Hard shell

I have come down with this horrible case of insomnia lately. I am pretty sure it is because I have let's feed or adapted my children's bad sleeping habits overt the last five years. Also my mom has a hard time sleeping too. Any ways there has been something on my mind the last couple days and I want quite sure how to wrote what I have been feeling. Since I am wide awake I might as well try to write something's down.

After Rose and James were born I started to realize that I had some postpartum depression after both of my pregnancies. It was really difficult for me to accept the fact that I needed a medication in order to function normally, but I do. I have always been a pretty emotional person either really happy or passionately angry. I feel all of the emotions intensified. So when I started having postpartum depression it hit me like a ton of bricks. I am on medication and it helps but the biggest thing that changed for me is that I learned how to disassociate myself with people and my emotions in order to just make it through the day. I had to put a shell around my emotions and the medication makes me feel more level and consistent.

I am beginning to realize that when rose was diagnosed with T1D that shell hardened a lot. When you have to give your child a shot every time you eat you have to disassociate the fact that you are hurting the same child that you would give up your life for in a heart beat. You HAVE to hurt them in order for them to live. To deal with that I mentally hardened my emotional shell to function with the new reality of being a T1D parent. But now I am beginning to realize the effect that it is having on me and my family. Sometimes I feel like a robot with no emotions and connection to the people I love the most. I want so desperately to break they she'll and to feel those deep emotional connections with people. I have found that it takes a lot of work each and every day to have those connections. But the truth is sometimes I don't want to have to worry about one more thing during the day. I still feel so overwhelmed with the T1D life and to add one more thing is just way to much for me right now. I know that someday I will break through this shell but for now I am going to keep it on. And I am going to wear it as a badge of honor that I am a mother of a T1D child and she is thriving.

People always ask me how Rose is doing. The fact is she is great. She was so young when she was diagnosed that she doesn't know any different now. But for me, it has been very difficult mentally. I have come a long way but I still have a long way to go. Being a T1D parent changes everything and it takes a big toll on you emotionally. When the kids are so young when they are diagnosed they just adapt. They are resilient and it is amazing to see how they just step up and move forward never looking back. I hope that I can one day move past all of this emotional scaring and be like Rose... brave, resilient, and strong.

Basal vs. Bolus

When you are diagnosed with diabetes you learn lots of new terminology that you had no idea existed. It takes a long time to sort all of the words out and to fully understand what in the world you doctor is saying to you. Bolus and basal are two of those words.

Basal and Bolus refer to the two different types of insulin you body makes. The basal is the constant insulin that is secreted by your pancrease that keeps your BG in check even when you are not eating. Bolus insulin is the extra amount of insulin that your body produces when you eat something. When you are diabetic you have to create the same affect, so you use two different types of insulin, long lasting and rapid acting, to imitate your body.

The long lasting insulin lasts around 24 hours. We were prescribed Lantus. Now that we are using a pump, we use NovoLog in small increments all day long to keep Rose's insulin level constant. Usually every three hours she gets 0.11 units of insulin as her basal.

Okay so the other type of insulin is the rapid acting. The rapid acting insulin we are using right now is NovoLog (we are changing to Humalog as soon as we run out of Novolog). The rapid acting insulin typically stays with you for about four hours. Rapid acting insulin is given 10-15 minutes before meals. It is the insulin you use to help the food being eaten be digested.

Remember that when you are doing injection therapy you use both types of insulin. With a pump you only use the rapid acting insulin. Something we did not know until we switched. I think that is amazing how your body works. Two different types of insulin to keep your BG down is amazing and it just does it. You don't even have to think about it. What an amazing gift our bodies are.

On a side note, we took the kids four wheeling today. They loved it. We are celebrating my husbands birthday today by staying home and playing with the kids. We also got to do a secret Santa door bell ditch. It was so much fun. Last year we were so blessed to be the ones receiving all of the gifts and this year we got to pay it forward.  That is what Christmas is all about. 

Confidence

With in the last couple days I am really starting to feel completely comfortable with every thing we have been given to handle recently. The diabetes is just part of who Rose is and I love everything about Rose. Even this horrible chronic disease that she will have for the rest of her life. Rose was given this disease because that is what she needs to grow to become more like her Heavenly Father. Rose is perfect in every way. Although I want to take this disease away from her she is not broken. Rose is brave and resilient. She has more courage than I will ever have. So tonight I am grateful for our trials, for the opportunity we have had to grow stronger as a family and the confidence I have gained personally. I am finally beginning to find who I really am as a woman and mother.

Auto Immune Disease

Do you know that type 1 diabetes is an auto immune disease? Yep that is right. It is from the same family/ gene as Parkinson's, autism, allergy, and other auto immune diseases. When they told us then in the hospital it was shocking to us. We had no idea. Yes T1D is not just hereditary it also involves the white blood cells attacking healthy insulin producing cells, because of some virus. When we were first diagnosed I did quote a bit of research on immune diseases to learn if there are other things that we can do help Rose's immune system. Yes it is part of her pancreas that isn't working but the immune system is the underlying problem.

