Know the Signs

Today I thought that I would give a healthy reminder of the warning signs of Type 1 Diabetes. Knowing these symptoms could potentially save a life. Time is of the essence in the diagnosis of T1D because slowly that person's body is poisoning itself and shutting down! So please, share this with all of your friends and loved ones!

If you notice your child, loved one, friend, or neighbor exhibiting ANY of these symptoms, don't take the chance, demand to have them tested for T1D right away! It is always better to be safe than sorry, and it's as simple as a urine sample or small finger poke to rule it out!

Knowledge is Power!

Walking on Sunshine

This is our first summer having J on an insulin pump and CGM so there once again is a learning curve as to how to manage:
*The insulin pump settings with having so much more exercise and being exposed to heat.
*How do we get his OmniPod and Dexcom to stay adhered on his body while he is swimming and so active.

While we were vacationing in Florida and J was swimming in the pool we noticed that his OmniPod started to come off after only a short time of being in the water. We made a mental note of that and when Friday of last week came and we decided that it was time to take the first dip into our pool, we took some precautionary measures and taped both his Omnipod and Dexcom sites before he got into the water. Well it didn't take long for the OmniPod to come right off! We decided that since his blood sugar was good and he was going to continue to swim that we wouldn't put a new pod on until after he was finished swimming. We just kept a close eye on his Dexcom numbers. Amazingly his BGs stayed level and he got to finish playing. Shortly after getting out of the pool and drying off, his Dexcom site fell off as well. My conclusion......the tape didn't have enough time to adhere to the skin and form a seal before he got into the water.....mental note! (We normally only have to tape the Dexcom, as the adhesive is very poor and will only last a few days, even under normal conditions.)

Before dinner we replaced his pump and CGM and this time I decided to put on the numbing cream for his OmniPod site so that it would be a little more comfortable for him. He is still very anxious and nervous about the anticipation of the insertion, since we never know when exactly the "click" is going to happen. We have only used this cream a few times before and it never seemed to be a problem. We got both of the site changes completed and ate dinner. After dinner we let the kids jump on the trampoline, after only a short time J yelled for me......his pump had come off again! WHAT THE PUMP IS GOING ON???? We brought him into the house and it occurred to me that we had only cleaned the skin before putting the numbing cream on, not after, and maybe that caused the adhesive to weaken on his pump.......mental note!

This time, we changed his pump without the numbing cream and I immediately taped both the OmniPod and the Dexcom knowing that the next day was his birthday party out in the heat and also that we would be swimming again that evening. Worked like a charm! Both stayed on without any issues at all. Cue the Happy Dance!

The tape that we now use and LOVE is called Opsite Flexifix (pictured above) made by the amazing Smith&Nephew. I have completely fallen in love with their products! (Their adhesive remover is beyond compare!) Leading up to using this tape, we had tried every tape under the sun and even Skin-Tac which J was not a fan of, he said that it hurt him and made him itch! Nothing worked for the 7 days that the Dexcom is worn. Until now....This tape is very thin, almost skin like, and we haven't had a single complaint from him while he is wearing it. It does an amazing job of staying adhered to the skin for the 7 days and is almost "difficult" to remove when needed. So, if you're looking for new products to test out, give these a try! We order our supplies off of Amazon.

While this is our second summer dealing with diabetes, as I mentioned it is our first with the Dexcom G4 CGM and insulin pump. We are now able to see how the heat and exercise are affecting his blood sugars both during activity and after. Lately his blood sugar average overall has been amazing but there are times he is running a bit on the lower end and even dropping low. This indicates that we have to make some changes to his basal rates and perhaps even start suspending insulin delivery during swimming and jumping on the trampoline. As the next few weeks go on, I will be able to go into more detail about how we are altering these and the precautions that we are taking to prevent low blood sugars, but right now we are still in the trail and error stages. So stay tuned :)

As always, I'd love to hear how you deal with the summer heat and exercise, so please comment below or email me with your summer practices!!

Breaking Bad

How do we educate the world? This is a question that I ask myself on a daily basis. I have encountered numerous uneducated people, read articles and even seen things on television shows that just make my skin crawl. Now, I am not saying that I was educated about the differences with Type 1 and Type 2 diabetes before J was diagnosed. Did I know there were two type's? Yes! Did I know the difference? No! This is why so many people lump them together into one category. However, I would have never offered advice nor spoke about the subject with my lack of knowledge.

