Twins Always Take Care of Each Other!

Thursday, October 16, 2014

WE are not waiting!

I love me some diabetes technology!

Well, I am so thankful for what we live in a time that provides pocket-sized glucometers and tubeless insulin pumps although I can still wish for more! Who wouldn't when it is their child that lives with type 1 diabetes every hour of every day.

I try to look at myself as pretty laid back.
Although, I am not yet at a place where I could imagine saying a sleepover at a friend's house is in our future. Well, it wasn't. Perhaps now my thoughts on that have changed!

Thanks to the NIGHTSCOUT PROJECT!

You see, there is technology out there but government regulations slow the progress and availability in the U.S.
(Although, when you consider what the FDA considers safe for food products it shocks me why their standards for medical devices are so rigid).

In any event, the Nightscout Project is an amazing technological advancement that was not released by any pharma or device company. It was created and released by parents of a type 1 diabetic and refined and advanced by those in the diabetic community and released at no charge to the public.

As I have blogged about before, my diabetic daughter wears an insulin pump and a continuous blood glucose monitor (CGM). That CGM means that she wears 24/7 a transmitter that transmits her blood sugar numbers to a receiver device and it gives new readings every 5 minutes. A fantastic piece of equipment. Although, the receiver must be within 20 feet of the transmitter. Meaning, while in school or whenever I am not with my daughter (even if she is in another part of the house playing), I often do not have access to those blood glucose readings.

So, the Nightscout project has taken this CGM data and uploaded it to a cloud server (via a hardwire connection to a cell phone). It took some work and a bit of new hardware but this allows me to remotely view my daughter's blood glucose readings from wherever she is - or wherever I am!

Which has opened new doors for us!
I am now willing to entertain opportunities for her to participate in after-school activities that I previously would have been apprehensive about or I may be willing to consider allowing sleep-overs. 

While it may take years for the industry to get there, we are so thankful for the hard work of the individuals and the families that have spent countless hours making the Nightscout Project possible so that our family and others like ours can gain a little more normalcy in daily life living with type 1 diabetes. 
#wearenotwaiting


Wednesday, October 1, 2014

Berks T1D Connection Family Camp

Soooo
We had the most amazing time in September!

My dream when I started Berks T1D Connection was to host a local family camp for our local type 1 diabetics and their families and that dream was realized just last month and I have to tell you it was a magical weekend!


We hosted many families from our region and the program consisted of nationally renowned speakers to educate our families while our kids (T1Ds and their siblings) enjoyed awesome camp activities with the amazing camp staff (if you are ever looking for a great facility to host an event, we HIGHLY recommend the South Mountain YMCA)! We hosted a vendor expo where we filled the room with device and pharmaceutical company reps to share their latest and greatest with our families! We even had TrialNet on-site to enroll people in their study. We had great food - Moe's Southwest Grill of Wyomissing even catered our dinner! WELCOME TO MOE'S! And we had an amazing craft for the kids - a good friend who is fantastic at scrap booking volunteered to work with the kids to come in and create this awesome take-home camp photo-frame with a photo of the child from the camp! We also had a large round-table discussion which was just an amazing experience for everyone to discuss what was important to them and get feedback from other families. We had a camp fire where the camp staff facilitated sing-along songs and skits! What an amazing time!

We learned together, we had fun together, we ate together, we sang together, we walked together (a lot!), we even got rained on together! But no one even minded the rain because we were having such a great time!

We had families in attendance that were newly diagnosed and families that have been living with type 1 diabetes for many years. And it was just such an experience to spend the weekend with people "who get it." 

When the thoughts started forming to begin this organization, this is exactly what we had in mind. Local families supporting each other. This organization facilitation education and information to our local type 1 diabetic community. Raising awareness. 

We will most DEFINITELY host this camp again each year so keep your eyes open for registration information in 2015!

Please also be sure to LIKE our Facebook page by CLICKING HERE

Would you like to see some pictures from camp? CLICK HERE!



Friday, September 12, 2014

Berks T1D Connection Family Camp!

As I have mentioned in several previous posts, over a year ago I (along with some very dedicated friends) started a non-profit organization. 

We called it Berks T1D Connection
Through living the life of having a type 1 diabetic child and finding that there was no local support for our family, I wanted to change that and help others living with the same issues. We wanted to connect with others, learn more, have fun and I knew the possibilities could be endless!




Here we are. About a year and a half after that original comment from a friend saying, " you should start a support group." We have accomplished some pretty amazing things so far!

We have hosted social gatherings, we host a monthly support group meeting (usually with speakers) at our local hospital, we have hosted educational workshops, we even hosted a "candy-free trick-or-treat party!" 

