Friday, December 30, 2011

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.

Sunday, December 18, 2011

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.