The immune system is such a huge system and there are so many parts and organs, it makes it very hard to pin point exactly what goes wrong when the white blood cells start attacking the pancreas. Besides Rose getting too low,  the other thing that worries me is Rose getting the stomach flu. With her already having a weaker immune system I had to find something to make the immune system stronger. Low and behold Probiotics.

I have been a big fan of  probiotic since James was a colicky baby. He had horrible acid reflex and I tried everything. The only thing that worked was a probiotic. Probiotics helped better than his acid reflex medication and I love the fact that is was a more natural approach to helping him. Well probiotics also help your immune system. Hence the reason why we take probiotics every day and sometimes twice a day when my kids are sick. We also take multi vitamins and sanitize everything like crazy. I do not want the flu to come to my house.

New Type 1 diabetic families

My second cousins son was diagnosed with type 1diabetes yesterday. I have been trying to figure out how to comfort their family and what would have made those first months easier. The hospital is so overwhelming learning all of this new terminology, learning how to count carbs, how to administer insulin, all while being in denial about the whole thing. You kind of go into what I call "sick kid mode". You do what has to be done hoping that there will be an end in sight. It is kind of like when you are taking care of your child who sick with the stomach flu. It is exhausting and you don't want to do it, but you do it just because it has to be done. Then you reach this point where it hits you like a ton of bricks. You are never going back to your old life and your child will never go another day without insulin being administered to them. It is devastating and sometimes you want to crawl back into your bed and hide from all of it. But you can't. This is your bitter cup to drink and you swallow hoping that tomorrow will not be so overwhelming.

It does get better but like my older sister says "Diabetes is not a sprint, it is a marathon." Take it one day at a time and sometimes even one meal at a time. When you have worked so hard to count carbs, make dinner, dose your child, feed everybody else, and feed yourself, remember to celebrate that you have made it through one more meal. Diabetes is a huge chronic disease that never goes away, so celebrate the little things .  Every BG that is in your range, celebrate.  Every time you read something new about the amazing technology out there for T1D's, celebrate. If you don't you get burnt out and begin to loose hope. You get discouraged and your child depends on you more than ever.

Remember you can do this and find other families that have been effected with type 1diabetes, too. They are your new support group and they will help you stay motivated and encouraged to keep taking care of your child to the best of your ability.

A1C

Last time, I posted about Rose's A1C.  A lot of people do not know what that is.  Well here is an explanation and why we have Rose's tested every 3 months.

An A1C is kind of like a batting average for a baseball player.  The eAG is the mean of all of the Blood glucose levels in the last 3 months. It is rated like this.  Rose was at a 6.6% which is awesome.  I even got a smiley face from my nurse on my paper. Man I am such a person pleaser.

http://www.diabetes.org/living-with-diabetes/treatment-and-care/blood-glucose-control/a1c/

This is how diabetes.org explains A1C.  "Hemoglobin, a protein that links up with sugars such as glucose, is found inside red blood cells. Its job is to carry oxygen from the lungs to all the cells of the body. Glucose enters your red blood cells and links up (or glycates) with molecules of hemoglobin. The more glucose in your blood, the more hemoglobin gets glycated. By measuring the percentage of A1C in the blood, you get an overview of your average blood glucose control for the past few months."

It is so amazing to me to learn about how our body works.  It is amazing that Heaven'y Father made our body so perfectly that even at a molecular level our body knows what to do to make sure we are healthy. Although Rose's Body might not be as perfect as other bodies on this earth, I do believe there is a reason behind it.  I am grateful to Heavenly Father for the parts of her body that do work.  She is able to see, hear, touch, taste, and she can run and walk just like any other three year old.  We are so blessed and sometimes I focus on the bad too much.  We are grateful for Rose in our lives and yes I am even grateful for her diabetes today.  Diabetes has brought me closer to her than I have ever been.  I am grateful for our the diabetic community out there.  It is wonderful to meet new people who struggle with the same chronic disease. 

The Face of a T1D Child

I was talking to my husband this morning about Jerry the Bear and he brought up that fact that you can almost tell all the children that have T1D just by looking at their face.  They always have a sheepish look about them.  I started remembering what Rose used to look like before she was diagnosed.  She was so outgoing and afraid of nothing.  Now sometimes when I look at her it is almost though I can see stress, nervousness, or ashamed for something she can not control.  It kills me to think that this disease might hold her back.  She deserves the world and I can't give that to her.  I can do my best to make her feel normal but the truth is I can't change her broken body.

On a lighter note, we had our three month check in with our endocrinologist. When we met with him a month after Rose's diagnosis she was at 7.7% with her A1C.  Our goal was to get a 7% at the next appointment.  Well I am very proud to say that we got a 6.6%.   That's right.  Diabetes might be our trial but right now I am kicking it's butt.  It was so nice to get medical confirmation that I am taking care of my child to the best of my ability.  I just need to keep it up which is sometimes the hardest part for me.  I do really good for short periods of times but keeping it up will be hard.