But NOW - we are one day before our biggest endeavor ever! 
The Berks T1D Connection Family Camp!



We have SUCH an amazing weekend planned and so much hard work went into planning this weekend!
We have amazing speakers including Gary Scheiner (author of Think Like a Pancreas and Until There is a Cure), Ralph Cincinnati, CRNP, and Bennet Dunlap of the Strip Safely campaign for our adults (which include type 1 diabetic adults, type 1 parents and grandparents) and we have fun activities for the kids! We have fun and yummy food planned for the weekend! We have an exciting vendor expo with relevant companies coming to display their latest and greatest for our families! We have family camp activities like a campfire, family activities and more! And lots of great take-home items for our families!

We are very excited and hope our families have a great time! 

Wednesday, September 3, 2014

T1D Tags Along


We had a great summer traveling.
The weather was great. Lots of time to enjoy the outdoors.

We did our best to now allow type 1 diabetes interfere with our great times.
Although, every once in a while it got in the way. We had no major problems or incidences so we chose to "ride the waves" and enjoy our time!
Fun times on the beach!

Pod Art
Making it fun to wear an insulin pump 24/7/365 (or as fun as it can be!)

Site change on the boardwalk!


Even after junk food all day, we still managed to get lucky with GREAT blood sugar numbers (sometimes!)
Overall we had a fantastic summer and while type 1 diabetes might have rode along, it took a ride in the back seat!
Hope you also enjoyed your summer!

Tuesday, July 1, 2014

Type 1 Diabetes and the Family Dynamic

Type 1 Diabetes can be hard on a family.
There. I said it.

I am typically a glass half-full type of person so I normally will not admit to the challenges often but the challenges in my life lately have changed my perspective on so many things I can't even begin to put it into words. So, for the sake of my blog, I will start here, type 1 diabetes can be hard on a family. For many reasons. I have blogged about some of the silly happenings, some of the anecdotal happenings but the truth is, T1D will change the family dynamic.

I have many blogs and articles about T1D moms and dads calling them super heros and I have often appreciated those perspectives because daily life with T1D sometimes feels like it is an appropriate classification.

Think about it.
You have a child that is now diagnosed at a young age - some as young as 6 months old! - with type 1 diabetes. A potentially fatal disease. Requiring constant, CONSTANT... I mean 24/7/365 monitoring of blood sugar levels. There is no break. E-V-E-R. Not on holidays. Not for a party or a picnic. Not on vacation when you need a break. Not during the night when you had a long day and just need some sleep. Not EVER.

Occasionally T1D will cooperate and you get some fantastic numbers! YAAAH!
Other times, you do absolutely everything right and the numbers are like this...

Yeah - that is a whole lotta high and then a whole lotta low!
Bad pump site - right in the middle of a long car ride to the shore! Gotta love it.

But the bottom line is insulin pump sites go bad. It happens.

And you have to GUESS on the carbs of the food you (or they) are eating (if you don't have the nutrition label info, and HOPE you are close. If you aren't, then you get something that might look like the numbers shown above (or some variation of it) and have to make corrections.

Sometimes the body changes and dosing adjustments need to be made. And guess what? The body doesn't send you a memo that says "Hey! I am going to totally screw up your life for the next few weeks until you figure out how to adjust the insulin dosing!" You just have to first live with it for a while to test it to see if it is a fluke. Then start making changes to flush out the proper dosing adjustment. Fun, right?!

And speaking of dosing adjustments. You don't have just ONE thing you can change and make it all better.
If you are on shots, you are taking 2 types of insulin - likely 4 shots per day.
We currently have my daughter on the insulin pump, which we love! But then we have to figure out is it the insulin to carb ratio that need to change? Or perhaps a basal rate change? Or maybe the correction factor...
Not as easy as you would think!

How about watching your child feel sick because of having high or low blood sugar levels. Definitely one of the most difficult parts of having a type 1 diabetic child. It is heartbreaking. There isn't much to say about it because most people with children know how difficult to have sick kids but this is more frequent. When they are having fluctuations in their blood sugar levels they can feel sick daily. And all you want to do is take it away.

And then, of course, if you have multiple children, you have to deal with the "treating the illness with candy" issue. Don't ever think that any parent of a type 1 diabetic likes giving their kid candy 24/7. Seriously. We hate it. We worry about what it is doing to their health, their weight, their teeth, their bodies! Then add to that the crying sibling that is upset because they too can't have candy right before dinner or right before bed or in the middle of the night or whenever. This problem does improve as the children age, but try explaining the logic and reasoning to a 3-year-old. Try to not let that sibling feel upset or slighted.

