Friday, May 22, 2015

Doing a Little Better This Week

Spending time with my boy
    William has had a little better week this week. No major infractions and not kicked out of school. That in itself is worth a lot. Yesterday was a good day. William got an 85% on is daily score. I have started a new thing with him that when he scores greater than 80% he can choose something fun to do for that day. I give him a few things that he can choose from each day and we go do one of them. Yesterday he chose to go to the park. We had a good time and he made friends really fast with a few kids that were there.When I went to take the picture he said wait ... wait... I need to put my glasses on. They were on the top of his head . It was funny. I am trying some new things to see what I can do to motivate him to have better days in school. That is a tough thing for him right now so I am doing anything I can. Adding a few good things where we get to spend time together for good behavior seems good for both of us.

Have to love the glasses
    We also mowed the law yesterday. He loved helping mow the grass. Lucky was barking at a rabbit. I was joking with William and told him that Lucky was telling the rabbit that only he could poop in the yard and that he was telling the rabbit not to come back. William laughed because I said poop. I think he thought it was funny that Lucky might actually be telling the rabbit that. I am glad that William enjoys spending time together. We were going in circles and William told me that we were cutting the lawns beard. We were giving it a trim. It is fun to listen to William tell stories. He has the most fun ideas about things. When it came time to mow around the trees William wanted off of the mower. He told me that when he buys a house in a couple of years that he wasn't going to have any trees in his yard. Then he asked how many more years it would be before he could get his own house. It seemed to disappoint him when he found out that it could be as many as 15 years before he got his own house.

View from the back Porch
    Spring is in full bloom and the days are getting longer. We get to spend more time together and William and Lucky are both getting up earlier and complaining about going to bed before the sun goes down. Lucky has been barking to get out of his crate in the mornings lately. I expect this is because he sees the sun up for so long in the morning. If we make the slightest sound he starts barking to get out. I am looking forward to having fun with William this summer. I am planing to take him camping, to the beach and to other fun places. I really love summer. I am going to work on William to try and get him to ride his bike without training wheels this year. When I took them off last year he wouldn't try to ride his bike anymore. Every kid needs to learn how to ride a bike.

Enjoying the simple things in life together,

Your Loving Dad

Monday, May 18, 2015

He is Getting Big

    I went into his room. It was 2:00am. I was there to check his blood sugar just like every other night. He was mostly uncovered and his legs were hanging off his bed as he was laying across his bed. I looked for a minute before it could grasp what I saw. My little man is getting so big. I could not believe that he had gotten so big and I had not really noticed. There he was laying there and he wasn't so little of a man any more. We have a long way to go before moving out or any of that but it still amazes me just how big my little boy is.

    It makes me stop and think about the responsibilities that come along with having him as my son. These are not normal responsibilities that we have. He takes a lot more effort than most. His type one diabetes has been around now for way more than half of his life. The celiac disease has been around for a long time too. No matter what you are doing you always have to stop and think about everything that you are doing and how that will effect his diabetes and celiac. What food will he be eating? How many carbs are in the food? Does it have gluten in it? Will they have food or snacks where we are going? Can he eat the food where we are going just encase he goes low while we are there? All of these questions every day every where you go.  Most of the time I have to take food with us when we go somewhere.

    Last night was just one of those times when I realize the awesome responsibility that was given to his mother and me. I wish things had turned out differently for him because it would have been so much easier to take care of him together, but that is not what he gets in life. Another thing that makes his life harder. Every decision is a battle or his mom just doesn't answer. He deserves better than that and I wish there were something that I could do to change that for him. He is a wonderful boy who's heart is filled with love. He is confused and does not understand things that are happening now. I am not sure that I do at times. The betrayal and treatment that was dished out was beyond belief at times. I still try to understand how someone tells you they love you and calls you a good man and just weeks later is engaged to be married and trying to throw you in jail and accusing you of molesting her children. Life knocks you down at times but this one was tough. I am back on my feet again but there are times when I am dizzy and fall again. The past comes back and I fall but it doesn't take long to get my breath and get back up again.

I really hope that you never meet someone that does these things to you.

Your Loving Dad

Friday, May 8, 2015

What do I do about Mother's Day for William?

    It is Mother's Day again this year. Last year was horrible with William's mother leaving and all the horrible things that she did when she left. I let William pick out a gift for her last year in spite of everything. It was a tough decision but I wanted to show him that he was more important to me than hate. She did return the favor for fathers day which was surprising. That was where her kindness ended. I let him pick a gift for her birthday but with her wedding just four months after leaving me, things had now all changed.

    Fast forward to a year later. William came home from daycare with a shopping list that he had made for things that he would like to get for his mother for Mother's Day. It was amazing to see him put that much thought and effort into Mother's Day. He told me that he wanted to get her a ring. That is one thing that I will never help him buy. I bought her one ring and she chose to wear someone else's ring instead. With all of the effort he had made I wanted to make sure that I did the right thing for him so I took him to the store and let him pick out a gift. He knew exactly what the end product should look like. He wanted it to be purple (her favorite color), it had to have nice paper, and it had to have a bow.

