Twins Always Take Care of Each Other!

Friday, March 29, 2013

No One Invited You to Dinner Mr. High BG

So, it is FINALLY the weekend and looking forward to getting together with some friends for dinner. All looked good and we were rushing out the door and were on target to have a fun night. iPods charged for "back-up" entertainment - I was impressed - I was thinking ahead! The kids even brought headphones so they could hear what they were working on. 

THEN...
Just about as soon as we arrive at the restaurant, the blood glucose numbers start climbing... CGM alarming 

And climbing... alarming some more...

And just when I think we are going to have a REAL problem - wait a minute... it levels out and starts going down a bit....

Wait... no... not so much... there it goes again! ALARMS and more ALARMS (at least I had it set on vibrate!)

So, I spent the whole night pressing a button on the CGM just waiting for that arrow to point the direction I was really almost WILLING it to go at that point. 

There wasn't any blood backed up into the site - yep, I checked. Running low on insulin? Nope, 40 units left (which for us means a pretty new site - maybe only a day into this site)! What on Earth is going on? No, tube not tangled or twisted. Hmmmmm.... So, we decided to cut the evening a little short (yes, we could have decided to do a site change in the restaurant but we weren't too far from home and it was getting a little later so we decided to excuse ourselves). 

We get home and change the infusion site and what do we find??? The culprit!!!!

That's right! Dirty, rotten - no good kinked infusion site! Kinked infusion site = little to no insulin delivery. Now, how in the world this happens under the skin I guarantee no T1D or doc will ever be able to tell you. Let's just call it a fluke. And I am sure all T1D friends will tell you that they manage to happen at the most inconvenient times. Perfect example - couldn't have happened while we were home watching a movie. Nah, wait until we were out with a crowd full of friends at a busy restaurant. Or some other good examples of when we have seen this? On the boardwalk in the summer. When the bus is literally driving down our street to pick the kids up for school! HA! Never a dull moment :-)

But at least we have found the problem and are well on our way to getting those numbers back under control! 

Tuesday, March 26, 2013

It's a Twin Thing

I think a lot about how type 1 diabetes impacts our family. 

I have a particular concern about how it impacts her twin sister. We really do our best to lead a "normal" life but the bottom line is that T1D is a member of our family. It eats with us, it sleeps with us, it vacations with us... you get the picture. 

We have gone out of our way to make decisions about food, or any decision really, about parenting and not about T1D (as much as possible). And on those occasions when it wasn't possible, we have covered our tracks the best we could. We have made changes to our overall household lifestyle rather than singling out our special D-girl. 

And all seemed well on the home-front since her diagnosis (age 3) until now but every once in a while we get a comment from her sister like, "why does everything have to be about diabetes." Wow! Where did that come from?? I suppose it was only a matter of time, she has been a very good sport and a very supportive sister so far. And still is, although, we have to realize that it does and will affect her life as the SIBLING of a child living with type 1 diabetes. 

We don't feel that we "fuss" over diabetes or pay undue attention for the sake of paying attention. We try to be fair. 

But we are advocates. We are fundraisers. So, in that respect, we spend time on diabetes. And in talking with her sister, she agrees that we should do this - and never give it up -  because she too wishes for a cure. 

The act of changing out insulin pump sites and CGM sites requires our time and attention as well. 

You know, I think, I just feel a little trapped between a rock and a hard place. I suppose the bottom line is diabetes is just a drag and there isn't a good way to deal with it sometimes. We do our best and that is all we can do. So, we stay positive and keep on keepin' on!

Thursday, March 21, 2013

More Art Than Science

As previously mentioned, we have moved on from our first pediatric endocrinologist and have found a doc that is very attentive to our needs - both physically and emotionally. But one phrase that I remember hearing from a nurse at our first Peds Endo was "managing blood glucose levels is more art than science" and you know, I can't think of a better way to say it. 

