A little update for you all.

I'm sorry I haven't been updating my blog like I've wanted to. It's been hard because I've been working a lot more and we just moved into the house so it's been kind of hectic. Despite that, I have been able to bring my A1c down from an 8.8 to an 8.0. I also lost 6.5lbs within the last couple of months, which isn't a lot, but still great because I haven't even been trying to lose weight. I also was able to get my thyroid levels under control finally.
Elliot's A1c has been brought down to an 8.0 as well. While it's because he's had more lows than anything, we have been working on fixing it. His thyroid levels are also fine and he is growing perfect and weighs what he should weigh.
Which brings me to my next thing. I want to start a movement. Whether it be on Facebook, Twitter, Instagram... I don't care. Whenever someone conquers their diabetes, I want them to hashtag "suck on that diabetes". So say you're blood sugars have been running high, and you finally are able to get your numbers to get in line because you've been working at it, you do #suckonthatdiabetes. Or you get your tests back and they are better than they were before, you write #suckonthatdiabetes. Or even when you realize that your pediatric endo said that you would be blind, barren and on dialysis by the time you were 25, and you are 26 turning 27 and you can see, your kidneys are functioning perfectly well and you have a beautiful 2 1/2 year old boy, that warrants a #suckonthatdiabetes. We'll call it the "Suck it Diabetes" movement. That's right, diabetes can suck it!


So spread the word. Let's come together, help and support each other, and yell at the top of our lungs #suckonthatdiabetes!

Wow, it's been a while!

      So, Elliot has gotten used to his insulin pump since I've last written. He actually tries to help me with mine and knows that the pump is important for him. One night, while sleeping over my parents' house, he heard his pump beep and woke my mom up to tell her that his pump broke. She checked his sugar and it was high and when she went to use the pump, she noticed the battery had died and then Elliot pointed at the pump and said "Broke".
     He's such a smart little boy. He's started to test his own blood sugar. I'll walk into the room and he'll be trying to check his sugar. When he sees me, he'll say "High" and give me his finger. It sucks that at such a young age he has to know what all of this means, but the fact that he is learning and getting used to it makes me so proud of him.
      Then there are the times that he doesn't understand things, like not being able to eat certain foods. For instance, Elliot does a play group for Early intervention because he is verbally behind. I have to go to the group with him because they don't have a nurse on staff, and he needs his diabetes to be monitored. One day, a parent brought in cupcakes. I began to cry. I wasn't expecting this to happen so soon. He wasn't going to understand why he couldn't have a cupcake. So the teacher asked me what to do. I told her to distract him with cheese. He LOVES cheese. And that time, it worked. So when another parent brought in cupcakes for another child's birthday, we thought it would work. It didn't. I looked through the two way mirror and I saw the disappointment in my child's face. He looked down at the cheese, then looked around at the other cupcakes and told the teacher he wanted one. She told him she was sorry, but he couldn't have one. Then she told him he could have as much cheese as he would like. He just lowered his head and began to eat the cheese very slowly. It broke my heart. That look on his face brought me to tears simply because I know what it is like. I know how it feels to be singled out because you can't eat something, and even having a different type of treat isn't the same. Why does everyone else get to have that and I have to eat this? Why can't I have what everyone else is having?
        It's not all that fun. Although it doesn't phase you as much when you are an adult, it still hurts when you see your child going through the same thoughts that you had when you were growing up.
       As for our diabetes, we are doing alright. My A1c is down and his is as well, but of course neither are where our doctors want them to be. But, it's ok, because we are working on it. Elliot is starting to show a pattern instead of having erratic blood sugars, it's all about finding the right basal and bolus settings for him now. I am trying not to cheat like I used to and I am trying to test as much as I can. It's hard because most of my life I didn't care about my diabetes and now I have to take care of myself to set a good example for my baby. It's hard word, but we're getting there.
       On another note, my insulin pump is busted. It malfunctioned and reset everything, deleting my bolus and basal settings. Yeah, and it happened yesterday, a Sunday. I couldn't get a hold of my endo and my primary care wasn't in so I got the doctor on call. That doctor had no clue what to do, so she told me to go to the ER. I went and my bg went up to 309 and I started to get sick. They gave me a sliding scale to work with and a shot of lantus until I could get in contact with my endo for my basal and bolus settings (I didn't know how busted my pump was). So I called my endo this morning, got my settings, put them in the pump and presto! It malfunctioned again. >_> So as I was freaking out, my husband calmed me down and asked me if I should call the pump company, so I did. Turns out the error that my pump was reading meant my pump was no good and it would be dangerous for me to try to use it. I'm getting a new pump tomorrow morning. So now I have another day of high bg's and insulin and syringes. *sigh*

When will he get used to it?

