and months we have realized what a herculean task being a pancreas is.</div><div><br /></div><div>Everyone says, "What can I do to help?" </div><div><br /></div><div>My answer: Read this blog. Seriously. Learn the basics of Type 1. Don't make us keep repeating it. Take a few minutes and learn a little bit and then pass it on. We don't expect anyone to know anything about this disease. That all being said, sometimes it is exhausting saying the same thing over and over. We also realize that not everyone wants every detail about this, yet it is so consuming sometimes it is hard not to talk about it. We realize that we are now Type 1 diabetes advocates. It is a choice, we could have kept this quiet- but that just isn't how our family rolls. </div><div><br /></div><div>So here starts your Diabetes Crash Course 101. By the end of today's lesson you will know recognize the difference between the 3 main types of diabetes and will have a small taste of what it takes to manage Type 1 diabetes.<br /></div><div><br /></div><span style="font-weight: bold; color: rgb(0, 0, 153);font-size:180%;" >Lesson 1</span><br /><div><span style="color: rgb(0, 0, 153);" class="Apple-style-span"><b><span class="Apple-style-span" style="font-size:large;"><br />Type 1</span></b></span>- Type 1 diabetes occurs in children and less commonly (although with increasing frequency) in adults. It is an autoimmune disease. It occurs when a portion of the immune system malfunctions and begins to attack the islet cells in the pancreas that produce insulin. In order to develop diabetes, you must have a genetic make-up that makes you more likely to develop it. Many people who develop diabetes have something that happens in their life that "triggers" it. A stressful event, illness (even a common virus) or growth changes, puberty, injury or surgery. There is no cure and the only treatment is insulin by injection or through an insulin pump. </div><div><br />Having type 1 diabetes does not limit the foods that can be eaten. Individuals with T1 do not have to have a sugar free diet. The amount of carbohydrates going to be consumed must be calculated for every food item going to be eaten and then the appropriate amount of insulin injected under the skin based on mathematical ratios that meet your bodies needs. </div><div><br /></div>People who have type 1 diabetes are at greater risk of losing their vision, heart disease, kidney failure, limb loss due to poor circulation, shortened life span, severe low blood sugars, and diabetic ketonacidosis. Having the best management possible reduces these events. Research and tools have come a long way in recent years and I believe that our children will not see these complications. I tell myself that so I can sleep at night.<div><br /></div><div><span class="Apple-style-span" style="font-size:large;"><span class="Apple-style-span" style="color: rgb(0, 0, 102);"><b><br /><span style="color: rgb(0, 0, 153);">Type 2</span></b></span></span><span style="color: rgb(0, 0, 153);"> </span>- Type 2 is a metabolic disorder. The body still makes insulin, in fact it may even make too much insulin, but the body stops using it efficiently. It can be managed with oral medication, reducing sugar and carbohydrate intake in the diet and exercise. Sometimes Type 2 diabetes can be reversed with diet and exercise alone. People with type 2 diabetes have the same risk factors and increase of risks as people with type 1. </div><div><br /></div><div><span class="Apple-style-span" style="color: rgb(0, 0, 102);"><b><span class="Apple-style-span" style="font-size:large;"><br /><span style="color: rgb(0, 0, 153);">Gestational Diabetes</span></span></b></span> occurs during pregnancy. Some women can manage it with diet and others become insulin dependent. The risks for gestational diabetes are birth defects for the baby if not treated, miscarriage, a baby that grows very large and a baby that can have a serious low blood sugar after being born. Most cases of gestational diabetes go away after pregnancy ends.<br /></div><div><br /><span style="font-weight: bold; color: rgb(0, 0, 153);font-size:180%;" >Lesson 2</span><br />People who do not have diabetes have a normal blood sugar range of 70-120. The target blood sugar ranges for people with Typ1 will vary based on age, weight and other factors. For T's age group 80-180 is common, however the clinical trial protocol T is involved in has a tighter blood sugar range of 70-140. There are so many factors that influence a persons blood sugar that it is very challenging, if not down right impossible to be as effective as a pancreas. Factors like how much and what kind of of food you eat, sleep (or lack of), activity, exercise, emotions, stress, weather, temperature, hormones, the list goes on and all play a role in how much insulin your body needs and how it uses it up. ALL of these factors must be taken into consideration (and sometimes predicted) before every single administration of insulin as well as every activity and meal. Essentially, when a Type 1 diabetes diagnosis is made, the person diagnosed or the caregivers of said person take on the roll of an imperfect pancreas. Being a pancreas is hard freakin work.<br /><br />T checks his blood sugar with a finger poke and a glucose meter when he wakes up in the morning, before every meal, before exercise, after exercise, at bed time, and any time he feels like his blood sugar may be too low or too high, and then I check him 2 times every night around 12ish and 3ish and then Sam checks him in the early morning hours. It averages out to 8-12 times everyday, 24 hours a day, 7 days a week.<br /></div><div><br /></div><div>The number that the blood glucose meter comes up with determines if T needs more insulin by injection (soon to be administered by a pump) to lower his blood sugar, or more food to raise his blood sugar. If his blood sugar is in his target range and he is about to eat then we calculate the amount of carbohydrates in the food he is going to eat, calculate the amount of insulin he needs and then he injects it and eats. We calculate carbs by using labels, weighing foods, by using our Droid smart phones and by my favorite method the "SWAG method" (scientific wild ass guess). </div><div><br /></div><div>It totally rocks when we get it right and he stays in target- the times we don't he either has a low blood sugar from having too much insulin that makes him feel shaky, weak, sweaty and sometimes results in a migraine or a high blood sugar from too much food and not enough insulin that leaves him tired, shaky and gives him a headache. It is frustrating that instead of a letter grade for our crash course, our success or failure with Diabetes 101 is our son's health and well being.</div><div><br /></div><div>Thanks for being a great class. Stayed tuned for Diabetes 102 when we will cover the tools that help us manage this beast and the insulin pump that T will be using to administer his insulin. <span style="color: rgb(0, 0, 153); font-weight: bold;"><br /><br />Class dismissed. </span></div>April Annhttp://www.blogger.com/profile/01507843616836131578noreply@blogger.com8tag:blogger.com,1999:blog-196589009348249914.post-25340559353410971762010-06-11T00:45:00.000-07:002010-06-11T03:05:20.829-07:00T's Awesomeness<div><br /></div><div>These pictures are snapshots of our life during the clinical trial. You will notice that he smiles in every one of them. Despite the fact that in some he had high fevers and terrible body aches, nausea, chills, rigors, etc. His attitude is inspiring and humbling.