Twins Always Take Care of Each Other!

Friday, December 20, 2013

The Unexplained

As the parent of a type 1 diabetic, there are so many new things you learn:
-How to count carbs (and make accommodations for fat content)
-How to live on little to no sleep on a regular basis
-How to guess the carb content in the food that doesn't provide you with the carb content (UGH - no matter how many years you do this, it never gets easier in my opinion!)
-How to appreciate health and not take it for granted
-How to negotiate the health care and insurance system
...and so on.

What makes it difficult is the fact that no matter how much you know, no matter how much you "do it right," there are still times when things go wrong.

Let me first say that right now I am choosing to write because I could not be more thankful for a CGM (continuous blood glucose monitor) reading that looks like this:


But I could tell you that everything has been going well and I am an EXPERT and I deserve a big pat on the back. BUT, if I want to give you an honest glimpse into what life is really like in a type 1 diabetic household I have to show you the good and the bad. Well, the bad looks like this:
This is the exact same time on the CGM - just extended out to the 24-hour view. Not so pretty, is it? Fighting a lot of highs - then lows - then highs - then lows.                                                                                                                                           See that crazy nose dive in there around 6am? That one, though was my fault. Here is where I tell you about the "RAGE BOLUS." That is where a type 1 diabetic (or the parent of one) is fighting high after high after high and no matter how much insulin you dump on that high the number just doesn't seem to budge. Like I might as well be dosing water for how much good it was doing. So, with the frustration of continuous highs and the fog of a brain on no sleep I dumped a bit too much insulin and BAM! Well, that blood sugar finally came down alright!

                                                                                                                                                     
                                                                    
                                                                                                                                                                                                                                                                                                                           Now, we have been seeing this roller coaster for a couple of days now. Totally unexplained. And knowing that the problem is not with our insulin pump settings, I had tried other corrections - changing out her pod (insulin pump site). Made slight modifications to snacks to see if there was just a problem with fatty snacks before bedtime (such as ice cream). But nope, we were still seeing these issues. She has had a bit of a sinus issue this week but a minor cold normally will not have an impact like this on her blood sugar numbers. 

So, this morning we changed out her pod - again - this time with a brand new bottle of insulin. That the first picture is the view of what today looked like (since breakfast). So far, so good! I don't want to jinx it because I SWEAR sometimes that really does seem to make a difference! I am really hoping that it was the bottle of insulin because I know I could really use some sleep again sometime soon...and I know my D-girl's fingers could use a break from all of this testing!

Chances are I may not write again before the holidays so if I don't, please have a happy and safe holiday, from our family to yours!

Friday, December 13, 2013

We Have Grown and Gained So Much

A diagnosis of type 1 diabetes is devastating for every family that receives it. It is especially hard, in my humble opinion, when it is your child that is diagnosed. No matter which family member (and keep in mind there are some families that have more than one) is diagnosed with type 1 diabetes, it changes your family dynamic forever.

Meals are no longer simple.
Snacks are no longer simple.
Bedtime and sleeping schedules are no longer simple.
Vacations and vacation planning are no longer simple.
Holidays are no longer simple.
Play dates are no longer simple.
Sleep-overs are no longer simple.
Parties are no longer simple.
Meals eaten out are no longer simple...

And the list goes on and on and on.

And the psychological impact among siblings also becomes more complex.

Certainly the more experience you gain and the technology that is out there (if your insurance is willing to pay for it and if you can afford it) can make life a bit easier and add a layer of normalcy back into your life. But once you hear that diagnosis of T1D, things have changed forever.

Although today I choose to look at the bright side. 
Over the past several years we have met so many AMAZING people.
We have learned so many things.
We have opened our eyes to realize that there are so many others out there just like our family that feel the same way we do every day.
We have started a non-profit organization to bring together local T1D families and offer support and educational/informational services. Check out www.berkst1dconnection.org or www.facebook.com/BerksT1DConnection.
We have been creating a lot of great awareness in our community about type 1 diabetes and it is sure to only get better!

Today my daughter's pod (insulin pump) alarmed at school (which mean it shut down and discontinued giving insulin and required a change to a new pod). And for the first time, she flew solo and changed it by herself! I didn't drive to the school and do it for her! We have always encouraged her to be a part of her diabetes care and that she learn how to care for herself in case of an emergency and she would HAVE to do it on her own. And she takes ownership of it and today she did. I couldn't be more proud of how she handles her daily struggles and challenges. To know her, most people wouldn't even know there was something "special" about her.

While T1D may have thrown us a curve ball, we choose to swing at it every single time. In all fairness and honesty, I can't say that we are knocking it out of the ballpark everyday. That would be too broad of a statement and really, T1D doesn't allow for that kind of perfection. Sometimes we get a great hit, sometimes we strike and yes, sometimes we will have days where we knock that ball right out of the ballpark. But we take it as it comes and we live and we love and we appreciate what we DO have and we try to be thankful for the amazing things that type 1 diabetes has brought into our lives.

Monday, November 25, 2013

The "Diet" Lifestyle

You know, there is a lot of negativity flying around out there about "diet" products and artificial sweeteners.
And for those living with type 1 diabetes, this really puts you between a rock and a hard place.
With headlines like:
"A Killer in Your Fridge - Sweet Poison" and "The Dark Side of Artificial Sweeteners" it is hard not to worry.
It is easy to judge when you have a working pancreas.

BUT LET JOSLIN DIABETES CENTER CORRECT SOME OF THESE INTERNET RUMORS:
CORRECTING INTERNET RUMORS ABOUT ASPARTAME


Let me say, it is easy to judge when you have a working pancreas. When you HAVE OPTIONS on choosing to drink diet or regular. When your choices are based on whether or not you are fitting into your jeans that week or not. But this is a life-long commitment to live within moderation for those living without functioning beta cells producing insulin in their bodies.

So, here is the dilemma. Having twins, do I allow BOTH (and myself) to live the "diet" lifestyle?
This is something I have really struggled with since diagnosis. There are  two schools of thought on this:

1. We could go on living our lives leaving my diabetic daughter to be the only person in our home to adjust her diet and lifestyle. We all drink "normal" and she lives "diet." Living with type 1 diabetes is not only the physical disease. There is so much a psychological impact on those living with the disease. And those living with those living with the disease. Type 1 diabetes is truly a life-altering diagnosis.

Being on an insulin pump and continuous blood glucose monitor has allowed us a great deal of freedom to live as normally as possible BUT that being said, we still want to live within a respectable amount of moderation and not freely hand out sugary drinks (soda and juice boxes and fruit snacks galore!)

AND the other school of thought?