After obsessing over blood glucose (BG) levels for four years and trying to retain tight BG control, it really does ring true that there is an element of "art" to managing these levels. You can do everything right and end up with some pretty awful numbers sometimes and yet other times you can take a wild guess at the carbs for meal/snack/drink while eating out and end up right on target. 

We are going to make mistakes and we have to learn to do our best and forgive what we can. Strive for tight BG control, but allow for those moments or even days when we just seem to have no control over those numbers. As a parent, it is very difficult to do because we worry about what the long-term complications from those high or low numbers might be and that is a concern not to be ignored. But I truly believe that if we are being responsible and maintaining a respectable hbA1c, then we need to recognize and remember that those BG numbers are not ALWAYS a direct result of our actions. So many factors are at play - hormones, stress, illness, exercise, the elements (excessive heat), etc.

We, as parents, always shoulder so much responsibility. And we are continuously learning. If only there were a "right and wrong" answer when it comes to type 1 diabetes. There rarely is, only educated guesses based on experience. And every person with T1D is different, and they react differently to different foods, stimuli, insulin dosages, etc. There just is not a "right or wrong" answer. How we wish there could be... it would certainly allow for a little more science and a little less art in what we do every day. 

Maybe someday...but for now we will still be thankful for the technology we do have to treat T1D and wait on the edge of our seats for the exciting new technology that is to come that will make life for our kids a little safer and a little easier. 

Sunday, March 17, 2013

Everything But The Kitchen Sink

As a T1 parent, often you feel like you have to have to be "prepared for anything at any moment." I am sure not all T1 parents are like this, but I would wager there are a lot more out there like me than not. So, we search high and low for the most efficient way to carry everything we need (see blog post "pretty things" from February 2013). 



In our case we look for the perfect combination of functionality and style! Because in that little beauty we carry: meter, lancing device and replacement lancets, test strips, glucose tablets AND a protein snack, all supplies necessary to change her insulin pump site (IV prep pad, alcohol swab, insulin cartridge, infusion set, and insulin bottle), emergency glucagon kit, replacement batteries for the pump AND meter, and a syringe. WHEW! Bet you would think this thing would be bulging, huh? But it isn't so! And it really isn't that heavy either! All in the organization! 
But what I really find lacking when we go out would be all of the "comforts of home" that have made made managing diabetes easier. The simple things that most people overlook when they eat out are what cause the most stress. The size of the cup (therefore requiring a liquid measuring cup). The size of the portions (therefore requiring solids measuring cups). Or this is the REAL biggie I find it a hardship to live without - my food scale! I could kiss the person that invented the digital NUTRITION food scale!! This bad boy comes with the "nutritional information" for approximately 2000 foods pre-programmed into the scale and a guidebook to give you the code to enter for each food. As you want to weigh out each of these foods you turn it on, enter the code for the food item, then place the food onto the scale and voila! The nutrition label pops up for THAT food that you have on the scale! TRUST ME - an expert in math I am not so this little scale has become my best friend! 
(Please know I do not work for or represent Amazon or the company that sells this scale - nor did I receive the scale for free) But this is the scale I found and we love it - Digital Nutrition Food Scale. In fact, we found it so handy, we bought an extra one to give to the school district to aid them in determining carbs at school for our daughter and any other diabetic children at the school! 




So, while I have considered taking the scale with me, I have drawn the line at doing this. I will take it with us on long trips away from home but it stays home for meals out. While I would love to KNOW what those carbs are in that meal at the restaurant, I am going to guess and fix it later because while we are open and honest with others about T1D in an effort to raise awareness, there is only so much stuff you can lug along with you. (...although I will admit to keeping a set of collapsible measuring cups in my car in a sealed baggie - for emergency purposes, of course! You never know!!!) 

With the aid of the insulin pump and the continuous blood glucose monitor (CGM), we are able to fairly closely monitor those numbers and fix the highs and lows that result from the "guesses" we chuck at a restaurant meal. I suppose the hardest part is learning not to be so hard on ourselves. 

Tuesday, March 12, 2013

Easter Bunny...Ho, Ho, Ho!

