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
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


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.


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 ;)