An Open Letter to Sony Pictures Animation

To whom it may concern:

Sadly it was brought to my attention that your film Hotel Transylvania 2 has partaken in some very disturbing disease shaming. My 6 year old son was diagnosed with the autoimmune disease Type 1 Diabetes at the age of 3. Since his diagnosis we have encountered many companies that continue to fuel the stigma that Diabetes is caused by the consumption of sugar. Let me reassure you that no form of diabetes is solely caused by sugar or sugary foods. Type 1 Diabetes is an autoimmune disease where the body single handedly destroys the insulin producing beta cells in the pancreas leaving the body unable to produce insulin. This means that my son has to have insulin therapy for the rest of his life to stay alive. There was no way to prevent, predict or cure my son from Type 1 Diabetes. Type 2 Diabetes can be caused by lifestyle, genetics and age again, not caused solely by consuming any amount of sugar. I find it astonishing that a company of your caliber would deem it even remotely  appropriate to make any disease a joke, not to mention in a children’s movie. You certainly don’t see people making fun of cancer and it can be self inflicted by lifestyle choices and eating habits, so why is it socially acceptable to make fun of diabetes? 
My two son’s ages 3 and 6 had never seen the movie Hotel Transylvania until this weekend and of course they loved it. Now my 6 year old son is begging to go and see Hotel Transylvania 2. How do you propose that I explain why he cannot go and see your movie? How do I explain to a 6 year old that a movie is making fun of his life threatening very serious disease, but it's just a "joke"? How do I explain that this movie is helping to perpetuate the stigma that my son caused his own disease by consuming too much sugar? 
I feel that you owe the entire 29.1 million U.S. diabetics a HUGE public apology for your ignorance and insensitivity to their disease. A disease that is the 7^th leading cause of death in the United States, which should be no laughing matter! A disease that leaves my son fighting for his life every minute of every single day for the rest of his life, which should be no laughing matter! I urge you to educate yourselves and your company about all forms of diabetes and their true causes. 
Lastly, I find it very appropriate that you make a substantial donation to an organization fighting to cure Diabetes in the name all of those children who cannot go and see your movie and those that have been hurt by your movie because of your poor judgment and lack of education. The damage that you've caused reaches so far beyond the diabetics sitting in those theater chairs, you've now given an entire audiance morally corrupt ammunition and the ok to make fun of a deadly disease. An audiance full of children who are so innocent, yet soak up every ounce of the things they're exposed to in life. The fact that it was in a movie made for children is what upsets me the most, not only for my son's feelings but also for those children who don't know anything about diabetes. This movie is teaching them that it's ok to laugh at diabetes. These children could go on to potentially bully our diabetic children. What will they think when they see our children eating cake or sweets? These children could also think they'll get diabetes from eating cake or sweets. Absolutely nothing good can come from putting this content into children's films. Children learn what we teach them and no child should ever learn that it's acceptable to make fun of anyone with a disease or disability!

You can make your donation here: http://jdrf.org/ 

Here is a face of a child living with diabetes (see attachment). This was taken two weeks ago at our annual Juvenile Diabetes Research Foundation walk. On that day Joseph had been living with Type 1 Diabetes for 996 days and had endured over: 201 Insulin Pump Infusions, 92 Continuous Glucose Monitor Sites, 9960 Blood Sugar checks, 1540 Insulin Injections and that is NO laughing matter!

I hope that you will recognize the severity of this issue and take the necessary steps to make it right. 

I look forward to speaking with you soon.

Alicia Pescetti-mother of Joseph a Type 1 Diabetic

Funding a Cure

I have thought long and hard about this post and if I should put my opinions regarding this matter on "paper".

Recently there have been numerous posts bashing JDRF and their funding of a "CURE". While every one is certainly entitled to their own opinion, I also feel that just because people don't do their research before investing in the not for profit of their cause is also at fault.

Everyone knows that I want a cure as badly as the next person. I want to see my son once again live free of the T1D burden and to get that piece of care free childhood back! Hey, I want to be free as well! I want to be free of the stress, worry, sleepless nights, hovering, and making sure that my child stays alive EVERY SINGLE DAY. However, I am also beyond GRATEFUL for the technologies that we have today. Technologies that are funded with our fundraising dollars. Technologies that are helping me save my son's life and potentially prevent serious complications. Do you know what people 20, 30, 50 years ago would have done to have our technologies? Do you know how many lives they would have saved and are currently saving daily?