</div><div><br /></div><div><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://1.bp.blogspot.com/_INtPByfQX5s/TBICz2bVf7I/AAAAAAAAADE/xoKkcSxHMxE/s1600/Tanner+UCSF7.JPG"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 320px; height: 240px;" src="https://1.bp.blogspot.com/_INtPByfQX5s/TBICz2bVf7I/AAAAAAAAADE/xoKkcSxHMxE/s320/Tanner+UCSF7.JPG" border="0" alt="" id="BLOGGER_PHOTO_ID_5481446786270068658" /></a><div style="text-align: center;">The PIC line is in and infusion is ready to start.</div><div style="text-align: center;"><br /></div><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://1.bp.blogspot.com/_INtPByfQX5s/TBICnZF48CI/AAAAAAAAAC8/vHCxyIY_Xgo/s1600/Tanner+UCSF5.JPG"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 320px; height: 239px;" src="https://1.bp.blogspot.com/_INtPByfQX5s/TBICnZF48CI/AAAAAAAAAC8/vHCxyIY_Xgo/s320/Tanner+UCSF5.JPG" border="0" alt="" id="BLOGGER_PHOTO_ID_5481446572237058082" /></a><div style="text-align: center;">The very first infusion </div><div style="text-align: center;"><br /></div><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://1.bp.blogspot.com/_INtPByfQX5s/TBICLCwRriI/AAAAAAAAACs/pCN55KiVLyU/s1600/Tanner+UCSF2.JPG"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 320px; height: 239px;" src="https://1.bp.blogspot.com/_INtPByfQX5s/TBICLCwRriI/AAAAAAAAACs/pCN55KiVLyU/s320/Tanner+UCSF2.JPG" border="0" alt="" id="BLOGGER_PHOTO_ID_5481446085204487714" /></a><div style="text-align: center;">Vitals and blood sugar checks by Super G</div><div style="text-align: center;"><br /></div><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://1.bp.blogspot.com/_INtPByfQX5s/TBIBvFVMvDI/AAAAAAAAACk/T1_PBK4uMmo/s1600/Tanner+UCSF3.JPG"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 320px; height: 239px;" src="https://1.bp.blogspot.com/_INtPByfQX5s/TBIBvFVMvDI/AAAAAAAAACk/T1_PBK4uMmo/s320/Tanner+UCSF3.JPG" border="0" alt="" id="BLOGGER_PHOTO_ID_5481445604859886642" /></a><div style="text-align: center;">T's biggest supporters</div><div><br /></div><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://1.bp.blogspot.com/_INtPByfQX5s/TBIBiEDKsyI/AAAAAAAAACc/g2_8X2hjnT0/s1600/Tanner+UCSF6.JPG"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 320px; height: 239px;" src="https://1.bp.blogspot.com/_INtPByfQX5s/TBIBiEDKsyI/AAAAAAAAACc/g2_8X2hjnT0/s320/Tanner+UCSF6.JPG" border="0" alt="" id="BLOGGER_PHOTO_ID_5481445381177520930" /></a><div style="text-align: center;">Still smiling...</div><div style="text-align: center;"><br /></div><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://1.bp.blogspot.com/_INtPByfQX5s/TBIBT7u2WHI/AAAAAAAAACU/zN3B0A1GEQo/s1600/Tanner+UCSF9.JPG"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 320px; height: 239px;" src="https://1.bp.blogspot.com/_INtPByfQX5s/TBIBT7u2WHI/AAAAAAAAACU/zN3B0A1GEQo/s320/Tanner+UCSF9.JPG" border="0" alt="" id="BLOGGER_PHOTO_ID_5481445138426648690" /></a><div style="text-align: center;">One of the tougher times.</div><div style="text-align: center;"><br /></div><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://1.bp.blogspot.com/_INtPByfQX5s/TBIBDopDnII/AAAAAAAAACM/virOCsaMWZs/s1600/Tanner+UCSF4.JPG"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 320px; height: 239px;" src="https://1.bp.blogspot.com/_INtPByfQX5s/TBIBDopDnII/AAAAAAAAACM/virOCsaMWZs/s320/Tanner+UCSF4.JPG" border="0" alt="" id="BLOGGER_PHOTO_ID_5481444858424171650" /></a><div style="text-align: center;">Time to go HOME!</div><div style="text-align: left;"><span class="Apple-style-span" style="color:#0000EE;"><u><br /></u></span></div><div style="text-align: left;"><span class="Apple-style-span" style="color:#0000EE;"><u><br /></u></span></div><div style="text-align: left;">We have had an interesting experience as we have journeyed through this clinical trial. Two steps forward and one step back. Twists and turns, ups and downs, hope and tears.</div><div><div><div style="text-align: left;"><br /></div><div style="text-align: left;">I have watched our family mature and grow in a way I couldn't have imagined before. I am so grateful our marriage has had a rock solid foundation, I have needed a soft place to fall. Our other son has taken a new role in our family, he has matured and grown deeper into his potential in a remarkable way. His relationship with his brother took on a new meaning, he has become more protective and responsible for his older brother and his younger sister. He has a new awareness in his eyes and soul that has changed the way he carries himself and expanded his confidence. Little Miss L has adapted with the ease only a spirit like her's possesses. She has taken her world changes with a grace and maturity that belies her age.</div><div><br /></div><div>And then there is T. </div><div><br /></div><div>We left the hospital on May 15th. The first few days home were spent resting up and re- cooperating from the medicines and the sleep deprivation. T didn't feel bad that first week, but he certainly didn't feel great. He didn't make it to school that week. Serum sickness hit five days after we got home. A rash, most of the blood vessels in his eyes ruptured, a mild fever, nausea, and some body aches. We started the steroids and ibuprofen and T felt better by the next day. He improved so much over that weekend that we decided to wean him off the steroids. Monday he went to school and had a great day. We were feeling pretty "bad" thinking we kicked serum sickness butt. Serum sickness proved us wrong and returned with a vengeance not seen before about 36 hours after the last steroid dose. Horrible body aches, rash, rigors and relentless nerve pain. Steroids, pain medicine, hot packs, cold packs, blankets, hand holding, and love helped him cope until relief came. We gained a new respect after being schooled by serum sickness and weaned off the steroids much slower this time. T made it to school a total of three days before summer break. One day was spent participating in a school wide water fight and play day. I am glad he didn't miss it. </div><div><br /></div><div>I am at a loss of words to portray how proud of T we are. We have admired his thought process as he researched and made his decision, admired the courage and strength it took to endure the trial process. The grace that he showed when feeling the worst he has felt in his entire life. The hope and positive attitude he has maintained on the difficult extended recovery he endured after the trial. He has never regretted his decision, and has expressed nothing but gratitude for receiving the study drug. </div><div><br /></div><div>Time will tell both the researchers and our brave boy if what he endured had the desired result. Over the next months and years if T's blood sugars remain stable and easy to manage it will be a blessing indeed. If not, the education we are receiving about