I'm failing miserably about talking about our journey with Type 1 and how life has changed in the last 11 months. I am honestly going to try to do better. With that being said I thought that I would write about why we have chosen to get a Diabetic Alert Dog for Jack and more importantly why we have chosen Hub City Service Dogs in Hattiesburg, MS.
Type 1 diabetes is a very scary disease all by itself. What makes it even scarier is if you have a child (or adult) that does not realize when their blood sugar is getting to a dangerous level - either high or low. The purpose behind the Diabetic Alert Dog is that the dog will help alert the person to a changing blood sugar - in Jack's case it will be a low blood sugar. I know that many of you are probably thinking that this is the most absurd thing you have ever heard. How does a dog know that a blood sugar is going into the dangerous range? Dogs have an amazing sense of smell. Case in point police K9's and search and rescue dogs that can find humans - dead or alive. Diabetic alert dogs go through a type of training known as odor training. What that entails is that scent samples (Jack's saliva when his blood sugar is low) are given to the trainer and then the trainer takes those samples and begins to train the dog to alert to whenever they smell that certain smell. From everything that I have read, watched and learned from Bubba (our trainer) these dogs can give a good advance warning on when the blood sugar is changing into a dangerous range and that allows their human to check and treat that blood sugar. We know that this dog will not cure Jack's diabetes or even take away our hyper vigilance of checking and managing this disease. We know that we will have just added another tool to his diabetes care to help him be able to live as normal a life as possible. Another reason why we are getting the dog is for Jack's safety while at school. Jack goes to a very large school and is the only student in the school with Type 1. That is hard for us as parents and for the staff of the school. We appreciate very much all that they have done for us. We want to make sure that Jack is safe at school and that is hard when there is only one person in the entire school that is trained in his care. If there were to be an emergency, the only person that could help would be the nurse and she is all the way in the front office. Some in the school are not thrilled about the dog but as I have told anyone who will listen, if Jack were blind or in a wheelchair there would be no argument.
Type 1 diabetes is a very misunderstood disease. Those that have not had any interaction with it do not understand how serious of a disease this is. They do not understand that Jack has to have insulin all the time. They do not understand how dangerous it is for him not to be able to feel his body's cues of a high or low blood sugar. We are trying very hard to educate as many as we can about this disease and everything that comes with it.
Now for the next question - why did we chose Hub City Service Dogs? A few months after Jack's diagnosis I was researching different things online relating to Type 1. A few news stories came up about a new type of service dog - Diabetic Alert Dogs. After reading about families with these dogs and watching videos of what they do, I began to research trainers and breeders in or around Florida (on the East Coast). I am sad to say that I did not find anything in or around Florida, much less the East Coast. Everything I found was in the mid-West or Western states. Some of the programs had residency restrictions on them. Most of them came with a price tag pushing $30,000. I was on a website for parents of Type 1 diabetics and I ran across a story of a girl that had a D.A.D. and was doing beauty pageants. Now I would normally never do this but I looked for the mother's contact information and found it. I sent an email shortly after just asking if she could give me some advice on D.A.D.'s and trainers. A few days later I received the most amazing reply. The mom replied back with enthusiasm and generosity in answering my questions. She also said that she had talked to her trainer where they lived and asked me to call him. A few days later I did just that. After speaking with Bubba and hearing all about their program, I felt that this was the organization that we would work with. This organization is absolutely amazing. To start with they are non-profit and that makes a world of difference for us. Another thing about Hub City Service Dogs is that they train service dogs for all walks of people. They are not just focused on one select group of clients. Everyone that we have been able to meet have been so passionate about this calling and this organization. That makes all the difference. I know what many of you are thinking - why did you drive to Hattiesburg? Honestly, I would have driven to the moon just to work with these amazing people.
One final thing, as far as Jon and I can tell, we believe that Jack will be one of the only people in Jacksonville with a D.A.D. We are hoping that once people see what this dog can do than all of the misconceptions will go away. We are still trying to fundraise to help the organization place more dogs with other families. If you know of any business or if you would like to donate, please go to http://hubcitydogtraining.com/.
For now.
Friday, April 10, 2015
Why Hub City Service Dogs?