I mentioned Jerry the Bear above.  It is amazing.  Please take a moment to check out their website and if you can donate to them.  I can't even begin to tell you how amazing it would have been to be given this bear in the hospital when Rose was diagnosed. Every diabetic child should have Jerry the Bear.  We just purchased our pump, next is the Continuous Glucose Meter, and then Jerry the Bear is on my wish list for diabetic supplies. It is so sad that diabetic technology is what I want more than a house or a new car.  I want to be able to take care of Rose the best I can and having some of this wonderful new technology would be life changing for us.

My Rose

Rose,

I have always loved you.   You have always been my little girl and I was so excited to have a daughter first.  You are funny, bright, and always making sure everybody is doing what they need to be doing.  You are always singing and dancing around the house about everything.

I had no idea how brave you actually are, until you were diagnosed with T1D.  You are braver than I could ever be.  I do not know how you can get shots and pricked all of the time.  You know what has to be done and you just do it.  I admire you for that.   When we first came home from the hospital, I was getting ready for the day and you kept telling me that you wanted to be just like me.  I started to tear up because you are already stronger than I have ever been. I have always been terrified of pain and needles and you deal with it on a daily basis.

I hope you truly know how much Daddy and I hate hurting you, when we give you a shot. We do not like to do it but we have to.  I think that you are truly beginning to understand why we have to give you insulin. You are always asking how many carbs are in food, what your BG is, and  always wanting to help with pushing the numbers on your pump.

I also want you to know how much I wish that I could take this disease away from you.  It hurts me so bad to know that you will not live a completely normal life.  I know that diabetes care has come so far and hopefully in your life time they will find a cure but I want more than anything to give you a normal life.  Although I want to take away this disease,  I also understand that you were given this trial because you are strong enough to bear it and there is a reason for it.  Heavenly Father knows you by name and knows of your circumstances. He loves you so much.

I am so blessed to be your mom and to have you as my daughter.  You are so strong and brave.  I truly hope that I can someday have your courage and strength.

I love you!

Love,
Mommy

Negative Corrections

I have one thing that I am not pleased with when it comes to the T:slim. I think that it is everybody's complaint.  The T:slim does not do negative corrections or backwards corrections.  If you have no idea what that is I will try to explain it but first I am going to have to explain about carbs and our equation that we use to dose Rose.

We have all heard of carbohydrates before but learning to recognize what foods have carbs and which ones don't are essential for T1D's.  Luckily there are some really cool apps out there that you can search for specific foods.  I can't imagine trying to memorize all of the foods and their carb amount.   We also read a ton of labels.  On all of your food that you buy from the store they list how many carbohydrates there are per serving.  Here is an example of a label and where to find carbs.

http://lowcarbdiets.about.com/od/nutrition/ss/nutritionlabels_5.htm

In this food label there are 15 g of carbohydrates in every 20g serving.  When we were first diagnosed I was just guessing how big a serving size it but you never knew for sure.  So I bought myself a scale and I love it.  I no longer have to count our every carrot or piece of cereal because I just put it on a scale. Here is one that is similar to mine. Two things to consider buying a scale is to make sure you can zero out the amount when adding new food to plate and also comes with ounces and grams.

http://www.sears.com/ozeri-pronto-digital-multifunction-kitchen-and-food-scale/p-00824520000P?prdNo=3&blockNo=3&blockType=G3

Okay so now that you know a little bit more about carbs and how to find them here is Rose's equation that we use to calculate out her insulin dosage. 

First we have to calculate if there is a correction dosage.  

(Blood Glucose- Target Blood Glucose) / Insulin Sensitivity Factor

For Rose her equation looks like this...

(BG-150)/200

Once we have figured out her correction dosage than we need to figure out how much insulin she will need to eat her food. Rose's ration right now is 1 unit of insulin for every 60 carbs.  For example a piece of bread has 15 g of carbohydrates.  Rose would need 0.25 units if she ate that piece of bread. 

Last part of figuring out Rose's insulin dosage is adding up the two above answers to the equations.  This is how we lived for almost four months until we got the pump.  The pump does all of our calculations for us and then it doses her too.  So cool.  

Remember how I said that T-slim doesn't do negative corrections or backwards corrections.  When we are trying to figure out Rose's correction dosage is doesn't account for Rose being lower than her target BG.  For example...  If I tested her blood and she was at 100.  

100-150= -50  

 -50/200= -0.25 

For her food she is having a piece of pizza. One piece of Cheese pizza is 27g.  

27/60= 0.45 units of insulin for pizza

Rose should only need what ever the correction plus the food insulin to eat pizza.  

Which is 0.45 - 0.25= 0.20 units of insulin.  The T-slim would not calculate the negative amount of insulin so the T-slim would say that she still needed 0.45 units for the pizza. 

Sorry that is a ton of numbers but I hope it helps you better understand what we do every time we eat.  For a while I hated eating and I still hate meal times.  Not only do I have to cook and serve dinner but I also have 2-3 minutes of calculating insulin dosages.  The pump has made it a lot easier but we still have to make sure the pump is calculating properly. 

I hope you have a wonderful Thanksgiving.  We have so much to be thankful for and we are so blessed.  

