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.

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.

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.

All Our Favorite Things….for the Management of T1D that Is!

Just as Oprah had her favorite things each year, we too have some “items” that are our favorites when it comes to managing Emerson’s Type 1 diabetes.  It is a mix of products, household items, people, or “services” that improve Emerson’s quality of life, make our management of her disease more effective, or provide a source of valuable information and the realization that we are not alone.  So without further delay, here they are:

The OmniPod:  Insulin pumps are great things in general – no multiple daily injections, but the tube-free and water-proof features of the OmniPod make it the ideal device for our situation.  Tubing we think would continuously snag on anything and everything in the vicinity of her during play and gymnastics, and the fact that she can go swimming and take a bath without removing her pod and interrupting insulin delivery is a major plus.

The “Super Bolus”:  While we still have morning BS spikes on occasion, they are certainly not as frequent or of as high a magnitude now that we have gotten more experienced with our variation of the “Super Bolus” technique, where we give extra insulin with the breakfast bolus to limit the post-meal spike, and eliminate the basal for a couple hours after to prevent a nasty crash.  It definitely took a lot of trial and error but we are seeing the results.

Freestyle Test Strips:  Compared to the meter and strips we were initially prescribed, the extremely small volume of blood that these strips require is simply amazing.  We hate that finger sticks remain the best way to determine an accurate BS, but not having to squeeze until we get a pool of blood the size of a small lake sure is nice.

SkinTac:  The aforementioned OmniPod has a pod that attaches to Emerson’s body for up to 3 days.  They have an adhesive back but that doesn’t always hold up to a 4-year-old’s play agenda.  For the first several months we also taped the pods to her body as an additional means of security.  However, this always irritated Emerson’s skin.  Fortunately we recently found SkinTac, a liquid adhesive for adhering things to skin.  We apply it to the pod site before placement and can’t believe the difference it makes.  The pods are now much more secure and better able to withstand the demands put on them, and skin irritation has been eliminated.

Uni-Solve:  The combination of the adhesive that accompanies the pod, which again is meant to hold up for up to 3 days, and the SkinTac create a bond that is very difficult to break and remove from the skin.  That is until we discovered Uni-Solve, which quickly breaks down the adhesive and allows for easy removal of the pod, no matter how affixed it is at the time.  This works better for us than baby oil.

Medical ID bracelet:  We always make sure that Emerson is wearing a medical identification bracelet, and she doesn’t seem to mind wearing pretty bracelets!

The community of T1D bloggers:  It is so nice to have blogs to visit where we can learn what others are going through, what works/doesn’t work for them, and/or to just be reminded that we are not alone in this.

The Staff at Emerson’s preschool:  They have been more than awesome and have given us a peace of mind that we never thought possible.  Let’s put it this way – a comparable daycare opened up literally next door to where we work.  It seemed like a no-brainer that we would move Emerson there so we were closer in case something happened.  We never even considered it.  The staff at Emerson’s school is like family to us and takes amazing care of Emerson, keeps us continuously informed, and makes every effort to allow her to be like every other kid there – even voluntarily going beyond what we ask of them.

Riley Children’s Hospital:  Emerson’s doctor and nurses have been great.  Luckily, we have not needed them much outside of our quarterly check-ups but we always know they are available for questions, if needed.

Measuring cups:  We have worked extremely hard to achieve some consistency in Emerson’s BS.  It has taken constant attention to detail and we would not be where we are by estimating, so we continue to measure everything that she eats.

Our flashlight:  How else could we check Emerson’s glucose twice during the night and limit the chance of disturbing her?  The light on the PDM isn’t sufficient when you are trying to check with only one eye open!

Restaurants with nutrition information available online:  Like most families that have a member with T1D, and who struggle with consistency, eating out is a rare treat.  When we do decide to venture out, it is limited to a restaurant where we know nutritional information is available.  It is always much more helpful when it is accessible online, so we can plan ahead and be prepared upon arrival.  Of course, this means that we have to eat at a lot of chain restaurants, but at least we get to go out.