Posted by Mama Kees at 11:39 PM 0 comments
Friday, March 6, 2015
One of those days..
Today has just been one of those days. Well the last 36 hours has been rough. Yesterday was Jack's 3 month check up with the endocrinologist. His A1C went up - as we were expecting. Talked with the ARNP about some issues we are having at school and about his Diabetic Alert Dog. He wanted to take those things to the doctor to get his opinion on them. The phone call that I got after everything was presented to the doctor was not what I was hoping for. Even after expressing to them that Jack did not want to be on the CGM, the doctor really wants him to be. Like I told the ARNP, while I know the purpose of the CGM would be wonderful if there is not a responsible adult other than the nurse to help if there is an emergency then what is the point. Then they suggested again that we think about changing his school to one where they are willing to be more accommodating with staff training (other than the nurse). If we were just dealing with his T1 then I would be all for that but we are not. It is very difficult to make a change of that magnitude with Jack. We would be taking such a ginormous step backwards that it would negate everything that we have done to this point. I'm just really confused. I wish there was a better way to say it but there's not. My brain is tired from all of this. The lack of understanding and willingness to understand is dumbfounding. We asked the ARNP if the doctor could write us a letter of medical necessity for Izzy. The answer we got was not what I had thought we would get. The doctor said that since he did not know of any of his patients that were using one and since he doesn't have any data from research proving the effectiveness of these animals that he would not write one. I understand his reasoning to a point. That's fine if he doesn't want to write the letter, Jack's pediatrician is writing one.
Just to be able to have the discussion about Izzy going to school with Jack requires letters of medical necessity from at least one doctor, as well as, proof of our trainer's certification, the dog's certification, and certification that Jack has been trained on how to handle the dog. Even after all of that is turned in they can still deny Jack the opportunity to have Izzy at school with him. Now do you understand why my brain is tired. That doesn't even include the IEP meeting I am trying to get scheduled so that NO ONE at his school will try to take his insulin pump away. It is like trying to get a bill passed in Congress to get this meeting set up. You would think that they would try to be flexible around the parent's schedule - NO! I was basically told that this is the only date and time that we have and if you can't be here than it is going to be another month before we can get it scheduled. I'm sorry but this is concerning my son's life not just a piece of paper.
Jack has had a really rough day with listening to me and following my directions - or any directions, to be honest. For whatever reason, his ADHD/ODD seemed to be in full gear today and that compounds any other thing that is going on and makes him difficult to work with. There has been quite a bit of anger and frustration in the house today.
I honestly don't know what to do anymore concerning all of this. I don't know if it would just be best to pull him out of school all together and either do homeschool or virtual school. I'm not sure that even changing his school would be a better option because there is no guarantee that the administration will be any better towards any of this. It's difficult to be in this position because there are not many people you can talk to about what is going on. Most people don't have any of this to worry about and I don't want to come across as I'm complaining all of the time. It's a lonely place that I stand in. I know that Jon and the Lord are there but it is still lonely. I know that God will see us through this valley we are in. I know that He is not waiting at the other side of the valley but He is IN the valley with us guiding us along the way. I know that is the only thing that keeps me from losing my mind - to know that I'm not truly alone. Even when it's been one of those days.
Posted by Mama Kees at 11:17 PM 0 comments
Monday, January 19, 2015
An Update and Things
So it has been a while since I have written. Last time we were at almost 2 months post Type 1 diagnosis. At that time I didn't think life could get any busier. Well here we are at 8 1/2 months since we learned of our life change. It has been a roller coaster ride and we aren't even at a year yet. For the better part of the last 8 months, Jack has been in what is called the "honeymoon" phase of his disease. What that means is that his pancreas has kicked in and been producing the last amounts of insulin (beta cells) that are stored in it. We don't know how long it will last and it is different for every child. We do feel that over the last month or so he is beginning to come out of honeymoon. His blood sugars have been more all over the place with no explanation. At his last endo appointment in December his A1C was up just a little bit. The added steps of everything that is associated with this has just become part of the routine. Sometimes I think that Jon and I forget about it until we have a low blood sugar or a really high one and then we remember that there is no rhyme or reason to this. Jack is constantly putting on weight and beginning to grow height wise again. That makes us happy.