 

Keytones

I have been trying to figure out what is another interesting thing about diabetes.  One of Rose's favorite things to test for is keytones.  I think it is because I get to catch her urine in a cup and then test it. She is always asking me before her "pee is down" if I need to check for keytones.  It is one of my least favorite things to test for. If you would have asked me ten years ago what I would have to do for my kids I would never had said catch their urine and test it for keytones.  Oh the things you do for your kids.

Before Rose was diagnosed with diagnosed with T1D I had no idea what keytones are.  So for those of you who are not familiar with the term keytones here is an explanation.

A typical healthy body uses glucose as fuel for the body. When there is not enough insulin in the body to use the glucose, your body turns to fat to use as energy.  Keytones are acids found in the urine and blood of people whose bodies burns fat for fuel instead of glucose.  When you are first diagnosed with diabetes you keytone level is through the roof because your body has been using fat instead of glucose to function, because you have no insulin.  Remember my analogy about the plate of food being in front of you but having no mouth.  You body will do everything it can to survive so it turns to fat as a fuel.  High levels of keytones in your blood and urine will make you very sick and is known as Diabetic Ketoacidosis (DKA).  DKA is a serious condition that can lead to death or a diabetic coma.

Most diabetics are able to manage their diabetes well enough that there are no traces of keytones in their urine.  If you have two Blood Glucose test that are above 250 or if you are gettting sick, then there will most likely be some traces of keytones in the urine. It is simple to fix though if you catch it early enough.  You increase water intake and also increase the amount of insulin to help get rid of the acid.

Testing for keytones is easy.  You catch the urine then stick a test strip into it.  The test strip changes colors depending on the amount of keytones in the urine. It is a great indicator if we are dosing Rose properly.  Here is a picture of what a test strip looks like and the different levels of keytones that are found in your urine.

http://e.cityweekly.net/cityweekly/2011/06/09/#?article=1291751

An interesting fact about keytones, is that you are either diabetic or losing fat if keytones are in your urine.  I guess it would be a good way to see if you are actually burning fat when you are working out. Or if you are curious if your child is diabetic you can always test for keytones.

On a none diabetic note we went fishing yesterday with my Dad and Rose's cousins.  It was so much fun and I loved letting Rose feel like a normal kid.  She got to eat her first Happy Meal ever and eat snacks whenever her cousins did because of her pump.  We love our t-slim.

Snapshot Sunday

These are old pictures of Prince James but he melts my heart.  Sometimes I wonder if I don't give him enough attention because I stress and worry about Rose all day long. So today this blog post is all about him.

 I hope he knows that I love him and I am so grateful to be his mom.  We have always had a special connection since the day he was born.  James is always trying to get everybody to laugh at him and he is a little monkey.  He climbs everything.  His new favorite place to climb is on top the back of the toilet and hang from the towel rack. His one down fall is that he does not sleep.  I thought Rose was a bad sleeper when she was younger but James diffidently is worse.  We love him even though we never sleep.  Just last night he was getting mad with me because I wouldn't nurse him.  So he got up and went into the other room.  Thirty seconds later, he came back in the room with a flashlight.  He thought he was so clever.  One of my favorite parts about being a mom is watching Rose and James play together.  I love that they get along and he loves to do whatever Rose is doing. We love you James and so glad that you are part of our family.

My first time giving a shot...

I need to start out by saying that I have always been terrified of shots.  When I had to go get my blood drawn for both of pregnancies I had to fight not to have a panic attack.  The whole mental image of a piece of metal going into my skin is just sickening.  So when we were in the hospital and they told us that Rose was going to need shots at least four times a day, it was time to over come my fear.

My husband did the majority of the shots the first day in the hospital.  I didn't want to give a shot and I especially did not want to hurt my child.  As you can imagine Rose acted like any normal child does when they go to the doctor to get immunizations.   Rose screamed, begged, and pleaded with us not to give her a shot.  Now try to imagine giving your child a shot four times a day.  For the first two weeks this is what we heard every time it was time to eat. Rose would beg and plead for us not to give her a shot. Luckily my husband was able to step up and actually do the shots.  I was totally okay with just holding Rose and trying to calm her down.  I had no desire to give shots and if I had my way, I would have gone to work and let my husband stay at home to watch my kids just so I didn't have to give shots.

By the second day in the hospital reality started setting in.  I was going to have to give Rose shots in order for her to live.  If I did not she would die. So I finally got up enough courage to give Rose a shot.  I think I stressed about it for a good four hours before I actually gave her the shot.  My husband held Rose down and I stuck the needle into her arm.  Watching the metal being inserted into my child made me sick to my stomach. I tried to hold back the tears so Rose wouldn't sense how scared I was.  I wanted more than anything to be strong for Rose.  She was dealing with so much and she didn't need to worry about what I was going through.  I pushed in the insulin and quickly took the needle out.  Rose was crying and wanting to be comforted.  I gave her a hug and a kiss to try to comfort her. My emotions caught up with me and I had to get out of that room.  I walked into the hallway, past the nurses station and into the stairwell.  I sobbed.  I did not and still do not want to give shots to my child.  I hate it.  I hate having to hurt her every time that she eats.