Just the other day on a popular television show (The Little Couple on TLC) Bill Klein made a remark that had me up in arms and tweeting him. It was his son's birthday party and his son was handed a large piece of cake, in his interview he said this "I was given the opportunity to take the cake away from my son, or diabetes" Why do people think that eating a piece of cake would cause diabetes? More importantly why would you think that making a remark like that is even remotely acceptable? He is married to a Neonatologist and is an educated man, yet he found it socially acceptable to poke fun at diabetes! There is NOTHING funny about diabetes, whether you have Type 1 or Type 2. No one pokes fun at cancer. Why? Because it is a serious life threatening disease! What makes diabetes any different? There are babies, small children, teens and adults fighting for their life daily with no treatment or cure available to them. Some of those people lose their lives because of diabetes, even when they take the best care they possibly can of themselves! I have had people tell me "It could be worse, just be glad it isn't cancer" What kind of statement is that? Why do you think it's acceptable to hold one disease's severity over another?  My son can still die from having Type 1 Diabetes and my son has to live the rest of his life with this disease!!

Since J was diagnosed it is no secret that I have tried my hardest to raise awareness and education about Type 1 Diabetes and the effects that it has on his daily life as well as our own. I figure that if I can touch just one new person and help them understand, then that person will continue to spread that knowledge on to the people in their life. I don't expect society to know everything about T1D, but I do expect them to listen and not continue to spread the stigma that it is ok to downplay diabetes and it's complications, nor is it ever ok to make diabetes a joke. People die every single day from this incurable disease. Insulin is NOT a cure, it is just merely life support until we have a cure.

If you have lived in this life for an extended period of time, I know that you have witnessed these things as well. Please, don't get discouraged from setting the record straight, speak up and defend diabetes and all of those who are fighting to beat the odds! Continue to share your story to those around you, you are making a difference!

If you are new to this life then please use your voice and help us spread awareness and education. We might just be one person, but if we all stand together and fight then we will be a force against society and it's stereotype!

Together We Stand and Together We Will Fight!
DIABETES STRONG

What diabetes?

Yesterday was J's 5th birthday! I am a full believer that my child should not suffer or miss out on anything because he has Type 1 Diabetes. J makes sacrifices every day of his life, so when it comes to his birthday....all bets are off!

Yesterday, he did and ate all of his favorite things! He ate powdered donuts for breakfast, a cupcake for his class celebration, ice cream parlor lunch and treat, played outside for hours and then we took him to his favorite place for dinner John's Incredible Pizza! (similar to Chuck E. Cheese but better) It was a day full of carbohydrate guessing but we nailed it and only had two minor BG issues all day (One Low and One High)!

We don't normally cram all of those "treats" into one day, not because he is a diabetic but because no child needs that much sugar on a regular basis! However, you're only 5 once and to that I say.....What Diabetes? He can have whatever he wants and we will take the steps needed to prepare and plan for it.

This approach might not be for everyone but for those who aren't as familiar with this disease, Type 1 Diabetics CAN eat sugar. They don't have to eat sugar free foods. Sugar Free does NOT mean Carb Free! Type 1 Diabetics do not count sugar to dose insulin, they count carbohydrates, and if you read the labels on "sugar free" foods you will quickly realize that most have more carbs than their regular counter parts and are crammed full of artificial sweeteners and chemicals. Now, I will say sugary foods will spike his blood sugar, but with proper planning it isn't a problem and it will not harm him in any way to have a small spike for a short period of time.

 

 

It is important for me as a parent to teach him to properly care for himself. If I single him out and don't allow him to be a kid, then he will only act out and rebel against his diabetes as he grows. The last thing that I want is for my child to feel like he has to sneak sugar and or lying about it because he doesn't want to get into trouble! Just like everything in life, you eat it in moderation and you give yourself the insulin for it!  

 

He is and always will be, a kid first!

