Thursday, July 31, 2014

How can he be so afraid of needles?

    I have often wondered how William can be so afraid of some needles but not others. When he was first diagnosed at 2 years old we had to hold him down to even check his fingers. It was such a traumatic event and giving insulin after was even worse. He would see the syringe and it would take both of us to hold him down. It always made me feel so bad to have to poke him with the needle and to know that I was hurting him. I knew that it was saving his life but it also still hurt that he had to go through that.

    Now that he is 6 he puts strips into the meter and tests his own blood like it is nothing. He knows when the lancet in his "poker" needs to be changed because it hurts too much. The new one we have has such a small needle that you can barley tell it has poked you. If you leave the lancet there more that a day it starts to hurt or becomes ineffective. Then there is the needle for his site insertion. It can not be much bigger than the needles that he has blood drawn from but he has not problem letting me change his site. He will even tell me that he didn't even feel it go in a lot of the time.

    This brings me to my question "How can he be so afraid of needles?" for the other times he has to have blood drawn or to have vaccinations? I took him in to get the flu shot last year and was hopeful that he could have the nose spray but that is not possible for someone with diabetes. He had to get the shot and I felt so bad. Just a couple of weeks ago we had to go to the doctor to have his last vaccination (well at least until he is 11). He was happy to hear that. I know we will have more blood draws over the years and it will take three people to hold him down, for now. I have wondered how he can be OK with me inserting a new site every three days but not sit there for a blood draw.

     I know it is the anticipation of sitting there waiting to get poked, walking into the room and the build up to the even that psychs him out. He is so wound up by the time we get in for the needle that it takes three people to hold him down. My little man is so tough. I know that I would not want to be poked 10 times a day with needles and eleven on the days that he has site changes. Who would want a site on your body all of the time. Having the pump reduces the injections over the month significantly. One poke for three days vs 5 per day for a total of 15 pokes using a syringe or pen. My little guy makes me proud every day with his ability to deal with all of this like it was normal and I do my best to make it feel normal to him. I know things with needles will get better as he gets older. I try to make sure that he sees when I get poked when giving blood or getting my flu shot.

Needles will rule his life until there is a cure,

His Loving Dad

Wednesday, July 30, 2014

Proud Diabetic and "Gluten Free"

    William is never afraid to tell someone that he is diabetic and "gluten free" as he calls it. He will walk up to a complete stranger and tell them like it is one of the best things that ever happened to him. He wears at least three wrist bands that tell that he is diabetic and has celiac disease. I try to encourage him to let people know both for his own safety and to make sure that he knows never to be ashamed of it. It was not his fault and he should feel stronger because of it not weaker. He accomplishes so much in spite of  diabetes. I am sure that I will start to see some of the effects of diabetes more later in life. It seems right now at 6 everything rolls off of him and he recovers quickly. I have read many blogs that tell how hard things are when you have a really high high or a really low low. I expect as he gets older I will see that and he will feel it more but I am hopeful new technologies will make it so he does not have that problem.

     He is mister independent. He is starting to try and help check his own finger now. He is starting to understand a good number and a bad number and it doesn't hurt that the meter changes color when the numbers are bad. He did convince one of his daycare teachers one day that he knew how to use his pump. Fortunately I got there just minutes after to see that he had given himself a big dose. I started stuffing him full of candy as I stopped to have a discussion with the daycare director to ensure that never happened again. I could not believe that they would let a 6 year old administer medicine to himself. When I asked the teacher if she would let her 6 year old give himself medicine she of course said no.

    I am hopeful for a cure or something close in his lifetime. I am hopeful that it will be before he gets to middle school and high school where kids can be cruel. I hope that he stays a proud diabetic. I hope he tells everyone that he knows and helps them understand that it was not something he could do anything about and that he deals with a lot more than they will ever know. He is stronger for it and they will be stronger for knowing him.

I am a proud father,

His Loving Dad

Tuesday, July 29, 2014

Meet Lucky our Dog and Dealing with Celiac Disease

Our dog Lucky,

This is Lucky. He is almost two years old and is 102lbs the last time he went to the vet. He is an Alaskan Malamute.  He is also one of the friendliest dogs you will ever meet. I remember when I was doing the research to see what kind of dog we were going to get. There were two things that were clear. First is that this dog is not watch dog. Second was that he was going to shed more hair than you would ever think was possible. William even told me yesterday that he thought Lucky was trying to get naked. He is so friendly that he will walk right up to most anyone and wag his tail and try to get to know you. He really loves going for walks and going the dog park. He also loves playing in the water.

Our Dog Lucky
I got Lucky for William for his fifth birthday. We drove all the way over to the thumb area of Michigan to a city called Ubly to find this kind young dog. William had just been diagnosed with celiac disease. If diabetes wasn't enough for my little man to deal with we now had that too. Sometimes I wonder which one is worse. Diabetes could kill him at any moment of his life so I guess that makes it worse but then there is the other side that is celiac. He can not eat the same food as the other kids in his class and forget all of the nice treats that he used to love or stopping for fast food. I have to plan even more than I did before for class parties and the unexpected ones too. I keep a stash of frozen gluten free cupcakes at home and at school so he can participate with class parties. Every meal is a thought about the carbs and also about what is in the food.

