Twins Always Take Care of Each Other!

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



Wednesday, June 12, 2013

A Great Hgb A1C

So, us Type 1 Diabetic families live our judgement by numbers. We LIVE for the numbers. As much as we try to fool ourselves that it isn't all about the numbers, we will absolutely be disappointed if those numbers don't end up where we would like them to be. We beat ourselves up over bad numbers but on the flip side, we celebrate the great numbers!

Yesterday we had our 3 month check-up with the pediatric endocrinologist (which ended up being more like 4 months). We felt pretty good going in to this appointment. The numbers have been agreeing with us - for the most part - thanks mostly to our trusty Continuous Blood Glucose Monitor (CGM). Have I mentioned lately how much we could NOT live without this technology?! 

So, we go in for the appointment and my little diabetic gets her height and weight taken (all great) and THEN...the dreaded finger stick for the A1C test! 

For those of you who may not be familiar with this test, CLICK HERE for a great explanation by the American Diabetes Association. To swipe a passage from that page (just in case you don't click over to read about it): 

A1C: How Does it Work?

Hemoglobin, a protein that links up with sugars such as glucose, is found inside red blood cells. Its job is to carry oxygen from the lungs to all the cells of the body.
When diabetes is uncontrolled, you end up with too much glucose in the bloodstream. This extra glucose enters your red blood cells and links up (or glycates) with molecules of hemoglobin. The more excess glucose in your blood, the more hemoglobin gets glycated. By measuring the percentage of A1C in the blood, you get an overview of your average blood glucose control for the past few months.

Pretty cool, huh?
So, this is every T1D's big stressful moment to tell us how we have been doing for the past 3 months. 

Our last A1C was a 7.4 which for a 7-year-old was considered "good" but I want GREAT! And BAM - we got it yesterday! 6.8! Which tells us her average blood glucose levels were ranging 140-150 which is OUTSTANDING for her age. 



I asked our CRNP for a copy of our A1C record sheet and to look at that sheet really tells a story. 

(at diagnosis she was 10.7 in case you were curious- that was February 2009)
June 2009 - 8.7 (was on MDI "multiple daily injections")
December 2009 - 7.8 yeah - getting our feet wet on the injections! And we were still in the "honeymoon" so there was still some insulin running around in there helping us out!

Then in February 2011- 8.6 and one month later she gets the insulin pump!
And in May of 2011 her A1C comes down to 7.5!

And for the next year we hovered in the 7s and 8s because while the pump can do great things, IN MY OPINION, it is only HALF of the best possible and necessary equipment to treat my daughter's T1D. Even on the pump, you are only testing blood glucose levels only at meal times or when you suspect a problem. Not enough data!

NOW - take a look at what happens in spring of 2012!

We go from mid-7s and 8s down to 6.5 in April 2012

And August 2012 7.1 and January 2013 7.4 (don't ask - we were struggling with some overnight basal rates we just could not get straightened out! LOL!)

And now a stellar 6.8 :-) We will gladly celebrate our victory (even if it only lasts 3 months until the next visit)!

All of that being said, I don't think we could manage without our insulin pump or our CGM. The insulin pump gives us freedom to have our lifestyle back and lead as "normal" a life as possible. The CGM allows us to catch those highs and lows FASTER and treat appropriately. Because the cool thing about that 6.8? We achieved it with using LESS insulin! How fantastic is that!! 

So, now that I am done tooting our horns... I can admit that after that fantastic day we all went to bed and her site went bad and she saw a 480 at 2am :-( 
Gotta love Type 1 Diabetes... NOT!
But I am hanging onto that victory!!! One bad site can't get me down :-)


Thursday, June 6, 2013

I Shouldn't Have Looked

Maybe sometimes you are better off not knowing.

So, today I have a graduation ceremony for a core graduate program I attended this year. So, I am kinda excited about it. I am, of course, as with any day, hoping my little diabetic's blood glucose numbers cooperate. 

Her fasting blood glucose number was great. And I should have left well enough alone. But just as she was walking out the door to get on the bus I took one last peek at the CGM and sure enough it is 174 with the slight arrow trending upward. 

Hmmmmmm.....

Well, all I can do is hope for the best. I have 110% faith in her school nurse to properly manage any situation as I will be a bit tied up today. 

Maybe it will be OK. Maybe it was just the post-breakfast spike. Maybe? I hope. 
In all likelihood it will be OK but that is not going to stop me from worrying about it all day. And by the end of the day I will find out everything was fine and I will have spent the entire day worrying for nothing.

It would be so nice if I could take the type 1 diabetes for her and then I wouldn't have to worry about this all day long. I would be more than happy to carry this burden for her. In fact, I would welcome it. Then I would worry less, be happy for my healthy children and know that I could monitor glucose levels at all times to satisfy my almost obsessive "need to know!"

Keep your fingers crossed for us today that all works out!

Sunday, June 2, 2013

The Summer Weather Strikes

So, we have been patiently (NOT!) waiting for the warm (HOT!) weather to arrive and we finally got our wish (YAAAH!)

Don't get me wrong, I am definitely not complaining. I want the nice weather. 

The nice weather, however, brings some complications. Well, not really complications - more challenges I would say. 

For example, yesterday. In the 90s. Beautiful sunny day. HOT! We went to support a local fundraiser event outdoors and the kids had to eat something. They didn't want to, but they had to eat something. It was lunch time, it had been a while since breakfast. It was hot. They needed energy to keep going. So, we agree on something small. 

Of course, my Type Awesome willingly eats her small lunch. My T1D? Well, that is another story. We bolus (dose her insulin) and she takes one bite and tells us she really doesn't want to eat it. Now, she is a picky eater to begin with (yeah, that is an entire separate blog I could write "the drama of the T1D picky eater") but it was HOT (did I mention how HOT it was?!) so chances were she was going to be struggling to keep those numbers up to begin with since we would be doing some walking and now I bolused her for food that she didn't appear to want to eat (unless I was prepared to forcibly cram it down her throat - CHILL folks - it is not like I would really do that!). UGH. 

So, what do we do??? You got it! Bribery! There was a water ice stand and an ice cream truck sitting right next to us and the only way I was going to get her to finish that small lunch was the promise of something cold and yummy! Usually this is a no-brainer for her. She would jump at the opportunity for a cold treat but even this was a hard sell! 

We all feel like NOT eating when it is hot and humid. You just add a layer of complication when dealing with a type 1 diabetic and you have to figure out on behalf of someone else IF they are going to eat and how much. We managed through the day with near perfect blood glucose levels (this time!) but there are and will be times that we are equally unlucky. And sure, I could claim it was experience and skill that is responsible for those great numbers, and I am sure there is an element of experience that played a part, but sometimes as the parent of a type 1 diabetic, you know that you have done everything right and the numbers just come out wrong. 

The summer certainly brings it's share of challenges. The warmer weather, in my opinion, brings more activity - requiring LESS insulin. But then it also brings more junk food (for us anyway) because we spend a lot of time at the shore - requiring MORE insulin. So, maybe it equals itself out. As long as we have our trusty tech by our side (our fantastic insulin pump and continuous blood glucose monitor, CGM) then we feel we can take on what the summer will dish out (and hopefully that will be plenty of ice cream!) J