School is in full swing - in fact he just ended the second 9 weeks, which means they are half way done with school. There was some argument with the county at the beginning of the school year about getting a nurse back to the school. It got to the point to where I had to call Grace and let her handle the situation as there was nothing I could say to get the county doctor to understand we weren't moving schools. Jack has had a really great year up to this point. His behavior is doing well. He has had a few problems but his teachers are helping him work through them. His teachers are amazing this year! I absolutely love them. They have been willing to learn everything that goes along with his diabetes and have been very receptive to the help that Melissa is giving them each week in regards to his ADHD/ODD.
The next step of our journey that we have begun is getting an insulin pump for him. He is so excited about getting this. He knows the rules behind it and is happy that he will be able to play soccer again. We are also working on another tool for his success with this disease but that is a post all unto its own.
For Now.
Kim
Posted by Mama Kees at 8:20 PM 0 comments
Friday, June 27, 2014
Almost 2 months
There are times that I can't believe the path that our lives have taken. Then there are times that I forget the new path our lives have taken. When you are suddenly forced to go a completely different way than what you wanted, it becomes an all out battle. I know that there are times that I tell myself that I don't want to do this anymore but I know that I have no choice because Jack's life depends on it. We have to be so on top of everything all the time. 2 months have almost gone by since the dramatic change. We have adapted well to this new life we are living. Just about 2 weeks ago I became very sick. I think that it was God's way of telling me that I needed to slow down and take care of myself if I am to take care of my family. I know that I can't do everything for everyone all of the time but there are times that I have no choice but to do it. That comes along with the territory of being a military wife. Jon wasn't home when Jack was diagnosed and then was gone a few more weeks after that and we have some time coming up that he will be gone again. Even though he is gone quite a bit for work he always comes home with a willing spirit to help and take over. I so love him for what he does for our family. He provides the majority of our income so that I can work part time and be there for Jack in any way that he needs. Life is tough. I know that God only gives me what I can handle. If I am faithful to what He has called me to do then He will recognize my faithfulness. Next Saturday as we celebrate Jack's upcoming birthday with friends and family, it won't be far from my mind that 2 months ago that day we were admitted to the hospital with the diagnoses of Type 1 diabetes. Instead of being sad about that diagnosis we will celebrate the fact that God has given us 7 amazing years with our little boy (who isn't so little anymore).
For now.
Posted by Mama Kees at 11:07 AM 0 comments
Saturday, May 24, 2014
Lost It
So tonight for the very first time since diagnosis, I lost it. I let myself break down and cry. Jack has been doing good over the last week. His blood sugars have been within range. He went back to school and has done amazing! Late this afternoon I could tell that he wasn't feeling too well. Not like the weekend that he got sick which led to his diagnosis. I checked his temperature becaus he felt very hot and he was running a 100.2 fever. I got him to take some Advil and he ate most of his dinner. Around 7:30 he fell asleep and that was our clue that he really wasn't feeling good. We still had a sugar check and at least 1 shot to give if not 2. I was able to get his sugar checked without waking him up. Because he was wearing a sweatshirt (another sign he had a fever) I couldn't give him his shots in his arm like normal. Jon helped me get it to where I could give him his shot his leg. It did not go as I had hoped. Not long after I got the needle in his leg he moved and then he cried that it hurt. When he jerked it had caused the needle to come out and now his leg was bleeding. So for the 2nd shot we had to get his sweatshirt off and he was not happy about that. The 2nd went better and we got him to lay back down. As he lay down he said "I just don't want to be alone. Please don't leave me." That was all it took. I knew that he hadn't been all the way awake during all of this but it broke my heart that the thought was in his head. I laid down with him and comforted him until he fell asleep. I'm so sad that he has to endure this. I know that this is God's plan but there are times that my sinful nature says that this isn't fair. He doesn't really understand why all of this is happening to him and I don't have words to explain it to him. My wish for him is that his diabetes will just fade into the background. I know that it will eventually but I am so impatient about it all. I just lay there with him and cried. I knew it was a matter of time that this happened but I didn't know when. I know that it is my mommy heart just wanting to take all of this off of him and put it on me. I would rather deal with this than him.
