Monday, December 22, 2014

" I just want diabetes to be over"

After taking an unintentional month hiatus from blogging, I am back!

It has been pretty much the norm around here this past month. Ups and Downs and a disappointing A1C from our endo visit last month. It only went up .2 due to post surgery high blood sugars, but it is still frustrating considering how hard we work. Our endo didn't mind the increase at all, I just tend to be harder on myself because I know just what is at stake.......Joseph's future health and LIFE!

We are creeping up on Joseph's 2nd Diaversary (anniversary of his diagnosis) and I can't help but feel sadness thinking of past Christmas and how differently we viewed the world. The other day we pulled up old video footage of Joseph and it broke my heart to know that he would never be that careFREE kid that he once used to be, now at the age of 5 he has more responsibility then most twice his age. Take your meter, grab your CGM, we need to check your finger, come here so I can tape your pump, let me weigh that banana before you eat it etc. etc. Don't get me wrong he is still a happy kid, things are just different.

The other night we were sitting at dinner and Joseph asked me if he could take off his medical alert bracelet. I of course told him "NO" and then explained that it was very important for him to wear it in case of an emergency so the paramedics and doctors would know that he needed special medical treatment. Then he said the words I have been dreading " Mom, I don't want to have Type 1 Diabetes anymore" my heart sank, a lump formed in my throat and I held back tears. I responded by explaining to him that we were working hard with JDRF to raise the money for a cure so that he didn't have Type 1 Diabetes anymore. He just looked at me and said " I just want diabetes to be over" I just looked at him and said " I know buddy, I know, me too!" Then I tried to hold myself together because had we not been in a public place, I would have excused myself and went into a room and cried.

I want diabetes to be over too, I want my son to be free. I don't want this life for him or our family. Why did this happen? Why couldn't it have been something that could be fixed, cured or taken out?  Why does he have to live the rest of his life with this burden? Why do I have to put all of our hope, prayers and faith into the bucket labeled "unknown"?

This is the time of year to be grateful and I am don't get me wrong. We are very blessed in our life but I am not grateful for Type 1 Diabetes...........I want it to be over!

-until next time

Friday, November 7, 2014

Life after surgery

Sorry for the delay in an update it has been a little crazy around here since Joseph's surgery on Wednesday morning.

Surgery went well despite a few hiccups with Nightscout and Dexcom not cooperating during the surgery and leaving us completely in the dark. Joseph did drop a little low during his surgery and they had to give him a bag of Dextrose to raise his blood sugar. The waking from anesthesia was pretty typical for a young child, he was pretty hysterical and out of it but once it wore off he was fine, no nausea and no vomiting YAY!

Joseph shocked us all when he started requesting to eat right away! This was the main reason that we decided to have him admitted for a night of observation. This boy is beyond tough and truly inspires us with his continued strength and resilience despite what life is throwing at him.

Joseph's recovery is going well and pretty smoothly, with the exception of his blood sugar. His pain medication with both a sugar and alcohol content, plus a healing distressed body are causing some seriously stubborn blood sugars!! Joseph's normal daily insulin intake ranges from 15-20 units and yesterday we gave him 33 units and still couldn't keep him below 200! We have increased basal, changed his correction factor and are giving bolus after bolus and we are still struggling. Diabetes has a mind of it's own and no matter how hard we work, we are never in control of the outcome. We are continuing to fight to bring him back into a more consistent range, but right now it just feels like a losing battle. You feel terrible as a parent that in addition to not feeling well because of surgery that now you are causing him to not feel well because you can't manage to bring down high blood sugars!

This disease is ruthless and frustrating, you can do everything you are supposed to do and it still isn't enough! You have no choice but to keep pushing through and fighting. We won't give up and we will get those numbers back where they belong, no matter what it takes.

Keep saying your prayers and keeping Joseph in your thoughts for a speedy and healthy recovery!

-until next time

Monday, November 3, 2014

Surgery is Approaching

We are two days away from Joseph's surgery to remove his tonsils and panic and fear have started to creep into my mind.

As I mentioned in my previous post This is not routine we are having Joseph's surgery at the hospital where he was treated after his Type 1 Diabetes diagnosis. We are erring on the side of caution should he have any complications due to anesthesia or the refusal to eat or drink after surgery.

Joseph has never been put under anesthesia so we do not know how his blood sugar will react and even if it reacts well we have the hurdle of getting him to eat and drink post surgery to keep his blood sugars "controlled".

Just today the decision was made between Joseph's surgeon and his Endocrinologist to go ahead and plan to admit Joseph for at least one night post surgery to keep a close eye on his recovery and stability. This helps to put my mind at ease knowing that they are taking surgery and Type 1 Diabetes seriously.

If we were to have his surgery at an outpatient clinic with people who weren't familiar with the disease or it's complications then we could be in for a world of trouble. If Joseph comes out of surgery normally and is sent home like a patient normally is and he begins refusing to eat or drink then we have no way to raise a low blood sugar if the need arises and that can lead to a life threatening situation very quickly. If he is admitted into the hospital then they can help control his blood sugar with IV treatments and make sure that his body is staying hydrated if needed.

This is not an ideal or easy situation but preparing for the worst case scenario is what we have to do when life involves Type 1 Diabetes. We never know what diabetes is going to do next, but if we try our best to stay one step ahead, then we can try to maintain the upper hand and prevent the worst from happening.

Please keep Joseph in your prayers as Wednesday approaches and I will be sure to update how his surgery went once I know any information.

Thank You!
-until next time

Thursday, October 30, 2014

Phase 1

Well, it happened.....I dyed my hair BLUE, well blue highlights that is ;)

I modified my Phase 1 goal and hit $350 which isn't too shabby of a start considering November hasn't even started yet!




If you want to support my fundraising efforts then you can use the following link http://www.gofundme.com/aCUREforjoseph

If you'd like to join in the BLUE hair fun, please join the Facebook page or use the hashtag #goBLUEforT1D in your photos on your social media accounts!
https://www.facebook.com/GoBLUEforT1D

-until next time

Tuesday, October 28, 2014

Halloween

Halloween is only two days away and I have already been asked a million times if I let Joseph participate in the holiday. I feel like looking at them and saying "Why the hell wouldn't I?" but rather, I just smile and say "Yes, of course. He gets to participate the same as if he were not diabetic."

My child never over indulged in candy prior to his diagnosis, so being more cautious about how much candy he actually eats is not much of a change for him and the same goes for our non-diabetic child. They are both are subject to the same treatment, diabetes is never the reason to saying NO in this house, if it is the underlying reason, then both children are told NO and another reason is explained to them.

This is also not a holiday to offer a diabetic child "sugar free" candy. These types of candies still have carbohydrates and still require insulin, so just give them the same candy that you would give any other child (unless they have specific dietary needs of course).

If you are new to being a D-Parent, don't stress yourself out thinking that your d-child has to miss out on being a child and enjoying Halloween. Here is how we handle Trick or Treating.
Once we return home each child gets to choose two pieces of candy to eat and then their buckets get put away. For the following few days they are allowed two pieces with lunch and dinner. I strategically sort the candy for the good "low" treats and put them aside and the remainder of the candy is shipped off to work with my husband. However, this year we are going to take the remaining candy to the dentist office and they get to choose a prize and then I will take them to the store and they can pick out a new toy. No child benefits from a ton of consumed candy and my children are never deprived from treats, so they don't even miss out. Just look at this as an opportunity to start a new fun tradition and your child won't even know the difference or miss out on any of the Halloween fun.