diabetes management and the contributions to research are invaluable. </div><div><br /></div><div>We are so new to diabetes that we must hold onto hope. Hope that someday there is an end to pokes, carb counting, shots, doctor appointments and insurance battles. Hope that there is an end to the stress, burden, worry and fear living with this brings. Hope that there are researchers more passionate about a cure than drug companies are about a profit. Hope that there is a cure. Hope that T contributed to it. </div><div><br /></div><div><br /></div><div><br /></div><div><br /></div><div><br /></div><div><br /></div><div><br /></div></div></div></div>April Annhttp://www.blogger.com/profile/01507843616836131578noreply@blogger.com7tag:blogger.com,1999:blog-196589009348249914.post-1442222345624067792010-05-15T10:23:00.000-07:002010-05-15T11:00:52.318-07:00Infusion Days 3 & 4Days 3 and 4 past much like the first two, with the exception that we were much better able to stay ahead of the symptoms. We gave him more medicine as prevention instead of as treatment after symptoms began. He still felt pretty crappy but it was manageable. The high blood sugars continually add to the over all crappola feeling.<div><br /></div><div>T's blood sugars had steadily climbed up and yesterday the hospital meter greeted us with a rather sarcastic "HI". Not a "Hi, glad to see you," kinda "HI", more like a "HI" your blood sugar is over 500 "HI". Not cool. Especially considering he was due for another dose of steroids in 5 or 6 hours as per clinical trial protocol. Steroids have a well known side effect of causing high blood sugars, even in people without type 1 diabetes. </div><div><br /></div><div>When T entered the hospital his insulin needs were very low, thanks to his ongoing honeymoon. He took 8 units of lantus in the evening, took 1 unit of insulin for ever 45 grams of carbs for breakfast and lunch and 1 unit insulin for every 65 carbs at dinner. Sometimes he could eat without any insulin at all. He would take 1 unit for food typically and no insulin to correct his sugar. Last night he took 25 units of lantus and is now on a 1 unit of insulin for 5 carbs at meals. I will spare you all his correction calculation because my brain is mushy from sleep deprivation. Suffice it to say that it is impressive. That meant he took 29 units of insulin for correction and a no carb dinner last night. Hard to believe. I know that as he grows and his body continues to change his insulin needs will increase and that those numbers may become a norm for him. But for it to happen within 24 hours, and for him to still be battling 500 blood sugars, makes it hard to wrap my little brain around. </div><div><br /></div><div>Dr G said he had never used that ratio for someone T's age. At least we will be memorable. Dr G was uncomfortable enough (and I was freaking out enough) that he decided to scrap the last dose of placebo/steroids. I was relieved. His blood sugars have come crashing (safely) down and we hope to be back to "normal" within 48 hours or so. </div><div><br /></div><div>Our journey with thymo isn't completely over though. It has a sneaky way of hanging around and reminding you of your hope/hate relationship. Everyone who has received the study drug has a return of moderate to severe flu symptoms called serum sickness 7-10 days after infusions. A not-so-friendly little reminder to the t-cells to turn the hell off and leave his pancreas alone! </div><div><br /></div><div>I would love to write about T's awesomeness but I am too emotionally fragile right now. Too sleep deprived. Too jumbled up. Full of hope and admiration. And love.</div><div><br /></div><div>To all of you family, friends, D-parents, and people rockin' life while coping with D who have followed T and sent your love, energy, prayers and spirit- from the bottom of my squishy, mushy, full of love heart- THANK YOU. </div><div><br /></div><div>Tonight-HOME.</div>April Annhttp://www.blogger.com/profile/01507843616836131578noreply@blogger.com3tag:blogger.com,1999:blog-196589009348249914.post-54533571434551147792010-05-13T15:07:00.000-07:002010-05-13T16:42:28.006-07:00Infusion Day 2Unabridged Version.<div><br /></div><div>2am-8am Sugars are in the 300-400 range. Continually chasing highs with ever increasing insulin.</div><div><br /></div><div>8am Blood draw for study. </div><div><br /></div><div>10:30 Premeds of tylenol, benadryll, long talk with Dr. G about insulin overhaul and stacking insulin crash course for T and I. Super good info.</div><div><br /></div><div>11:25 Diabetes educator Jeanne arrives bearing gifts- a free ketone meter WITH strips. Score! Have I mentioned that we love her?! T and I also try pump sets for delivering insulin from an insulin pump. T tries the stainless steel Sure T and I try the Silhouette. We both like our choices. I feel better knowing how it feels and T thinks that the Sure T will work well for him.</div><div><br /></div><div>12:04 Main event begins. Thymo/placebo infusion begins. Completely uneventful. Vitals every 15 minutes begin. Grady the Superman nurse is back on. He rocks.</div><div><br /></div><div>1:15 Very sweet nursing student comes in to take T's vitals. She is looks like she is about 12. A Hannah Montana commercial comes on and she says, "OMG, I totally love this show, it's my favorite! I watch all the time.", completing confirming my previous age guess. Reassuring-not so much! So glad for my own experience and Grady's back up.</div><div><br /></div><div>3:00 Blood sugar 386, 6 units of insulin. T has a headache. C, L and Grandma arrive for much needed visit and snuggle time. Great distraction. </div><div><br /></div><div>5:00 T is tired, flushed, headache, Blood sugar 492. Not cool. Ordered dinner. 17 units lantus insulin. </div><div><br /></div><div>5:45 Dinner arrives. 25 units of insulin for correction and food coverage. Not gonna lie- freaks me out a bit. T is feeling crappy but ok. Hungry.</div><div><br /></div><div>7:00ish C,L and Grandma head for home. They miss Sam arriving with food and coffee by minutes. Nurse shift change. Cheryl is our slave (ERR I mean nurse).</div><div><br /></div><div>8:15 We start Princess Bride because our good friend Meri says it is the funniest movie ever and we could use a good laugh.</div><div><br /></div><div>7:45 T says,"Mom my PICC line hurts. It hurts a lot. Into my arm pit and shooting pains down my arm." Call the nurse. Explain. Worry about blood clot. Call attending physician. Check vitals and temp. Vitals ok temp is 99. Worry about administering drugs into potential clotted PICC line, knowing that the chances of it being clotted are really rare. </div><div><br /></div><div>7:55 Check PICC line and it is fine. T says, "Now my heel hurts, now my other calf, my back." Vitals, temp and realize we are dealing with thymo. The infusion finishes at 8:05. The side effects have hit T like a freight train of swine flu, bird flu and every other crappy virus on the planet. Temp is 103. 