Speaking of siblings. Imagine bringing type 1 diabetes into your home, feeling overwhelmed yourself, and realizing that you need to balance that and not pay undue attention to the type 1 diabetic child. Because you know that the other children will feel abandoned and sad and neglected. Talk about the most delicate balancing act. Because you are, in fact, very new to type 1 diabetes and very worried about the blood sugar numbers so your inclination is to obsess over those numbers and getting everything right. But you must still manage to pay equal attention to everyone in the home.

And add to equal attention in the home is the spouse. Because they are there and are looking for their usual amount of attention as well. If you wish to keep a healthy marriage, you can't forget about your spouse.

It is well known within the type 1 diabetic community that parents of T1D kids often do not sleep (at least the primary caregiver of that T1D child does not). Because there are frequent blood sugar checks overnight and if you are lucky enough to have a continuous blood glucose monitor, it is alarming to let you know when your child's blood sugar is going high or low over night and you are up to correct it. So just remember that we T1D parents are going about our days with little to no sleep - almost daily sometimes. (Everyone takes sympathy on a new mom with a new baby in the house because she is getting no sleep... keep in mind her baby is eventually going to sleep through the night. The T1D mom doesn't have that "end" in sight. We have our sleepless nights until our T1D kids are grown and they take on their own sleepless nights - and even then we still have sleepless nights because we worry about whether or not they are waking up on their own to treat their own highs and lows because we have always been there to take care of them before!)

So, all of this is happening "behind the scenes." Many people say we make it look easy. That once you get used it, it gets easier and in many ways it does. But it never truly gets EASY. It changes your lives forever. It changes your family dynamic forever. Sometimes for the better. Sometimes not so much. But you make the best of it. Sometimes we may make it look easy and sometimes it might even feel easy. But mostly we are thankful for the support we have to make it easier. Living with type 1 diabetes is not easy. Not for the parents. But especially for the type 1 diabetics that have to live with it for the rest of their lives (or until they find a cure!)

Thanks for reading!

Sunday, May 18, 2014

The School Family

This spring during our family's teacher conferences, something struck me as quite amazing.
I always knew that our school had amazing teachers, staff and administrators. But I learned that the family of students at our school was just as unique.

Every school has it's share of problems and I am sure ours is no different but I will share some of our amazing experiences.

First of all, you could always read my "Flash Back Friday" post about how amazing our school was a few years back when our daugher's CGM turned up missing during the school day. And that, indeed, was an extraordinarily stressful day and what everyone at our school did was so above and beyond that it made us feel such a strong embrace of support.

But what we encountered this year also further made us realize that sometimes you just get lucky and find yourself in a school environment that has managed to get it right in so many ways.

While sitting in our teacher conferences and hearing about reading and writing and math, our T1D daughter's teacher also shared with us a story of how her classmates show support for her and the other T1D child in her class. See, there are only two type 1 kids in their school building. And they have been placed together in the same classroom since kindergarten and both our family and the other T1D family appreciates this placement very much. These two awesome T1D kids have grown to support each other in the school environment. They walk to the nurse together, to lunch together, etc. And when the class has a daily snack I was so impressed to learn that when they need to take the time to walk to the nurse to test and bolus their insulin, the class (not at the teacher's prompting) but the CLASS of 2nd grade kids asks if they can wait until their T1D classmates return to begin their snack! TALK ABOUT SUPPORT! Talk about a great group of kids! Now, I have heard stories of kids in other schools feeling awkward about their T1D because other kids pick on them for being different and this breaks my heart. I have even heard of teachers and staff not being supportive! But to hear that a classroom full of 2nd grade kids is this supportive and kind to a couple of kids that are "different" warms my heart and in light of the other stories that are out there and makes me so thankful that my daughter can experience such a supportive environment.

Another example:
A couple of months ago during all of our snow days, the lunch menu at school was a little mixed up for a couple of days (at least I got it confused) and on a day when I thought my VERY picky T1D daughter would be buying the school lunch, it turns out there was not what she wanted on the actual lunch menu.

I got this email from the school nurse:
I want you to know how wonderful our cafeteria staff is in accommodating [your daughter].  She is buying today and they are following February 3rd menu – she thought it was the bagged lunch.  [Your daughter] did not like what they were serving (chicken patty and turkey roll up) so they are making her a special lunch – pbj, bug bites, oranges, juice, and milk.  Doesn't sound like a big deal, but trust me they are sooooo easy to work with. 