2. We are in this together. END OF STORY.
And this was glaringly clear to me when I took my "type awesome" daughter grocery shopping over the weekend. She always chooses diet drinks - when we are out to eat, when we are at the store to purchase drinks for the house, etc. When I asked her WHY and since we were alone I felt I would get the honest answer. I told her that the only difference between a diet drink and a regular drink is the sweetener used and they are both sweet so since she does not have type 1 diabetes that she could choose whichever drink she would like and do you know what her response was? "I don't want [my sister] to feel bad so I will always drink what she drinks."

Some DIET SODA love!
It is important to note that we actually rarely drink soda - diet or otherwise. This treat is usually reserved for eating out occasions. But artificial sweeteners are found in a wide variety of drinks that many T1D families rely on regularly.


Now, I am sure that there are going to be the anti-artificial-sweetener fanatics that will go bonkers over this. Please save your breath. First of all, I have never been more proud of her. As previously mentioned, living with type 1 diabetes is life-altering. And being the sibling of a type 1 diabetic is not the easiest thing in the world either. So, for her to be so thoughtful and considerate (and NOT resentful) in my opinion is a gift from the heavens! And I will NEVER discourage it!

In my opinion, choosing an option that alienates a member of our family is not an option. Isolating my diabetic daughter would cause her to feel alone in her treatment. Option 2 shows her that we are "IN IT WITH HER" - as much as we can be anyway, in our own way. I equate it to when a chemotherapy patient loses their hair and their family members also shave their head in solidarity. This is our display of solidarity. I swear, I would take this disease from her and live with it if I could. But I can't, which breaks my heart every day. But I will, the rest of the family will, do what we can to make her feel loved and accepted and not alone. She IS NOT alone and will NEVER be alone. 



Saturday, November 9, 2013

How WE do Halloween

The big question in the type 1 diabetic community is always... How do YOU celebrate Halloween?
Well, the candy holidays are always a little more challenging.

Type 1 diabetics CAN eat candy. Here is our T1D lesson for the day. Type 1 diabetics can eat all of the things anyone else can eat. Type 1 diabetics CAN actually drink non-diet soda/drinks if they so choose to do so. So long as a type 1 diabetic knows the carbohydrate content in what they are consuming and they are maintaining appropriate blood glucose control (meaning their blood sugar numbers are "within reason" appropriately within range), they can eat and drink the same things "normal" or non-type-1-diabetic people eat and drink. NOW, that being said, does that mean that they want to? Does that mean that they should all of the time?

I can tell you as the parent of a T1D daughter, I allow for her to be a child and want her to feel like a "normal kid" as much as possible. But that doesn't mean that I am shopping for the sugary cereals and stuffing her lunch box with fruit snacks. We do try to promote a healthier diet. I will say we are more conscious of our food choices. We do our best.

But holidays revolving around candy usually just make me cringe. Not because they have to, because it wasteful. We just don't eat that much candy. Our lives don't revolve around it maybe as much as if we were a non-type-1-diabetic family.

So, since we have an organization this year - FINALLY. An organization to support our local type 1 diabetic families (Berks T1D Connection), a bunch of us got together and thought it would be fun to do something for the kids! So, we did! And it was AMAZING! We spoke with our kids and in lieu of trick-or-treating this year we had our "Candy-Free Costume Party" and it was a smashing hit!



We can't thank enough the local Crowne Plaza that donated space to help us make it happen! We had crafts, food, zumba, games and candy-free trick-or-treating!

And the kids REALLY enjoyed decorating their own trick-or-treat bags!

We even had the "Guess How Many" that you often see at parties and picnics but we, of course threw our own spin on it by guessing how many GLUCOSE TABLETS, IV PREP PADS, AND QUARTS OF CRYSTAL LIGHT!!

So, we say from now on - BRING ON HALLOWEEN! We had a fabulous time and we appreciate all of the families and businesses that helped to make this evening possible! The evening was well attended and the kids felt like "normal" kids and even took home a bag FULL of trick-or-treat items they COULD enjoy!

Sunday, October 27, 2013

When the Caregiver is Sick

My last post was about how early in the year it seems for all of "this illness" to be going around. Kids seem to be getting sick left and right! And guess what happens after the kids get sick? Yep! You guessed it! The parents get sick! 

So, that is what I have been doing for the past week. Surviving. 
Because being sick when you have kids is hard enough. 
Being sick when you have kids with a chronic illness like type 1 diabetes is an entirely different thing all together. 

When most people get sick they feel terrible, as we all do. Head pounding. Coughing. Fever. Aching. Can't move. 
The key difference is when you take that heavenly dose of NyQuil at night after a dreadful day of suffering and can't wait for your head to hit the pillow for some rest, you would expect to finally get some rest. But after hours of feeling terrible and you are about to drift off into some much needed sleep, the big D-MONSTER decides to creep in and pay you a visit! Head delightfully twirling and ready to drop off to sleep you hear the glucose monitor alarm! AAAHHHH!!!! 

I would have to say, I feel I am a pretty good sport about going sleepless almost any other time of the year. That being said, it is worth acknowledging here that most parents of T1Ds are sleepless either many or most nights. But sometimes, you just NEED to get some rest and do you know what? There is no break from type 1 diabetes. 

When that alarm goes off (indicating a high or low blood sugar), it must be dealt with properly if you don't want to see adverse and unsafe things happen. Feel well or not. Walk or crawl to the next room on all fours, that high or low blood sugar must be corrected. Now, this isn't to say I won't be more tolerant of a stubborn 200 at 3am than I would normally be because, well, we are talking about a sliding scale of my discomfort to her safety level here. Will things slide a little bit depending on my level of pain or discomfort? Sure. No matter how much I hate to admit it, I am not superhuman or invincible. I am not perfect. I can only accomplish what I am capable of accomplishing. And as long as I am keeping her safe and healthy and her physicians concur, than I can be pleased that I am doing a good job. 

So, I break out the trusty fail-safe cures and power-through...


 I hope everyone out there is staying healthy! This was a nasty cold/virus/whatever it was! I leave you all with germ-free wishes for upcoming weeks (and months!)


Friday, October 18, 2013

Seems a Bit Too Early

We always think of getting sick in the winter. You know, the middle of winter when it is cold out and "everyone" is sick. But here we are, only stretching into the middle of October and we are fighting some pretty severe illness already and from what we are seeing on social media and hearing from the doctor's office is that we are definitely not the only family seeing absences from school already!

Both of our daughters have missed school.
Unfortunately, our type 1 diabetic daughter has suffered the worst of it at this point. What started off as a cold has now progressed to pneumonia.

This is the second time since her diagnosis of T1D that she has had pneumonia.