4 degrees in 10 minutes. Nurses frantically getting drugs. Demerol, benadryll and ibuprofen. I request zofran knowing that the demerol made him nauseous. Rigors, fever, severe body aches. Get the demerol and benadryll onboard. And then our favorite crappola side effect vomiting joins the thymo-wreaking-havoc party. The zofran just wasn't in time. Because of nausea, T couldn't take ibuprofen to help alleviate symptoms. Everything happened so fast. The staff worked really hard to help out and get things under control. Unfortunately, when things fall apart that fast catching up to the symptoms takes time and is more challenging. </div><div>I have never seen T this miserable. DKA looked like a mild cold. T was never in danger as far as his safety like during DKA, his vitals were stable and EKG was fine. He just felt the WORST he has ever felt. I spoke with Dr G at 10 to weigh our options. Trial protocol requires an administration of steroids/placebo (at this point who am I kidding-steroids!) at 12 hours after the beginning of the infusion. Steroids would greatly eliminate the side effects. I hated to give him a dose at ten and then have to dose him again because of protocol 2 hours later. That said, I was ready to do ANYTHING to make him feel better. This was too much to ask. I had been wracking my brain and asked Dr. G about a drug called toradol (sp?), it is an NSAID like ibuprofen but can be administered by IV. I agreed to the steroids and asked for the toradol as well. </div><div><br /></div><div>10:40 T has had a change for the better. He is able to talk again a little and even managed to smile. He is so strong. I can't even describe how incredibly impressed his family and the staff here are with him. We get the toradol on board. Vomiting still. Blood sugar has gone from 480 to 150. Remember the 25 units of insulin on board. Not cool. Decide to hold off on steroids hoping toradol saves the day. Toradol just maybe T's new BFF.</div><div><br /></div><div>12:04 Steroids. T still feeling crappy. Went from a 9 (scale 1-10) to a 7. I would sure hate to see his ten. Blood sugar 115- nausea subsided enough we decide to have him eat 2 licorice sticks- 20 carbs. </div><div><br /></div><div>2:00 T finally has some relief and feels much better. Sleep. </div><div><br /></div><div>3:00 Blood sugar389. Hello steroids. </div><div><br /></div><div><br /></div><div>The worst should be behind T. Typically the first two days are the hardest. Most people do better with the third and fourth day infusions. We will be even more diligent today as infusion day 3 progresses. Now that we know how symptoms can sneak up from nowhere we will be premedicating with bigger guns sooner. </div><div><br /></div><div>T and I spoke this morning-I reminded him that this was voluntary and at any point he could unvolunteer with our full support and admiration. He looked at me and grinned' "Are you crazy Mom? I'm half way through- I'm going all the way." I knew what he would say before I asked. </div><div><br /></div><div><br /></div>April Annhttp://www.blogger.com/profile/01507843616836131578noreply@blogger.com5tag:blogger.com,1999:blog-196589009348249914.post-51479163014764656072010-05-11T22:29:00.000-07:002010-05-11T23:46:56.497-07:00Infusion Day 124 hours- the Abridged Version<div><br /></div><div>12:00 Am Blood Sugar Check and vitals. 182. Coming down. T is sleeping. Working on blog knowing I should be sleeping. Fake chair bed isn't looking all that inviting. </div><div><br /></div><div>1:30 Lay down on parental torture device(PTD) also known as chair bed. Finally drift off into semi sleep and dream about the frogs at my parent's pond keeping my Dad up. I know weird!</div><div><br /></div><div>2:00 Blood sugar check and vitals. T sleeps through- how I don't know, but he does. 136. Much better. Drift in and out of sleep.</div><div><br /></div><div>4:00 You guessed it- blood sugar check. 117. Leave him alone knowing that he always creeps up a bit between 4-7 am. T slept through-again! </div><div><br /></div><div>6:00 Time for lab draw for clinical trial. Took about 6 vials of blood. Got lucky- no finger poke this time. Blood sugar 137. See, told you he goes up a bit every morning. Usually he is 120-130.</div><div>Full set vitals. T wakes up this time. We both lay back down, knowing that the next time he wakes up it will be time to start the infusion. We just have to wait for the labs to come back.</div><div><br /></div><div>8:30 Nurse comes in to premedicate T with tylenol, benadryll and prednisone (steriod)/placebo. I wipe the drool off my cheek hoping he doesn't notice. The print imprinted on my face from the PTD is a little more conspicuous. T takes the pre-meds and orders breakfast. I attempt to become presentable and go get COFFEE.</div><div><br /></div><div>9:00 Blood sugar check (117), carb count, insulin and T eats breakfast. </div><div><br /></div><div>10:00 Labs are back and it's infusion time. The bags are hung and connected to the PICC line. This is really it. T is optimistic and a little apprehensive. I am a jumble of emotions and find myself holding back tears. Not really sure what to feel. Dr. Gittelman is here and we chat for awhile. I like him. So does T. </div><div><br /></div><div>10:15 Full Set of vitals. For the first 8 hours of the infusion a full set of vitals are taken every fifteen minutes. I will spare you all posting that every fifteen minutes. T had his own exclusive nurse named Grady today. He was awesome and took great care of T. He was here like clock work and at our beck and call. Awesome.</div><div><br /></div><div>10:45:T announces he has headache. More tylenol and ibuprofen. Blood sugar check. 266. Hhhmmm. Dr. Gittelman comes in to check on T and does full exam. More talking. I like that he completely includes me and my opinion about meds and management. </div><div><br /></div><div>11:45 T feels "funny". Blood sugar check-346. Order lunch. Lunch arrives, carb count, insulin with correction, and eat. Headache is still there. Dr Gittelman again. </div><div><br /></div><div>1:00 Diabetes educator comes by. She is awesome and has type 1 herself. She gets it. We REALLY like her. We chat for a long time.</div><div><br /></div><div>2:00 Dietitian comes in. Sort of redundant but a very nice woman. We chat awhile. More tylenol, T still has headache. Still doing full vitals every fifteen minutes. </div><div><br /></div><div>3:00 Hospital teacher comes by, T is not really feeling up to work or going to the classroom. I can see just how disappointed he is to not do homework. (I can't figure out how to write in sarcasm yet) T is feeling disappointed, starting to doubt he received thymo. We chat. I still think it is too soon to know. Blood sugar check-can't remember. It was over 300 and T can sure feel it.More ibuprofen for headache.</div><div><br /></div><div>4:30ish T has changed. He is not quite as chipper. Flushed. Headache is increasing. Fever. Chills. Achy. Overall starting to feel pretty crappy quite suddenly. Dr. Gittelman came right in and we started going over options. Hooked T up to EKG machine and oxygen sensor as a precaution. Full physical assessment. Decided on demerol, the other option being steroids. Sugars are still in 300+ range. Decide to change insulin ratios and correct more often.</div><div><br /></div><div>5:00 Nausea. Zofran (anti nausea drug) Going to have to postpone dinner a little while.