Elliot has had the pump on now for a couple of weeks, and he still hates it. It makes me so sad to have to change his site. It hurts him so much. The other day, I was changing his site and decided to put the old site on his Lenny the Lion (a special stuffed animal that Medtronic sends to children. It shows the different places that you can put the pump sites on. I tell Elliot that Lenny has diabetes too.) and he started to rub Lenny's  bum and said "Ouch mommy". I started to cry. I just kept apologizing to him that I gave him the disease. It breaks my heart that my baby has to go through this.

                                                     This is Lenny the Lion.

                                                   Elliot's new pump.

                                                 Elliot and Lenny the Lion.


  Just a few minutes ago, I saw a link that my friend Sarah tagged me in. It was a trailer for a documentary on 3 research teams trying to find a cure for diabetes. I cried during the trailer. What they said was so true. And the thing was, they are diabetics as well. I want to find more people like me. I need to find more people like me. People who have diabetes and are raising a diabetic child as well. I have my mother, and she is amazing, but I need a bigger support group. I need people who were diagnosed at a really young age like I was. Someone who went all through out school with it. Preschool, kindergarten, elementary, jr high and high school. Here is the trailer if you are interested in checking it out:
http://www.upworthy.com/meet-a-girl-whos-too-young-to-have-a-type-especially-this-kind?g=2&c=ufb1

Insulin Pump for the boy!

  Great news! Elliot has his pump saline start today! We got his insulin pump in the other day. We are so excited to finally get his pump in. He starts the insulin start on the 15th so we are so much closer to having two pump users in our household. It will be so much easier to take care of his diabetes now. The pump has done so much for me, now it's Elliot's turn.
  His diabetes has gotten better. He isn't going as high as he used to. We think he was going through a major growth spurt and that's why he was doing so poorly. I've been doing a lot better myself. Although, today my stomach is bothering me. I'm not feeling so great.
  Yesterday was my birthday. My mother bought a small cake to sing happy birthday with. Elliot wanted a piece so bad. But we kept saying no. It hurts to have to do that. He got a teeny tiny piece and his shot afterwards, just so he wouldn't feel left out. I feel so bad having to do that, specifically because I know how it feels. You want something so bad, but you know you can't have it, and if you do, you have to inject yourself with insulin. That isn't what I wanted for my son. I wanted him to be healthy. But, it happened. So we have to move on and take care of him to the best of our ability as we can.

Staying at home for the moment

   So, since I've last written, things haven't been so great.

    I've been diagnosed with Diabetic Gastroparesis. Basically, it's neuropathy in my stomach. It's not fun. And, as you can tell, it was caused by the diabetes. I know people who have it and have had it for a long time, but they aren't diabetics. I could've prevented it, but I didn't. Because of this, I've stopped some things that have helped my numbers. I stopped drinking and eating anything with aspartame, and believe me, it helps! I've tested my blood sugars a lot more than I used to. Now I'm averaging between 100 and 300 rather than 200 and 400.

   As for Elliot, it isn't so good. In the beginning of March, he had an appointment with his nurse educator. Everything was great, he was at a perfect weight, his numbers were good, his A1c was where they wanted it to be. An exact month after his appointment, he went to see his Endocrinologist.  His A1c went from an 8.4 to a 9.4, he was showing signs of insulin resistance (which usually doesn't start until puberty), he went from being in the 24th percentile to being in the 54th percentile in weight without any gain in height. His endo said that he was taking as much insulin as a 5 year old would take and be able to be under control.
    
   He had learned to sneak snacks. He was being over fed. The doctor suggested that something were to happen, and happen fast. So, it was decided that I would stay home with him. It's been almost 2 months and there is still no real change in his numbers. His last A1c was a 9.1. He is still running really high. With all the changes that we've made, it's so frustrating that this is still happening. The endo thinks that when he gets his insulin pump, he'll be doing so much better. I pray to God that she is right. We've began the process. His insulin pump has been ordered and if everything goes ok, he'll get it in 2 weeks.

    So I ask that you keep him in your prayers. We need all the help we can get!

There's more to life that this

Sometimes I feel overwhelmed. I just wish that the diabetes would go away and leave my son and I alone. Then I sit and try to get my mind off of it.  I go on YouTube, I play games on facebook. YouTube is always a great way to get my mind off of it and reminds me that I should be thankful I have my son with me. I came across this memorial video of a 5 month old boy named Matthew. He was diagnosed with Trisomy- 13 when his mother was 19 weeks pregnant with him. He lived for 5 months. What a miracle. His mother had to have been so strong to keep her child and know that he wasn't going to live. And here I am, treating my son's diagnosis like it's the end of the world. When I see stories like this, I feel so upset with myself for doing so. This woman lost her baby. Her precious little boy to a horrible genetic mutation. My son is still here and can lead a healthy lifestyle with the right diet, medications and exercise. This woman will be in my prayers.