For now.
Posted by Mama Kees at 9:56 PM 0 comments
Sunday, May 18, 2014
He knows me!
I sit here listening to Rita (my Sunday School teacher) read Psalm 139. It is really hitting home for me today. God knows every part of me - inside and out. Even when I feel at my lowest, like I have completely messed up, I can't hide from God. He always knows where I am and what is happening inside my head. He knew, last week when I was quietly freaking out about Jack's diagnosis, that all I needed was Him. He reminded me during that time that I just needed to turn the whole situation over to Him, to let Him be in control. As I said in my last post, He has prepared me for this time to do what needs to be done for Jack. I didn't know that this was going to be a part of my future but God did. He knew that what I learned from my dad and his living and dying of this disease would help me be able to process everything I was given. Over the last 2 weeks, God has given me constant reminders that I must trust in Him and ask for help from others, even if it is just asking for prayer. So I ask those of you who may read this to just pray for us, nothing specific but just to pray.
For now.
Posted by Mama Kees at 10:07 AM 0 comments
Saturday, May 17, 2014
A New Way of Life
On Monday, May 5, we made a trip to the doctor for Jack. He had become sick over the weekend and neither of us knew what was wrong. After talking with the doctor and a couple of tests that could be done there we were informed that Jack has type 1 diabetes. We were then told that we needed to take him directly to the hospital. We had to go through the ER but thankfully our doctor had called ahead and we were taken right back. We spent a few hours there while they did some more tests and then we met Jack's endocrinologist from Nemours. Dr. Canas talked directly to Jack to find out some different things from him and began to simply explain it to him. Shortly after we were admitted.
Jon was on his way out of town for work. I wanted him to be there but knew that I had all that I could handle at that time. Jon gets bored so easily and I knew that he would have been simply bored to tears. The next 3 days were a whirlwind. It was so much for us to wrap our heads around. It is one thing when it is your dad and it is just a way of life. This is my little boy, my baby, and now his life has changed in an instant. The thing that I just couldn't figure out in my head was how to completely explain this to him. Thankfully we had some great nurses and doctors that have worked with kids that explained it to him in a way that he understood. One thing that we have learned is that not only has his life changed but ours as well. We have to take a lot more stuff with us now. We are eating more meals at home so that we can't count all of the carbs that he is taking. We are ultra aware of how he is feeling all the time.
Yes, I know that my dad died from this disease but I also know that he was apart of a lot of the treatments they have out there now.
One thing that I have learned from all of this is that God prepares us early in life for things that we will have to deal with later on in life. He prepared me for this and I didn't know it until I was fully into it. I knew on Monday, May 5th that we were going to have to turn all of this over to God. He would be the only thing that helped us all through the first week. He is the only thing that has kept me from completely breaking down. I know that I need to be strong and aware of the things that Jack needs at all times.
This is the beginning of a new way of life.
For now.
Posted by Mama Kees at 8:52 PM 0 comments
Thursday, November 7, 2013
My Hope
Right now I am watching My Hope with Billy Graham. God has used this man over the course of his life to reach millions and millions of people for Him. The coincidence of the airing of this program is that 13 years ago I sat in a completely full Alltell stadium listening to Billy Graham preach something very similar to this and God grabbing ahold of my heart. Also at that time my dad was drawing his last breath on this earth and making his way into the arms of his Father. I didn't know until I got home that evening that my dad had died. At that time I was so upset that I didn't get to tell my dad goodbye. I felt that I had been so selfish in going to that revival and not going to the hospital and being there with my dad when he needed me the most. I was so angry at God. After that I completely rebelled against God and everything that I knew was true. But in His mercy and love He welcomed me home with open arms, like the father welcomed home the prodigal son.
Now I have realized that God wanted me where I was that night. He didn't want me in the hospital watching my dad die. He wanted me in that stadium with people that truly loved me and cared for me. He wanted me to come home when I did so that my mom could tell me the news and the people that I loved more than anything in the world could be there to hold me and let me cry and mourn. The only thing that I can tell you that got me through that rough time of his passing and the time of rebellion after is the never ending love of Christ. When He saved me at 8 years old, I became His forever. Nothing that I can do will ever take me away from Him.