I hope that you all have a safe and fun Halloween!



-until next time!

Friday, October 24, 2014

I am going BLUE

I have decided to start a fundraising effort in which I will trade the color of my hair for generous donations.....yep, I am dyeing my hair BLUE!

I have chosen different stages of BLUE for my hair based upon the donations that I receive. These are a few examples that I have pulled from Pinterest. I have set the goals high because going BLUE for a blonde is no easy task, and not something that I will be able to remove very easily. However, it is worth every BLUE day, if it means that I am raising money to help fund a CURE for my son!

 
If you'd like to donate towards my fundraising goals then you can follow this link
every single penny raised will be donated towards a CURE for Type 1 Diabetes!
 
I have also started a Facebook page where people are joining me in dyeing their hair BLUE and raising funding and awareness for this November, please "like" the page and share with your family and friends. Let's make this the best BLUEvember yet!
 
Thank you for your support and encouragement and I can't wait to see all of the BLUE hair, this November :)
 
 
-until next time
 

Tuesday, October 21, 2014

Could this be the answer??

Joseph had Coxsackievirus A 

(Hand, Foot, and Mouth Disease)

7 months prior to his diagnosis of

Type 1 Diabetes!

 
Study taken from Science Daily story sourced from Arden's Day
 
 
 

Children who have had enterovirus infection are around 50 percent more likely to have type 1 diabetes

Date:
October 17, 2014
Source:
Diabetologia
Summary:
Children who have been infected with enterovirus are 48 percent more likely to have developed type 1 diabetes, a study shows. "Type 1 diabetes is considered to be caused by complex interaction between genetic susceptibility, the immune system, and environmental factors," say the authors. "Though the cue for genetic predisposition has been elucidated, evidence also points to involvement of enterovirus (EV) infection, including viruses such as poliovirus, Coxsackievirus A, Coxsackievirus B, and echovirus."
 

A new study published in Diabetologia (the journal of the European Association for the Study of Diabetes) shows that children who have been infected with enterovirus are 48% more likely to have developed type 1 diabetes. The study is by Dr Tsai Chung-Li, China Medical University, Taiwan, and colleagues.
"Type 1 diabetes is considered to be caused by complex interaction between genetic susceptibility, the immune system, and environmental factors," say the authors. "Though the cue for genetic predisposition has been elucidated, evidence also points to involvement of enterovirus (EV) infection, including viruses such as poliovirus, Coxsackievirus A, Coxsackievirus B, and echovirus."
To investigate the link between EV infection and subsequent type 1 diabetes, the researchers used nationwide population-based data from Taiwan's national health insurance system. They looked at type 1 diabetes incidence in children aged up to 18 years with or without diagnosis of EV infection during 2000-2008.
Overall incidence of type 1 diabetes was higher in the EV-infected children than in the non-EV infected group (5.73 vs. 3.89 per 100,000 people per year, showing a 48% increased incidence rate in EV-infected versus non-EV-infected children). Hazard ratios of type 1 diabetes increased with age at diagnosis of EV infection, with a more than doubling of the risk of type 1 diabetes (2.18 times increased risk) for children aged over 10 years at entry. No relationship of allergic rhinitis or bronchial asthma to type 1 diabetes was found.
The authors point out that despite countries such as Finland and Sweden having the highest incidence of type 1 diabetes worldwide, they are thought to have low background rates of enterovirus infection, suggesting that genetic factors are a large component of the high type 1 diabetes rates in those countries. But they add: "Regions such as Africa, Asia, South America have a low but increasing incidence of type 1 diabetes and high prevalence of enterovirus infection; environmental factors like enterovirus infection may play a vital role in increasing incidence in these regions."
They add: "Taiwan has relatively low type 1 diabetes incidence; we believe that the marked escalation of the said incidence in recent decades can be largely attributed to the highly endemic spread of enterovirus infection in Taiwanese children, given that there has been little gene flow and genetic drift in such a short period."
They conclude: "This nationwide retrospective cohort study found a positive correlation of type 1 diabetes with EV infection. Our results suggest that preventive strategies, such as an effective vaccine against EV infection, may lessen the incidence of type 1 diabetes in Taiwan."


Friday, October 17, 2014

This November!


Awareness......

with November rapidly approaching the entire Diabetes Community is talking about Awareness campaigns and what we are all going to do to get involved.

You can write Hope on your hand, wear blue on Fridays, get a celebrity to wear a blue circle pin, you can write blogs and tweets and take pictures, you can turn local monuments blue and the list goes on and on. While I am all for raising awareness, how do these awareness campaigns turn into donations? How are these getting us any closer to having a CURE? We can have all the awareness in the world but if no one is donating to our cause then we are just treading water getting no where.

While it would be nearly impossible to re-create the ALS Ice Bucket challenge we need something drastic to make people see that our children and loved ones are secretly battling, suffering and dying from a disease that they didn't cause, a battle that lasts for the rest of their lives. There is no treatment, there is no remission, there is nothing but life support. A life support that has become more advanced and is making life easier for diabetics, but they are still suffering major consequences living with this disease. Type 1 Diabetics are losing eye sight, having heart problems, kidney problems, nerve damage, depression, anxiety, eating disorders, social problems and they are DYING! Infants, Children, Teenagers, and Adults are dying.....EVERY SINGLE DAY. It doesn't matter how well you manage your diabetes there is always danger lurking around each corner.

What are we doing to raise MONEY? A cure will only come with funding, plain and simple.

While I have the hope that maybe this year we will break that social barrier and the world will finally see once and for all just how badly our loved ones need this biological cure, my head asks the questions........how? How do we get that funding?

The vast majority of the world thinks that this is a self inflicted disease that is easily managed. How do we change their minds and give them a glimpse into our reality?  How do we make them see that we fight for life every day, waiting for that cure? How do we make them see that our children's lives could depend on their donations for a CURE. I don't want my son to be a statistic. I don't want Type 1 Diabetes to take his life, but the harsh reality is that it could....any time, any day without warning!

I want my son to be able to say that he SURVIVED Type 1 Diabetes, that he BEAT Type 1 Diabetes, that he has been CURED of Type 1 Diabetes!

I raise money every chance that I get, because money is the only thing that is going to get us that cure.

So my question to you is, how are you RAISING MONEY for a cure this November??


Help us CURE Type 1 Diabetes!! http://norcal.jdrf.org/

-until next time

Thursday, October 16, 2014

Never Again!

Well yesterday it happened.......our Nightscout system took a turn for the worst when our uploader phone stopped uploading data. After hours of trying to figure out what the problem was, we discovered that the phone's charging port had gone bad!

Anyone who has set up this system (we had a brilliant friend set ours up) knows that this is no easy fix! This means that we have to get a whole new phone and re-install the system to it.

This means today and probably tomorrow, we have NO Nightscout while Joseph is at school! These last few months I have had such a peace of mind being able to see his numbers and manage his diabetes from afar. Today and every day until we get a new phone set up will be filled with fear and worry for the unspeakable.



This technology is AMAZING, it is LIFE CHANGING and this is something that we should never have to live without!!!

Lesson Learned: This time around we will be buying 2 phones, that way we always have a backup in place should one go on the fritz or break because I never want to have this feeling again.