I remember when I told William about celiac. He seemed not to care until he found out that he couldn't eat his favorite doughnuts any more. I think that was a defining moment in a five year olds life. He cried for a while but has never looked back. His diet is limited but I am always looking for new things to make it better. It is a really good thing that I love to cook. I try new things for him all of the time and I am learning how to use all of the new ingredients that are required for a gluten free diet. I have been trying most of the food that I make just to see how it tastes. Sometimes you can not tell the difference and sometimes I feel sorry for him that he has to eat this stuff. Lucky for me he was young enough that he likes some of the stuff that I think is terrible. He has gotten used to the taste of the new food and I am happy for that. I still try to slip in a treat once in a while and it is also so nice to see everyone around him treat him with respect and love. He went to a birthday party for his "girlfriend" and her parents bough him a gluten free pizza from Domino's. They got the rest of the pizza for everyone else from Little Cesar's. The fact that they made that kind of effort to make my son feel just like everyone else made me cry.

Lucky and William are figuring out their relationship with each other. I hope that they become best friends and that they make each other happy. I found out shortly after getting Lucky that he has trouble with wheat products too. So our dog is gluten free too. I guess that God has a way of reaching out even to a five year old to let him know he is not alone.

Pray for us all,

His Loving Dad

Monday, July 28, 2014

Good Weekend

This was a quite weekend. Things have started to get better since the split. I can tell William still has troubles with mom not being home but it has gotten better. On Saturday he found a picture of his oldest sister T and brought it to me. He was crying so I asked what was wrong. He told me that he missed his sister. I told him that I missed her too. I tried to make sure that he understood that he still gets to see her when he is with his mother and that is OK to miss her. I told him that I hoped one day I would get to see her again too.

It has been so hard on me helping raise her kids for more than half of their lives and now not being able to see them anymore. It is hard to walk by their rooms and see the empty walls. It is kinda like my heart just feeling kinda empty. I remember teaching J to read. Reading stories to all of them every night before bed. We read some great books. The first week they were in my house I read them my favorite book "Where the Red Fern Grows". I remember M telling me that she was glad that I was going to be her step dad that night. I was surprised by that because I thought she would be the toughest one to let me into her heart. It will be hard this year not seeing T in marching band. I was also looking forward to seeing her go to prom. I would have been a prod papa watching her graduate.

One of the most frustrating things for me in all of this is seeing just how little she knows about taking care of William. She let me do everything for four years and now that she is gone she really doesn't know how to take care of her own son. His numbers comeback so high and so low. I am afraid every time he goes there. It took time for me to get good at this but it is really hard for me to see her having to go through the learning curve that I went through years ago. It is nice to finally have a break from getting up every night and to not have to think about his diabetes once in a while but I would be happy to do it all for his whole life just so he didn't have to go through all of this.

OK enough venting for today. My focus is on William and making him happy. School is coming up quickly and he is really looking forward to that. Right now we spend a lot of time at the park and playing video games together. We spend time every night snuggled up on the couch watching a movie or Disney Channel before bed. He is just learning to read. He is pretty good at it when he wants to try. I just have to say "sound it out". He likes to guess at what the word should be vs actually sounding it out. He is amazing and I let him know it everyday.

Keeping our heads up,

His Loving Dad

Friday, July 25, 2014

The New Beginning

Hello all,

We used to have a blog that we kept together. Now it is just William and I, so I thought I would start my own blog for him. I'm sorry if you don't understand some things, but some are just for William and I but I hope that if you read this blog you learn more about my precious son.

William was diagnosed with Type one diabetes when he was 2 just before Thanksgiving. He is now 6 as of this posting today. When we first went to the hospital to learn how to take care of him what a scary day. William, his mother and I sat in a room. The doctor and nurse came in showed us how to take his blood sugar, give him shots and count carbs for taking care of William. What an amazing weight that had just been placed on all of us, especially William. I remember going home and being so afraid that William would not wake up in the morning and wondering how long that feeling would last. It has been almost five years now and I wish I could tell you that that feeling went away a long time ago but it hasn't. I still wake up every morning and walk in his room and hope that he is still breathing. I have many times before bed gone into his room to make sure he was still warm and breathing. When William was 5 we also learned that he has celiac disease.  This mostly means that he can not eat gluten.

From Wikipedia

This year life just got harder for us all. Williams grandmother (dad's mom) and grandfather (mom's father) both died. This year also saw his mom choose to find a new path in life which did not include keeping our family together anymore. We are starting to adjust to this new life. Sharing time and trying to keep everything about William. It is sad where life has taken us this year but we will be stronger in spite of it all. Our lives have changed and I am going to try to make William's life the best I can. We are starting our new beginning this year. Living each day as if William will not wake up tomorrow. Hugging often as I can and snuggling as much as possible and I will continue until William will not let me do that any more.

This blog is suppose to be about William but I am sure that you are going to get me here too. It will be hard as we are joined in life together and I really hope there is never a William without me. I will try to keep you up to date on what is new in our lives and hope that It is a wonderful journey that you got to come along for.

This is our start together and I hope a wonderful journey to manhood for him.

His 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 ...