We are extremely involved in JDRF. I know exactly where my money goes and I have personally met the executives of the organization. The current CEO has a son with T1D. I got to hear that son speak this year at Children's Congress. Do you think that he doesn't want a cure for his son? The previous CEO also had a child with T1D and that CEO didn't even take a salary while employed by JDRF. Do you think that he doesn't want a cure for his son? The Chief Mission Officer & Vice President of Research has T1D as well as his brother and numerous family members. Do you think that he doesn't want a cure?
I could continue this on and on down the line but the point is this.......the people at the top are living the same life and having the same struggles as we are, and they want the same end goal!

So here's my opinion about where my funding is going and how I feel about a real biological cure. Research for a cure has been happening since insulin was discovered 94 years ago! 94 years! Can you imagine how many people would have died in 94 years had there have been no technological advances in the management of this disease? Does every dollar you raise go directly to cure research? NO, and quite frankly I don't want it to be. I don't want to see all of my money go into a cure that might not ever happen, because FDA controls that fate. FDA controls how long and how many clinical trials it takes to approve treatments and medications.
What if that takes another 94 years? Don't you think that advancing treatments is a vital part of keeping your child alive and as healthy as possible to get that cure when it does come? Don't you think that investing in a prevention is important so we can STOP this disease in it's tracks?

JDRF is a vital investor to MANY scientists and companies. They do not and will not put all of our eggs in one basket and for that I am grateful. I don't want to be all in on one scientist and one treatment because what if it doesn't work? I want advancements in technology, insulin, prevention and I want ENCAPSULATION! That's right, to me and for my son that is as good as a biological cure in my opinion. This will restore his ability to produce his own insulin and live diabetes free for a few years until it has to be replaced. That is where some of your fundraising is going and that is already in human trials! This is the optimal option until a biological cure is found.

If you'd like to sit around and bash technology then I urge you to give it up. Take your child off of their insulin pump, continuous glucose monitor, take away their glucose meter that needs a tiny drop of blood and go old school and see how you like it. Use vials, syringes and check your child's glucose levels with ketone strips. See how well your child thrives without technology! You don't have to bash one organization to support your own beliefs. If you choose to invest all of your money into one lab and one method of a cure then that is your right. However, when you choose to bash an organization that is fighting for Type 1 Diabetes as a whole and hedging our bets in multiple labs, companies, treatments, prevention etc. then that just shows your ignorance and agenda. For those of us who are educated with the facts already know where our money goes, and those of us who embrace technology while we are waiting know that every new release is backed by JDRF. Coincidence? I think NOT!

If you don't do any fundraising at all, then I don't feel that you get an opinion. You are doing nothing to help us take T1D anywhere! Fundraising doesn't cost you anything to do!

I have heard people say that JDRF is just out to make money and what will happen to JDRF when there is a cure....well did you know that the March of Dimes used to be an organization called the National Foundation for Infantile Paralysis that fought to cure POLIO! Once a cure by vaccination was found they adopted a new name and mission to support, and guess what......they are still around today!

I am not here to push my beliefs on to you. I am just urging everyone to look into the organization where you choose to invest your fundraising dollars and make your own choices. They all provide detailed reports on exactly where your money is going. I will say; don't think just because you invest in one lab that is working on a cure that all of your money will be going to a that cure because that lab will also be working on a lot of other things, so be very cautious of that when you are looking and doing your research!

If you do support JDRF then here are the actual facts of where your money is going and what avenues they are investing in

We are all here for the same goal!!!!!

-until next time

Pebble Watch vs. Apple Watch

Wow, I haven't been on here in a while!

Life these days is moving faster than normal with Joseph and Ethan going to school, Joseph playing T-Ball, and getting ready for JDRF Children's Congress I feel like blogging has fallen down on the list and I am just not able to find the time to write down my thoughts.

So this morning I am making a point to write a blog to let you all know that I am still here in the trenches working away and juggling life.

Joseph's blood sugars have been running stubbornly low lately, and when I say stubborn, I mean stubborn! This kid is pretty much living on basal insulin with no boluses, low!

Thankfully we haven't had dangerous levels but he just seems to hang out at the 70-80 range no matter how many carbs are given. So, now we have to play the game of basal adjustments because clearly they have become too aggressive for his body. Making adjustments is always a fun act as it always seems we go the opposite way and start running on the higher side.

Why the sudden change? Well I ask myself that same question but as we all know there are so many variables when it comes to managing T1D. It could be a growth spurt has ended, the weather is changing and in warmer weather you sweat more and your body works harder, or it could just be diabetes being....well diabetes! In any case we have to figure out where and how the changes need to be made. Thankfully we have Nightscout and now the Dexcom Share, to help us keep an eye on him while he is at school, otherwise these past two weeks I would have lost what little mind I have left ;)

So, as promised I am going to talk a little about the Nightscout system on the Pebble vs Dexcom Share on the Apple Watch. I have made it a point to use both while JP is at school so that I am able to tell you the distinct differences.