</div><div><br /></div><div>7:00 T is laughing hysterically and a little too loudly at America's Funniest Home Videos. Safe to say he is feeling better. Sam arrives with dinner and COFFEE. He is my hero. T checks blood sugar, 206, carb counts, insulin with correction and eats.</div><div><br /></div><div>8:30 Dancing With the Stars and hanging out. T is feeling better but highly medicated. He will continue to receive tylenol, ibuprofen and benadryll on a rotating schedule from here on out. Text back and forth with C. I miss him and L. I am so grateful my mom is there to make this easier on them. My parents have been amazing support for our family. Not sure what we would do without them. </div><div><br /></div><div>9:00 T's skin is hyper sensitive and feels strange to him. No rash. Change dressing on PICC line and another blood sugar check. More vitals. I shower because I am embarrassed to be in public anymore and because I want the nurses to like me- not smell me. I almost feel like a human again when finished.</div><div><br /></div><div>10:24 First infusion officially ends. T will be closely monitored tonight. Hoping for an uneventful night. Side effects seem managed at the moment. Hoping he can get some sleep. </div><div><br /></div><div>Blood sugar checks and corrections will happen every three hours tonight and vitals, temp, etc every hour. </div><div><br /></div><div>Infusion starts again tomorrow morning. Todays infusion was set for 12 hours. Tomorrow he will receive the same amount in eight hours. We will take it one minute at a time. While T is feeling confident he received thymo, I am still cautiously optimistic. Honestly, sometimes I don't know what to wish for. Thanks for all the love, we can feel it. </div><div><br /></div><div><br /></div><div><br /></div>April Annhttp://www.blogger.com/profile/01507843616836131578noreply@blogger.com3tag:blogger.com,1999:blog-196589009348249914.post-42084341592200161932010-05-10T22:51:00.000-07:002010-05-11T01:24:26.269-07:00UCSF Is a CitySo here we are, Day 1 down.<div><br /></div><div>Our day went something like this. 24 hour version</div><div><br /></div><div>Finished packing and bookwork at 1 a.m. Climb in bed exhausted.</div><div><br /></div><div>2:30 am Crazy dream that if I shared here might result in many of you no longer following my blog and possibly to stop associating with me. I will spare you the details. </div><div><br /></div><div>3:30 am Blood sugar check. 145 Sleep.</div><div><br /></div><div>5:30 Dog and husband snoring and I have no covers. </div><div><br /></div><div>6:00 Why bother?! COFFEE! Got up and finished packing and food preparation. </div><div><br /></div><div>6:30 T is up and showering. </div><div><br /></div><div>7:00 Blood Sugar, carb count, insulin, breakfast. C up and getting ready for school and the big track meet.</div><div><br /></div><div>8:00 COFFEE and hitting the road. Traffic.</div><div><br /></div><div>9:25 Minor freak out in claustrophobic, scary parking garage. Driving around in garage made for mini-coopers in a suburban in circles. Realize I might have had too much coffee. Found a spot on the pink floor by #71. Accidentally go down in the elevator and should have gone up. Go up and get out of elevator and walk down some stairs to get on another elevator to go down to street level. Yes, it is designed that way and no, there are no signs. I need GPS to get out of the parking garage. T is cool and calm; me, not so much I'm but I'm pretending to be.</div><div><br /></div><div>9:30 Bathroom and yep- you guessed it- COFFEE. 'Cause I am just not quite wound up enough.</div><div><br /></div><div>9:45 Arrive </div><div><br /></div><div>Follow our handy-dandy instructions perfectly through the maze of hallways to the appropriate set of elevators and up to the sixth floor. Check in with spunky woman at elevator and tell her that we are here for clinical trial. T doesn't exist in paperwork but she says that's ok- go ahead. Wind our way back through multiple hallways to the Pediatric Clinical Research Center. Check in with nurses. They know who T is and take us to our room. Cool. T is joking and making small talk with nurses. I'm feeling pretty good and kinda relieved. Weight, height, blood pressure, temp, questions. We even have a view.</div><div><br /></div><div><br /></div><div><br /></div><div><br /></div><div>10:15 Nurses realize that we didn't go to admitting. That was not on my handy-dandy instruction sheet. Apparently, they think you should just know that by osmosis or something. I don't learn that way- I learn by reading. So off to admitting. The nurses say as soon as you are done head back up here.</div><div><br /></div><div><br /></div><div>11:45 FINALLY done at admitting. Apparently- our room- that had all our stuff (except our food) in it "wasn't ready yet". So typical hospital. Paper work and hurry up and wait. Receive picture of C running in the pouring rain with huge grin on his face at his track meet.</div><div><br /></div><div>12:00 Arrive at our room that is still full of our stuff that wasn't ready. Dr. Gittelman and clinical trial nurse come in for final consent form to be signed. All my "what if's" resurface. T is cool, calm and collected. T checks blood sugar 130.</div><div><br /></div><div>1:00 Ask about ordering lunch. Told we need to wait because his orders for insulin haven't been made yet and diabetes nurse needs to go over insulin/carb ratio. Find out C's track meet had been rained out. :(</div><div><br /></div><div>1:45 Insulin orders are now in and T can order his food. Gee thanks. Pick up phone to order food. It's dead. Pull on the cord and it ends in frayed wires. Not so convenient for ordering lunch. They put an order in for a new phone. I ask them to please order him some food. It's not like he's diabetic or anything. I know that they are coming to do the PICC line anytime and am afraid to leave to go to the truck to get food or to go to the cafeteria. Hospital law is that regardless of long you have waited to go to the bathroom, eat or shower, when you leave your kid alone for more than 2 minutes, the doctor or procedure you have been waiting for shows up. </div><div><br /></div><div>2:00 PICC specialist arrives and off we go to a sterile room. A PICC is a long catheter that is placed in a vessel in the upper arm that extends into the vessel in the chest cavity. They use ultrasound to guide the catheter into place and x ray to confirm it is placed correctly. It is very uncomfortable. T refused pain meds and opted for a local injection. Because T is thin and his vessels healthy and strong it wasn't an easy placement. He is so awesome. He did great. Calm and collected through the whole ordeal.</div><div><br /></div><div>2:40 I can tell by looking at him he is going low. 85, not terrible but he needs food. Get back to the room, check blood sugar, count carbs, insulin and finally- he gets to eat.</div><div><br /></div><div>4:00 Nurses change shift and we go over everything we have been over six times- again.</div><div><br /></div><div>5:00 T watches Batman (thanks Meri!) while I disinfect the room and then read a bit. Work on blog.</div><div><br /></div><div>6:30 T and I go up to the Teen Lounge for a little Rock Band II on PS3. T rocked the '80's.