Wednesday, February 18, 2015

The Robot is in the Bag

    If you read this blog often then you know that I am involved in FIRST robotics. It is an amazing program to get high school students involved in STEM programs for college. Last night was the last night we could work on our robot before our first competition. It has been an up and down season but we did get a working robot that can compete and it seems well put together. We put our robot in the bag last night. This keeps teams from working on the robot past midnight on the last build day. We have what we have now. Let the games begin.

    Our first competition is in two weeks and we will see just how well our design does. It is exciting that we did get our robot done and it seems to work well. This has been a fun year with a lot of hours. I don't have to feel guilty about helping. It has been breathtaking to be involved without the guilt. I will keep you posted on how we do. I am a little sorry that William wasn't there last night to see it moving. He will get his chance very soon.

Here is to the fun,

You Loving Dad

Thursday, February 12, 2015

Valentine's Day at School

    It is Valentine's Day at school for William. It seems like a strange day to have it but that is Okay. This is a school holiday that I still have to worry about every year. It is not because I forgot to get the cards for his classmates. We have those and the suckers that go with them. It is not because I can not find the class list because this year we did not have one. He just had to put "from William" on all of them. It really does make that easier. It is another holiday where candy is the major part. I never realized just how many holidays require something sweet as part of the day like Halloween, birthdays, Valentine's Day and may others. Almost every holiday or special day is centered around food or candy. You become acutely aware of this being the parent of a diabetic child and more so for one that has celiac disease as well. I always need to check if it has wheat and then how many carbohydrates does it have.

    William's class is having snacks as part of the celebration for today. They are having fruit, crackers, cheese and sausage. His teacher told me yesterday that they also get to play a game where M&M's are the reward for the correct answer. We do not have a school nurse at his school as most of them in Michigan do not anymore. I told his teacher that William could have the M&M's if they gave him the correction dose for them. Everything is usually labeled in William's lunch. The staff does not really ever need to look up the carbohydrates for the food that he eats because it is written on it with a black marker. I try to keep it as simple as possible. Today will be a big day where he can get a reward the same as everyone else. I told them to call me if they have any issues with understanding what they need to do. He will probably get a cupcake that we keep for him at the school (frozen in the freezer) and some cheese and sausage (both free and no wheat. That means that they have no carbohydrates so they need no insulin). He will get to feel the same as everyone else except the washing the hands for the finger poke and the insulin from the pump for food before he can eat.

    Holidays are so different for us and for everyone else that has this same struggle. Nothing is easy when it comes to food, and that is our life. It is tough sometimes being a full time pancreas. I am glad that I am keeping him alive and it really makes me appreciate what my body does all by itself.

Happy Valentine's Day everyone and thank your pancreas while your eating that candy,

Your Loving Dad

Wednesday, February 11, 2015

A Few of my Favorite Bloggers

    There are a few other bloggers that I follow. They bring up great topics that really make you think. They have had tough lives. Mari is an example of how strong you can be when someone close has died and she is left to care for three boys with type 1 diabetes and one without. Using magic to calculate her boys doses. She also tells about handing over the controls to her now older boys. This is something that I see coming and I am not sure I am looking forward to. She battles the loss of her great friend and partner and fights through and is strong for her boys. This is a commitment that I hope to have in my life someday but one I have for my son regardless. I know how hard it is to take care of one boy with diabetes and celiac. I could not imagine all of the lost sleep for three or two in some of the other cases. 

    Then there are the bloggers that have been diabetic for a long time. Kerrie is one of my favorites. She is very frank about how she feels about what happens to her when she feels high or low. The things that she has to do to keep up with life and what happens when she can't. She does all of this while taking care of her daughter and traveling a lot. I enjoy reading her blog and miss it when she takes time off or gets busy. There are so many entries that make me smile. She has a real way of making you laugh about some of the worst things diabetes has to offer. Then there are the stories of her daughter and batman princess. You can not help but smile.

    Then there is the Tom the Diabetes Dad that is a great advocate for his daughters and for the rest of us in this grueling fight. I have seen new gadgets and have heard about new research and new devices from them. They meet interesting people and go to conferences that allow them to connect more readily to OUR community. That is the community of diabetes. I am glad to have him on my team. He talks about things that we might not talk about. He puts people in front of us that we may not know. These people are not afraid to show the world that they are diabetic. Inspiring stories of success in spite of diabetes.

    I also enjoy meeting some of the more local people that are in the same place. Tim is a local dad with two daughters that have type 1, one that does not and a new baby. The epic journey and the feeling of helplessness that we all have at times. It is great to see how we deal with this journey and to know we are not alone.