Rose's newborn photo.
https://www.facebook.com/FabianaBeatrizPhotography?ref=br_tf

As a mother you want to protect your child from everything that is going to hurt them.  If you could you would take away their sicknesses, their pain, and you would die in order to save their life. No matter how much I did not want to give Rose a shot I also was going to do everything in my power to let her live.  So I made the choice. I was going to have to inflect pain on my child so that she could live. Although she begs and pleads with me even to this day not to get a shot, Rose needs them to live.

It has been so hard to get used to giving your child a shot, but now I am able to set aside my emotions and just do it.  Rose is much better with getting shots, she still tries to talk you out of it, but she also understands that she needs insulin to eat.  We have been very open with her and have tried to explain to her what is going on and why the shots are necessary.  I don't know how much she actually understands but I think that helps her know that we are trying to take care of her as best as we can. We have always told Rose, that we do not like giving her shots and we wish we didn't have to, but she needs her insulin to eat.

The best part about the pump, is not having to give Rose shots every time that she eats. She gets a shot every 3 days instead of five times a day.  Rose and I are really starting to love the pump and now that I have been using it for a week with insulin, I am ready to do some trail and error research to figure out how to dose Rose perfectly with every type of food.

The Highs and Lows

Before Rose was diabetic I had no idea how much diabetes is a number game.  I grew up with a diabetic Mom but I was never really involved with all of the steps of managing her diabetes.  So now that my life revolves around Rose's Blood Glucose number, I've realized diabetes is a number game.

For those of you who don't know what Blood Glucose (BG) is, I will try to explain it to you. Every time a person eats, we consume carbohydrates which are the main source of energy for your body. The carbohydrates are converted into sugar or glucose which allows are bodies to function. When the amount of glucose in our blood rises, our pancreases releases a hormone, insulin, to help the cells use the glucose that is the blood. Type 1 diabetics (T1D) do not produce any insulin. For T1D's, it is kind of like having a plate of food in front of you but no mouth to eat it. Insulin is essential to live.

We test Rose's BG anywhere from 5-10 times a day because if she is high she needs insulin to help her use the glucose in her blood and if she is low she needs more glucose in her blood to function.  High levels of glucose in a person's body for long periods of time start to damage eyes, kidneys, nerve, and blood vessels.  Very Low blood glucose causes comas, seizures, and death.

So here is where the numbers come into play.  Rose is supposed to have a BG anywhere between 80-150.  That is her target range.  Anything greater than 150 we try to lower using insulin and anything lower than 150 we treat with food. 150 is our special number right now.  Very low BG starts at anything lower than 40.  If you can get the person with low BG to eat than you can prevent them from getting any lower.  If they become unconscious or start having a seizure you are to use a glucagon pen.  Glucagon is also a hormone that is produced in the pancrease that rises your BG.  Insulin and Glucagon are the complete opposites. We have two glucagon pens that we have with us at all times in case of emergencies.  They look like this.

http://en.wikipedia.org/wiki/File:Glucagon_emergency_rescue_kit.JPG

I think I know what to do if Rose passes out on me, because she is too low, but it scares me.  This is why we check her every four hours all night long and check her through out the day to help make sure she isn't too low.  Today when she was at 49 I couldn't believe it.  It made my heart race and I was scared.  I was grateful to have some food on hand and to prepared for such a number.  

Diabetes is a number game.  My whole life revolves around Rose's BG number. Sometimes I want to climb into my bed and hide from the stress of making sure Rose stays with in her range.  But the reality is that I can't ignore it. My child needs me to take care of her in order for her to live. 

Our Diagnosis

It was Tuesday, August 6th, 2013 when we found out that Rose was diabetic. Our diagnosis story really begins on Saturday, August 3rd.  We went to the local water park to play with cousins and enjoy the warm weather.  I didn't think much of it at the time but looking back I should have recognized some of the symptoms Rose kept telling me. All day at the water park Rose told me she was thirsty and had to go to the bathroom. I just figured that it had something to do with being in the sun and swimming for a long period of time.  It was a pretty normal day.  That night we had family pictures.  Rose was pretty good, except for a couple tantrums. But she had always thrown tantrums so I figured it was normal plus she was exhausted from swimming earlier that day. I first became suspicious of something being wrong with Rose on Saturday night, she wet the bed 4 times.  Rose had been potty trained since she was twenty months and yes she wet the bed every once in a while but 4 times in one night! She had never done that before.  We went to church on Sunday morning and took Princess to nursery.  During her two hour stay in nursery they had to come get us twice because she said she had to go to the bathroom but couldn't go and she kept telling us that she was thirsty ALL of the time .  We would give her something to drink and it would never satisfy her.  Sunday night, we had dinner with my family.  I remember discussing with my family what could be wrong and if I should be concerned with Rose's behavior.  I remember specifically telling my family that I was worried that she might be diabetic.  (I know now it was my Heavenly Father trying to prepare me for this trial.)  We went home, Emma wet the bed 2 times that night. We had a full day planned with hanging out with my sister who had flown in from out of town.  Rose did the same thing she had done the two previous days, complained of always being thirsty and having a hard time peeing.  Monday night, Rose didn't wet the bed but on Tuesday morning she said it hurt to pee.  I called the doctor and set up an appointment with our pediatrician at 10:00 AM.