Tuesday, October 14, 2014

"Like" us on Facebook

Have you checked out our Team Joseph Facebook page?

Like us and follow my daily stories and pictures The Adventures of Joseph and Hope

If you have a T1D Awareness page, I would love to follow you. Please comment below with the link to your FB pages :)

-until next time

Monday, October 13, 2014

Trick or Treat?

Halloween is coming and for parents of small T1D children this poses some additional hurdles in management. I have always had the motto that Joseph gets to do things as if he were never diagnosed and Halloween is no exception. I have never allowed my children access to excessive sweets or juices even B.D. (before diabetes) so it hasn't been a difficult transition for our parenting style.

Joseph will get to participate in his school parties and trick or treating, as well as at home. He will get to choose and eat a few pieces of candy, just like I would have normally done and same goes for Ethan. Just because sugar reacts different in Joseph's body doesn't mean that he has to miss out on these childhood memories, it just takes a little pre planning to make sure that his blood sugars still stay in check and a consistency with both children. Just because Ethan doesn't have T1D doesn't give him any advantage in our household, and he will never be told he is limited because Joseph has diabetes.

Their bags of candy will be put up on a high shelf in the pantry and over the few days following Halloween, they can each choose a piece or two to have with lunch or dinner. Halloween is actually a great time to stock pile some new low treatments, so I usually sift through the candy and then ship it off to my husband's work, so I am not tempted to snack on it ;)

I found this quick reference list of carb counts for the popular snack sized Halloween Candy!


 
 
You can also find a more extensive list here with the American Diabetes Association 
 
 
-until next time

Monday, October 6, 2014

Your days are numbered!

Yesterday we gathered at the west steps of our state capitol with thousands of people. A sea of colors with t-shirts, costumes, balloons, signs and noise makers all showing off their team spirit and pride! We are all there for ONE reason......to cure Type 1 Diabetes.



As my son took the stage to get his blue beads, waves of sadness and pride washed over me. I would give anything for my son to not be standing along side all of his fellow diabetics, but at the same time I am so proud of how strong he is and the strength of our diabetic community.



These past 19 months I have met and grown close to so many local families fighting the same battle that we are fighting. Seeing those families yesterday and standing along side of them at an event to cure our loved ones, is empowering and comforting. We are not alone, we are in this together, we are family!





 

We will cure Type 1 Diabetes, We will not stop until we do! We will keep fighting to keep our children and loved ones alive, we will keep raising awareness and we will keep fundraising for that CURE!

Type 1 Diabetes.......your days are numbered!

 
-until next time



Friday, October 3, 2014

Team Joseph

We are officially only 2 days away from our Northern California JDRF Walk to Cure Diabetes!

This is our second year walking for Joseph since his diagnosis January 2011. Last year, we were brand new to life with Type 1 Diabetes and we were determined to raise as much money as we possibly could for our walk team. We were able to raise nearly $15,000.00 putting our walk team in the #2 position for our region! Pretty impressive for being rookies, if I do say so myself ;) lol

This year we were bound and determined to clench that #1 seat (we are not competitive or anything)......and I think that we are going to accomplish it! 2 days away from walk day and we have already reached $35,440.00!!!!!

I am astounded, humbled and so proud of our team. We have some of the most dedicated people supporting Joseph and our fight to Cure Type 1 Diabetes and to that I say......


   THANK YOU! THANK YOU! THANK YOU!





You guys help drive us to keep pushing forward and to keep fighting. We are making a difference!!!

We will beat Type 1 Diabetes!

-until next time



Monday, September 29, 2014

The Struggle is Real

Lately I have been struggling.....struggling as a mother and struggling with burying my feelings.

For the past 626 days I have been fighting, fighting to be strong and fighting to beat Type 1 Diabetes. It is my job as a mother to pick up the pieces and make everything better but since Joseph was diagnosed fate has dealt me an impossible card as a mother. There is no way for me to make this better, NO WAY IN HELL! I can't make it go away and I certainly can't control it.

I am not downplaying the fact that we are able to successfully manage Joseph's diabetes. We do an amazing job, but that is an over all picture. There are numerous times a day that we fail, and fail miserably. I am my son's pancreas.....how am I supposed to replace an organ in the body? There is no possible way that I can be as good as a healthy functioning pancreas, yet I am expected to be, to keep my child alive and to keep him healthy!

This takes it's toll on you emotionally and physically. I have watched myself lose sleep, health, patience and sanity to the point that I don't even recognize myself any longer. While I try my best to put on a happy face and pick up those pieces and move forward, I constantly struggle on the inside.

I see children playing soccer with Joseph and their parents watch them without a care in the world. Meanwhile, I sit there staring at a CGM trying to see what his blood sugar is doing and trying to predict what is going to happen next and prevent it from happening. I have to pull him off of the field to prevent a low blood sugar that is about to happen, forcing him to eat, and drink. While I want him to be a normal kid and play sports, it takes an extreme amount of work to make that happen. I find myself sitting in envy of those parents that get to fully enjoy watching their child play a sport, with no worry. I envy those children who get to play hard with no effects on their body. It doesn't just stop at sports, it is every situation, every single day!

I am sad and angry. I often sit and wish that I could just go back in time and change fate. I would give anything and everything to remove Type 1 Diabetes from our lives forever and go back to our old life.

I ask myself.......
How on earth am I going to do this for another 14 years until Joseph is an adult and on his own? How on earth am I going to feel when he is on his own and I can no longer make sure that he is caring for himself properly? How will I find the strength to keep pushing on? What am I going to do if Ethan develops Type 1 Diabetes?

I have hit a brick wall. This disease is going to be here FOREVER! Always lurking in the background and always stealing something from my child and my family. I feel like I am treading just enough water to barely keep my head out but I have something tugging on my ankles trying to drown my family. I read blogs and posts daily from other families and we are all feeling the same and battling the same demons.

How on earth do we all do it???
We have to keep on treading that water because we have no choice. Our children need us to take care of them, and need us to show them that nothing can or will stop them. However, I feel like I am teaching my son to just bury his feelings and keep moving forward because this is just something in life that he is going to be forced to cope with and manage.

I remind myself to be grateful for the discovery of insulin, although it is just his life support, it gives him life! I remind myself that they are making great strides in advancing the management of T1D and lowering the risks of long term complications!

I remind myself to keep the hope that we will have a cure, but I don't want to wait and hope. There are parents and diabetics that have been waiting and hoping their entire lives for a cure! So I force myself to stand up and do something about it. I am using my voice, sharing our story and trying my best to raise money to prove history wrong. I will not stop until my son has a cure and my family is free of Type 1 Diabetes once and for all. I am not judging those families that don't participate in raising money or advocating, I am just saying that I can't and won't sit back and wait and just hope for something to change.

 Get up, Stand up and BE the change!

I am inspired and encouraged by the diabetes families that I have met. Without their constant support, I am not sure that I could keep pressing on, in the manner that I do. So thank you to those families and thank you to those who find refuge in my words. Just know that you are never alone and we are all feeling the same way and thinking the same thoughts. We are in this together and together we will beat diabetes once and for all!!!!

Sunday, September 28, 2014

This is not routine.....