Now, I have heard stories of kids at other schools being turned away for not having lunch money or in this case when the child couldn't eat what they were serving the parent being called to bring in other food. That the lunch staff went out of their way to make her a special lunch... again - above and beyond

Our school nurse. 
I can't say enough good things. She cares for our daughter and all kids in that school as if they were her own kids. One of those AMAZING nurses. Just an amazing person. She had taken the time when the two T1D kids started kindergarten to get specialized training on their pumps (at the time they had both worn the same type of pump) and we brought reps from the company in to train her on the equipment. Her willingness to learn all about T1D and to keep us informed throughout the day is so much appreciated. It has never seemed as a chore for her or an annoyance, as I have heard other school nurses treat the chores of treating a T1D child on a daily basis. She truly CARES for our children and that is indeed a blessing. 

These are just a few examples of what make our school a FAMILY. 
We live it every day and we appreciate every moment of it. 
We recognize how fortunate we are that our children can grow up in such an accepting and nurturing environment. 
We support our amazing school and they support us. 
And we thank them - all of them - for doing such an amazing job. 

Friday, March 21, 2014

She Gets It

We had always - I know I have - since the day of diagnosis, felt that while type 1 diabetes is a devastating diagnosis and one we wish we had never gotten for our child been glad that it wasn't "something worse." There are so many more immediately life-threatening conditions, more "painful" conditions, more debilitating conditions, etc.

And let me preface this also by saying that this may even bristle some feelings within the T1D community. Everyone has their own feelings about it and that is their right. OUR feelings have always been - as is our right - (which is not to say that anyone else's feelings or approach is wrong or not valid in any way) that our family approach would be to look at this disease as just another part of life to be dealt with and we would try to be as positive as we could be (because personally I am a glass half-full type of person).

Anyway, since her diagnosis at age 3, we have put on a strong and brave face in front of our now type 1 diabetic daughter and tried to model the behavior we wanted her to embody.

I have blogged on occasion about what an outstanding young person she is, the strength of character and bravery she has at such a young age. I really do look up to her. She, in spite of her own "hardships," feels great empathy and compassion for others - putting others needs before her own in many cases. Really quite something.

In any event, there was a medical-type show on the television today and there was a boy with a debilitating and painful condition on this show. Her attention tends to be drawn to other children with medical conditions. And I just stopped and I sat there and watched her take notice. She almost didn't want to watch at first. The boy was brave and had an amazing spirit which she admired. But after watching most of the segment looked back and quietly said that she was glad that she "only had type 1 diabetes."

I can appreciate her comparison and her getting that point at such a young age. We have always encouraged her to realize many things about type 1 diabetes.
She can do anything that anyone else can do (except join the military and drive a commercial vehicle across state lines - yeah - go figure!)
She can walk
She can talk
She can eat
She can see
She can hear
She can play
She can go to school
She can LIVE!
The list goes on and on!

I know she is young. But I hope she can keep this attitude throughout her lifetime. 
There is currently no cure for type 1 diabetes but we always have HOPE!


Sunday, March 2, 2014

Our Healthy New Year

Many minor changes over our last few weeks.

We have had A LOT of snow (and snow days) in our neck of the woods.

We have noticed that we need to add more "sites" for the Omnipod because for whatever reason, my daughter now seems so show signs of minor skin irritation under the site after the pod is removed. The skin is rough, or as she calls it "rumbly" for several days requiring several applications of moisturizer. So while we used to just rotate between the triceps and front of the legs, now we have added the "upper tushy" area as well.

We have also made a positive shift in our eating habits. Making baby steps toward healthier eating. I am trying to fully understand what it means to "eat healthy" and depending on who you ask, you will get different answers. Eating healthy can mean reducing carbs, reducing refined/added sugars, eliminating GMOs, etc. (or all of the above).

One thing we did was join a CSA (a local farm co-op) to receive a weekly share of farm-fresh organic produce and other items. One word - AWESOME. We love it! Take a look!

Research it, I am certain this is available in most any community. 
Every week there is something different for our family to enjoy. Something HEALTHY :-)

Yes, it may be a bit of a challenge to guess on carbs because these items do not come with nutrition labels. But they are farm fresh and I know they are healthy and full of nutrients (and not added sugar, preservatives and GMOs).

Anyway, this was our "healthy New Year's Resolution." And it is one that is EASY to stick to because not only is it healthy but it tastes GREAT. What was yours?

Monday, February 10, 2014

The Sleepless Nights

What is it about falling asleep?