I took the Prince and Princess to the pediatrician.  When we arrived they asked if I could catch some of Rose's urine.  Rose was so great and went to the bathroom right away.  As we waited for the nurse to come back and tell us if Rose tested positive for a Urinary Tract infection, I once again felt like Rose might have something more serious than just an infection.  The on call doctor came in and said that the urine test came back negative for an infection but there was sugar in the urine.  She then asked if she could test Rose's Blood Glucose. My Mother is a Type 2 diabetic so I knew the process.  I don't know how I did it, now looking back, but some how I was able to hold Princess Rose still enough to test her blood.  She was at 535. (If you don't know, the average blood glucose is usually between 80 to 120.)  I remember the look on the doctor's face as she told me that Rose was a type 1 diabetic and that we needed to go to the Downtown Hospital as soon as possible.  She asked what she could do to help me and I told her I just needed to call my husband and my mom.  The doctor stepped out of the exam room and I called my husband and my mom.  I remember my kids being so quiet and letting me make the phone calls that I needed to make.  (Which is so not like them.)  I know that there were angels round about me helping me with my kids and helping me deal with this devastating news.

We rushed down to the hospital and I met my husband in the parking garage.  We checked into the Children's Hospital and we began the long process of getting an IV into Rose.  Luckily my parents had arrived to take Prince James for a walk, so we could put all of our attention on Rose.  Even now almost four months later, I struggle talking about this part.  It was horrible.  I can't even begin to tell you how hard it was to try and get Rose to let us put an IV in her arm.  We tried three times with no luck and then finally after wrapping her up like a burrito, in a blanket, we were finally able to hold her still enough.  It took us two hours to do it.  Every person in the room was exhausted of trying to hold Rose down.  She is one very strong girl and man does she have a temper.  Rose had no idea why we were trying to hurt her and she kept begging us not to hurt her.  Words can never express how horrible I felt.  I wanted to rescue her from the pain but I couldn't.  I was so torn.  I tried really hard to hold it together when I was in the room with her but I remember loosing it several times.  I would excuse myself and cry in the hallway.  I didn't know how I was going to care for my baby and then the reality hit me, Rose was never going to be able to go a day with out being poked.  One of my biggest fears has always been needles and here I was forcing my child to overcome her fear of needles.  It was heart breaking for me.

One of the first emotions that I felt, was guilt.  I felt responsible for her being diagnosed with diabetes.  I felt responsible because I had made her body. Maybe if I had done something different during my pregnancy  I would have been able to prevent her diabetes.  It was so hard not to blame myself for her disease, but the reality is I couldn't have done anything to change her diagnosis.  This is her trail that she will always have to bear and it is all part of Heavenly Father's plan for us.  I had to trust that and let go of the guilt I felt.

When we finally got the IV in Rose, we settled into the hospital.  We would be there for the next several days learning how take care of Rose.  The hospital stay was exhausting.  The people at the hospital were great and we had so many family and friends come visit Rose.  It was wonderful to be surrounded by such wonderful people.  But it was also very overwhelming.  All of the new information, constantly checking Rose's BG, giving her insulin shots, counting carbs, and trying to keep it all together so Rose would not get scared. It was a whirlwind of a week and we were so glad to make it home.

Snap Shot Saturday

Today we spent the whole day as a family and it was great. We went shopping this morning and stopped by Rose's great grandma's house to help her with her phone. Rose is named after her and I love when we get to hang out with her. She means so much to my husband and we are so grateful for her. Then Princess Rose went on a date with her Dad. It was nothing big but they headed out to go get Daddy's old truck ready to sell. I got to spend some one on one time with Prince James. It was such a relief to take a break from constantly worrying about diabetic things and just enjoy James's personality. He is so quiet compared to Rose. When she isn't around you hardly know he is there. I love them both so much. 

We are really starting to love the pump. We keep asking Rose what she thinks and she tells us all the time that she loves it too. It really doors make life a lot easier on all of us. I am so grateful that we decided to get the pump. 

Babysitting duty...

Last night on the pump was good. I didn't sleep at all but at least I knew that Rose wasn't going to drop too low. I am absolutely terrified of her getting to low. I stress and worry about that all of the time. I was especially nervous because we were starting a new insulin schedule with her. Before last night if we could get Rose's BG between 180 to 200 at 11:00pm we knew that by breakfast she would be  between 100-115. Last night was a whole new ball game. We didn't know how the insulin delivered to her all night would effect her BG. Rose was lower than I like her to be all night. I kept giving her 10 carbs of milk every two hours to keep her BG from dropping too low. Rose was ecstatic every time I woke her up to give her some milk. It kills me to see how happy she is when she gets to have milk. We don't let her have it very often, except for with meals because it has carbs, we try to get her to have water or crystal light instead. For awhile I bought chocolate almond milk to give her in the middle of the night and she loved that too. Chocolate almond milk doesn't shoot her BG clear into the 300s like chocolate milk. One of those weird thongs you learn and stress about when you are a mom of a T1D.

Today is National Diabetes Awareness Day. We are sporting light blue clothes and I am even wearing a light blue bracelet. We went went to downtown Boise to celebrate with some other families who have T1D. It was good to meet knew people and here their type one diabetic stories.

