Monday, September 12, 2016

The Dreaded Milestone

I have been dreading this post for a long time.

This post is the post where I get to tell you that we have hit a new milestone, a milestone that I prayed would never come.

January 11, 2013 at the age of 3 years, 7 months and 22 days old my son was diagnosed with Type 1 Diabetes.

September 12, 2016 my son has been living with Type 1 Diabetes for 3 years, 7 months and 23 days.

My son has now officially been living, battling and thriving with Type 1 Diabetes LONGER than he got to live without it.

Joseph can't remember a life without T1D and that breaks my heart. The vast majority of the people in our lives now, don't even know a Joseph without T1D and the family/parents that we were before January 11, 2013. It is now a part of all of our identities.

To be quite honest, the memories of what life was like for our family before T1D are fading and almost feel as if they never existed at all, even to me. I can no longer tell you what it felt like to go to bed at night and not have a fear of losing my child. I can no longer tell you what it is like to have a sound peaceful sleep. I can no longer tell you what it felt like to not worry about blood sugar numbers. I can no longer tell you what it felt like to feed my child food without having to think about what he was eating, how much he was eating and how much insulin was needed to cover that food. I can no longer tell you what it felt like to live worry and stress free.

People always tell us that we make life with T1D look easy. We allow Joseph to eat, play sports, go to school, travel and do every thing possible to let him experience life as if he never had diabetes at all, and continue to maintain amazing A1C's while doing it. What people don't know or understand is the amount work that goes into allowing that life to take place. There are plans, preparations, extreme stress, worry, heartbreak, constant phone calls and text messages, alarms going off, monitoring, things going wrong, site changes, pumps failing, CGMs failing, high blood sugars, low blood sugars, analyzing data, doctors appointments, pharmacy pick ups, and constantly trying to stay one step ahead of a disease that doesn't play by the rules. 24 hours a day. 7 days a week.

This life that we have created for him allows T1D to just be a background noise in his life. It is NOT who he is, but it is a piece of what makes him who he is and who he will be in life but it has not been easy to achieve.

Every single day for the past 3 years, 7 months and 23 days I have prayed, cried, pleaded, advocated, donated, and raised money for a CURE. All I want is to see is my son able to live free from Type 1 Diabetes once again. I want to have a new date to look at and celebrate, because if that cure doesn't come, then one day all of the work that we put into allowing Joseph to live life as normal as possible will become his responsibility........and that is a day that I dread even more than today.

-until next time

Monday, January 11, 2016

525,600 Minutes

Another 525,600 minutes have passed marking another year since Joseph was diagnosed with Type 1 Diabetes. Since diagnosis we have spent 1,576,800 minutes monitoring, dosing, poking, checking, counting, calculating, analyzing, planning, preparing and worrying.

3 Years.

January 11, 2013 will forever be engrained in my memory. It was a day that has forever changed the course of our lives not only for Joseph, but as parents and as a family. I look back today and can feel every emotion, recall every conversation and can remember everything that happened leading up to this day. Today on the inside: I am sad, I am mad, and I am worried about what the future will hold for Joseph, but today I know that a Diaversary for us is a celebration.

A celebration for all of our triumphs.
A celebration for keeping Joseph alive and healthy.
A celebration for how far we have come in these last 3 years.

Most important of all today we celebrate Joseph's ability to overcome and endure things that no child should ever have to deal with every single day. We are beyond proud of the strong little boy he has become and we know that T1D doesn't stand a chance against him.

We have hope for the future and pray that one day we can look back and have a new anniversary, the date that Joseph was cured of his Type 1 Diabetes!!


Tuesday, October 13, 2015

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 7th 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: 

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

Saturday, September 5, 2015

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

Friday, May 15, 2015

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

Wednesday, March 4, 2015


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 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

Friday, February 27, 2015

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