Pebble Watch on the left, Apple Watch on the right
 

The Negatives of the Apple Watch
The main difference that I noticed right away was the Apple Watch goes to sleep while my Pebble watch displays the blood sugar number constantly. It was a little annoying to have to raise my hand or tap the screen to be able to see JPs number. Tip: you have to set your watch to "view last app" or it will automatically go to the home screen when it goes to sleep and you will have to tap and swipe to get to the Share App and view the data.

The next difference is the Apple watch doesn't vibrate to the same settings that you have set on the Dexcom, it will ding and display the same alert that you get on your phone while using the share system, making it a little harder to see highs or lows coming on.

The Dexcom Share is only available to Apple products. We thankfully had an ipod for Joseph with the Share set up, so I was able to test out the system at school using their wifi network. In order to use it all the time we will have to get him an iPhone so we are able to use it on the go like Nightscout (it only runs off of an android phone)

The Positives of the Apple Watch
One of the best things about the Apple watch is that it doesn't require all of the cords to be attached to the Dexcom or uploader phone. For those of us that use the Nightscout system we all know that these cords are a PAIN! The cords short out, and they can cause the ports to break in the phone and in your Dexcom and that is a huge problem. For me cord free was a huge positive!

The Apple Watch also displays the trend graph from the Dexcom, which you do not have access to on your Pebble watch. It is always nice to be able to see the graph because sometimes the arrows don't match to what the blood sugar is actually doing.

If you are an iPhone user the Apple Watch has some really amazing features that you get to take advantage of while you are Sugar Stalking ie: Calorie Tracking, Heart Rate, Text, Email etc. etc.


Both watches and systems are amazing and allow a completely different level of T1D management. If you haven't started remote monitoring, I can promise that you will not regret it, especially if you have a child with T1D. This allows so much peace of mind and you can manage it the same as if you were right there with them. I "Sugar Stalk" Joseph and will text his teachers if I see something brewing so we are able to prevent it before it happens. If you have older children who want to do sleep overs or play sports this will allow you to not be a "helicopter" parent and hover over them or prevent them from childhood experiences.

If you want any further information, please email or comment below. I hope that this has been helpful and if I find any additional tips or tricks I will be sure to share them with you :)

-until next time

Genteel

Have you heard of the new lancing device on the d block?
As usual I research and investigate all new diabetes technology. If there is something out there that is going to make my son's life easier or less painful you better believe that I am going to find it and I am going to get my hands on it.

In one of my latest searches came across Genteel who claims that their product offers pain free lancing. Hmm pain free lancing? Is that even possible, given the fact that you still have to use a needle to draw the blood?

Well here is where their product differs from the regular lancing device. While Genteel of course uses a needle for lancing, they also use specific precision and suction to accomplish their pain free method. Their removable tips allow for depth control and the suction allows for the poke to go shallow enough so that nerves aren't being hit during lancing, yet the blood is drawn to the surface for testing.

Now, there is a definitely a learning curve that goes along with this device, but let's be honest...how often do we get blood on the first try with the normal lancing device? I find myself poking him two or three times only to find that they all were in fact deep enough to draw blood but it just didn't come to the surface fast enough, so this one just takes a little practice.

This device itself is a little larger than normal and you can actually see the needle which had Joseph completely freaked out at first. There is a large button that you push down to prime the lancet. Once primed you remove the nozzle and insert your lancet (you can see the list of compatible lancets here) , once your lancet is in place you put the nozzle back on, put the desired contact tip on the nozzle (this is how the depth is measured). Once you are ready to go make sure that your finger is covering the hole in the middle of the activation button, this is what creates the suction and that the lancing device is straight up and down. There will also a loud "pop" sound when the lancet is released, so brace yourself. Keep your finger over the hole of the activation button for about 8 seconds. You should see blood start to pool on the finger. Wait until you have the amount of blood that you need for testing before releasing the suction. Then you just test as normal. 

Joseph might get poked and prodded regularly but he certainly isn't immune to pain and he gets very scared of trying new things which I can't really blame him, but it makes stuff like this an adjustment for all involved. You can watch the video of his first reaction to testing with his new Genteel here After that first initial anxiety of the unknown, he absolutely loved it and was so proud to use it!