When you or someone you love is diagnosed with T1D, you are barraged with a new education on the disease - in a very short amount of time. You learn how to give insulin shots, you learn how to count carbs (you learn what a carb is!), you learn what hyper- and hypoglycemia is and how to treat it and the list goes on and on. And also you learn about sick days. Sick days with type 1 diabetes becomes something completely different than what you are used to. Sometimes when a T1D becomes sick it doesn't necessarily change anything - blood sugar levels remain fairly normal and all is OK. Although, other times, all hell can break loose and you have to go into "damage control" mode. You live to get those numbers under control although it seems that no matter what you do you can't get those numbers under control. Getting sick for a T1D or the parent of a T1D can be a very scary time. There is certainly a heightened level of awareness of illness, and subsequently stress around cold and flu season.

This illness for us began about two weeks ago, which is why you haven't seen any posts from me (I apologize). I would have to say that normally we are pretty lucky (knock on wood). Normally when our D-girl is sick we don't see much of a fluctuation with her blood glucose numbers. But this time was different. Her numbers were all over the place from the start. We rode the BG roller coaster all day every day for about a week and a half. And no matter how much you try to tell yourself it isn't your fault, it still makes you feel bad that you can't control it better. She missed a few days of school but her lungs were clear. OK then, back to school. Few more days pass and her blood sugar levels actually start to moderate. BUT, the cough just will NOT go away. In fact, I just could not shake the feeling that it was getting worse. So, I took her back to the doctor, even though she did not have a fever (which is usually a sign of a pneumonia - which is the first question the nurse asked me when scheduling the appointment when I suggested it might be pneumonia). I firmly believe that parents must always trust their instincts. Sure enough, there it was - the pneumonia on her left side.






After learning she had Pneumonia we left the doctor's office and headed over to pick up a special present. A "hello kitty" that she had been eyeing up. Because, of course, during the x-ray we removed the continuous blood glucose sensor to avoid risk of damage from the radiation (just to be on the safe side). She dislikes having these put on so as if it wasn't bad enough that she has pneumonia, but now she has to have the CGM sensor reapplied!

And, of course, being home for a few more days, we needed to stop in and pick up the series of Harry Potter movies!


I will take this directly from my post on Berks T1D Connection's Facebook page from today:
For a variety of reasons, people with diabetes are thought to be at higher risk for getting infections. As we head into cold and flu season, this becomes a concern for those living with type 1 diabetes. This is because diabetes can make the immune system less able to fight illnesses.

Vaccination is the Best Protection against Flu.
CDC recommends that people with either type 1 or type 2 diabetes, who are 6 months and older, get a flu shot. (The nasal spray vaccine should not be given to people with diabetes.)

People with type 1 or type 2 diabetes are at an increased risk of developing pneumonia from the flu.

Please, friends, protect yourselves and those around you by getting vaccinated! It could very well save a life!

CLICK HERE for more information!

Thursday, October 3, 2013

Talking With Friends


I am a little surprised that we started out this year knowing a few people in our community that also lived with type 1 diabetes, but not that many.

I don't think I could have ever dreamed that in just a short time we would build such an amazing network of local families all now reaching out to one another for support.

I know that I have appreciated so much the support. Just knowing that others are out there that understand. Being a family living with T1D is 24/7/365. You have good days and you have bad days. Some days you feel in control. And sometimes you have days when you have no clue what is going on.

What I have learned is that what we feel is normal.
It is OK to be happy on good days.
It is OK to cry on bad days.
It is OK to lean on friends when you feel you have nothing left to give.
It is OK to ask for help.
It is OK to offer your support to others in need.
It is OK to not know.
It is OK to try and succeed - and celebrate those successes.
It is OK to try and fail - and try harder tomorrow.
It is OK to screw up sometimes.
It is OK to accept that you are doing your best.

We are not perfect, we do our best. But it helps to know we are not alone.

Monday, September 23, 2013

Back in Business!

I don't think I have to tell you how thrilled we were to receive this package last week!

And bet you can't guess what was inside...

I know there are a lot of diabetics that live without continuous blood glucose monitoring systems - either by choice or because insurance will not cover the system, but I would find life pretty difficult to live without this technology. I have very much come to rely on the security of knowing at any given moment what my D-daughter's blood sugar levels are and receiving an alarm notification when she is going high and when she is going low so I can take action to correct it.

So, believe me when I say, that for a family living with type 1 diabetes, THIS IS A THING OF BEAUTY...

J

Saturday, September 14, 2013

Bionic Pancreas

Friends. Please take a moment to watch this. Please. Pretty please with artificial sweetener on top!!

VIDEO: Diabetic Children to Test Bionic Pancreas

Many times you hear me talk about the fears of being a T1D mom - especially at night.
This is the the technology that we are most excited for (except, of course, for a cure!)
We have met and seen Ed Damiano at several conferences now and are so impressed.  There are skeptics out there that always say things like "There is too much money in the medicine of treating diseases, they will never find a cure." But when you meet people like Ed, you believe one day there could be a cure. Because there are biomedical engineers with their heart and soul into finding a cure. Yes, Ed happens to have a better treatment option (not a cure) but there are wicked smart people like him around the world working on a cure and I believe.

IN THE MEAN TIME, I am so thankful for people like Ed and his amazing team who have dedicated his life's work to finding a better treatment option for my child... and all those living with type 1 diabetes. We very much look forward to the day that the FedEx man brings one of these beauties to our doorstep!



For more information on his work, please visit: Bionic Pancreas

Wednesday, September 11, 2013

Houston...We Have a Problem!

Well, I suppose I should have paid more attention to that warning! You know the one about the CGM (continuous blood glucose monitor) transmitter battery only lasting approximately six months. I had this nagging feeling that I should have been taking action on this but when I called the medical supply company, the rep actually talked me out of ordering it before the battery took a dive. She said why use it up before you have to?? And I figured - geez, that must be what everyone else is doing if that was what she was recommending so I let it ride...

Big mistake. And, you know, it was one of those mistakes that I really should have seen coming. It is common sense. But I was busy that day and I didn't give it much thought after that. Really. The life of a T1D parent is filled with enough to worry about, this was the one thing I turned my back on and BOOM! It blew up in my face... TODAY!


Yep! There it is! In all of it's glory! The transmitter stopped transmitting this afternoon and for the first time in quite some time I feel scared to go to sleep tonight. My little D-girl is surprisingly upset about it as well. Although I am sure she will enjoy the reprieve from wearing the sensor on her belly for a few days until we get the insurance authorization and the transmitter ships to us, I overheard her talking to her sister about being upset that there will be no CGM for a few days.