Does the blood sugar levels of your type 1 diabetic child just KNOW that you have just finally slipped away from a long day of work, kids, laundry, dishes and everything else and you were JUUUST about to get some peaceful rest - if only for a little while and BAM! That blood sugar level that has been cooperating all evening decides to go high or low... doesn't matter. As long as it means the continuous blood glucose monitor (CGM) alarms and rips you out of that blissful sleep in what seems like the moment you fell into it! It is like there is a little leprechaun hiding inside that CGM and he lies in wait for you to drift off and the moment that little guy hears your breathing slow and sees your eyelids start to flutter; he pounces!


And it is enough to scare the living daylights out of you. When you hear that loud CGM alarm during that delicate stage of sleep, it makes you jump! Heart pounding! No way to get back to sleep afterwards. (Thank heavens for social media - this is why you will see the D-parent posting online at all hours of the night! So many times we will wake from testing our child and not be able to fall asleep again. So, what do we do? We post about it on Facebook or Twitter. HA! Or we read a book or look for new ideas on Pinterest!)

I remember the days before having children when the thought of staying up throughout the night (or waking frequently) for the period of a few months until the babies slept through the night) seemed like an almost impossible task. And now it is a part of our every day reality. Forever. Well, until a better treatment option or a cure is found for type 1 diabetes.

So, I would say I am lucky. I am a "functional sleepless d-parent" but I feel bad for those that are not. I seem to do well, at least pretty well on very little sleep when that rotten little leprechaun comes out to play at night. But I know, I am sure anyway, there must be some people that NEED that sleep. That can't function without that sleep so this lack of sleep becomes a very real problem in their life. Lack of sleep is directly tied to weight gain, mood disorders, memory loss, depression and many other health conditions. Imagine this extended over a lifetime. With type 1 diabetes there is no "ignoring it" and wait until morning to fix the problem. If there is a low or high blood sugar reading over night it must be corrected. Some nights - bad nights - and for heaven on knows the reasons sometimes - you can end up with only an hour of sleep (if you are lucky!) Thankfully these nights don't happen often, but they can happen.

I have seen data that shows that blood sugar levels (overall A1C) seem to stabilize as individuals grow older (with good control - lifestyle choices). Indicating that children are just particularly difficult to keep in tight blood sugar control - difficult - not impossible. I cling to this and hope it is true, it certainly makes sense. Although, I hope by the time we get to her adulthood there is a much better treatment option or even a cure :-)

So, if you are like me and spend most of your nights awake. 
Allow yourself a little CAT NAP throughout the day. 
It is good for your health!

Saturday, January 18, 2014

First Sleepover Without Mom

A lot has happened since my last blog.

The holidays.... twins birthdays... snow storms...

And the biggie! A SLEEP OVER - without ME to sleep over with the girls!
What a BIG step for any parent but especially for the parent of a type 1 diabetic child!

For the T1D parent, we worry every night when they are asleep in the next room. Imagine the worry when we are trusting either the children or the adult supervising with that monumental task of keeping them ALIVE through the night when the unspeakable can happen while everyone is asleep!

But the day had to come sooner or later and I decided to take the leap. It felt safe. It was a girl scout sleepover. It was a room full of kids and girl scout leaders. My T1D daughter wears a continuous blood glucose (CGM) so it alarms when her blood sugar levels rise too high or drop too low. And, you know, she is reaching an age where she is old enough to know enough to get herself through with what she knows.




She knows how to test.
She knows how to bolus.
She knows how to treat a low.

Only thing she maybe isn't so great at?
Paying attention to that CGM if she is busy having fun.
Feeling her highs and lows on her own (which many T1Ds can)
Guessing carbs in food if it doesn't have a the nutrition label (and really - this is an acquired skill that even after YEARS of practice, I don't have mastered!)

So, I had been texting with the leaders through the evening and night.
First oops of the night... late evening snack without bolusing (dosing insulin)... big oops. Well, her blood sugar started to skyrocket but you know. Go with the flow. Test and bolus, test and bolus - get that number back under control.

But, I think with the correction of that whopping high, there was a nose-dive low that followed throughout the night that had to be corrected maybe a couple of times.



I then got a text first thing this morning letting me know that all was OK and letting me know what the breakfast was going to be (donut holes) so I quickly flipped over to my dandy "Calorie King" app on my phone and looked up the carb content for donut holes and texted back the carb content PER donut hole she had and they were off and running again!




And it just goes to show, it can happen, it WILL be OK. It can be OK to trust. Scary... but OK.
Go ahead and ask! Did I sleep? Nah - not really too much. But hey, it was our first time. I will get better at it. And so will she.

And from all reports, the twins had a SMASHING great time at a sleep over WITHOUT their mom hovering over them!