    We got home with the gift that he had picked after much deliberation. He opened the paper that we had bought. He then went and got the scissors and tape so we could wrap it. I helped him cut and fold the paper and showed him how the bow worked. He seemed so happy that he was all set for Mother's Day. He couldn't wait to give her the present. He asked "How many days until Mother's Day?" I told him three more days and we put the gift into his backpack. That is how we transfer things between our houses these days.

    This is also the second year that my mother is gone for Mother's Day. It really has been a rough couple of years. Things are getting better and I have to say that I feel happier than I have in a very long time. My biggest concern is William these days. I see how much the decisions that his mother made hurt him and everyone around her. I see him acting out and her not owning the hurt that she caused. She wants to blame it on ADHD and I guess that is easier than saying I am sorry and looking inside. It is still Mother's Day and she is still his mother and I would never try to take that away from him.

I love you buddy and you will always come first,

Your Loving Dad

Thursday, May 7, 2015

Time for a New Insulin Pump

    It is so hard to believe that it has been four years since William got his first insulin pump. So many things have changed since that day. It is time for a new pump. The warranty date is June 27th. We are evaluating two different pumps. Well there is a third that we would like to have but it does not have an integrated continuous glucose monitoring  (CGM) system. William looses $5 gloves like he was giving them away at a charity so I can not imagine sending him to school with a $1000 receiver for his CGM. I think he would have already lost his pump if it were not attached to him 24/7. So that really leaves us with two options. There is the MiniMed® 530G with Enlite® and the Animus Vibe® with Share™. Both have an integrated CGM so it really comes down to which is going to give us the most for our money.


Integrated CGM
Meter send blood glucose numbers to the pump
Low blood sugar shut off (suspends giving insulin when his blood glucose number drops below 60)
Currently using Medtronic

No separate receiver for the CGM
The CGM is not as accurate as the one with Vibe®
The CGM site does not stay on the skin as well as the one for the Vibe®.
Not as comfortable as the CGM for the Vibe® (based on blogs from people that have worn both)
Does not have the ability to share CGM information on the web.
Not water proof


Integrated CGM
Separate receiver for the CGM
CGM site stays on the skin better than Medtronic
More comfortable than Medtronic
Can share CGM information via the web the Share™ with an Apple Iphone
Water proof

Meter does not send blood glucose numbers to the pump
No low blood sugar shut off
Not currently using Animus

    Based on this research I am leaning toward the Vibe. We are currently using the Medtronic pump so we would be switching to a new system. There is a little bit of a learning curve there. I also have to get his mother to agree. I think that is gong to be tougher than trying to figure out which pump to use. We have a little time before we have to make the decision. I am trialing the Medtronic sensor with William this week to see if they have improved over the really bad sensor we had before.

    I will let you know how things go as we proceed. William is not in the approved age group for the Animus pump but we should be able to get the doctors approvals.

Here is to the next four years,

Your Loving Dad

Monday, May 4, 2015

Another Tough Week

My Little Dutch Boy
    Well it was another tough week for us this week. You were at your mothers house this week but I was watching. It started on Friday when you got to go on a field trip with your school. You carpooled to the museum and met grandma there. On the way home you decided to hit someone in the head. Now you get to miss marching in the tulip time parade. I had just bought you your costume the day before.  Maybe next year. Then on Friday before you came home you were playing on the playground. One of the other children was not playing nice but instead of walking away you punched him in the eye. I am sorry that you have this much pain in your life. I wish I knew how to make it better for you. I will have to just keep telling you just how much I love you, and let you know that hitting is not an acceptable choice.

    We started seeing a therapist last week. You told me that you really like her and that you want to go back really soon. We are waiting to get your mother on board and then hopefully we can start making progress with your hurt feelings inside. I know when you are not feeling Okay because you tell me that you miss grandpa. I just want to wrap my arms around you and tell you that everything is going to be well in your life. I want to tell you that your life is going to be good. Right now I am very concerned that you are making bad choices and you will start letting those choices run your life. I don't want to see you blaming others because of your bad choices. You are loved and I love to see that boy who wants to have me be proud of him.

    This weekend while you where spending the weekend in your room because of hitting, you took time out to show me that you want me to be proud of you. Saturday morning you got up and made me breakfast. I love that you did that for me. That is the boy that I want to see make it through all of this. Then this morning you got up again and went down and made breakfast again. I love you so much for trying to say you are sorry this way. When I asked you if you thought that I would rather have you make me breakfast or do the right things in school, you knew the right answer. You told me that starting this week you were going to start using the right side of your brain to make good choices. I am not sure where you got the idea for the good side and bad side of your brain but it made me smile. I do hope that you start using the good side of your brain to make choices. We could have so much fun together when you make the right choices in your life. I want to be able to go and have fun without trying to decide if you deserve it.

We will trudge through with me standing next to you all of the way,

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 ...