</div><div>Order dinner. Much smoother with operating phone.</div><div><br /></div><div>8:00 Back to the room. Blood sugar check 98, carb count, insulin, eat. </div><div><br /></div><div>8:45 Sam arrives for a visit. I go to find some food for myself and get completely freakin' lost. For a woman who grew up in a village of 1200 people UCSF is a like a big city. Much of the hospital is under construction and being painted so many of the signs are missing. Thank goodness everyone here has been kind and helpful and not teased me to badly! Miraculously arrive back at the room and watch a little Dancing With the Stars and catch up on our day. Get picture of L in her favorite Dancing With the Stars out fit on. So cute. Text C goodnight.</div><div><br /></div><div>10:45 Sam heads home. Blood sugar check 345. WTH?! Wash hands and recheck. 342. Hhhmmm. Highest he has been since the week we left the hospital. Either the hospital can't carb count or his sugar are reflecting his stress. I allow a half a correction to prevent an overnight low. Only meds he has had is tylenol. Any d-moms know if it can spike blood sugar?</div><div><br /></div><div>11:30 I think I am done for the day, T is sleeping. Will check sugars at 12:30 and 2:30.</div><div><br /></div><div>Blood draw at 6 am and pre meds of tylenol and benadryl. First infusion of thymoglobulin or placebo starts around 7 am. </div><div><br /></div><div>Thank you everyone for you support and thoughts. I will update as I can. I can't put into words how brave I think T is for doing this. We love him so much. Thanks for following us on this journey.</div><div><br /></div><div> </div><div> </div><div><br /></div><div><br /></div>April Annhttp://www.blogger.com/profile/01507843616836131578noreply@blogger.com6tag:blogger.com,1999:blog-196589009348249914.post-85574913912017761352010-05-07T00:36:00.000-07:002010-05-07T02:04:08.804-07:00It's Official-the Clinical Trial is ON!If you had told me three months ago that I would be voluntarily signing my son up for a clinical trial, where he would receive a drug that was used for organ transplant rejection and chemotherapy I would have told you to take a flying leap from a very tall building without a parachute. I would have said "not unless hell freezes over". I would have said NEVER. Just like the time Sam wanted to live on 30 thousand-some-odd acres and take care of a bunch of wild cows (which we did) and just like when he decided that we should move to California (which we did). I am going to stop saying NEVER.<br /><br />Over the years we have worked hard to teach the kids about how to stay in tune with their bodies. We have stressed how important it is to take care of themselves and have educated them to be responsible for their own health care. Doctor's and medicine don't heal people, they support the body to heal itself. We have focused on teaching them to question, research and advocate for themselves. To always trust their own instinct and follow their gut feelings.<br /><br />While T was still in the hospital dealing with complications of his diagnosis with diabetes I was all ready researching. The last day of our hospital stay we were presented with clinical trials that were available for kids newly diagnosed with type 1. They presented the options to us and a lot of paperwork to read over.<br /><br />Deciding to do a clinical trial is a process. T is 13 and the ultimate decision is his. This is his body and his choice. We talked it over and he was very interested, so the research and questions began. There were three separate steps to take to be included in the trial. The first was a series of blood tests, the second a test for tuberculosis and the third a Mixed Meal Tolerance Test (MMTT). The MMTT test is to help determine if T's body is still producing any insulin on it's own. T met all the criteria of the trial. The medicine must also be administered within 100 days of diagnosis.<br /><br />In order for any of this to make sense you will need some background info. Type 1 diabetes is an autoimmune disease. T cells are a part of your immune system that help fight viruses, infections etc. and sometimes these cells go rogue-they don't switch "off" when they should and they attack the cells in the pancreas that produce insulin. When this happens and enough cells that produce insulin are killed, symptoms of diabetes occur. Insulin is the bridge between your cells and the sugar that they need to function. After someone is diagnosed and starts to get insulin they often have what is called a "honeymoon" period. The rogue t-cells haven't destroyed all the insulin producing islet cells yet and the pancreas still produces some insulin. Some people still have up to 40-60% of the islet cells still functioning. This makes diabetes easier to manage.<br /><br />The drug used in the trial is called thymoglobulin. There will be 66 people in the United States enrolled in this trial before it ends. T will be number 23. This is a double blind placebo trial. The doctors and patients won't know if the patient is getting the medicine or a placebo. 2/3 of the participants get the medicine and 1/3 get a placebo. Thymoglobulin has been used since the 1980's and is a pretty safe medicine, however it does have side effects that make you feel like you have a bad flu. They are temporary and go away when you stop taking it. The medicine is given in the hospital over several days into a special IV called a PIC line. Thymoglobulin is being studied because scientists and doctors believe that it may "reset" those rogue t cells of the immune system and turn them "off" so they stop attacking the pancreas. Hopefully this will extend the "honeymoon" period.<br /><br />Scientists and doctors recently announced that they were able to create human pancreatic islet cells that produced insulin in mice. This is a huge break through. They need to study thymoglobulin to see if it prevents the immune system from attacking these pancreatic islets cells. It won't do any good to replace the cells if the body destroys them again. The trial is designed to compare people receiving the medicine to people receiving a placebo during their honeymoon phase. The hope is that it will stop the t cells from attacking the remaining insulin producing cells, preserving them and making diabetes easier to manage.<br /><br />Thymo is a safe, but serious drug. Participants who recieve the drug also get steriods and antibiotics to manage the side effects. Participants who get the placebo get identical appearing medicines that contain no active ingredients. Most participants who get thymo feel like they have the flu for the first few days of getting it and then 10-14 days later they feel like they have the flu again.<br /><br />T will be admitted to UCSF on Monday at 10 am to start the trial. The decision has been agonizing at times, but I feel more comfortable with it than I ever thought I would.