Tricks of the Trade

Today is Day 5 of DBlogWeek and today I will be sharing some of our tips and tricks to the daily management of T1D

The Guess and Check- when we are not at home and don't have access to our scale to weigh J's food, we use our Guess and Check method. The Calorie King App has quickly become our go to resource for finding carbohydrate counts when nutritional information is not available. However we still have to guess the portion sizes etc. Whether J is at school or with the both of us we both look at the food and will come up with a total carb count for each item and then we will compare our two numbers to decide what number to go with....at times we are the same and there are times that we are way off from each other and we will meet in the middle or go with the lowest number to be on the safe side.

Toothpick- This is a new trick that we learned while being on vacation and having a insulin pod malfunction sending both the PDM and Pod into a tizzy fit with alarms blaring and error messages displayed. I had to call the phone number displayed on the PDM to report the problem and she told us the only way to turn off the error message and alarm was to use a toothpick or something of similar size to push the reset button on both the back of the PDM and the back of the Pod. You can also use anything that is similar in size but we now have a toothpick stock in the OmniPod carry case because you never know where you will be when something like this happens and you might not have access to a toothpick, paperclip etc.

TSA- We travel a lot and always have our children with us, so I have learned that when you make things easy for TSA, then your experience is typically easy and speedy. After J was dx and we had planned our first trip, I knew that we would be carrying A LOT of diabetes supplies. I knew that we would need a special bag for travelling so, I went on the hunt for the perfect TSA bag. I found a clear soft plastic carrying case. This is perfect because TSA can see everything inside the bag without having to unpack it's contents.

Medical Alert- These are the most important things in our life. J wears a silicone bracelet with a Type 1 Diabetes medical alert but, I also found Velcro straps that have a medical alert notification and have a paper stored inside with all of his medical information. I put one on his car seat strap in case we were ever in a car accident and my husband or myself were unresponsive. I also have one on his backpack in case something were to happen to J when he is not with us, or incase his backpack ever got lost. These straps are wonderful because they can be used for sooo many different things and when you have a young child unable to tell people of his medical condition taking these precautions are a must!

Hazardous Waste- we used to buy the containers and then take them to the local dump when we had a few full ones (they take them for free) in California it is against the law to throw them in your garbage. After a few trips to the dump we were notified by an employee that they have free containers to give out to people that want them. So, if you're looking to save a little extra money ask your local disposal site if they have any they can give to you. We don't fill them up as quickly now that we are pumping but it is still nice to have one less expense!

Discount Cards- Shortly after J was diagnosed I went online to the manufacturer's that we were using to see what type of offers they have for their customers. I found that Freestyle (and most other's) have a discount card. This card is for additional discounts after your insurance and helps to cover some of your co-pay for your test strip supply. With this card we only pay $15 a month for our regular test strips!!

 Glucagon App- There is an app available for your phones!! This app allows you to log in your kit expiration dates, do practice steps for administering the shot and will also remind you to practice every 3 months and if you're in an emergency situation it will be a lot easier to reference than the little paper in the kit! We not only have it on our phones, but have also had family and J's school caregiver download them as well so they have an easy reference and can do the practice steps to be familiar with the process, if god forbid the need ever arises. *This is currently only available for Apple products

Snap Shot- Another great tip from our Endo was that every time you make a change on your insulin pump, take a snapshot with your phone so that if something were to happen to your pump you have all of the settings available to re-program a new or loaner pump. It is also great to be able to see your previous setting in case you adjusted too much or too little.


Mini Pocket Scale- We purchased this pocket sized scale to take with us when we travel. It is small, lightweight and easy to bring along and we got it on Amazon for around $17 (there are also even cheaper options to choose from) It is also great if you are going to a family or friends house and want to be able to weigh your food.

These are just a few of my D-Life hacks and if you have some that you'd like to share, I'd love to hear them! You can comment below or email me :)

Just Keep Swimming

Today is Day 4 of DBlogWeek and today's topic is: Mantras and more

When J is having a hard diabetes day and we are struggling to find the correct action to get him back on track here are a few things that I remind myself in those moments of mental despair.

First and foremost, I remind myself that we are doing everything humanly possible to successfully manage this disease. We have an insulin pump, CGM and a Diabetic Alert Dog. We are not failures and sometimes there won't be answers to why his blood sugar is so high and stubborn or why he is low all of the time.
My motto is this: Treat the number in front of you and move on.
Then weekly, I print up the Dexcom G4 trend data so that we can make the changes needed according to his patterns that week.