I wanted to share a cute story about princess Rose today. She was playing in her room and I went in there to check on her. She informed me that she had a new baby octopus named Leela. I was then put on babysitting duty. Rose instructed me how to carry her. After about an hour of walking around with Leela attached to me Rose informed me it was time for Leela's nap. She took Leela from me and they headed to my bedroom. About five minutes later I opened my bedroom door to find her reading to Leela. It was so cute. I am so proud to be Rose's mom.

It's official

Rose is officially on pump therapy!  We are all very excited. rose loves not having to get shots and really likes the fact that she can have snacks. Which is huge for a three year old. She is almost like a normal child now. It is amazing. Today, I love the t-slim.

 We met with our diabetic specialist today and changed her from saline to insulin. We are keeping a pump log with everything she eats, BG (blood glucose), and insulin dosage. It has been a while since I have kept such a detailed record of what Rose's food intake and BG is. When we first got home from the hospital I was obbessed with knowing exactly what Rose ate and her BG. After our first appointment with our endocrinologist, I lost motivation. I think it was the only way for to rebel against diabetes. We still dosed Emma with insulin, but we were doing it all in our heads. Now that we are entering the data into the pump, the pump calculates the insulin dosage, so I know we are being very accurate with what Rose's body needs. Which is big relief. It is a lot more work but I know it will make Rose healthier into the long run.

I have been thinking lately a lot about our diagnosis and some unresolved emotional scaring that I have from it. I don't really know if I will ever get over how traumatizing it was me, but especially for little Rose. One of these days, maybe it will be beneficial to write on the blog our diagnosis story.

JDRF advocates

We met with our can congressman, Mike Simpson, as part of the JDRF Advocates Group. We thanked him for his continued support for the Promise to Remember Me campaign.  If you have never looked into JDRF it is an amazing research foundation that has some amazing research going on. I am most excited about the artificial pancreas project. I am always amazed at the technology out there. What a relief it will be when we can actually get our hands on an artificial pancreas.

Day Four...

I decided that I am no longer allowed to blog on the days that I am struggling.  I just begin hating everything and it probably isn't the best time to write. But honestly it helps me and I hope that it is helping someone else out there who is feeling the same way I am about diabetes.

 Today, I am in a much better place.  Diabetes is just part of life and I CAN do this. Probably a good thing because we did our first infusion change today. Rose was not excited. She cried and  begged not to have it changed. The funny think is that when we actually poke her with the needle she doesn't even feel it. Rose is just afraid of the thought of pitting the infusion in. I do not balmae her one bit but is nice to know that it doesn't hurt her when we do it.

 I will walk you through it because it is very interesting how the pump goes together.

Here are all if the supplies you need to change the infusion set and to load the insulin cartridge for the t-slim.

First you have to stop all insulin delivery and disconnect the pump from the old infusion. This is Roses old tubing and part of the infusion that we disconnect to take baths. I don't know if you can see it or not but if you look closely you can see a small needle in the middle of the plastic connector.

Once Rose is disconnected then we take the old insulin cartridge out and replace it with the new one. It kind of looks like where the batteries would go. You slide the old cartridge out and put in the new one. Then it is time for the pump to start pressurizing the cartridge. This take a couple minutes but you can hear the pump working. 

 Next, you feel a syringe that comes with your cartridge replacement. I started doing this but then I let Rose actually draw the saline into the syringe. She thought that was pretty cool.

After the syringe is full you insert the needle into the cartridge where the tiny white dot is. It is just like the top of a vile of insulin.

Once the insulin cartridge is full you have to fill your tubing with insulin. I always thought the tubing was empty but it is always full of insulin. So this pink thing is the insertion applicator. It comes in a container that kind of looks it would hold head phones. You connect the new tubing to the pump and unwind the tubing. Then you press a button and the pump will start pumping insulin into the tubing. You let it pump almost 20 units of insaline until you see a small bead at the end of the infusion.

 This is the top of the infusion applicator once you have taken of the lid. If you look closely you might be able to the needle and the catheter that stays inside rose.

To place the insertion on Rose you remove the adhesive around needle and catheter. Pull back on the white center piece and place it on the new freshly cleaned skin. Then when you are ready you squeeze the pink side of the applicator. Then you pull the pink part back, put comes the needle, and the insertion is in place. 

It is really neat process and I am so grateful for the engineers and scientist who have made this so much easier for us. 

Day three...

When I took this picture this morning I was kind of upset that Rose was sticking her tongue out. But this picture describes exactly how I feel about diabetes today. I have days were having a child with T1D is just part of life and it is no big deal, 

but today I hate it. I hate having to give my child shots, I hate that I can't let her eat whatever she wants, I hate that she 

can't eat when ever she is hungry, I hate poking her on her tiny little fingers six times a day, but most of all I hate that she is missing out on part of her childhood.  No three year old 

should ever have to worry about some of the things she does. For example how many carbs are in a specific type of food she wants. Today it is hard to even look at her and not cry because she has to live with this disease her whole life. It sucks and I cannot take it away no matter how much I want to. 