This month has been a whirlwind and I can't believe that it is nearly over. We are trying to get back into school mode and Joseph is playing on his school soccer team again this year. It has been challenging to adjust his diabetes management with the new physical activity and the hot weather that we have been having! We are desperately trying to fight off those low blood sugars with the help of our Dexcom CGM and NIGHTSCOUT (see details here) Learning how is body responds is one of the single most difficult things to accomplish because it never seems to be the same....EVER!

Along with the school and soccer we have also had to take Joseph to the Ear, Nose and Throat specialist. This is a bittersweet moment for us because Joseph actually had a surgery scheduled to remove his tonsils and adenoids. Joseph has very large tonsils that cause him to snore and have sleep apnea. Joseph's surgery never happened because he was diagnosed with Type 1 Diabetes just 2 weeks before his surgery date and there was NO WAY that we could put him through a surgery while he and we were still learning to cope with having shots, finger pokes and managing his diabetes. His snoring and apnea are continuing to worsen, so we decided that it was finally time to schedule that dreadful surgery. This time is it a lot more worrisome than pre-T1D.

This time we have to worry about so much more than just the surgery itself. How we are going to managing no food or liquids after midnight? If he has a low blood sugar we have no choice but to give him something to treat it! What blood sugar range do we send him into surgery? How will his blood sugar react being under anesthesia, and how will he react? Will they let us monitor him via NightScout while he is in surgery? How are we going to get him to eat and drink after surgery to be able to regulate his blood sugars?  These questions are continuously running through my mind and my nerves are already shot and surgery isn't for another month.

This is no longer the normal outpatient routine procedure that was scheduled before diagnosis. We are now having his surgery done at the hospital. The hospital where they have the T1D pediatric unit in case something goes wrong and he has to stay for treatment, the hospital we spent the first 3 days of his Type 1 Diabetes diagnosis. We must have consultations with his Endocrinologist, Pediatric Anesthesiologist, and Surgeon. There has to be a plan and there has to be a backup plan if god forbid the need arises.

This is not routine, but then again, this is what life is like when you are living with Type 1 Diabetes, nothing is routine!

Wednesday, September 17, 2014

Am I an Advocate? ABSOLUTELY!

This past month I have been eating, sleeping and breathing Diabetes Advocacy and I love every minute of it.

I have done everything from a speaking engagement, fund raising, writing a magazine article, to helping a fellow D-Mom get a revolutionary Free Diabetics Movement off and running!

This is what dreams are made of, standing up for what you believe in and never looking back! Fighting for awareness, fund raising and a cure is a battle I will win. I will not stop until my son is no longer bound to the shackles of Type 1 Diabetes.

Thank you to all who have supported and encouraged me on this journey. It truly means the world to me and has shown me how much compassion and generosity is still left in this world and that gives me the hope and drive to continue fighting!

If you haven't done so already visit the Free Diabetics Movement pages on Facebook, Twitter @freediabetics_ and Instagram @freediabetics You don't have to be a diabetic to post a picture, you can post one on behalf of a friend or loved one living with Type 1 Diabetes. Just tell us how long it has been since you or they have been "free" and hashtag #FREEDIABETICS. If you would like to post one on behalf of Joseph he hasn't been "free" in 1 year 8 months!

I look forward to seeing your beautiful faces!

Thank you again, from the bottom of my heart for all of the love and support!!

-until next time

Sunday, September 14, 2014

#FREEDIABETICS

Have you heard of the newest movement in the diabetes world?
Free Diabetics Movement

This is one of the most brilliant advocacy movements that I have seen since the "No More Pricks" campaign.
The objective: A mug shot! Why a mug shot? Well because those living with Type 1 Diabetes have been sentenced to Life in Diabetes Prison.
It is simple, take your mug shot and tell the world how long it has been since you have been "FREE". The creators of the movement are going to make a video for November's Diabetes Awareness month. The cool part about this campaign is, the mug shots don't just have to be of the diabetic. You can take a mug shot for a loved one or friend living with Type 1 Diabetes and telling the world how long it has been since they've been "FREE".

Here is Joseph's Mug Shot that I posted to my social media accounts today.

 
 
Join the movement and let's start getting the awareness that Type 1 Diabetes deserves! Don't forget to post your pictures to the Facebook page listed above, as well as use the hashtag #FREEDIABETICS on your social media posts!
 
 
-until next time

Wednesday, September 3, 2014

Tomorrow isn't guaranteed......

The last week was....well, a complete disaster.

We lost a close family member to Leukemia just a few short days after his diagnosis. I had a medical procedure done to try and figure out the source of my health problems. My dad got his biopsy results from a procedure and they came back precancerous. Then on my 10 year wedding anniversary my grandfather fell off of a 7ft ladder while working in his garage and broke his hip. He went in for surgery on Friday and that began a whole new battle, as his life was in danger with low blood pressure and a high heart rate. He had a triple bypass 20 years ago and the doctors were mentioning a potential heart failure. We all prayed that wouldn't be the case and just waited for his condition to improve. Thankfully he was able to pull through (with the help of some amazing doctors) and is now on the road to recovery.

I am sure you are asking where Diabetes was this whole time?!? Well actually it sort of just became the background noise to all of this chaos. Nothing too crazy to report just the normal daily struggles.

A week like last week just reminds me that life is often taken for granted. One minute you can be here and the next is never a guarantee. Diabetes makes that a daily reality in our lives for Joseph, but I never really think about the rest of us. Just because we don't have T1D doesn't mean that we will be alive tomorrow. We need to embrace today and our loved ones because we never know what tomorrow will hold!

Tuesday, August 19, 2014

Sugar Stalking 101

Today is Joseph's first day of school.

Last year, we were spoiled with a set of teachers/aides who were familiar with Diabetes care. They were so on top of everything and we never really had to worry about his safety while at school. Then, he went to summer school and he wasn't around those same set of teachers anymore. A lot of situations came up that made me afraid of what this year would hold in store for his care.

Well here we are......
A new set of teachers with no experience in Diabetes care and not only does he have a main Teacher and Aide but this year he also goes to different teachers for P.E. and Computer class.

I feel like I should be more worried, but with having CGM in the Cloud and being able to see what is happening with his blood sugars, we now have peace of mind. We don't have to be stressed or worried, wondering what is going on and if they are paying attention to his CGM and behavior. We can see it first hand, and we have the ability to make decisions as if he were home with us.

He's at school, I'm at home and Anthony is at work
but
We Are ALWAYS Watching!
 




Thank You to those who made this possible! Your brilliant minds have given us "D-Parents" the ability to Stalk Blood Sugars from anywhere at anytime! #WeAreNotWaiting

-Until Next Time

Friday, August 15, 2014

Just Breathe......

Last week, I was asked by Anthony from Duck Fiabetes NorCal to speak at a Lions Club International meeting. Anthony is a fellow T1D advocate, who also just happens to live with T1D himself- Super Hero Status! Anthony is fighting to get backing from our local Lions Club members to start a Diabetes Specialty Group and he has been given a forum time at this weekend's meeting. Anthony will be speaking and has also rallied some of us local D-Mom's (one being fellow D-Mom Blogger Heather from Eden's Effort) to share our stories! No Pressure! LOL

Those who know me, know I am NOT a public speaking fan. Actually, just the mere thought of it makes me want to hyperventilate, puke and pass out! Oddly enough, I am not a shy person by any means of the word. I have no problem speaking one on one with people and sharing our story. It is the getting up in front, all eyes on me that I just can't seem to get over. However, Anthony found my weak spot!