This disease is ever changing and impossible to understand at times. J's endocrinologist put it best "This is a marathon, not a sprint" you just have to look at the big picture. You'll make mistakes but you'll learn from them. You'll be frustrated but it will pass and it will get easier, not better, but easier as time goes on.

Secondly, I remind myself to reach out to those living with and also managing this disease. You don't have to re-invent the wheel. There are different techniques, products and approaches to managing this disease, so if your way isn't working, use your resources to find alternative ideas. You are never alone! When all else fails you call your Endocrinologist for help and ideas, and they will help to steer you back on track.

Lastly, I have the hope that one day my son will have a cure, but I know that while we are waiting for that cure, technology is advancing. Diabetes technology is helping make diabetics life easier, and preventing more and more serious complications. This makes my job as a caregiver more successful. Just his CGM alone has allowed us to more successfully manage his diabetes and gain knowledge about how is body responds to foods, exercise, and the adjustments that we make to his insulin. My son is only 4 so the advances that he will see in his lifetime will be amazing! The artificial pancreas is coming and that will allow him to regain yet another piece of freedom back from Type 1 Diabetes.

Never lose sight that things will get easier and we are living in an age of major medical advancements. Today might be a "bad" day but that doesn't mean that tomorrow will be, so just "treat the number and move on" life is too short to obsess about the uncontrollable.

A D-State of Mind!

Day 3 of DBlogWeek and today's topic is-"What brings me down"

As a mother your worst fear is something happening to your children. All you want is for them to be happy, healthy and thrive in the world.
When your child is born completely healthy....all 10 fingers and toes, organs functioning perfectly and no health concerns, you breathe a sigh of relief.
For 3 1/2 years we had a healthy son (outside of the normal colds/illness) then one day out of the blue Type 1 Diabetes stole that away from us and more importantly HIM!

We now have to worry about our son's life, safety and health every single minute of every single day. It is mentally exhausting. The worry, stress, fear and lack of sleep take over your life.  Will we be able to manage this disease well enough to prevent blindness, heart failure, kidney failure, death??? We are not a doctor or a nurse, yet we are solely responsible for managing an impossible disease. We make the decisions on how much insulin to give, we weigh his food and count his carbohydrates, we make the changes, we make the decisions! What other disease has to do that???? NONE! If he has a high or low blood sugar it is OUR fault, if he exercises too much and crashes it is OUR fault, if we don't count his carbohydrates correctly it is OUR fault! While we do the best that we possibly can and still allow him to be a "normal" kid, we are not a pancreas and we will never be able to get it right every single time.

We don't get to leave our son and get a break, the most we can be away is a few hours and we have to be attached to our phones because his status can change in an instant. One of us ALWAYS has to be available when he is at school to pick him up, answer questions etc. Diabetes never takes a break, it is there 24/7 for the rest of his life! As parents we will face many more obstacles and challenges than the average parents. What are we going to do when....Sleepovers- what will we do when he wants to stay the night at a friends house and the parents don't know anything about T1D? Driving- this scares me to death and we will have to teach him to check his BG before driving and always have low treatments easily accessible in case the need arises. School Field Trips- One of us will have to attend. Sports- extra steps and precautions will have to be taken to ensure his safety. Birthday Parties- we will have to be there to monitor his food and make sure he is given the extra insulin needed. Bullying- will he be picked on and targeted because he is different? School- we have to trust that the people at the school will be attentive to him, and take his disease seriously.
I am sure that I could make a laundry list of instances like this that we will have to face and manage, but I think you get the point ;)

We have to watch our son struggle and not feel well. We have to watch him grow up too quickly and be responsible for his health and cautious in the decisions that he makes. We have to watch him be in pain because he has to have injections, pump cannula's, cgm sensors, and finger pokes constantly. He will more than likely be hospitalized numerous times for blood sugars that we can not get under control. He is high risk for developing other autoimmune diseases. We have to watch our son battle the stereotypes that our society has on the word "diabetes", and he will have to learn to educate those around him, just as we have had to do and will continue to do.