I say scared to go to sleep tonight because for anyone who might read this that is not the parent of a T1D child. Know this, blood sugar levels spike and drop throughout the day and night with or withOUT reason, with and withOUT warning (unless, of course, you have a CGM, which will give you a warning when those highs and lows are coming). So, for a T1D parent, and I am guessing T1D adults, nighttime is a scary time. You go to sleep and have to take a leap of faith that all will be well in the morning. All will be well. Know that I am using the kindest words. This is the most extreme fear that T1D parents have and it is very real. Scary stuff happens and can happen. And as a parent to think it could happen while you are sleeping?! Talk about a sense of failure to protect your child. And this happens EVERY-SINGLE-NIGHT in the life of a D-parent. Before we got the CGM, do you want to know what the first thing I did in the morning was? Immediately walk to her room and touched the inside of her palm to make her move to make sure she was responsive, all the while holding my breath. That was even before I could test her blood sugar levels. THAT is why I am constantly talking about how much we love the CGM and why I hold that little device in such high regard. It alarms when she goes high or low. It sits on my night stand like a little night sentry watching over her and keeping her safe.

BIG FAIL ON THE PART OF THE D-MOMMY! What was I thinking? I should not have let the medical supply company rep talk me out of simply ordering the replacement at the 6 month mark and having it on hand for when the first battery died.

So, I don't anticipate sleeping much over the next few days. I am back to fearing the worst in the overnight hours. You really come to rely on this amazing piece of technology and it offers such comfort and security. It will be quite a hardship to go without for the next few days.

Learn from my mistakes everyone, be prepared! Always! Think several steps ahead and don't let your guard down for a moment! And yes, I realize it is not the end of the world, but when living with a type 1 diabetic child sometimes it can be such a challenging lifestyle and once you find your "groove" it can be a bit unnerving when something comes along to knock down your house of cards, just sayin'...

Thanks for listening and please consider sharing! I look at this as a "teachable moment" so hopefully someone else can learn from what I did wrong J

Wednesday, September 4, 2013

The Resilience of Children

Yesterday was quite a day.
Let me start by saying, children are really quite remarkable. From where they get their spirit and resilience I just don't know sometimes.

As you may be aware if you are a loyal reader of my blog, we recently changed our daughter's insulin pump from the Animas Ping to the Omnipod. And we are LOVING the new tubeless pump.

On an insulin pump, you are supposed to get three days out of an insertion site and with the Animas sites we only ever got a solid two days. Since the change-over we have very much been enjoying the full three days that most people have been enjoying all along.

But, a couple of weeks ago we started getting POD ERRORS. Meaning, the pod would alarm (LOUDLY) and shut down forcing us to switch out the pod completely. At first we didn't think much of it. Maybe a fluke? But then it kept happening. We were in touch with the company rep and worked through some possible troubleshooting and we seemed to find that there wasn't a problem with the site itself - maybe it was the equipment. But we gave it a try and kept going.

YESTERDAY, the first day back to school from the Labor Day holiday...
The kids went to school and I headed to work - normal day. Until I get an hour into the work day and get a call from the school nurse indicating that the pod was alarming - POD ERROR. Packed up my work and headed for the school, I figured I would work the rest of the day from home. Pod change #1 complete.

After I switched out the pod and headed home to begin work. About a half hour later, phone rings. Guess what? Pod was alarming - AGAIN! POD ERROR! Good thing I decided to stay and work from home, right?! So, I head back to the school and pod change #2 complete!


By this time the company rep is over-nighting a new PDM (personal diabetes manager) to me. They feel that it is likely
there is a defect with the occlusion setting in the device causing it to alarm and shut down when there really isn't a problem. OK, I can deal. At this point I am just hopeful to have a solution in sight.

Surely we are good now, right? You would bet on it, right? RIGHT??
NAH.... closing in on the end of the school day  and it is alarming again - POD ERROR!

By this point I had just received notice from FedEx that the over-night package had actually reached a fairly-local depot and before I head out the door to pick up the kids from school I call to tell them I would rather pick-up the package rather than wait until the next day for delivery. Easy you would think. But nope! The guy on the phone proceeds to tell me that since the shipper paid for shipping, that package is getting shipped! OK, now, you know by now I am about to lose my cool. I give him the "not so funny laughing" laugh and ask if he is kidding. I mean this is an urgent medical device and I need it now and I am 20 minutes away and the package has MY NAME ON IT and I will come and pick it up! NOPE, he says, "I gotta ship it!" WOW! So help me, I was going to get my hands on that package so I suggest that I have an account with FedEx, can't I call customer care and reroute the delivery to a pick-up? And he is like "oh yeah, I guess that would work."

So, while I am running out the door to pick-up the kids from school (all the while our daughter still is receiving no basal insulin at this point - her numbers were behaving I was rolling the dice on getting that package in time) I was on the phone for a half-hour with Fed-Ex customer care to arrange for the local pick-up. They FINALLY released the local pick-up and we were on our way to the store!

We finally get home and it takes another 20 minutes to re-program the PDM and apply POD #3 for the day!!!

I have to say T1D exhausted me yesterday - but our d-girl? She just went on with her day as if it were a normal day. When she was first diagnosed she took direction from me. I was strong and put on a big smile and told her everything would be alright. I had to be the strong one - and don't get me wrong, I still do. But she has reached an age where I can look at how strong she is and I am proud to admit I look up to her. She has amazing strength and courage. She handles her daily challenges with grace and ease. And sometimes when I feel a bit overwhelmed? She reminds me to be strong. Not everyone can be strong all of the time. But I certainly have found when I have the rare moments of feeling overwhelmed, she puts me at ease.

She reminds me.

Thanks for reading.

Wednesday, August 28, 2013

Birds of a Feather...

So we started out earlier this year with the goal of creating a support group. 

We had no clue how much this vision we had would change our lives. 

In just the few short months since we said the words, "let's see if we can get everyone together for a support group meeting," we have managed to build an amazing network of families and friends that have, now, in fact become part of our own "extended" families. 

Berks T1D Connection became more than just a support group. We found very quickly that there was A LOT of interest, so we decided to move forward (with the help of some A-MAZING friends) to build our own 501(c)(3) non-profit organization to help the T1D families of Berks County. Living with type 1 diabetes is hard... finding help shouldn't be. 

So, here we are with no money in the bank (literally) but we have A LOT of passion and great ideas. Vision for helping the local families that live with (and at times struggle with) type 1 diabetes 24/7/365.

We already held the monthly support group meetings that manage to fill the room, graciously hosted by our local hospital (thank you Reading Health System!) We also had created a closed online support group for our supporters for the daily interaction/questions/conversation in between those meetings. This has been WILDLY successful!

THEN, we started networking and hosting social gatherings. A pool party at the Fightin' Phils, a day at Mt. Gretna Lake, and now we will be hosting a candy-free Halloween-alternative party for the T1D kids of Berks County! It doesn't get any better than that! I am CERTAIN there will be many, many more great things to come!

The most amazing part is that when the kids began coming to the support group meetings most parents reported that there was a good amount of blow-back from their kids. They didn't have interest in coming. NOW, they kids have a GREAT time and can't wait to get together with their group friends. They are learning about new treatment options from each other and improving their health as a result! We have even found that spending time together has lowered stress levels in some of the children and their blood sugar levels have begun improving. GREAT news all around!