As far as our third day on the pump goes... I love it but I hate it. I hate the stupid cord that gets caught on everything. But the thing I hate the most is how hard it was to try to figure out where Rose could wear the pump with a dress on. She doesn't like skirts and I figured she could just wear the pump on her back.  Well that didn't work. So then we tried putting it on her tights. Well it kept falling off. We will have to figure something else out for next Sunday. I have been looking into a belt to hold it under her clothes and we even talked about putting button holes on the sides so we can thread the tubing through that.

 I will have to research what to do.

I love that it calculates down to the hundredth unit how much insulin she needs. It will help us make sure she is always getting the right about of insulin for her food. Which is amazing. Also I don't have to keep a record of everything we eat, her blood glucose readings, and the amount of insulin she gets. The pump keeps track of everything, besides her food. I love that. Well hopefully tomorrow will be better, it always is. 

Snapshot Saturday

It is family night movie night at our house tonight. We spent all day cleaning and now it is time to enjoy being a family. 

Our second day with the pump went pretty well.  Rose is getting used to it and isn't so sensitive to the insertion. She took a bath today, rode her bike, and also is now officially in charge of unlocking her pump. She is so fast at using it. It is crazy 

how bright and adaptable a three year old is.  

Little Prince is very curious with the pump. 

He wants to do everything his sister does so

 I am not surprised he wants one too. 

We have really liked everything about the t-slim pump, so far. The one complaint is the process of locking and 

unlocking the bolus delivery.  It would be better 

if you didn't have to go threw so many screens to get to it. 

Our first Pump meeting...

We had our first appointment with our Certified Diabetes Specialist today about installing Princess's Tandum t-slim pump. It was a lot different than what I thought it was going to be. I guess, I figured that since Little Princess gets poked all the time, that she would be fine with getting the 

insertion placed in her belly. But boy was I wrong. 

Our appointment started at 9 o'clock this morning. We spent the first two and a half hours going over how to work the pump. From the different ways insulin can be delivered to how to set up all of her profiles (One of these days I will have to describe how the pump actually works but for now I will pretend you know what I am talking about ;-) The Little Princess did a great job sitting there listening to our specialist. I am so glad I brought her colorong books, puzzles, and preschool pages to entertain her. But by the time we were ready to do the insertion she was done. 

My husband held her down, and I actually did the firat insertion. I told my husband later, if I hadn't  done the first one,  I dont think I would have ever been able to do it. The Little Princess screamed and tried to get out of her dads tight grip.  She begged and  pleaded with me not to hurt her. I tried not to get emotional and focused on what the certified diabetic specialist was instructing me to do. The little princess didn't even notice when I inserted the needle and then took it out. I think she was more afraid of the unknown than it actually hurting her.  She did not want anybody to touch the insertion for a good hour and she kept complaining that it was hurting her. We doubled checked everything and there wasn't anything wrong with the insertion.  

We tried to get her to move so she could get used to the new attatchment. The first time she tried to pick up a fallen sticker off the ground took her a good three minutes. She was so hesitant to bend over with the insertion and pump attatched to her.  We have had her attached to the pump now for 5 hours. She is climbing, running, jumping, and playing  completly normal. The Little Princess has even learned how to ride in the car, go to the bathroom, and sleep with a pump. She is a very brave little girl. I am so pround to me her Mom. 

We meet up with our certified nurse specialist on next Wednesday to evaluate our trial run. For the next five days we are running saline instead of insuline. So for the next five days, Little Princess is getting extra water through her pump and she still has to have her normal insuline shots. She was very disappointed that she still had to get shots in her tummy to eat.

Our T-Slim Arrived...

Our Tandum t-slim insulin pump arrived on Tuesday, when me and the kids were on the coast. I had no idea that it would come on such a big box. We are so excited to have this. On Friday November 8th, we have our first appointment with our certified diabetes specialist to start the long process of getting Emma on the pump. We will have over six and a half hours hours of education on this pump and it will take almost a full month before Little Princess will be hooked able to use it. I had no idea it would take this long to get her started but I would rather take my time and learn how to use it then jump right in. When Little Princess saw her pump (We call it her very own insulin cell phone) she was so excited. I am surprised by how little it looks even when we attach it to her hip.

Introduction

I am excited to start journaling about our experience with raising a child with Type 1 diabetes. It is a learning curve of how to care for your child and we are just beginng to feel like we know what we are doing. My husband is a financial advisor and is very analytical. I, on the other hand, am a creative thinker.  We have dealt with the diagnosis of our child very differently. It has been very emotional for me and my husband has been very concerned with the cost of every thing. I am not going to lie it has been so hard and sometimes I feel like I overcome one emotional struggle and another arises. Not to mention the financial burden of paying around $300 a month just so our Princess can live. When Rose was first diagnosed in the hospital it was so overwhelming and there was very few places on the internet that you could find information on nutrition, financial support, and emotional support for young children that have type 1 diabetes. I hope that this blog will help bring families together that have children that our Type 1 diabetic and also provide a place to find real life experiences. Our Princess Rose is now three and a half. Her little brother Prince James is 15 months.