T1D Advocacy!

I feel that I owe it to my son, to step outside of my comfort zone and do whatever it takes to help spread awareness and education. I owe it to the Diabetic Community to use this platform and stand alongside of Anthony and the other D-Mom's and fight to change the course of how this disease is treated and recognized! T1D's deserve a cure just as much as any other disease and they certainly deserve the backing by organizations as large as the Lion's Club!

So for now, I am going to put on my Big Girl Panties, take a BIG deep breath and get my public speaking on!

Wish Me Luck!

-Until Next Time

Wednesday, August 13, 2014

Lucky Number 7

Yesterday was Endo Day!

As always we had a great trip to the doctor! He is always so comforting and encouraging. He always picks my brain about my latest Diabetes obsession. Yesterday, it was the CGM in the Cloud ;)
We are the first in the practice to have it and he was showing it off to some of the office staff and jealous that he can't recommend it to his patients due to the lack of approval by the FDA. He told me that I needed to be on TV and make videos, to which I just laugh because I HATE public speaking! He also advised me to go back to school and become a Certified Diabetes Educator so that I could share my tips and tricks with everyone and get paid while doing it. I again laughed and said "Ya, in all of my spare time" LOL maybe one day!


Then comes the dreaded A1C results!! If I had to guess I would have said about the same as last time, queue the drum roll, loss of breath and panic attack.........
 
WOO HOO!!!! We dropped from an 8.2 to 7.7! This translates into an average blood sugar of 175! I still can't believe it. We haven't seen these numbers since going on the pump in December. We have been working so hard to get back on track and finally our hard work is paying off! Our Endo was just as thrilled as we were and told us not to change a thing, that we were doing everything exactly the way it needed to be done.
 
Success is a double edged sword in this life. You are excited for the moment but then quickly realize that the battle begins again tomorrow. Success today doesn't always mean success tomorrow, but we know that we are learning and growing and are on the right track to successful management of T1D.
We will continue working hard and doing our best, and hopefully that will continue to show in our A1C "report cards".
 
So for now, we celebrate our little victory and always have in the back of our heads
 
 
-Until next time :)
 

Monday, August 11, 2014

Stress Today, Endo Tomorrow

Tomorrow is Endocrinologist day.
Normally for a diabetic or a parent of a diabetic this is a day that you dread, for multiple reasons.

You get your dreaded A1C result, which essentially is a report card of how well you have been managing your or your child's diabetes the last 3 months. It tells the doctor your average blood sugar level for that period of time. The result is given in number form ranging from 5-12. The lower the number the better control that you have over your blood sugar. Recently the American Diabetes Association has lowered the target A1C level for a child to 7.5 or below! This is a number that we haven't seen since going on the pump however, we drastically improved at our last appointment and are working hard to achieve that number again! The pump just has a very difficult learning curve that comes along with it because of the multiple components that can be altered to gain better results. Learning which to change, and how to change them is overwhelming but we are doing our best!

You have to answer the What's and Why's about your management.

We are blessed to have an AMAZING Pediatric Endocrinologist. I actually look forward to the appointments so that I can pick his brain about what we need to do better and how we can improve our management skills. He is always so supportive and I usually leave his office feeling better and more confident than when I went in. We keep a list of questions that we want to ask and I always have my trusty binder with all of our reports, logs and past results. I know that we have a long road to go and I know that with the Endocrinologist that we have, that we will continue to learn and grow in a healthy way.
Not only do we visit the Endocrinologist, but he also has built a team that we meet with separate from his appointment every 3 months as well. This team consists of a Registered Nurse, a Certified Diabetes Educator, a Nutritionist, and a Social Worker. You are able to meet with all them or just the people that you are needing to further your education and management skills. We still choose to go every 3 months and we typically just meet with the CDE (who just happens to be a T1) and she will also help us tweak and modify settings and answer any other questions that we may have.

Today I am nervous, nervous to see what his A1C will come back at and nervous that we aren't doing a good enough job. It is a lot of pressure (mostly self inflicted) JP's future health is riding on us taking good care of him. I want him to be as healthy as a NON Diabetic child. I don't want him to have any lingering health problems because we were unable to properly manage his blood sugar levels. However with that, I also just want him to be a kid and enjoy kid things and life. The balancing act is excruciating, but necessary. The way that we approach his care, is the way that he will eventually care for himself. I just want to make sure that we are teaching him that his health is important, but living his life is also equally as important!

I will give an update tomorrow with how the appointment went and where our management is headed from here!

-Until next time

Wednesday, August 6, 2014

#WeAreNotWaiting

CGM in the Cloud.....heard of it? It might just be a phrase that changes the entire way you manage your child's diabetes, or even your own.

An amazing group of parents put their brilliant minds together and decided that they were no longer going to wait for the medical advancements to come, they were going to figure out a way to gain remote access to their children's Dexcom CGM data in real time!

That is how #WeAreNotWaiting was born and now this is where it gets a little....wait....no, a lot above my head LOL

Essentially in the layest of layman terms this is how the system works:

Equipment Needed
You need to have an Android phone or tablet with a data plan that will be solely be dedicated to the CGM data transfer.

OTG cables to attach to the phone and then to the Dexcom Reciever

Lastly, someone with the knowledge or bravery to tackle the system setup.

How it works
You program a phone or tablet to read and receive the data from the Dexcom receiver via the OTG cables and then transmit that data to the "cloud" where it can then be retrieved from any device, any where, any time! This means our kids/friends/parents can be monitored while they are in another room, in another state, at a play date, sleepover, sports activity, or even at school. Simply AMAZING!!

Here is what the system looks like once it is set up.

I have also purchased the Pebble Watch and have the information streaming live to it as well!!



The Facebook group CGM in the Cloud has all of the information needed to get you set up including the software, tutorials and an open forum to help you get through any troubleshooting that you may have.

Also if you could please visit this site and send your comment to the FDA supporting “the electronic transfer or exchange of medical device data from a medical device, without altering the function or parameters of any connected devices.” For people with diabetes, loosening the regulatory process for Medical Device Data Systems might make it easier for us to see our data/information on additional screens such as our phones.


Will you join the #WeAreNotWaiting movement?
I would love to hear your comments below and if you are already a user of the system how your experience has been with it!

Until next time :)

Tuesday, August 5, 2014

You don't know what you've got until......it's gone!

Last night I had the LONGEST night. Not because blood sugars weren't cooperating, but because for the first time in 8 months I had no CGM to rely on!

Joseph's sensor failed on his CGM late last night after we were leaving the golf tournament that my husband's company was putting on (that's a different post) of course J then fell asleep in the car. We decided that we would just try and re-start the sensor and pray that it would start working again so that we didn't have to wake him up and put him through a site change.

BIG MISTAKE!!

The sensor worked for two readings and then went Kaput!

9:15pm Blood Sugar Check #1- 232
We decided not to give a correction for the high because he had a lot of exercise and we were battling lows all day

9:52pm Blood Sugar Check #2 -234
same as above

11:30pm Blood Sugar Check #3 -171
Starting to feel a little worried that he was starting to drop low

1:12am Blood Sugar Check #4 -112
Knowing how his blood sugar typically starts to have a steady downward trend, I gave him a juice box and decreased his basal by 15% for the rest of the morning.