The parents AND adult T1D members of the group are benefiting as well. We have had guest speakers in the group from various organizations including the American Diabetes Association and a local nutritionist. Not to mention the pleasure they get from simply having the opportunity to speak with other adults who "get it."

We have big hopes and dreams for our group, supporters, & organization. 

Some things we would like to do:
  • Offer a welcome bag to newly diagnosed families
  • Work with local restaurants to make nutritional information more readily available
  • Create a diabetes resource library for our supporters
  • Create more awareness in the community about type 1 diabetes
  • Host a local T1D camp in Berks County

If you would like to support us in our efforts to make a difference in the lives of the children and families living with type 1 diabetes, please visit our website at www.berkst1dconnection.org or email me at info@berkst1dconnection.org


Here is our mission statement:
Berks T1D Connection is a community-based organization dedicated to improving the lives of all those in Berks County affected by Type 1 Diabetes by providing support, education, advocacy, and awareness.

Tuesday, August 20, 2013

Less Insulin... Imagine That!!

Sorry for my brief absence from blogging friends! We just took some time to settle in from our summer festivities at the shore and get back into a regular routine before heading back to school next week!

And well, we have been on a bit of a roller coaster ride I am a bit embarrassed to admit. I don't know why but I guess any parent of a T1D child hates to admit that any "less than perfect" numbers are anything but a failure on our part. I know, I know - it is not true... but it doesn't FEEL not true.

So, if you have been a loyal reader of my blog, you will know that about a month ago we switched insulin pumps. After living with the Animas Ping for three years (and loving that pump and the freedom of lifestyle it allows after living with MDI, or multiple daily injections, we very much appreciated all the Ping had to offer). Although, from day one we had our difficulties with the Ping. But they were difficulties that were minor in comparison to what we gained so we were willing to overlook.

One such thing would be the sites. From the get-go, we struggled with sites. Everyone talks about how they would change their insulin pump infusion sites ever three days and maybe "cheat" and get an extra day or so more out of them... well... that never worked for us. We got two days out of my daughter's sites. Pretty reliably two days. Almost exactly two days - every time. Which was OK, we were fortunate enough to have the insurance company pay for enough materials for us to change those sites every two days, but still, that turns my little D-girl's tush into a pin cushion! Sometimes we just found that perhaps there was a saturation issue but many times we were backing up with blood. Not pleasant. High blood sugars, occasional bruising of the site. But, STILL in our opinion, better than living with MDI. Freedom!

So, we attend this conference - the Children with Diabetes Friends For Life Conference in Florida this past summer and we were walking around this room where we got to look at and hold ALL of the options out there right now for pump technology. And I was like a kid in a candy store! I mean, really! I was in LOVE!

I was tempted by many a pump rep but my heart went to the Omnipod. We simply could not be pulled away from a tubeless system! I have many times - too many to count - commented about how uncomfortable it must be to constantly have "STUFF" hanging around her waist. Especially when it was hot, like REALLY hot. So, we got a demo pod and slapped it on the back of her arm and she too fell in L-O-V-E! We had the contact card filled out before we left the conference and were hoping to have the new system as soon as they would ship it to us!

All of that being said, we have been living with the the new Omnipod now for several weeks and we are still on Cloud 9! Tubeless is the way to go (for our family)! And we set it up with all of our old settings assuming it would be a smooth transition... WRONG!!

We have been fighting highs and lows non-stop since the transition. Mostly lows. And it took a moment for it to dawn on me. The cannula. The insulin delivery. We are just seeing MUCH BETTER insulin delivery out of this pump than we ever did on the ping (for our daughter). DISCLAIMER - it is different for everyone, this is what we found to be true for us.

Because the Omnipod's cannula is inserted at a 45 degree angle (as opposed to the 90 degree angle of the inset's we were using with the Ping), perhaps we will just be seeing much better results.

1. Since day 1 of Omnipod use - we have been getting the full 3 days out of the pods. WOW! I know it may not seem like much but for us, this is a HUGE deal!

2. We have FINALLY gotten a handle on the basal program. And guess what?! In comparing the Omnipod basal program to the Animas Ping basal program?
Animas - 9.963 total daily dose from basal program
Omnipod - 6.75 total daily dose from basal program
W-O-W is the only way to describe that one!!!

We have managed to back down not only her basal rates, but her I:C ratios and sensitivity factors as well.
Pretty much her entire list of settings got an overhaul with the end result of LESS INSULIN being used.
Great numbers + less insulin = one happy D momma J
...at least until school starts and throws all of our settings out the window! LOL!
But hey, take the victories where you get them, right?

Friday, August 2, 2013

Pod Down! Pod Down!

Well, we have been MOST pleased with our decision to switch to the Omnipod. LOVE, LOVE, LOVE it!

For the most part we have gotten a full 3 days out of her sites (so far)... knock on wood!

She is not tethered to a separate device to carry around her waist.

She can decorate her pods (which in the grand scheme of things, not a big deal - agreed. But a big deal to a 7-year-old who wants to find the silver lining and I am all for it!)

If something goes wrong with the pod, I am not worried about a $6500 piece of medical equipment to replace. We can just replace the pod. 

Speaking of which...

We had some family join us at shore the other day and the girls were so excited to enjoy the rides with relatives. They ran around, played, shopped, ate, and had fun! Great time! And then it happened... doesn't it always seem to happen at the most inopportune times? (like as if there is a "good time?" but it does just always seem to happen at the worst times, doesn't it?!) There we are about to enjoy some Kohr Brothers frozen custard and the blood glucose numbers start climbing. Hmmmm. Well, I think, maybe no big deal. Let's throw some insulin on top of that. And encourage her to finish up "because of course you have been bolused for that!" WOOOWWW! Wrong call this time! I mean, sometimes it is a 50/50 guess and you gotta be wrong sometimes, right?!

Now, let me preface this picture by saying I took this the next morning. I was far too stressed and tired to take it that night.
But, good heavens! Look at the upward slope on that thing! We had reached a point in the frozen custard where I all but snatched it out of her hands and said, "maybe it is OK if you don't finish this." And the number keeps climbing and climbing! And yes, I had replacement pods and insulin with me but we were at the boardwalk, YUCK! Not really the most sanitary environment for site changes. So, we decided to very quickly say our goodnights and walk (run) back to the car and drive back to the campground. 

It is normally about a 10 minute drive. That is, unless you are in a hurry. Unless you get behind the ONE person on EARTH that feels like driving slower than molasses when you need to get somewhere in a hurry! I mean by this point I am about ready to crawl out of my skin because she is in the back seat starting to complain about her belly hurting and being "thirsty to death." UGH! I mean, just AAAGGGHHH!!!! Mama bear was about ready to display some serious road rage if these "Sunday drivers" didn't get out of my way! (I mean, not really, but you know what I mean! LOL!)