On another note, while I was surfing you tube I came across another story of another 5 month old child. This story is a few years old, but still disturbing. A little angel name Brianna was beat, bit and raped by her father, uncle and mother until she was killed. What kind of person does this? Who could even think of doing this to someone who grew in you, who depended on you and just wanted to be loved? Part of me hopes that little Brianna's mother comes across this blog so I can tell her this:
You are nothing. You are evil. You don't deserve to live outside of prison walls. You should be sterilized. How can you face yourself? You let the father of your child and your brother beat and rape your child. You bit her continuously. You are just evil. God may have forgiven you, and I know it's wrong, but I haven't. You just DON'T do that to a child. Children are the most precious gift that God has given us, besides his love and forgiveness. The only good thing that came out of this is that Baby Brianna is now with God and isn't suffering at the hands of you, a horrific, disgusting, no good, evil monster.

I apologize to you guys for that. I am just so angry right now. Who does that to their own child? I look at my sweet little boy and all I want to do is attack him with kisses. Which I do and then he gets mad at me and yells at me, but that's besides the point. lol. My son is my everything. He is my world. I try so hard to keep him healthy. How could I let anything bad happen to him? I don't. I would hurt someone if they EVER touched my son. And I know for a fact that so would my family and friends. He is the most wonderful child ever. Thank you God for sending me my baby. Diabetic or not, he was here to save me too. My little Super Boy.

Look at this face, who wouldn't want to attack him with hugs and kisses? :-) <3 <3 <3

The journey begins part 2

Where did I leave off last? Oh yes, His pediatrician said that he wouldn't experience any type of symptoms until the age of 1 1/2 or 2. So, I didn't look for symptoms. I also didn't want to. I wanted my baby boy to be healthy.

April 15, 2012. It was a Sunday. We went to church and he was cranky, but I just thought he was a little sleepy. So I tried to put him to take a nap, but he wouldn't so I just dealt with him as best I could during church. After church, we went to my parents' house, where I dropped him off and went to work. I didn't really anticipate anything, I thought it was a regular day.

Work was busy, as usual. The phone rang, but we had too many customers at the counter to answer. Then my cell phone rang. I let it go. Then it rang again, this time I checked to see who it was, my parents' house number. I figured if they called again, I'd say I had to go to the bathroom. But they didn't. The last time the phone rang, it was the work phone and one of my coworkers picked it up. He told me that some lady was on the phone. So I answered. "Elliot was acting weird and he was drinking a lot of water and I changed his diaper 5 times already. So me and mom (my grandmother) checked his sugar twice. The first time it was 445, then 15 minutes later it was 457. I called Dr. Smith and he said just to bring Elliot into Children's in Boston."

I was speechless. I just told my mom I'd let a manager know that I needed to leave then hung up. I apologized to my coworkers, told them it was an emergency and I needed to leave. Then I went to the closing manager and told him the baby might have diabetes and I would need to leave early. The manager that was on duty knew me and he knew that this was my worst nightmare.

It really didn't hit me until I was sitting outside waiting for my dad to pick me up and trying to get a hold of my husband. My cousin called me in between the multiple phone calls I was making to my husband's cell phone. As soon as she said, "He's going to be ok, Jesus is going to work on him", I fell to my knees and started to cry. My cousin was crying on the phone, praying and trying to comfort me and all I could do was blame myself for giving my baby this disease.

We go to Children's, and they start poking and prodding my 10 month old. He's crying, I'm crying, my husband is in disbelief. The doctor came in and told everyone what we already knew... He has Juvenile Diabetes. Once the doctor left, I collapsed into my husband while my aunt and my mother tried to console me. The first phone call I made was to my best friend Mollie. She just listened as I cried into the phone. Then she sent me inspiring texts messages filled with scriptures.

We spent a week there. Just brushing up on how to take care of an infant with diabetes, learning his regimen, teaching family members how to do up his insulin shots and count carbs.

The last 9 months have gone by so quickly. He's growing to be such a strong boy. He lets us know when his sugar is low, when it's high. It still pains me to know that my sweet little boy has this horrible disease inside of him. Currently, we are in the process in getting him and insulin pump. The pump has helped me so much. I know it will help him too.