Please know that if you give your life to Christ, He loves you. He doesn't care about your past. He knows your sins and He took them all and placed them on the cross with Christ. He has forgiven them. He loves you. If you feel lost and alone, He is always there. He will meet you where you are. He loves you.
Posted by Mama Kees at 10:30 PM 0 comments
Monday, September 9, 2013
Sadness
The last few days have been filled with heavy heart sadness. No one has died and no one is sick but my heart is still heavy after a few events took place on Friday and some decisions made on Sunday evening.
I know that many of you know that I was planning on going to the Middle East at the first of November. Well, I believe that God is calling me to stay home and be a mommy and fight a battle for my munchkin. I know that there will be more opportunities for me to go but I was really looking forward to going. I am going to listen to the Lord's wisdom for what I need to do. Friday was a really tough day as I had to attend what I thought was an IEP meeting for Jack at his school. Well, come to find out it was not. It was just another meeting of school personnel telling me and our advocate and psychologist what Jack was doing wrong and how he was not doing anything to help himself. We have been fighting this same fight since October of last year. Two and half hours I sat in that room with 9 other people listening to them belittle the disability that Jack has and basically tear him down instead of seeing the progress he has made in almost a year. They kept telling us about the things he wasn't doing or the way his tone was to his teacher instead of finding the things that he was doing correctly. I know that God wants me to be home so that I can continue to fight for the services that Jack needs and to use these "issues" as teaching moments for the people at the school. Jon and I hit a new level of frustration Friday evening and couldn't believe the way that grown adults were talking about a 6 year old little boy or the fact that they thought that I (as his mother) was lying when I told them of all of the successes we have had at home with almost the exact same procedures that we have asked them to use at school.
Thankfully the last 2 days he has had really good days. I continue to pray that he will have good days and that his teacher and everyone at the school will see just how hard he is trying to do what is asked of him. All I want is for them to give him a chance - a chance to be who he is, especially with his disability.
For now.
Posted by Mama Kees at 7:32 PM 0 comments
Thursday, July 25, 2013
Hate-Hate Relationship
Ok, I am going to vent for a minute. In late August of last year, Jack was diagnosed with ADHD and ODD (oppositional defiance disorder). He was placed on 2 different medications and we began behaviorial therapy. It has been a long road up to this point and the road continues and is never ending. With his ODD he gets frustrated super easily and can just totally melt down to screaming and tears.
Jon and I had to learn different ways to parent him. The normal ways of doing things do not apply with him because of his ADHD & ODD. Starting out was very hard because we were basically starting over. Jon and I both parent different to begin with so to learn a new way that we must do together was a whole new planet. When we started all of this, I was so confused as to what we should do and who we should call. I was literally in the school parking lot in tears because I didn't know what to do and the first thing that I did was to ask the Lord to show me the way. I have had some people say that we just wanted to put him on medication to calm him down. Let me just say this, the very last thing that either Jon or I wanted to do was put Jack on medicine. We only knew of the horror stories of kids with ADHD and the medication that goes along with it. Knowing all of that and knowing that I basically knew nothing about ADHD is why I asked the Lord to open all of the doors for the things that needed to be done and the paths that needed to be taken.
I truly do believe that God puts people in our paths for many different reasons. The first call I made was to our pediatrician. She has been his doctor since the day he was born and is a wonderful Godly lady and an amazing doctor. She worked us in for that afternoon and sat and talked with me about everything and all of our choices. She didn't automatically jump to medicine, thank the Lord. She also recommended that we see a behaviorial therapist. We found an amazing group that has helped us in so many ways.
I get so mad when people tell me that ADHD is not a real thing and that the parents just want to medicate their children. ADHD is a real disease. Kids struggle through this fast paced world we live in. I have seen the look of frustration in my son's eyes when there is a lot going on and his brain is moving so fast that he can not focus on one thing.
That is all of my ranting for now.
Kim
Posted by Mama Kees at 10:04 PM 0 comments