And so, we finally make it back to the campground and we get her sufficiently cleaned up and do an "emergency" pod change. And WHEW - this Dexcom (continuous blood glucose monitor) might as well be a blood pressure monitor for me. As that graph quickly came back to normal range, so did I. 

Luckily the "Diabetes Gods" allowed us all to sleep that night as well, as we certainly needed it! 

When I saw that number so quickly and dramatically rising, I just didn't know where it would stop. I was worried. But didn't want to alarm the kids by showing how worried I really was... try to pull that one off! They knew I was concerned but they certainly didn't know how concerned I was. Yes, we would get back and be able to change the site and start infusing insulin again. But when that is your child and she is feeling so poorly and it is YOUR job to fix it (and even if it wasn't your job - meaning that they are grown and it is now their responsibility to care for their diabetes) there is quite a pressure we put on ourselves. Managing type 1 diabetes is hard. But we are up to the challenge. We have good days - and we have great days. We have some bad days too. No one is perfect. Not a single person living with T1D. We all try to do our best. 

Our lesson learned on this one? When going to the boardwalk to go on rides, wear the arm band so the pod doesn't pull loose... 

Wednesday, July 31, 2013

A New Chapter - Omnipod!

We have been using an insulin pump for our daughter for almost 4 years now and have loved every minute of it. The lifestyle the pump affords, in our opinion, (coupled with our Dexcom continuous blood glucose monitoring system) has afforded us the closest to "normal" possible since diagnosis.

That being said, we chose for our first pump the Animas Ping. This was a WONDERFUL first pump and she LOVED it. In fact, now that she is now longer using it, we have to get a display case for it to put in her room! LOL! The ping is small (I have always compared it to carrying a pager) and it comes in different colors so convincing her initially to how cool it was really wasn't too hard because it was PINK! The customer service at Animas was also fantastic! 

But as we were nearing the end of our 4-year-warranty on that pump we began to dream about the other pump options out there. We recently attended the Children With Diabetes Friends For Life Conference where they had an Exhibit Hall and all of the medical device companies were in attendance showing off their stuff! It was awesome. We got to hold and play with the stuff and ask questions of the reps all in one place!

And I kept finding my way back to the Omnipod stand. See, when we were initially going on the pump years ago, this was my first choice. But it was a bigger pod back then - seemed pretty big for her little body - and the doctor's office that we currently went to (Read "Finding the Right Doctor") really discouraged that particular pump for several reasons citing the primary reason is that the basal doses did not come small enough. In any event, they convinced me to look elsewhere. After talking with some friends and doing some research, I settled on the Ping (and changed endo offices!) and we were off to the races!

But here we are faced with this new decision. We have seen one pump but time to stick with it and move on. We really loved the Ping and it is a GREAT pump. No problems with it but WOW, the thought of my little girl not being tethered to a pager-sized device 24-7 was really appealing. Now especially since Omnipod finally came out with their new pods and they are, in fact, smaller and lighter! In the face of all of the other great technology out there, going tubeless really had an alluring draw!

My daughter was TOTALLY in love with the idea. The reps at the conference gave us a test pod to try and she wanted to put it on that day and she wore it for a full 3 days and was upset when it fell off. She loved it! I loved it! It was time to make a change! 

And Omnipod's company (Insulet) makes it tremendously easy to switch. So, WE SWITCHED! It took a couple of weeks to get the insurance information worked out and everything lined up but...
Check it out! It is like Christmas in July! I don't think we have ever been so excited for a package to arrive! We watched that tracking number for 2 days straight!

There are a lot of things that we love about the Omnipod and I will blog about those another day, in the interest of not making this the longest blog ever written. But just know that we are STILL loving the Omnipod - LOVE, LOVE, LOVE! My D-girl is no longer wearing special clothing to hold her pump around her waist. She looks and feels COMFORTABLE! She is HAPPY! And as a mom, that makes me happy :-)

Thanks for reading!

Sunday, July 21, 2013

The Soda That Should Have Been

So, a few weeks ago we are out to dinner with family at a local chain restaurant. Good food but notorious for the sloooow service. Slow... but usually not "bad." But that night was the exception.

When living with type 1 diabetes (or having a T1D child) you quickly become acclimated with the pitfalls of dining out. First of all, most restaurants can't tell you the nutritional value of the food you are consuming (yikes, I know, right?!) requiring type 1 diabetes to GUESS the carbs in their food (easy? you think? not so much!) But you would think that a simple request could be followed. Now, I realize that the waitress could have been having a bad day and I fully recognize that people make mistakes. But when in the food service industry, mistakes can cause very severe health repercussions so mistakes are no so simple.

So, when I order a diet soda for my diabetic daughter and have found that I have to make it my regular routine to double check to make sure the person serving the food 1. remembered or 2. simply didn't screw up. I was most disappointed to find that this time.... (insert drum roll)
Yep, you guessed it! 

A REGULAR cola (GASP!!!), when we ordered a DIET!
UGH. So, if I had been too busy to taste test this soda (which would have been easy considering we had a grand total of 5 kids at our table all talking at the same time!) We would have been fighting highs blood sugar levels that would make me want to fall off of my chair! AND, the best part was when we told the waitress about the mistake, we didn't even get an apology (clearly she didn't realize the magnitude of her mistake!)

I was busy patting myself of the back and giving myself the "mommy of the year" award for deftly catching the rogue soda before it hit my D-girl's lips. But I celebrate my own victory because sometimes it is hard to be the mom of a T1D because THOSE victories are AWESOME victories but no one but other T1Ds or T1D parents seem to understand or fully appreciate the real victory in these situations. As a T1D parent, we have victories and days that, well, aren't the greatest, but at the end of the day we know we have accomplished amazing things for our kids. 

Thanks for reading! 

Tuesday, July 16, 2013

First Time at CWD FFL

Our experience at the Children With Diabetes Friends For Life Conference leaves me short on words. I have friends that attended the conference in the past and suggested we give the conference a try and first let me say, you can't go wrong with any conference held at Walt Disney World in Florida! But add in over 3000 people that live and understand the type 1 diabetes lifestyle, you can't go wrong with the description I heard flying around down there - it was like "coming home."

We were immediately greeted with Disney hospitality which is always something our family can get used to in a hurry! We walk into the registration area and found poster board after poster board of this huge, awesome collage that a volunteer had put together of the type 1s that attend. We had no trouble at all finding the picture we had submitted of the twins (although only one of the girls is type 1, we didn't want our "type awesome" to feel left out).