2:36am Blood Sugar Check #5- 216
Finally felt like I could get some sleep

3:38am Blood Sugar Check #6- 227
Starting to worry that he was going to go too high and need a correction

7:49am Blood Sugar Check #7- 238
Hope was alerting, but I knew that he would be waking soon and we would give him the correction and change his Dexcom Sensor at that time.

9:21am Blood Sugar Check #8- 167
Thank Goodness we didn't do any corrections!

You never realize how dependent you become on something, until it is gone. This medical device gives us invaluable information. Although not always accurate, it gives you a unique look into what his body is doing and how quickly it is doing it and so much more peace of mind during the dreaded nights!

I LOVE YOU DEXCOM!!! End of Story ;)

Tuesday, July 22, 2014

Calling all Carbies!

When J was first diagnosed I really had no clue the extensive list of foods that contained carbohydrates, so much so that if I would have had to take a test on that subject I would have failed it MISERABLY! We are talking a 20%....F-.......completely and utterly bombing the subject completely LOL. Obviously that quickly changed with T1D barging into our lives.

To make it simple for those not living in our world, pretty much everything that goes into your mouth has carbohydrates in it! What is the significance of a carbohydrate and diabetes? Well the easiest way to explain it would be that carbs are broken down by the body, converted into sugar and used as a fuel to power the body or stored for future use. A more technical explanation can be found here Carbohydrates and Blood Sugar

For a diabetic or a person that is managing diabetes your head is constantly swirling with carb counts, thinking about the glycemic index, fiber counts and figuring out the amount of insulin that is needed to counter act those carbs.

When a food is not pre-packaged and labeled with nutritional information then you are left to measure, weigh or count your foods. We use a book and smart phone app called Calorie King. This allows us to see the carbohydrate counts when you have to measure or weigh your foods and also helps us in the times that we are somewhere with no access to measuring cups/spoons or scales and we have to guess. We look at the average count for that item and the serving size options so we are as educated as possible in our guess, then we just have to pray that we made the right decision and wait to see what happens.

When J is not home I often find myself in a panic because I forgot to measure or weigh the food that I gave to E, and then I remember that I don't have to do that for him. You become such a robot, reading labels and measuring/counting foods. I am now even building a memory bank of the carb counts to the foods that he eats on a regular basis.

When we are out to eat at a restaurant we have to count every chip that he puts in his mouth, every fry that he steals off of your plate, every taste of your food that he wants. It completely consumes your life and yet becomes so second nature. My husband and myself are so much more aware of how careless we were with eating and just how many carbs we were eating pre-diabetes.

*For those who don't live with T1D themselves or manage it, I challenge you to start reading your labels and counting your carbs for one day. I promise that you will be shocked and probably start to make healthier food and drink choices with that knowledge. (for example: if you eat a PB&J- You count the bread and the amount of PB and J you put on the bread which are usually calculated by the tablespoon or if you are eating a Hamburger- you count the bun, the toppings, your fries and every tablespoon of ketchup that you dip your fries into)

*For those newly diagnosed, the carb counting does get easier and it will become less fearful when you have to guess. Just keep staying strong and using your resources like Calorie King (there are also a lot of other carb counting apps available).

*For those veteran carbies, what are some of the tricks and short cuts that you use when measuring, counting or guessing your foods??

Friday, July 18, 2014

#LOVEforDiabeticsNotHate

The reason that I blog is not for attention nor pity to our situation and J's condition. It is simply a way for me to share our story and for people to get a glimpse of what it is like to live with and manage this disease on a daily basis. I also find that networking and sharing my story with the D-Community can be beneficial. I have gained knowledge from others, so I feel in a way that I am obligated to pay it forward. I am blessed to have amazing response and support behind my blog and other social media accounts but I am sad to say that some adult T1's don't have that same support. They are often criticized and put down for "complaining" about their condition and told to get over it and just be glad it isn't cancer!

I will never understand the people who feel the need to pass judgment onto those who are fighting a battle. Who are they to compare one condition to another? Who are they to tell someone with a life long chronic disease that they should "get over it"?

It is down right disgusting, offensive and it makes me sad that Joseph might have to face this type of treatment when he is older. This is where I feel the lack of knowledge surrounding Type 1 Diabetes skews people's perception of the disease. Although Type 2 is a very different and often self inflicted disease, I have seen first hand how devastating it can be to a person's life. Diabetes as a whole is nothing to be taken lightly.

This is why all of those Diabetes Memes talking about eating sugar and getting diabetes makes me crazy.
This is why when I say the word "diabetes" people think that my son just needs to exercise and eat healthy.
This is why I  am blamed for my son's AUTO IMMUNE disease.

This is why the ignorance needs to STOP!

Please help us spread awareness and education. If you see or hear someone posting or saying ignorant or insensitive things about diabetes PLEASE correct and educate them. Diabetics as a whole need more support and less criticism. Let's all work together and put an end to these stereotypes. 

#LOVEforDiabeticsNotHate

Wednesday, July 16, 2014

Do you have "The Itch"?

J is very sensitive to the adhesive on the OmniPod and DexcomG4. Shortly after we put either device onto his skin he begins to complain that they are itching him, then once the sites come off he immediately gets a terrible rash and itches it like crazy for days! We have tried everything we can think of to stop this from happening, but just haven't found a solution......until now :)

Recently one of my favorite Dblogs six until me posted her personal experience with this same problem and how she solved it.


 
You simply apply this to the skin where you want your site and then you place the Dexcom or OmniPod directly on top as you normally would and you insert directly through the pad!

I figured if it worked for her, it was worth testing out on J. So, we first tried it out with the Dexcom site and amazingly enough not only did the site not itch him but it stayed adhered to the Tough Pad and his skin for the duration that the Dexcom was worn with, wait for it........NO tape needed at all! As if that wasn't amazing enough, when we changed the site....NO rash, NO itching!

We also decided to test it out under his OmniPod. I was more nervous for this one since the cannula inserts automatically. I was worried it might kink the cannula during insertion through the Tough Pad but thankfully it has had no issues at all in the three or so pod changes since testing out this method. Just like the Dexcom it stays adhered amazingly well, we have only had to use a small amount of tape (Opsite Flexifix) one time.


You can see from the picture above that the Tough Pads are the perfect size for both of these sites ensuring that no adhesive is touching the skin!

This is a total game changer for us and one less discomfort for J to endure! I am so thankful for the online diabetes community! This just proves that we can learn so much from each other, all we have to do is share our story!

*Nothing on this site should be taken as medical advice. Please consult with your doctor before making any changes to your medical care.

Monday, July 14, 2014

I'm Back!


Sorry I have been MIA from my blog for the past few weeks. The lack of posts weren't from there not being enough Diabetes related topics, believe me I wish that were the case. We have just been busy with family, battling illnesses and my stress level has just been at such an extreme, I just couldn't muster the energy and brain power to write posts.

Over the past few weeks we have actually attended a few Diabetes events with both JDRF and the American Diabetes Association. These are always fun and I love for Joseph to get to meet other diabetic children and for us to be able to talk and connect with people who "get" it!

I have also been gearing up for our JDRF One Walk . As our team captain I have to start recruiting walkers, and spreading the word about our mission to cure T1D and the fact that we need others help in accomplishing that goal. Every single dollar donated helps put us one inch closer to a life without T1D, but also a better easier life for Joseph with other medical advancements. While we all ultimately want a CURE, we have to be realistic that it isn't going to happen over night. The most important thing is that we are making strides to advance the medical care while we wait for that cure. These medical advancements will help to ensure that Joseph will be in the best medical condition and minimize his complication risks, so that when that cure comes he will be able to seize that opportunity!