We are still practicing and learning all of the things that the Genteel lancing device has to offer and as Joseph grows more comfortable with using Genteel I will explore the alternative site testing as he allows. So please stay tuned for those results :) 

I will say this......there is a difference! In only 5 days of use Joseph is already choosing this lancing device over his old one. I am very pleased with the overall performance of the product and I would highly recommend that those with sore, calloused fingers or those looking to prevent that from happening that you check out this product, you won't regret it!

If you decide to order a Genteel you can use the Promo Code: AP10 at check out for a $10 discount.

-until next time

Field of Dreams

Joseph has started his very first baseball season.

Most parents are thrilled to watch their child learn and play a new sport but when you have a child with Type 1 Diabetes, it is a whole new ballgame!

We have the excitement of watching our child learn and play a new sport but we also have the added stress and pressure to learn how his body is going to react to this new physical activity.

So far baseball is causing him to have low blood sugars, which is strange because it isn't that "physical".

This is where is starts to get tricky in our world. The activity level is not the only factor. We have to account for excitement, stress, anxiety, adrenaline, and the outdoor temperature.

How on earth do you figure out those things you might ask?!? Well a simple thing called Trial and Error! We have to use our son as a human guinea pig. We have to sit back and watch and learn, testing out different regimens until we find one that works for his body, for this sport, for the current weather, and for this season.

Type 1 Diabetes steals a piece of excitement from every new experience and replaces it with stress, worry and fear.

Joseph will play sports and he will thrive, but behind the scenes there are two parents working very hard to make that safely happen!

-until next time

Will it be enough?

Lately I feel like I am being bombarded with the news of children losing their lives to T1D complications, and a T1D diagnosis coming too late!

These fears live and thrive within my mind 24/7. I know that my child's life is fragile and can be taken at any minute, this is the reason that we have a Diabetic Alert Dog, Insulin Pump, Dexcom CGM, and Nightscout. This is why my husband and I alternate nights sleeping with Joseph and rarely leave him out of our care, but I find myself asking the question......

Will it be enough?


Will all of our hard work and vigilance be enough to save our son's life?

I am afraid that it won't! You can do everything right and have the latest technology but Type 1 Diabetes doesn't care. A blood sugar can drop too quickly and he can have seizures that cause permanent damage or he can die. Just like that, any minute of any day it can happen. The dreaded little red box that we tote everywhere, might not be enough to save his life!

As a parent, how do you cope with that? How do you not let that fear creep in when you hear the stories about these children losing their lives so suddenly?

Just putting it in god's hands and hoping and praying that he is watching over him and protecting him? Praying for a miracle cure that hasn't come in the 94 years since the discovery of insulin?

94 years and we are still waiting!

I will never stop fighting for awareness and a cure, even if it isn't a "biological" cure. I NEED something that will prevent my son from dying, that will erase that fear and the horrible complications that lurk over our heads 24/7. I don't care if it is 1 pill a day, stem cell encapsulation....anything! I will take anything!

-until next time

Nosey Neighbor

A recent post to a well know column has me thinking......"what is wrong with our society"

You have a person sitting in a cubicle across from a diabetic, watching them check their blood sugar and watching them give injections of insulin. I would assume a normal person would look out of curiosity, wondering why they have to do those things, perhaps you would even ask so that you could gain some knowledge about your co-worker and their struggles. (at least that is what I would do)

I guess those are the days of the past. Since Joseph's diagnosis 2 years ago I have learned that in today's times people are more inclined to complain about the co-worker making THEM feel uncomfortable because they can see the person conducting medically necessary actions and they don't want to see it. As if the person sitting across from you stabbing themselves with needles to draw blood and inject life saving insulin enjoys the task and is purposely doing it out of spite.

What kind of people are we becoming? What happened to compassion and understanding? What happened to getting to know our co-workers and neighbors?

I feel like as a society we are becoming cold, judgmental, awful people. A person watching another person fighting for their life and putting their health as a priority only feels the selfish desire to make it go away because they don't want to see those things.
Disease exists and it isn't pretty! Rather than writing to a popular columnist with your selfish, outrageous complaint....why don't you try getting to know that co-worker and their story. Why don't you DONATE to a cure for your co-worker so that they no longer have to use needles to stay alive.

People with medical needs don't owe you anything. They are doing what they have to do to stay alive and they certainly shouldn't have to put your comfort as a priority above their own health. If you don't like what you are seeing and you can't find it in your heart to be grateful and thankful that you nor your child have to use those methods to stay alive, then I suggest you don't look and just worry about doing your job and being an awful person.

