Monday, January 30, 2012

Is it Possible? Could Finger Sticks Really Be Replaced?

Nothing about T1D is ideal, and so many things about the disease are extremely heartbreaking for any parent whose child has the disease.  There are certainly worse diseases and complications to have, but T1D has its share of requirements that nobody should have to deal with.  When Emerson was first diagnosed we were very unfamiliar with the disease and so all of our early thoughts and concerns were based on things we had heard years ago.  We feared that Emerson’s life as we knew it was over forever – that she wouldn’t be able to be as active as she had been to that point, that she wouldn’t be able to eat any of the things that all kids love, and that she would experience some tough times growing up when others made her feel less than special.  However, we quickly found that the treatment and management of the disease has changed a lot in just the last decade and that our initial concerns were far from reality.

Upon coming home from the hospital we quickly became comfortable with most of the steps required to manage T1D.  But there were two things we never enjoyed – giving insulin injections and performing finger pricks.  We quickly learned that insulin pumps allow for the virtual elimination, or significant reduction, of injections and looked forward to the day when we would be able to get Emerson on one – which we have since done.  So now instead of multiple injections each day we do a single cannula insertion once every three days when things go as planned.  But as we all know, finger sticks are something that can’t be avoided if we want consistently accurate glucose readings – and since Emerson does not have a continuous glucose monitor, she gets pricked numerous times a day.  But the need for them does not make it easier to get used to.  We often look at Emerson’s fingers and are amazed at how they look after only a year with T1D.  She has already developed calluses on some fingers.  We could understand if we routinely used the same finger and location.  But for the first several months we actually documented where sticks were performed to ensure we were using all fingers and locations around the tip.  We just can’t fathom the long-term impacts of this.  Thanks to the work of some folks at Brown University we may not have to find out what those impacts are.  As outlined in a recent press release (read Brown University press release here), they have made progress towards potentially eliminating the finger sticks by developing a device that can measure glucose in saliva.  We pray that these folks continue to make great progress on this and that it becomes reality sooner rather than later.  It would be a significant improvement to the efficacy of those with T1D and those that participate in the management of the disease.

Friday, January 27, 2012

Overcoming the Impulse

Last weekend we took Emerson to see Disney on Ice while it was in Indianapolis. We knew with her love of princesses and curiosity toward ice skating that this would be something she really enjoyed. What we tend to forget about when going to things like this though is how difficult it is when the vendors come around selling things like cotton candy and shaved ice in pretty princess cups. While a benefit of being on an insulin pump is the added flexibility and enhanced ability to manage such scenarios, we keep Emerson’s consumption of treats pretty limited. In fact, we generally only allow her to have special treats (candy, ice cream, etc.) once a week, which we have been able to do with very little issue because Emerson has always been a very good eater and likes a wide variety of foods. It is not that we don’t want her to enjoy being a kid, but her BG has been extremely volatile since day one and we do all we can to keep her in range. So when attending things like this there is always the dreaded food vendor that pops up out of nowhere. We are fortunate that Emerson does not make a big deal about not having these things like the other kids, but it doesn’t make it any easier as we know that it is times like these that make her hate having T1D. We take these opportunities to talk to her about the importance of a healthy diet but it doesn’t take away the heartbreak of her seeing other kids getting things that she is unable to enjoy without getting insulin and the after effects of so much sugar. We are hopeful that helping her to maintain a good diet now will make it easier for her to continue to eat healthy once our ability to control and then influence how she eats is a thing of the past.

We do expect that we will become more relaxed about the occasional splurge in the future. Our experience over the recent holiday period allowed us to see that we can keep her BG relatively stable even when deviating from the normal diet. After 10 months with T1D, we decided to allow Emerson to eat some of the normal holiday treats, but not without a lot of apprehension. She thoroughly enjoyed consuming cookies, cupcakes, and pie over a two week period around Christmas. After surviving the season and looking back we were happy to realize that while we did have the occasional spike and subsequent low, there was virtually no difference in her average daily BG during that period when compared to the weeks before and after. This gave us a good deal of confidence in our ability to effectively dose for these types of foods and keep her somewhat in control. We had an appointment with Emerson’s Endocrinologist right after the holidays and found that her A1c had increased slightly since our last appointment. The doctor immediately thought that this was due to the holidays but we were happy to be able to say that we felt it was not due to that but rather a 10 day stretch that saw numerous periods of elevated BGs due to repeated issues with our pump.

Wednesday, January 18, 2012

Rufus Goes To School

January’s theme at Emerson’s preschool is Favorite Things. This week in her classroom the kids are allowed to bring in their favorite teddy bear. For Emerson that would usually mean her stuffed panda bear that she has had her whole life, whose white areas are no longer so white and body is in need of some replacement stuffing. “Bear Bear,” as she has so named it, is never too far from her when she is at home and also is brought along in the car whenever we go places. Bear Bear gets to play Barbies, be taught gymnastics, act as a pillow during sleep, and of course…get held during every pump site change. We thought it was a no-brainer that she would be taking her panda to school as she has done in the past for the rare Stuffed Animal Day. Apparently we didn’t realize that she had bigger things in mind.

We were shocked when on Sunday she said she wanted to take her Diabetes bear, Rufus, in to show her friends. Rufus is her JDRF bear that she received while in the PICU and we were undergoing our education. It has colored patches on the insulin injection sites (which for her are pod sites now) and a medical bracelet, which she wanted to describe to the other kids. It also has a book with it, which is a story about a boy with diabetes. We thought this was a great idea and immediately told her so. She was so excited that she went and got both out of her room and put them on the kitchen counter so we wouldn’t forget them on Monday. On the ride home she couldn’t wait to tell us that her friends really liked her bear and that the teachers had her pass it around so everyone could look at it. They were even kind enough to read the book to the class.

We can’t fully describe how happy we are with the way this all unfolded - from Emerson coming up with the idea on her own and being comfortable talking about her disease, to the teachers voluntarily reading her book without us even mentioning it. This was a great opportunity for Emerson to make her friends more aware of what she is experiencing and more importantly, to gain experience and confidence in talking about T1D and realize that others do not see her any differently from themselves. We have always taken every opportunity to tell her how special she is and how cool her pump is and it was great to see that it may be having an impact.