I, as a parent have been forever changed by T1D. My brain works differently, and I now see the world differently. My heart has a dull ache that never goes away, and I wish daily that I could give him my pancreas and take on his T1D. I pray every day that a cure will come in his lifetime, so he can live carefree once again.
I wish this life upon no parent or child. Having a child with a chronic illness tears families and marriages apart. We have lost friends because we no longer have time to be social and they just don't "get" it. We are still fairly new to this life, so I can't speak to the long term effects that this disease will have on my mental health or my child's mental health but I can say this.....we have a long hard road in front of us! We will never stop fighting and we will continue to prove to J that this disease has only made him stronger and it will never keep him from achieving the life that he wants to live.

All we can do is hope and pray for the best, the rest is in God's hands!

Do you want to make some insulin?

My D-Version a Frozen Parody for Day 2 of DBlogWeek
(to the tune of "Do you want to build a snowman")
*if you're a parent then you will get it ;)


Do you want to make some insulin?
Come on, I just want to play!
I never feel you work anymore
Just make some more
It's like you've gone away
We used to be best buddies
And now we're not
I wish you could tell me why
Do you want to make some insulin?
Come on, please make some insulin

Ok, bye.....

Do you want to make some insulin?
I want to ride my bike and eat some carbs
I think some insulin is overdue
I've started to take shots!
It gets a little lonely
All these sleepless nights
Just watching the hours tick by....
(Tick-Tock Tick-Tock Tick-Tock)

Pancreas?
Please, I know you're in there
People are asking why you've quit
They say, "have courage" and I'm trying to
I'm right out here for you
Just produce insulin again

We only have each other
It's just you and me
What are we going to do?
Do you want to make some insulin?

Light Bulb!

We are finally home from our 10 day vacation! As you know from my last post, we attended the Kentucky Derby and from there we went to Florida to enjoy some Disney World magic and celebrate J's 5th birthday.

From the time that we arrived in Kentucky we started what seemed to be, the never ending battle of high blood sugars. Over the course of a few days we gave correction.....after correction....after correction, and even did multiple insulin pod changes but nothing seemed to keep him in range. He would drop for a short period of time and the shoot right back up into the 300's and just hover there. We knew the insulin wasn't bad because it would bring him down and we knew it couldn't be a site issue since we had gone through multiple pod changes, and then we had that light bulb AHHH HAA moment! BASAL- we needed to change his basal rates!

We decided to do a temp basal setting to see if this would be the missing piece to this ever frustrating puzzle and bingo it worked like a charm! The remainder of the trip his blood sugars were right back where they needed to be. Hallelujah! There is always a level of guilt that comes along with this learning curve. Why did it take us so long to think of changing the basal rate? It breaks my heart that he was running so high and nothing we did seemed to work or keep him down in range. Although he was acting normal, I know that he couldn't have been feeling good on the inside. That is hands down the hardest part of being a D-Parent, the majority of the time you're the reason for the high or low blood sugar, but we just have to be thankful that we figured it out when we did and that he didn't have to go the remaining 6 days with high blood sugars. We are not a pancreas and we can't predict what his blood sugars are going to do in new situations or environments. However, now we know when he is traveling and in exciting/stimulating situations he tends to run on the high side (which I'd prefer over running low, as that is the most dangerous) and basal rates will now be one of the first things we change when a situation like this arises.

I am forever thankful that we have the Dexcom CGM because if it wasn't for that valuable tool, it would have taken us even longer to figure out what the problem was and what we needed to do to fix it. The Dexcom allowed us to see exactly what his blood sugars were doing and how the changes that we were making were affecting him.
For example- On our flight home from Florida, I was sitting next to J. I always have the Dexcom out so that I can monitor the numbers and trend arrows. J was sleeping and I noticed that his numbers were slowly creeping down. I let the numbers get to about 110 and I decided that I better give him a 1/2 of a juice box just to give him a little boost. He drank it and it didn't really give him a boost but kept him steady for about 20 minutes, then I noticed that the numbers started to drop again and he was now at 82. I gave him the remainder of the juice box and something in my gut told me to check his finger.......64!!! Queue moderate panic mode! I didn't want to fully wake him, so I opened another juice box and made him drink another 1/2. He had 0 insulin on board so there was no valid reason this low was happening. I waited 5 minutes and checked his finger again since the CGM was still saying low 60's and the arrows weren't changing after 1 1/2 juice boxes. Finger check 67.....not good, gave the other 1/2 of the juice box, so he now had 2  juice boxes in his system (30 carbs)! Dexcom arrow still showed angled down and the numbers kept dropping, they were now in the 40 range. I decided to check his finger again because sometimes the lag time on the CGM makes the accuracy off and it was 45!!!! Ok, it's time for FULL panic mode! I quickly woke him up and made him eat a fun size pack of skittles (14 carbs) LOL he of course didn't fight me one bit eating those! Now comes the wait....I just sat there staring at the arrows and numbers on the CGM praying that they would start coming up. After about 10 minutes and no real change on the Dexcom, I checked his finger and he was 130 and I could finally breathe! I got up and asked the flight attendant for a banana so that he could get some real carbs in his system to sustain his blood sugar and gave him the insulin needed to cover the banana and a bit of the skittles, because I didn't want him to rebound with a high blood sugar from too many carbs.