<br /><br />Deciding to participate in this trial has been a challenging decision. Probably the most difficult one I have ever made. We have talked and researched and questioned endlessly. T has been very involved and has asked educated, poignant questions. I am hesitant to speak for him because he has had his own journey in making his decision. His reasoning for participating is sound and difficult to argue. I have "what if'ed" myself to misery on many occasions. I have always told the kids to trust their instincts and I am proud to say that he is. Deep down, I knew he would participate and that we would support him. Every time the word "NEVER" screams in my head I know it is time to check in with myself. Some of "my stuff" is coming up. When it happens it usually means that I am afraid to follow my gut instinct. Eventually, through processing, soul searching and introspection I come around and then I am all for it. <br /><br />Now when the fear creeps in and the "what if's" start I always end it with "What if- it works?"April Annhttp://www.blogger.com/profile/01507843616836131578noreply@blogger.com10tag:blogger.com,1999:blog-196589009348249914.post-21691520250760620852010-03-31T16:00:00.000-07:002010-03-31T18:17:03.143-07:00The RideI have been fortunate to have some wonderful mentors and advisers in my life. I have received<br />guidance and counsel from my amazing husband, my family, my friends, my clients that I have been honored to attend, and the occasional unknown stranger with the right comment at the right time. I believe many of my most poignant realizations about myself and life have come from none other than my children.<br /><br />Our family has lived an incredible journey so far, varied and diverse. A life many are surprised at after they have met us, not knowing our history. A life I love and am fiercely proud of. Our lifestyle is unique, to say the least. Somehow everything in our life is processed and related back to either birth, because of my passion as a doula; or horses, my husband's passion as a farrier. Diabetes is no exception.<br /><br />Farrier- not sure what that is? Neither is the rest of the non-equine world. Putting it very simply, he puts horseshoes on the feet of horses. A modern day blacksmith. My husband is a genius at what he does, combining science and art for the health and well being and performance of the horse. He is passionate about what he does and has a well earned reputation for his expertise. Unlike England and Europe, horsehoeing in America is unregulated and no formal education system or accreditation system exists. My husbands passion for education and advancing his skill has set him on the path to obtaining the recognition and accreditation required in England to shoe horses. The test for obtaining an Association for the Worshipful Company of Farriers is grueling and demanding. He studied for over a year and when the opportunity to take the test in America for the first time ever presented itself in a small town in Missouri, my husband signed up. He studied for months and practiced building the handmade shoes every spare moment. We worked hard as a family to support him.<br /><br />Our oldest son T has always been interested in shoeing horses. The kids all go with Sam to work during the summer and breaks, traveling around meeting people and visiting with longtime clients and hanging out at the barns. Many of our clients have watched the kids grow up over the years. T and C both have several hundred dollars saved up from working with their Dad. T is especially interested and spent many hours helping Sam study and forge shoes out of straight metal bar stock.<br /><br />"So, what does all of this have to do with diabetes?" you ask- hang in there with me, I am getting to it.<br /><br />As a teenager obsessed with animals and horses and cowboys I started listening to country music- mostly to piss off my Dad. (It worked, he detested country music.) I must admit, my own taste has changed dramatically since then and my rebellion mostly wore off. One artist that I still love is, Chris LeDoux; more cowboy poet and storyteller than country singer, his songs have marked many poignant events in our life. Our wedding, birthdays, parties and special memories of a ranch living lifestyle left behind are fondly reminisced every time I hear his music.<br /><br />Back to the test my husband spent so much time and energy studying for. I went with Sam to Missourri to support him for the exam, leaving the kids in California in the competent care of my Dad. The morning the exam started my husband was more nervous than the day we got married. Just before going in to start the exam, he got the following text message from T. An excerpt from a song by Chris Ledoux we all love. It said,<br /><br />"Sit tall in the saddle, Hold your head up high<br /> Keep your eyes fixed where the trail meets the sky<br />Live like you ain't afraid to die<br /> And don't be scared, just enjoy your ride"<br /><br />That verse was exactly what my husband had needed to here. It wasn't about the test, it was about the journey. When I couldn't come up with any words of wisdom, our son who was twelve at the time, provided the perfect wisdom at the perfect time.<br /><br />This last week has been a rough one. Diabetes is consuming. The fear of the unknown crippling. There have been terrible events recently that prove how horrible this disease is. The grief at times has felt overwhelming. This disease and what it is capable of sit like a foreboding shadow in the back of my mind, showing itself in my weak and vulnerable moments.<br /><br />We have cried, raged, grieved and cried some more over the pain this disease causes. And yet, life keeps going. We have played, laughed, loved and kept living. Diabetes takes precious time away. Time spent carb counting, weighing food, planning, logging, testing, learning, worrying, the list goes on and on. Time that just a short while ago was taken for granted. Time spent free from the weight and constant vigilance this disease demands. I won't let diabetes take one more second than it requires from us. Not. one. second. So when I can't come up with any words of wisdom and comfort, words of hope. I will take another life lesson from our son and Chris Ledoux.<br /><br />"Sit tall in the saddle, Hold your head up high<br /> Keep your eyes fixed where the trail meets the sky<br />Live like you ain't afraid to die<br /> And don't be scared, just enjoy your ride"<br /><br />Thank you for sticking with me on this one. I know it took a while to get there.April Annhttp://www.blogger.com/profile/01507843616836131578noreply@blogger.com8tag:blogger.com,1999:blog-196589009348249914.post-59842116345357841482010-03-19T12:31:00.000-07:002010-03-19T14:04:06.546-07:00A Month Ago I Didn't Know...