Upon registering, everyone receives conference bracelets. Green for the type 1s and orange for the type awesomes. This is a way for the conference staff to identify the diabetics on-site if there were an urgent medical emergency, but talk about the sense of belonging it creates for those diabetics to come to a conference to see all of those green bracelets. When they attend school, they may be the only type 1 diabetic. Or perhaps there are one or two more in their school. But at CWD FFL, they are surrounded by type 1s and there is an instant friendship. They can see and feel that they are not alone. And the T1D siblings also received some "sibling" time and our type awesome enjoyed that time the most!




We were able to meet up with some friends we have talked with online but had never met and also those that we had met maybe only once or twice before. We also spent time with friends from home that were also in attendance. 


We also had the opportunity to meet some 
exciting new friends
And, of course, there was Coco the monkey! 
Disney's new character with type 1 diabetes!

There was an amazing exhibit hall on-site where vendors set up and made themselves available to discuss their products. Many non-profits and medical organizations were also present and made for a very exciting blend of vendors to visit. They all had exciting stuff to entertain the kids which was fantastic because it allowed us parents the chance to speak with the vendors!

The most exciting part for us would be that we were due for choosing a new pump come next March. So, this was the perfect time for us to be scoping out all of the latest and greatest technology. We visited each of the companies and fell head over heels in love with going tubeless on the Omnipod. We are jumping the gun on our new pump purchase and going ahead with the Omnipod now. We are waiting for insurance company approval now! So, keep your fingers crossed for us!



Our D-girl is most excited at the thought of "decorating" her pods. She is rather artistic after all. Here is a picture of her "demo pod." They gave us one to try out while we were there. It was not filled with insulin. We just slapped it on and she wore it around and tried out the feel of it. She really enjoyed not being tethered to a pump device by a tube. Not carrying something around all of the time. This we would just attach and forget about it. NICE! We talked to several parents at the conference who made the switch and loved it.

You can see how the pod lends itself for decorating. She is already making plans for how she will decorate each pod with colorful colors and jewels!

I know, I know... the stuff we get excited about, right?! Well, it is quite exciting for us J
Thanks for listening!

And here is a little picture to let you know what we did with our spare time in Disney! Having fun, of course!



Friday, July 5, 2013

POOL VICTORY!

WE DID IT! WE DID IT!

Last year we declared defeat and we actually took off the CGM (continuous blood glucose monitor for the summer) as we were having such a difficult time keeping the sensor in place on the skin and it was not worth stressing over losing the transmitter and the constant battle of trying to keep the tape on our D-girl's skin. 

This year we faced the CGM sensor with renewed determination. If you are a loyal reader of my blog, you know that we 100% believe in the effectiveness of this technology to help better manage type 1 diabetes. I should say that it has helped us a great deal anyway. And with the new Dexcom G4 Platinum  release this year and the fantastic new features (like increased accuracy and range on the receiver so that I can actually sleep with the receive on MY nightstand) I simply was unwilling to give up the CGM for the summer. 

A few days ago I wrote about our first experience with the pool. FAILURE. Take a read if you haven't already. Water is our Friend? But anyone that knows me know I am a pretty determined person. There HAS to be a way to keep this sensor on in the water (for extended periods of time). Note: we do not have issues keeping it on for daily showering, etc. But summer fun has always proven to be a problem. The POOL is a must for any kid in the summer and how on EARTH could we keep this thing on?? Everything we have tried resulted in failure - or at least not the greatest results. 

BUT - we have found the answer!!! And I will let the pictures tell our story!
First let me say that after my last blog about our pool failure, we had a lot of great suggestions about tapes and adhesives. And we first started out with a combination of these under what I am about to show you. 

Here is my disclaimer: I am not a doctor and I am not a rep for Dexcom. This is simply what we found to work and for the FIRST TIME EVER - not only did we have a marginal victory - we scored a HOME RUN!!!

Step 1. When applying the CGM sensor to the skin for the first time. Peel back the manufacturer's tape and apply some Mastisol with a Q-Tip (be sure to avoid the spot where the actual probe goes under the skin). Then apply sensor as you regularly would any other time. 

Step 2. We then took another Q-Tip and applied Mastisol directly to the skin around the sensor. Meaning over top of the sensor sticker we just applied. Then we applied a layer of Opsite Flexifix. NOW, that Opsite Flexifix should not be going anywhere (hopefully, right?!)

Then we got to thinking after seeing something in a junk-store on the boardwalk that jogged a memory about when you go to give blood or get blood taken and the nurses place that stuff around your arm. You know, that stretchy stuff that sticks to itself. Hmmmm - now THERE'S and idea! So, my parents were like, you know you can buy that stuff at the local drug stores, right? And so that was our next stop and indeed we found what we were looking for! See below! They sell all different sizes but we opted for the larger roll so that we could cover the entire CGM site without having to wrap it several times around the arm. 

THEN, just to be on the safe side! We applied this pump band that we had purchased from pumpwear.com. We had to special order the size because her arm is so small but they were fantastic about getting the right measurements and making it happen for us!

And with ALL OF THIS, we were ready to hit the pool! CRAZY I know but if you knew 1. how much she gets upset when we have to replace the sensor, 2. how much these things cost (thank heavens for insurance!) and 3. how valuable the information is so we just are unwilling to go without anymore - you would understand the extraordinary measures. It is worth it. 

And did it pay off?



WOULD YOU LOOK AT THAT! For the first time ever, we were able to swim for HOURS and not worry about the sensor tape falling off. It didn't even BUDGE! You gotta know I was doing a happy dance when we pulled all of the stuff away and this is what I found! 

SO, please take from this what you will and I hope it helps someone else! Because of all of the money I have spent trying to find the perfect solution to the sensor dilemma in the summer months, I believe we have found OUR answer! 

GOOD LUCK AND HAPPY SWIMMING!

Sunday, June 30, 2013

The Water is our Friend?

We LOVE summer! 
The summer sun, the warm weather... and everything that goes along with it!

I have mentioned many times in my blog how our family greatly appreciates the technology that makes our lives with Type 1 Diabetes just a little easier. That insulin pump coupled with the CGM (continuous blood glucose monitor) certainly brings some freedom and normalcy back into our lives after living with MDI (multiple daily injections) for a few years. 

That being said, the technology comes with it's own set of complications. 

Going to the pool is a perfect example. Trying to keep a medical device TAPED to your body while submerged in chlorine water for a few hours a day sure presents challenges. Because the tape that comes with the device(s) really just wants to peel away and pop off after about an hour in the water. Not so great if you plan on doing a lot of swimming. 

Here is our first FAIL in the swimming pool...

Not pretty. 

My daughter reluctantly came out of the pool a little sooner than she would have liked to save the sensor, as the tape (not only the Opsite Flexifix around it but the sensor tape itself) was all but falling off. And in the interest of not having to replace a sensor that afternoon, she opted for shortening her pool time (which she really did not want to do but she chose the lesser of two evils). 