And here we are at yet another holiday celebrating with... wait for it...YEP! You guessed it! CANDY! I know that we all have a sweet tooth and I am guilty of it as much as the next person but you never realize just how much we dive into the sweet stuff until you have a diabetic child in the house. Then you try to avoid it as much as possible. 

Now, before everyone starts jumping all over me, please note, I said "as much as possible." My sweet little D girl wears an insulin pump so we can, from time to time, indulge in the goodies that we all enjoy. But living the "diabetic lifestyle," we have become accustomed to searching for the healthier snacks on the shelves. It is not like our lives are devoid of candy or ice cream. We just choose to enjoy them on special occasions. 

And one could argue that a holiday such as Halloween, Valentines or Easter would be a special occasion. Although, I have found that we tend to get too many sweets and they just go to waste. So, here we are staring down Easter and I am searching for the coolest ideas for small toys, spring/summer toys, outside fun-type stuff to replace the candy (which we have done since her diagnosis 4 years ago). It is almost a mini-Christmas, only with that annoying plastic Easter basket grass :-)

Do the kids mind? NOPE! We even swiped the idea from my sister-in-law to tie a ribbon around each little gift (choosing each of their favorite colors) and then hiding all of the gifts throughout the house and making it a hunt on Easter morning, which they thoroughly enjoy! 

A little more expensive? Yep! But we have tried to go out of our way to avoid making her feel "bad" about or "singled out" because of her diabetes and simply telling her that they both can't have candy because she has diabetes just doesn't work for me. And it isn't only about her - her sister as well. She shouldn't feel as though she "missed out" on anything because of a medical diagnosis in the family. So, we replace it with some other small trinkets. (And they don't miss the candy one bit.)

So, off to shop, shop, shop... because Easter Bunny Claus is comin' to town!

Friday, March 8, 2013

Finding the Right Doctor

You know, we have changed doctors once since our little D girl has been diagnosed. We just didn't feel comfortable at the first practice. They were cold, snippy, judgmental, not particularly understanding - all the things you DON'T want to (or need to) put up with when your family's life takes this monumental shift to "living the D life." Let me tell you, it wasn't an easy decision to make the switch. At that time we were only two years into the diagnosis and still gaining some confidence and at that time still on MDI (multiple daily injections) but hoping to get on the insulin pump. 

This is what ultimately led to our nudge in the direction of a new doctor. This old practice just seemed fairly unwilling to help us get onto the insulin pump and quite honestly made us and others (we have heard from others that have left that practice) feel incompetent and unable to handle the pump. I knew we were ready. I am a fairly well educated person and I consider myself to be extraordinarily particular about my D girl's diabetes care. Although, proving your "worth" on MDI is a pretty difficult thing to do (in my honest opinion). 

So, with some encouragement, we made the switch to a very friendly practice. The kind of place that gives you the warm and fuzzies. I don't know about you, but I personally LOVE the warm and fuzzies. Talk about bedside manor! After coming from a place where you would get frustrated trying to navigate the automated phone system trying to get a live person that half the time you would just hung up, we were in heaven when in the first phone call to this new practice we call in and a LIVE PERSON answered the phone!!! IMAGINE THAT!! And wait! It gets better! When I explained what was going on (I imagine I had a bit of frustration and desperation in my voice), they put the actual nurse practitioner on the phone! Now, remember, my daughter is not yet a patient but I get the nurse practitioner on the first phone call and she spoke to me for 45 minutes! OK, so I realize there must have been an element of really great timing on this for her to be available to speak to me for this long but for her simply to be willing to take the time if she had the time was AMAZING to me and I was SOLD! Was this our new practice??? You bet! I had a few others on my list to call but after that call I threw the list away and we have been a very happy patient of this practice ever since that phone call. 

Don't be satisfied with a doctor that doesn't treat you right. 