This was a situation where that Dexcom could have saved his life! He was asleep on the plane and I was in and out of sleep as well. He was showing NO signs of a low blood sugar! This is why this disease is so dangerous! Situations like this happen all of the time, out of no where with no rhyme or reason! Without those extra 44 carbs, he would have crashed and probably had a seizure on the plane and needed a glucagon shot. It took me nearly an hour to get him back up and I had full knowledge of what was happening with his body, as it was happening! Priceless! Simply Priceless!

Well aside from the high blood sugars and a few other D related hiccups the trip was a huge success and we all had an amazing time. We will never let diabetes hold our family or J back from traveling and doing the things that we love to do. Each trip we will learn how his body reacts, so that the next time we are in that situation again we will have the knowledge needed to be proactive rather that reactive. Trial and Error is our life, but I will take it and continue to learn and be able to pass on that knowledge to him as he grows and takes over his own care.

Welcome to Louisville

Yesterday we started our two leg travel to Louisville Kentucky. When we arrived at the airport we checked our bags and I realized I had lost my cell phone somewhere between the car and the airline check in counter......cue panic mode!! Not only because my phone is new but ALL of my videos and pictures of the kids are on it! After re-tracing our steps both by me and by Anthony, I had almost lost hope that it was found and turned in. I was on the phone with the airport lost and found when I saw Anthony signaling to me..... by the grace of god a police officer patrolling the parking garage found it and returned Anthony's calls he had been making to my phone! We were able to retrieve it from him just in the nick of time! WHEW!!

Then came security! This is always a fiasco and although we are seasoned veterans in traveling with children, each airport and TSA employee does things differently. This time, I told them our son had an insulin pump and CGM so we were pulled to the side and had to wait until they got a person who knew how to handle the situation. After they sent us through, they swabbed J's hands and tested the swab for chemicals. This is the first time we have ever experienced this and we have taken a few flights since starting on the pump. They also pulled the supply bag out of the X-ray machine to search it (standard procedure) I have all of his supplies in a clear small plastic duffel bag so it is easy for them to see the contents. This time (another first) I was told that we had prescriptions that could not be opened so they needed to do a pat down search and test on me. I complied as I'm just there to make it through this journey as smoothly as possible. After my pat down and clearance, they took a boarding pass so they could put it in the system and have record of it (another first).

We ate lunch and boarded our first flight. J's BGs stayed pretty stable during the flight and he only needed one correction for a high while he was sleeping.

During the layover for our last flight his CGM alerted, we needed to change the sensor. We decided that since it takes about 2 hours to calibrate that we would just go ahead and do it there at the airport so it would be finished calibrating by the time we landed in Louisville.  We took him to the family restroom and did the change lickity split. Then it was off to board the plane.

This was a very short flight thankfully, but J's blood sugars were pretty high. We needed to do a POD change as well, but wanted to wait until we got to the hotel. Changing a pod can pose problems if we happen to get a bad site, so it just wasn't worth the risk since we didn't have the CGM to tell us what was going on.

We arrived at the hotel about 12:30am Kentucky time. Unpacked our stuff, changed the kids clothes and got ready for the pod change. We changed his pod and gave him the correction needed to bring his BG back down and changed the time on his pump to make sure all basal's and boluses were being given at the correct time of day. We all finally crawled into bed about 2 am Kentucky time!!!!!

It was my night for D-Duty and thankfully his BG came back down into range pretty quickly. He did need a juice box for a little BG boost but thankfully he never dropped low!

Today we just took it easy and rebooted for the start of the festivities tomorrow!