T1D is giving us a run for our money this past month. If he is not running High he is running Low. It seems like hitting that happy medium is damn near impossible, no matter what we do. We have had pump failures, adhesive issues and to be honest it is just downright mentally draining! I try not to stress out and remind myself that we are doing the best we can. This is our first summer on a pump and CGM so we are still on a learning curve but when I download that data and see what the week has been like, I can't help to feel as though I am failing him. It is a tough high wire balancing act between managing T1D and letting a 5 year old, be a 5 year old! Plus, the icing on the cake are his impossible questions coming almost daily about why E doesn't have diabetes.......I wish that I could just freeze time, breathe and re-boot...No, wait better yet while I am wishing I'd like to add the little zapper from Men In Black ( I think I just really aged myself LOL) and someone could erase all memories BEFORE T1D!!!! Unfortunately, these aren't an option so I just have to keep pressing on, adapting to this new normal and doing the best that I can.

I have a new D-Life hack that I will be sharing tomorrow for all of those wearing OmniPod and Dexcom, so stay tuned!

Happy Monday :)

Thursday, June 26, 2014

The Final Descent

If you have or you have a child with diabetes then you probably know about the "Dawn Phenomenon" This is when the blood sugar has an unexplained rise in the morning due to the body releasing hormones around 4-5am. We do experience this on occasion but more commonly we have an opposite thing going on with J's blood sugar.

Around 3am every morning we start to see J's blood sugar make a VERY gradual fall, often causing him to be in danger of dropping low. Recently I have started to play with the Temp Basal setting on his pump to see if this would stop the drop and sure enough, it works like a charm! This allows me to test out the changes that need to be made to his basal rates. This gives us a little more peace of mind that we don't have to watch that number slowly and steadily drop for 3-4 hours and wondering if he is going to go low and if we should treat him ahead of time etc etc.

As you can see in the picture below, we were trucking along with a VERY steady blood sugar from 10pm until 2:18am.

 
 
 
Then this happens.............
 

You can clearly see when his blood sugar starts it's decline. Almost like a plane making it's final descent before landing at the airport. What causes this to happen? Does his body produce insulin during these hours? Does he have better insulin absorption during these hours? These are answers that I do not have, but what I do know is that his little body is up to something in the wee hours of the morning and as a result his body requires less insulin.

Today at about 3:30am I started out with a Temp Basal decrease of 20%. I watched and waited for about 90 minutes to see if that would stop the decline. It didn't level it out the way that I wanted, so I changed the Temp Basal to a decrease of 50% around 4:30am and as you can see he held pretty steady and actually started to have a little rise.

These pump settings are great tools to use. It is so much easier to test out dosages and learn how his body reacts without having to change the permanent settings every single time. This morning after we woke up and I consulted with my Diabetes Strong Co-Captain we decided to go ahead and make a change to his regular basal settings and see how his blood sugars react moving forward.

I hope that everyone has a wonderful Thursday and I would love to hear how you manage the body's many T1D mysteries!!

*this is in no way medical advice and you should always consult with your physician before making any changes to your medical regimen.

Monday, June 23, 2014

HATE diabetes. LOVE the diabetic.

These questions have come up more times than my heart can take over the course of the 17 months that J has had Type 1 Diabetes.

Mom why doesn't Ethan......
have to have a shot?
have to check his finger?
wear an insulin pump and cgm?
have diabetes?

Hearing these words come out of my son's mouth is like ripping my heart out of my chest, throwing it on the floor and stomping on it! J quickly discovered after his diagnosis that he was now different, but how do you explain it to a then 3 1/2 year old? In the beginning to help him cope we would let him pretend to give us all shots after he got his to make him feel like he wasn't alone. A little white lie that we as parents tell to protect our children. The fact of the matter is, that he is alone in this house! None of us know what it is like to live with T1D and have to have multiple daily shots, finger/toe pokes, wear an insulin pump, wear a cgm, and how his blood sugar numbers make him feel. I wish every day that I could understand what he has and will have to go through and even more I wish every second of those days that I could take it away from him and make it all better. After all, isn't that my job as his mother??

So when his innocent little 5 year old mouth asks me these impossible questions, what am I supposed to do? I try to explain without bursting into tears, that "Ethan doesn't have T1D, so he doesn't have to do the finger checks and wear medical devices." Then field the follow up questions as to WHY.....well, that is an answer that no one has. So I simply answer with "I don't know buddy." I have even heard him say "well, maybe when Ethan gets big like me, he will have diabetes too." Bless his heart, he isn't even to an age yet where he understands what having this disease means to his life.

This is the part where I start to get angry. Why does my child have T1D? Will he ever see a cure? How do I make him feel like he isn't different, when he clearly is? How do I protect him? How do I teach him to over come the odds and prove that this will not define who he is or what he does?

I hate this disease, I hate it with every ounce of my being! I hate the innocence and freedom that it is stealing away from my child, right before my very eyes! I hate that I have to watch him endure pain and discomfort! I hate that I have to make him sit out of play, swimming or activities because I have to fix his blood sugar! I hate that he is different! But most of all....I hate that there isn't a damn thing that I can do about it! We have no therapy, surgery, or treatment options! There is no regulating or controlling T1D. It is a minute by minute war going on in his body. He is on life support, constantly dependent on an infusion of insulin or a consumption of sugar to keep him alive! All we get to do is  wait, hope and pray that he will live to see the day that he has a CURE!


 
The cold hard truth of the matter is....I can't make it better, I can't take it away, I can't answer the questions of why he has this disease and the rest of us don't. I just CAN'T!

All that I can do is, fight every day to manage T1D the best that I can, and fight for awareness and a cure! I will never give up, because in this house we are DIABETES STRONG!

Monday, June 16, 2014

Hurry up and Wait

There has been a lot of news lately in the diabetes world surrounding the "Bionic Pancreas" or "Artificial Pancreas" and the time frame of it's much anticipated release.
Some of you might be wondering:

What is an Artificial Pancreas (Bionic Pancreas)?
The Artificial Pancreas is essentially two Insulin Pumps. One that administers Insulin and the other administers Glucagon. Glucagon is what is currently used in extreme low blood sugar situations to raise blood sugar levels. Now, this is the part that makes this system revolutionary....these two pumps are controlled by a Continuous Glucose Monitor (CGM) this relays the information to the pumps and the pumps automatically do the work and calculations and decide whether the patient needs insulin or glucagon and what that amount will be. No more counting carbs, no more multiple finger sticks. You just eat, exercise, and sleep knowing that the system is doing all of the work for you! This is as close as we can currently get to mimicking a healthy functioning pancreas!

What are the downsides of having an Artificial Pancreas?
J will have to wear THREE sites. One for the insulin pump, one for the glucagon pump and one for the CGM. That is a lot for a child who doesn't have much "real-estate" available for all of those sites. Another downfall to the system is that J will have to change his Glucagon site daily. This is a new therapy and there isn't a formula currently on the market that is viable for more than a day, but there are formulas in the works that could potentially change this status. Lastly, you are completely relying on technology to keep your blood sugars in range 24/7. For a lot of diabetics and parents this can be a difficult thing to imagine. We spend 24/7 monitoring and making life saving decisions. What will our lives be like when we no longer have to have that worry or stress?