If you would like to view the Dear Abby post you can use this link Nosey Neighbor I have graciously renamed it to a more appropriate title ;)

-until next time

2 Years

2 years ago I was sitting at my house with a kid that had been misdiagnosed multiple times with the FLU. A deadly lurking disease that should have been diagnosed days earlier if a doctor at the ER wouldn't have cancelled the panel of tests that another concerned doctor ordered. A doctor that gave our son a Popsicle and sent us home with anti nausea medication. After the ER visit he was acting completely normal with the exception of a few new key symptoms that we had no idea the diagnosis that they were pointing towards.


At the ER waiting for answers

Extreme Thirst and Frequent Urination. Symptoms that led me to call our pediatrician, on a Friday morning worried that there might be something else wrong that we were missing. Our pediatrician was out of town, so I had to call an on call office and speak with their nurse. She told me that he was just re hydrating from having the flu and not to worry unless it hadn't gotten better by Monday.

That evening a 7pm phone call changed our worry to fear! The on call physician was reviewing notes from the day while working his shift at the hospital and came across my phone call. He told Anthony that he was concerned that it could be DIABETES. That was the first time that we ever heard those awful words. He told us that after his shift was over at the hospital that he would open his office and just needed a quick urine sample to test. This wasn't difficult to get since he was urinating constantly.

We loaded up and headed to a doctor's office that we have never been to, to meet with a pediatrician that we have never seen. We walked into the office and handed him the urine sample. We had an unused cup from the ER visit. The doctor walked back into the room with a look on his face that I will never forget and he uttered the words " it was VERY positive". After those words came out of his mouth our world shattered into a million pieces.

He tried to explain that this wasn't a death sentence, that we would need to make arrangements for Ethan because we were going to have to spend a few days in the hospital learning to care for Joseph's new medical needs. He called ahead to the hospital so that we wouldn't have to wait in the ER.

I cried as soon as we got to the car and Joseph couldn't see me. We placed calls to our family to let them know of the diagnosis and that we would be headed to the hospital. We still had NO CLUE exactly what diabetes meant for Joseph.

We arrived at the hospital and got assigned to our room. They came in to do his first blood sugar check. The nurses were in shock, his blood sugar was only in the mid 400's. They said that was an unheard of number for a newly diagnosed Type 1 Diabetic. Joseph didn't need an IV, he didn't have to go to the ICU, all he needed was his first shot of insulin. That on call pediatrician could have saved Joseph's life and we will never forget what he did for him and his diligence to his work. We are also very lucky that we didn't give Joseph juice or high carb foods. His blood sugar would have been so much higher and his life could have been in serious danger.



The next few days were a nightmare. Sadness, fear, and an overwhelming amount of information was given to us. Essentially we had 2 days to learn how to keep our son alive before we were sent home with a bag of supplies and a completely new life for all of us.


His first meal as a diabetic

meeting Hope for the first time

2 years ago my son's innocence and freedom were stolen away from him. While we have made great strides in re-gaining our life as we once knew it, some thing's will never be the same. We have watched our son cry, scream, fight and be scared. We have seen him struggle and be different. We strive to give him a normal life and we strive to teach him to never let diabetes hold him back but there are aspects of this life that we can't control.

Today is a bittersweet day. While I am very sad, I am also very proud. We are not letting diabetes win this war. We will keep fighting for Joseph's life until we have a cure.

So today we celebrate how far we have come and another year of success!

-until next time

Cold and Flu Season

Man, this has been a rough month for our household!

The first week of December we took a family vacation to Disneyland and as usual the kids got sick....I mean, Disneyland has to be the germiest (yup it's a word LOL) place in the world. We use bottle after bottle of hand sanitizer, in line, after ride, just because and it is just never good enough to fight off the germs in kids their age! They are touching everything and putting their hands in their mouths constantly......so they in turn caught a stomach bug.

We get through the stomach bug and they catch a cold.....right before Christmas! Every. Single. Year. my kids are sick at Christmas, it's almost a right of passage! So, we get them on antibiotics and get them over the cold.

Days after they are better guess what, it's time for Joseph to go back to school......cue ANOTHER cold and an ear infection for Joseph. Last night of course Ethan started symptoms!

December-sick
January- sick

This is wrecking havoc on Joseph's blood sugar and has me wishing that it was just summer already!


A cold or illness is bad enough for a "normal" child, but when you throw T1D in the mix it becomes a totally different ball game. We have to worry about blood sugar levels, ketones, forcing him to eat, being up ALL night, staying hydrated and the list goes on.

I am hoping that we have now paid our Cold and Flu Season dues and the rest of the year will be smooth sailing.......there's always hope, right????

-until next time