    I was recently asked who reads my blog. My answer was I do not know. I see where a person is reading in the world on a very macro scale. The areas I have had people visit from are kind of cool: United States, Canada, Poland, Australia, Germany, Austria, United Kingdom, France, Belgium, Slovakia, Taiwan and Norway. I started this as a way to let William know about his childhood. I want to remind him of a time when he had diabetes (this assumes a cure). I want to let him see his life through my eyes. I think it would have been cool to go back and to see what my father thought about my childhood. To be able to see his feelings on things and to understand why we did things the way we did. I hope that I can be a good example for my son and that he grows up proud of who we both became along the journey.

Thank you for reading about us,

Your Loving Dad

Tuesday, February 10, 2015

100 Days at School

    It has been 100 days at school this year. William's class had a celebration to commemorate the day. They had snacks, read books,  and played games. William could not eat most of the treats that came in because of the celiac disease and also because no one at school knows how to count carbohydrates. When William goes to school everything is clearly marked with the carbohydrates so the ladies at the front desk can tally them and put the number into the pump. It is the best that we can expect for our school since there is no nurse. The ladies at the front desk do a great job of taking care of William but they do not really understand the disease.

    When something is out of the ordinary they call me to see what they should do. I can usually talk them through what ever the problem is, but when I can not the school is only a few minutes away from my work. There have been times when I have had to go in to change a site or fix a pump that is not delivering insulin. I also made a care sheet for William that is kind of like an owners manual. It tells the ladies at the front desk to give him candy and how much for different levels when he is low. To give him water and a correction dose when he is high and when to call me if there is a problem. We have been doing this for two years now and it seems to be working great.

    When we started school there was a lot more to think about then a normal school student. We had to worry about a 504 plan. That requires you to sit and think about the worst things that could happen to your child everyday. What happens for a lock down at school? What if he goes low and passes out? Fire drills, playground problems and everything else. Fortunately the internet is there and many people before us have had to think about this stuff too. I would not have thought about a lock down at school. It is smart to do so because if you don't he might not have access to needed supplies if caught without is bag. A lock down can last for many hours. If your child gets stuck somewhere with no access to food or candy or glucagon then they could die because of the lock down. William has a bag that he takes with him everywhere he goes at school. It has his meter, candy, snacks, glucagon and a change for his insulin site. Mot people only have to worry if their child get hungry in a lock down. I have to worry if he will die.

    William also has snack times that are the same everyday at 10am and 2pm. This give us a chance to test him and also to keep carbohydrates in his system. Keeping him on this schedule really seems to help control his blood sugar throughout the day. He is tested four times while at school. I have gotten him tuned in for most days. That is always an ongoing thing but I am glad that I know that the staff at school is there to call in a monemts notice if something goes wrong and they do.

Thank you Karen and Julie,

Your Loving Dad  

Thursday, February 5, 2015

Keeping up with Diabetes Between Two Houses

    William now splits his time between two houses. One week with me and one with his mom. It makes keeping up with his numbers and changes to his pump a little harder. This is especially true because his mother does not talk to me to keep me in the loop on what she is doing for anything. I try to discuss schedules, doctors appointments, school and many other things about William. I get the same response most every time.... nothing back.

    When William gets to my house I usually go through his pump to see how his numbers have been for the days that he was away. I also check to see if his mother is getting up to check him at night. I look through the numbers and try to make since of it all. If I see a trend then I make changes to his pump. His A1C was higher the last time he went to the endocrinologist. I am guess that it is because of all of the changes and trying to coordinate what is going on between the two homes. If diabetes was not hard enough we have this new life to get used to.

    When I take him to the endocrinologist it is a little tougher to answer the questions. I can only answer what is going on at my house like sleeping habits, food, play and what ever the doctor asks. We also got a new doctor right in the middle of all of this. William was very sad that his old doctor moved on. He even cried when I told him on the way to the doctor. He told me he was sad because he really liked his old doctor. I feel bad that he has had to deal with so much stuff the last few years.

    I know things will get easier even if his mother continues to not talk. I have found that it just take more effort to keep up with things. When she takes him to the doctor I now have to call to see why and what the result of the visit was. Fortunately I do take him to most of his appointments so this is not a bigger deal than the one or two that she takes him to. She chose to leave you would think that she would be happy and not care. You would think that she would put him first but I guess the new guy is still the more important thing in her life. I do my best to send her updates when I take him. Just wish she gave the same respect back. I wish she put him first. So far he has not been hurt by her lack of communication. In fact it has cost her many times over the last year. I do hope that things get better for his sake but even if it doesn't I am always going to do what is best for my little guy.

I miss you when you are not here,

Your Loving Dad

A Story by William

William's letter about Lucky     William sat down yesterday an wrote a letter about Lucky our dog. He wanted me to publish it. So ...