I personally can't wait for the day that this comes to market. This will be an amazing step forward for J's health and future. He will have the freedom to just be a kid and eat whatever he wants whenever he wants without having the roller coaster spikes and drops in his blood sugar and feeling terrible as a result of it. When he is sick he won't have to feel worse because his blood sugars are also causing symptoms and worry that he will have to be hospitalized. He won't have to miss out on things because his blood sugar needs to be checked, or "fixed". He won't have to worry about the long term complications that blood sugar fluctuations can cause. Most importantly, he won't have the worry that he won't wake up in the morning because his blood sugar dropped too low during his sleep and he couldn't wake up to fix it.

Will there be complications with this system? Absolutely! After all this is not a pancreas. They are devices that can fail and will fail at times. However, it will fail a lot less often than we as humans currently do! Will those problems be worth the peace of mind and freedom that the system gives, hell yes! We have failed sites and malfunctions with his insulin pump now, but on top of that we also have to battle HIGH and LOW blood sugars daily and the complications that come along with those.

This is the first step forward to creating a life for diabetics that they could have never imagined having! This is a piece of freedom that every single T1D lost at their diagnosis. Until we have a biological cure for Type 1 Diabetes we just have to keep hoping and praying for medical advances like these. These advances will help my son to live to see the day when he can say that he "used to have Type 1 Diabetes."

So for now, we just get to hurry up and wait!

For more information about the Artificial and Bionic Pancreas updates you can look at these links :)
http://news.msn.com/science-technology/progress-made-on-a-bionic-pancreas-for-diabetics
http://advocacy.jdrf.org/our-work/artificial-pancreas-project/

Thursday, June 12, 2014

"Thanks, now keep him alive!"

This week J started Summer Camp at his school. Last year we were very blessed to have both a teacher's aide and teacher with a lot of experience in diabetes care. We never had to worry about his safety because they were always keeping a close eye on him and knew exactly what to do when something didn't go as planned. Well that comfort was quickly shattered when I showed up to summer camp on Monday morning to go over the basic diabetes care with his new teaching staff.

Mind you J is equipped with all of the latest D-gadgets: A Continuous Glucose Monitor and a Insulin Pump allowing his care to be fairly "easy" and worry free. This allows you have the ability to see what his blood sugars are doing 24/7. No needles, No vials of insulin, just watch his CGM, check his blood sugars and dose the amount of insulin that we or the pump tell you! The teacher (which will be his kindergarten teacher in two years) that has J for the morning session of Summer Camp looked at me like I was speaking a different language when I started talking about his diabetes care. She will have a diabetic child in her classroom this year but she was absolutely blindsided and dumbfounded that she would actually be responsible for any of his care. J attends a private school and they are not bound by the law to provide care or a nursing staff like the public schools and they can actually refuse to provide any care at all! Immediately my heart sank and I began to panic (on the inside).

Being the type of person that I am, I had already made a binder explaining all of his care in layman terms because I knew that he would be around new people. In the binder I have a section with pictures of the symptoms to look out for during Hypoglycemic or Hyperglycemic episodes, a user manual (made by me) for both the CGM and the Insulin Pump, Glucagon instructions and a basic BG chart with the ranges in Green, Yellow and Red sections, what to do when his blood sugar goes into those ranges and last but not least our phone numbers if they have any questions. Thankfully the teacher from last year who was involved in J's care is helping out in the afternoon session of summer camp and helped assure me that she would teach them the ropes and take care of him. I felt a little better but a piece of me knows that when J is not with her, he is with someone who has no idea what to look for or do if a situation arises. I felt so terrible for the ones who had no idea what they were getting themselves into. I am pretty much handing over my child and telling them "Thanks, now keep him alive!"

I can't even begin to put into words the fear that we as parents have when we are trusting strangers with our child's life! All week I have been worried and wondering how he is doing, if they are watching his CGM, if they are reading the binder and educating themselves, if they know how truly important and serious Type 1 Diabetes is and that it must never be taken lightly. We just have to pray and trust that they do and offer any support that they need from us to feel comfortable and confident to care for J.

These situations are what make T1D so difficult for a parent. This disease is a minute by minute management with care given by normal people.....not doctors! We have to keep our son alive and teach those around us how to do the same.
It is not fair that this disease has been taken so lightly by society.
It is not fair that we have to put that stress on teachers, loved ones and family.
It is not fair that we bear the burden of keeping our son alive and healthy.
It is not fair that we have to live in constant fear and worry about what the day holds in store.
IT IS NOT FAIR

Unfortunately, we all learn in one way or another that life doesn't care what is fair and what is not. This is our reality and this is the task that we have been given. I refuse as a parent to let my child suffer because of Type 1 Diabetes! No, I will not home school my child. No, I will not keep him from playing sports. No, I will not prevent him from having ice cream or cake when all of the other children are allowed to just be a kid. No, No, No, I will not!

I will gladly feel panic on this inside and do everything in my power to educate those around him, so he can have normal life experiences. This is our reality and we will face it head on and hopefully teach J to do the same!

We are DIABETES STRONG!


*If you are interested in my school survival binder I have the PDF's available, just email me and I will gladly send them your way :)

Wednesday, June 4, 2014

Are you utilizing your data?

Today is Data Analysis Day!!
This is when I download both the Dexcom G4 data and the OmniPod data to see what trends are happening and what changes need to be made. I have also discovered a little secret report that can help you potentially see where your A1C is at ;)

I will start off with the Dexcom report. This is the most in depth data that we have because it is giving a reading every 5 minutes 24/7. This allows us to see the biggest trends and it also gives recommendations based on those trends.
The report that you use to get the best picture of this is the Trend Patterns & Insights
I select the 14 day because it allows you to vividly see the trends.



As you can see I have circle the areas where there are the most concentration of data. At the bottom of the report it also tells you the pattern insight summary and gives you suggestions for changes that possibly could be made.

Before we make any final decisions about the adjustments that need to be made, I have to analyze the OmniPod data as well. The report that I use is the Two Week Glucose Summary


I use the Average row to see where the problem areas are and compare those to the Dexcom report, if they match then we have to decide if it is a carbohydrate ratio issue, basal rate issue or a correction factor issue.


Here is the little bonus report that I discovered before our last endocrinologist visit. I hate being blindsided by the A1C result so when I found this report and I compared it to his A1C result it was nearly DEAD ON accurate! Woo Hoo
*Now, since we use the OmniPod insulin pump, I am only able to help those users

When you are in the Freestyle CoPilot Health Management System. Under the Tab Reports you will select Statistics

Once that has loaded you select Last 3 Months from the drop down menu

When your report is loaded you will look in the Average Row and Total/Summary Column and Voila! you have your potential A1C predictor :)


I would love to hear some feedback on if this report was in fact close to your actual A1C like ours!

I hope that this has helped some understand how valuable this data can be and that if it utilized on a regular basis (our endo recommends weekly) then T1D management can be that much more successful!

*Please be advised that this is in no way medical advice, this is just what works well for our family in managing J's T1D. Always consult your physician before making any changes in your medical decisions and care plan.

Thursday, May 29, 2014

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!

Wednesday, May 28, 2014

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!!