Capri Sun or other juice boxes:   Perfect for those middle of the night treatments as Emerson can more easily consume them even when half asleep.  They also tend to work quicker for us than most other options.  But most importantly, they can be followed by a quick splash of water to rinse away any sugary residue on the teeth, unlike with Skittles, Smarties, etc.

Our CGM…oh wait, we don’t have one – but if we did it would be a favorite tool of ours!  We many times perform finger sticks more often than necessary to learn what is happening with Emerson’s BS, as it can be very volatile.  It sure would be nice to be able to look at a CGM to get a better idea of which direction she is going.

Driving Awareness and Helping to Fund a Cure for T1D

In November, we attended the Riley Children’s Hospital Annual Luncheon for a very special reason. It all began a couple months ago when we were contacted by Emerson’s endocrinologist who wanted to know if our family would be willing to participate in a video production that was going to be used in the fundraising efforts of the Riley Children’s Foundation, which provides extensive support and funding to Riley Children’s Hospital. Given the cause we agreed without hesitation – not realizing at the time that we would have to speak on camera! We soon learned that the video was going to be part of the program at the Riley Foundation Annual Luncheon, where donors are invited to listen to stories about different conditions affecting children and to hear directly from Riley patients - all to help the donors realize the impact of their support.


Although we felt very fortunate to have Emerson diagnosed and cared for at Riley – one of the country’s best children’s hospitals – we had not yet become all that familiar with the work and role of the Foundation. This left us not knowing what to expect at the luncheon. Soon after arriving it was clear that any expectation we would have developed would have been far exceeded. Riley hosts the annual luncheon each year to focus on selected diseases / conditions. This year Type 1 diabetes was one of the diseases highlighted, which is why the opportunity was extended to us.


During the portion of the luncheon focusing on Type 1, attendees heard some of Emerson’s diagnosis story as told by us and from her endo who disclosed that Emerson was the sickest diabetic kid she had seen in years. The video presentation also included interviews with diabetes researchers at Riley, who talked about the progress and developments being made towards curing this disease. At Riley they are not satisfied with improving the management of the disease and feel they are at the brink of finding a cure. They indicated that there has been an explosion in Type 1 research over the last ten years, which has translated to exponential growth in their learning about what causes the disease. This is all great news for everyone out there impacted in any way by this condition.


On our way home we began to look through the materials provided to attendees as they left the event. We were completely surprised by the fact that Type 1 diabetes research and care was the topic of a feature article in the Foundation’s annual report, and portions of our story and interview were included in the piece. We were ecstatic to see this as it was another way to further increase awareness of this disease.


However, we also left the luncheon with emotions on a different end of the spectrum. We heard some very touching stories of kids and families being impacted by far worse diseases and saw kids that would certainly give anything to be in Emerson’s shoes. There are days with diabetes that feel like nothing could be worse for your child but this was proof that we are actually very fortunate and that things could certainly be worse. It didn’t take us long to decide that we are going to support the Riley Children’s Foundation as much as possible going forward, along with our continued supporting of JDRF of course. We look forward to attending next year’s luncheon and hope we have future opportunities to help spread the awareness of this disease and to assist with fundraising on this scale.

Blue Friday

Emerson is wearing BLUE to support the Colts and Diabetes Awareness!

Redhead Walking

On Saturday, October 29^th, we participated in our first JDRF Walk to Cure Diabetes at Military Park, in Indianapolis.  We had 30 people – including family, friends, co-workers, classmates and school staff - come down and support Emerson in her first walk.  Emerson had a great time and even walked the entire 3.1 miles. 

We raised $3,500 prior to walk day, so we are hoping to come close to $4,000 once all the money collected on walk day has been counted.  We initially started out with a goal of $1,000 – not knowing what to expect for our first walk.  We quickly surpassed our goal thanks to the generosity of family, friends, and even strangers.  A big thanks to everyone who walked with us or donated to our team.   

We can’t wait to start planning fundraisers for next year so we can raise even more money to find a cure. 

The Redhead

The Redhead's Family