<span class="Apple-style-span" style="font-family:arial;"><span class="Apple-style-span" style="color:#330000;"> A month ago I didn't know hardly anything about Type 1 diabetes. I didn't know that it would put our healthy, active, intelligent, amazing boy in the hospital fighting for his life a mere thirty four days before his thirteenth birthday. I didn't know how grateful I would be for a diabetes diagnosis, grateful it was something we could educate ourselves and learn to manage. Grateful that we had so much support and love from the hospital staff, our family and friends, and from other patients and their families in the ICU, who gave us insight and a perspective that made our diagnosis much easier to cope with. </span></span><div><span class="Apple-style-span" style="font-family:arial;"><span class="Apple-style-span" style="color:#330000;"><br /></span></span></div><div><span class="Apple-style-span" style="font-family:arial;"><span class="Apple-style-span" style="color:#330000;"> I didn't know that he had every sign of diabetes for the two weeks previous to ending up in ICU. Hungry all the time, thirsty, frequent bathroom visits, less energy, leg cramps, heartburn, more stressed. Of course he's hungry- he's grown two inches in six months; of course he's thirsty-he's finally drinking water the way we have drilled into him for the last ten years; of course he's peeing a lot- he's finally drinking!; of course he's tired- remember he grew two inches in six months! The little voice in my head (my instinct, my internal wisdom, the voice I tell all my clients to never ignore) kept saying... "there is more to this... something is wrong..." Instead I scheduled an appointment for him when we got back from our trip. Three days before ICU, I even told my husband and best friend that T had signs of diabetes, but dismissed it because the idea seemed, for lack of better words, absolutely absurd. Not our family, not our son. </span></span></div><div><span class="Apple-style-span" style="font-family:arial;"><span class="Apple-style-span" style="color:#330000;"><br /></span></span></div><div><span class="Apple-style-span" style="font-family:arial;"><span class="Apple-style-span" style="color:#330000;"> Two days before he became so seriously sick he took his second degree brown belt Shotokan Karate belt test and passed with flying colors. The next day he was tired. It made sense, he had worked hard. The next Monday he went to school, although he looked exhausted. We had planned on leaving that day for a business trip with the family. I picked him up from school and knew that the trip wasn't going to happen. Something was wrong. He looked gaunt, skeletal, anorexic. He said he was tired and his legs hurt. He had heartburn, and a stomach ache. He smelled strange, although it took me a while to recognize the smell. Like super ripe fruit-right before it goes bad. I attend women in labor and happen to be one of the people with a genetic ability to smell ketones. I have smelled ketones on pregnant women with diabetes and on women in labor. I didn't connect the smell to T until we were at the ER. Then it all made sense. </span></span></div><div><span class="Apple-style-span" style="font-family:arial;"><span class="Apple-style-span" style="color:#330000;"><br /></span></span></div><div><span class="Apple-style-span" style="font-family:arial;"><span class="Apple-style-span" style="color:#330000;"> DKA hit T hard. Diabetic Ketone Acidosis is a condition where high blood sugars create a serious chemical imbalance of the blood. The body's pH becomes eschew; creating a host of serious potential complications, including seizures, heart rhythm issues, brain swelling, coma, and yes, sometimes death. T's blood chemistry values looked pretty bad, his doctors and nurses were shocked he wasn't in much worse shape. His body was strong and did a lot of compensating for his condition. It took three days in ICU and two and a half days on an insulin drip with constant fluid replacement changes to get him stable. </span></span></div><div><div><span class="Apple-style-span" style="font-family:arial;"><span class="Apple-style-span" style="color:#330000;"><br /></span></span></div><div><span class="Apple-style-span" style="font-family:arial;"><span class="Apple-style-span" style="color:#330000;"> An A1C is a blood test that measures the average blood sugar in a diabetic for the last three months. T's was 14. Yep, 14. Ideal is 6.5 to 7.5 for his age. The scale doen't even go past 14. His average blood sugar had been over 400 for the last few months. "Normal" is between 80-180. At least we have lots of room for improvement!</span></span></div><div></div></div><div><span class="Apple-style-span" style="font-family:arial;"><span class="Apple-style-span" style="color:#330000;"><br /></span></span></div><div><span class="Apple-style-span" style="font-family:arial;"><span class="Apple-style-span" style="color:#330000;"> In the meantime, we became students of diabetes. Learning, questioning, drilling educators, doctors, nurses and the occasional stranger in the cafeteria, elevator and hallways. The more I knew, the less scared and out of control I felt. The more I knew, the better I felt. The more I knew, the better we could cope and the sooner we could go home to adjust to our new normal life. </span></span></div><div><span class="Apple-style-span" style="font-family:arial;"><span class="Apple-style-span" style="color:#330000;"><br /></span></span></div><div><span class="Apple-style-span" style="font-family:arial;"><span class="Apple-style-span" style="color:#330000;"> The diabetes learning curve is steep and demanding. Carb counting, blood work deciphering, short acting, medium acting and long acting insulins, blood glucose meters, insulin adjustments, syringes, insulin pens, insulin resistance, highs , lows, rescues and recoveries, honeymoon periods... the list goes on and on. Then you take all that you learn and try to apply it to a human being that is never static and always changing. Emotions, puberty, sleep patterns, food processing and hell, lately blinking seem to change everything we have just figured out. </span></span></div><div><span class="Apple-style-span" style="font-family:arial;"><span class="Apple-style-span" style="color:#330000;"><br /></span></span></div><div><span class="Apple-style-span" style="font-family:arial;"><span class="Apple-style-span" style="color:#330000;"> We are home and honeymooning. T is gaining back the 15 or so pounds he lost. Insulin doses are dropping dramatically and sugar consumption is rising dramatically. Lows, lows and more lows. I am sure as soon as we figure it out-it will change!</span></span></div><div><span class="Apple-style-span" style="font-family:arial;"><span class="Apple-style-span" style="color:#330000;"><br /></span></span></div><div><span class="Apple-style-span" style="font-family:arial;"><span class="Apple-style-span" style="color:#330000;"> A month ago I took for granted how mature, brave and wise our son is. I didn't know how supportive, and brave his siblings are. I didn't really know who I could depend on among my family and friends when life throws an unexpected obstacle our way. I didn't know how profoundly, we as a family have touched the lives of those we love. I didn't know how grateful I could be to the people that have supported us and loved us through this time. I didn't know the depth of worry and love we could have as parents for our children. I didn't know that a T1 diagnosis would introduce us to a whole new community of warm, loving, supportive people we never would have otherwise met. A month ago I didn't know I had room for one more cause in my life... now I do.</span></span></div><div><div><br /></div></div>April Annhttp://www.blogger.com/profile/01507843616836131578noreply@blogger.com20