We were able to save this sensor. This is a picture of what it looked like after we dried it off and tried to just smooth the edges back down to her skin and as luck would have it, some of it re-adhered (so just imagine what it looked like when we were still in the pool - YIKES!). We then later applied a 2nd layer of Opsite Flexifix (which personally I have found I really like for any other time of year - "dry conditions." Works like a charm and even holds up to daily showers. But not so great against the pool. Pool - 1, Us - 0.

So, anyway, I am a part of this MOST AWESOME local support group and so I threw out the question. What on EARTH does everyone else do to keep their stuff on in the water?? And I got some really great suggestions. So, here is ROUND 2!
 
And yes, I know, I may have gone a little overboard on the tape, but come on. If you saw my little D-girl's reaction every time I had to put this sucker on, you would err on the side of caution too!

This try, thanks to my AWESOME Berks T1D Connection peeps is Mastisol (I hear this Mastisol is some serious stuff!) applied on the tape BEFORE applied on the skin. Then a second layer of tape over top of the sensor tape of Hypafix

We will test it out this week. Wish us luck!

Thursday, June 20, 2013

The Caregivers

This week our awesome Berks T1D Connection local support group dug into "caregiver concerns." What a great topic!

We had a full house of parents, grandparents, and friends of our type 1s and it is amazing how when you walk into a room with this group you instantly all become family. There is something about living the day-to-day of a 24/7 "disease" (and I put that in quotes because I really do hate that word!) that bonds people together. 

There were really universal issues discussed. 
Babysitting. It is difficult for parents of T1D kids to get away because there are not many out there that know how to care for a T1D child, or many willing to learn and take on that responsibility. Family members are often willing but have a good deal of anxiety over the responsibility. Understandable. But so goes our lives. We need to keep going and power through the fear. 

One of the projects our new organization would like to work on would be to step up educational efforts. Berks T1D Connection not only wants to raise T1D awareness in our community, but we would love to offer educational support for our T1D families and extended support systems. The goal would be to build stronger foundations for the family units. 

Perceptions of others. The thoughts of others impact our T1D kids and us as parents every day. Even adults living with T1D live with the perceptions of "oh, I'm sorry, should I not eat this in front of you?" And in my opinion, this is a really hard one. They don't know. I am sure before my life became the life of a T1D parent, I would have had no clue what type 1 diabetes was, what it meant to have it, what a type 1 diabetic could or could not eat, etc. Not that it makes it any easier for a Type 1 who has someone who hides from them to eat goodies. 

So, another goal of Berks T1D Connection will be to increase public awareness. Yes, we are a small start-up non-profit organization, but we have passion and our goal is to make a difference in our community and with social media we believe there is nothing we can't accomplish :-)

But the cool thing about this support group was it gave the family members that don't deal with the T1D on a daily basis to ask questions of the group. Questions as simple as "how many times per day do you test?" Our caregivers are a part of who we are as a Type 1 family. They help us in ways they don't even understand. And a caregiver can even be a friend or a roommate that knows the symptoms of highs and lows and will watch out for our T1Ds for us when we can't be there. We are, in fact, one big Type 1 Village and we are thankful for all of our Type 1s and our caregivers (or Type Awesome(s) as I would like to call them!)

We even have some AMAZING teens in our group. I think they are the coolest people sitting in the room. I can't wait to hear more about their insights moving forward!

My lesson for the day? There is definitely a reason that birds of a feather flock together... because it is AWESOME!!! We have all found a way to find collective strength simply by being together. And we WILL make a difference in our community.


Sunday, June 16, 2013

Surprising Self-Awareness

This past weekend was our local Relay For Life event (for the American Cancer Society). We participate each year because my mom is a cancer survivor as well as other family members. We LOVE the event and strongly encourage anyone to get involved if you can in your local community (www.relayforlife.org)

This was the first year that I felt comfortable enough to have my husband drop the girls off at the event and he could go back to work. I stay the full 24-hours (and then some - I have always served on the planning committee and had even previously chaired our local event). So, in the past I was reluctant to also have the kids on-site without my husband there to take responsibility for them because I had other commitments day of event but this year was different. They were old enough and I had enough time to spend with them and I really enjoyed the experience!

But, of course, our old pal - Type 1 Diabetes felt the need to tag along and play a part in the festivities. 

The girls were actually planning to stay overnight with me. Yeah, a little young. But they had some serious fun and they had some friends there and they are some hard-core tough girls so I knew they could handle it... and then...

This is a view of how our evening and night went. 

LOW! LOW! LOW!
No matter what I did, I could not get that darn blood sugar up!!! GRRRRR!!!!
Drasticly decreased temp basal rates, glucose tablets, food... nothing. I mean, what the heck?!

And, of course, meanwhile, there are people everywhere having fun and goofing off and the DJ is doing his thing. I am trying to put my Type Awesome to sleep a few tents down and she can't sleep (UGH). And I am realizing what a terrible idea all of this was - now all I have to do is convince THEM of that and I can take them home. But they are insisting they want to stay. And given the cause I was trying to be sympathetic to their interest. 

BUT, one way or another, we were going home. 

What really amazed me about this whole experience was the surprising self-awareness I saw in my little 7-year-old diabetic. I mean, I am not talking about her recognition of the fact that she was low. I am talking about her concern for others. I am talking about her concern for herself and her health. 

When I left the house early that morning and later when my husband dropped them off, I never expected they would be interested in spending the night so I was in no way prepared for them to sleep. I had no blankets or chairs for them to sleep. We had an invite from their friends to sleep in the "kids tent" a few tents over which our Type Awesome was more than willing to do, but my T1D was reluctant. I could see it in her face. And I knew exactly why. The thought? "Who would hear my CGM if they are all sleeping? Who will tell my Mommy if I go low or high when I am sleeping?" and so she said she wanted to sleep in our tent. I had one chair that I was planning to sleep on and I offered it to her. But she kept going lower and lower and that is when I pulled the plug and packed up our stuff and said "time to go!"

I couldn't just take her home and drop her off because again I saw concern in her face. She knows that I am the one that wakes at the CGM alarm. I am the one that monitors her BG numbers overnight. My husband is a pretty heavy sleeper and she knows it and I was surprised at her awareness and concern for herself as she is also a heavy sleeper. She will not hear the alarm and wake up if it goes off in the night. That is MY job. One I am more than happy to take on. 

So, for the first time in 6 years, I didn't stay the full 24-hours of the Relay For Life but the priority was her health. I brought her home and they showered and got into bed and it took quite some time to get that number up and YIKES then we rebounded with a vengance at about 5am. 

You know, I knew I was "jinxing" myself when I wrote that blog about having a GREAT A1C...
LOL