I have met and befriended many doctors in our D-journey and do you know what? I have found out that they are people just like you and me. Deserving of our respect? You betcha! But you get one that treats you poorly or treats you like you are less than they are or makes you feel uncomfortable to visit because you feel you are being "judged?" Then run for the hills and find a doctor that treats you properly.

I view our endocrinologist as our partner. I treat her with respect and do not expect unrealistic things of her and I expect the same. And it works out wonderfully for us. We actually look forward to our visits. 

So, good luck with your doctor and be sure to appreciate the heck out of the great doctors that are taking that extra step to make your life easier and better.... and for the docs that aren't? Well, maybe it is time to move on!

Monday, March 4, 2013

Appreciate the Good Times

We have to remind ourselves to appreciate the good times. 

Too often we find ourselves stressing over highs, lows, A1Cs, 504 plans, insurance company battles, worries over our child's mental fall-out over T1D issues, and the fall-out for their siblings, and the list goes on and on. 

But you know what? Every now and then, we get a reprieve. When all is quiet on the diabetes front and the blood glucose numbers are relatively cooperative, all equipment is functioning and our kids seem happy and at peace with their lives. 

And we remember that we too can have a "normal" life. Sometimes. Normal to us is much different than many other families, but we are thankful anyway for what we have. Because although T1D came to live at our home, we still have healthy children. Although, we have special considerations and fears, we also have a special appreciation for so many of the little things that many people take for granted. 

We hope for a cure each and every day. Until that amazing day comes, and I believe we could see it in our lifetime, we will find the miracles in every day. We will have our challenges and we will have our triumphs, but we will always - always - be stronger for what we have experienced. 



Friday, March 1, 2013

The Fear Factor

So, I am having dinner tonight and talking with my sister and we were discussing the "fear factor" of having a T1D child. If you have a diabetic child, you know what I am talking about. If you don't, let me share a little bit of what this is about. 

We all know people fear what they don't understand. And in this case, I suppose I can understand their fear. It just doesn't make it any easier for a T1D child... or the parent of that child. 

We can't do sleep overs - at her friends' houses. Well, and by default, neither of the girls can do a sleep over. How could I allow one to have sleep over parties with their friends while my T1 girl sits at home. Not going to happen. So, they both stay home. Even if a parent of one of their friends would be willing to accept that responsibility, I would not be willing to relinquish that responsibility. I can barely accept simply letting my husband take responsibility for it if I will not be home overnight for some reason. It is a HUGE responsibility to care for a T1D child overnight. And rightfully so, people who are not that child's parents fear that responsibility. (parents fear that responsibility too but that is a whooooole separate blog for a later time!) It is understandable but try explaining that to a young girl that just wants to have a sleep over party with her friends. Well, I foresee a whole lot of sleep overs at our house in our future! (I sure hope they will all think we are the "cool parents" because this is where they will all be hanging out!)

Birthday parties. Can't really ever drop off the kids for a birthday party either. We always have to be there. For the entire party. This one might ease up as she gets older and can better take responsibility for complete care (independence with carb counting, knowing when to correct highs, etc. - she can currently bolus if we give her the carbs and if prompted will correct a high or a low, but not yet at a place where she could take full responsibility for these tasks), but right now we are still the parents that are lurking at the birthday parties to watch over the BG levels and to bolus for the meal and cake. Fun for us? Not really. Fun for her? Probably not since we are usually the only parents tagging along. 

Even just a day out with family or friends - sans parents - takes on a whole new level of responsibility. Few are willing to take on the responsibility to learn what is involved because they fear what could go wrong. I can understand and respect that. I would probably have had the same reaction if I wasn't dropped into the situation myself. 

But the goal of this blog is to hopefully break through the fear a little bit. Our children are not made of kryptonite. With them comes an awesome responsibility, but it is worth it to learn about them because THEY are worth it. T1D is scary sometimes but imagine it through the eyes of that child. We, meaning all adults, should at a minimum offer our support by learning more about them.

In our family, we will do what we can to make every day fun, regardless of our "restrictions." Because every day is a gift...and we aren't about to waste it!