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.

Friday, November 4, 2011

Blue Friday

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

Thursday, November 3, 2011

Redhead Walking

On Saturday, October 29th, 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

Sunday, October 16, 2011

Post-Breakfast Spikes

We are now 8 months into the search for consistent blood glucose for Emerson and while we have made some gains across most times of the day, the after breakfast period still remains a huge challenge for us.  We have seen readings all over the board at mid-morning checks, but mostly they are above the target range (100 – 200) and quite often, substantially higher than the upper threshold, evidence of some serious postprandial spikes.  We have tried some different approaches but are dealing with a few factors that are increasing the level of difficulty.  The first of course, and one we suspect many of you experience, is the type of foods that Emerson likes to eat for breakfast.  While we have made great strides to incorporate foods that are better for her, she still likes her Cocoa Krispies, Fruit Loops, and other sugar-laden cereals on occasion.  Our second challenge is associated with the timing of many of her mid-morning glucose checks.  During the week, when she is at pre-school, the kids are given their morning snack at 9:00am, or soon after.  Emerson usually doesn’t finish eating breakfast until close to 7:30am.  So her mid-morning glucose check occurs only an hour and a half after breakfast, which we don’t believe is enough time to really see the full effects of her breakfast bolus.  We have recently begun to slowly adjust the timing of breakfast to create a bigger window between these two.  While this will likely have some benefit, we don’t expect it to be the full solution given our experiences.  On the weekends we usually have a snack closer to 10am.  This has some impact (avg mid-morning weekday reading = 258, avg mid-morning weekend reading = 196) but doesn’t result in readings that are consistently where we would like them.
So how do we currently manage this period of the day?  It should be mentioned up front that Emerson does not have a CGM, so in order to get a true sense for what her glucose is doing, we have to perform more frequent finger sticks, which we obviously try not to do very often.  She has however been a pumper since June, when we chose the OmniPod as her lifeline.  This introduced some flexibility in what we could do with her basal and gave us the ability to more aggressively attempt to eliminate the morning glucose spike and overall inconsistency.  After considering some things others were doing we decided to try the super bolus approach.  So we added a couple hours of basal to her breakfast bolus and cut her basal down as low as possible for the hours following breakfast – which on the OmniPod meant a .05 basal rate.  At the beginning we were generally pleased, as we saw less lows at lunch due to the lower spike and subsequent late morning crash and improved overall consistency.  We made some minor adjustments over time but just weren’t finding the consistency that we would like.  Recently, however, we reached a point where we noticed some difference in her readings depending on what she ate (e.g. high sugar cereal vs. oatmeal).  So we planned to more closely track this for a period of time to see if we didn’t need to create different formulas to figure breakfast boluses depending on foods consumed.  Soon after, Emerson had a quarterly appointment with her Endocrinologist.  Her A1c had improved significantly, much to the delight of Dr. Hannon.  However, the improvements that we have made across the day now made the mid-morning readings look like a flashing red light.  We discussed the challenges and some things to try.  She suggested we try to include more protein at breakfast to slow the digestion of carbs, thus reducing the spike in glucose and hopefully improving consistency throughout the morning.  We were willing to give it a try, although didn’t have high expectations.  On the first day we did everything the same – except gave her a banana and peanut butter instead of the normal fresh strawberries and blueberries.  At the time of Emerson’s mid-morning snack I got a call from her pre-school…she was at 95 when they tested her.  Per our agreement with them, they treated her.  However, when they tested her again she was at 75?.  This was the first time they had experienced this so were understandably a bit worried.  We were shocked – it appeared the addition of the protein – via the peanut butter – worked much better than we assumed it would.  We figured the use of a super bolus with the added protein meant she now got way too much insulin.  We would need to obviously make a change to her breakfast dose tomorrow but were very encouraged by this.  Since that time we have constantly made adjustments to her breakfast I/C ratio and the super bolus amount.  We are now back to the same parameters as the day she went low at her mid-morning check but have not had that repeat itself.  On the majority of days we have experience the same mid-morning spike that we thought for a moment we had conquered.  Back to square one.
We are hoping somebody has mastered this period of the day and might be able to provide some guidance to us and anyone else that might be having the same struggles.
Has anyone had similar challenges and been able to overcome them in a child of a similar age (4 yrs old)?  If so, is there any advice you would be willing to offer?

Friday, October 14, 2011

Emmy and Coco

Last week, Emerson had her quarterly check-up at Riley Hospital.  For mom and dad, it was a great visit because her A1C is going down, but it was an even better visit for Emerson because she scored a copy of Disney’s new book, Coco and Goofy’s Goofy Day.  Emerson loves the book, especially since Coco has diabetes and carries a backpack of supplies and wears a special bracelet like she does.
This is one more reason why we love Riley Hospital!

Friday, September 30, 2011

The Roller Coaster That No One Should Ride

Life with diabetes is like a roller coaster ride.  As soon as you start getting consistent blood sugar readings (for Emerson that would be between 100 and 200 – a pretty big target right), something happens and the ride begins again.  Emerson has been pumping since June, and we are just starting to see more consistent readings.  But then, something like a growth spurt, sudden and prolonged activity due to visitors showing up or an issue with pod (aka her pump), can drastically send her low or high in a matter of minutes. 
We experienced one of those blood sugar roller coaster rides yesterday – the details of how it all unfolded are below.  We had a similar experience last week, so we learned to act a little more quickly.
6:45 a.m. – 189 (off to a good start)
9:11 a.m. – 126 (awesome reading considering the timing – did we conquer the post breakfast spike?)
12:04 p.m. – 177 (still doing good at lunch)
3:14 p.m. – 232 (much higher than our normal afternoon snack reading – we wonder about the possible causes but hope she is lower at dinner.)
5:59 p.m. – 415 (extremely high – we begin to become suspicious that it is a bad pod, but pray we are wrong and the big bolus will bring her down quickly.  Her pod isn’t due to be changed so we hope that it will make it the full three days.)
**Spent nearly an hour on the phone with the maker of the test strips reporting bad test strips, and finally I got them to agree to replace an entire bottle of test strips.
7:11 p.m. – 469 (wondering why the big bolus isn’t doing anything - something is definitely wrong but she must have gotten a decent amount of insulin if she hasn’t gone up much since dinner; now wondering if it is something else)
8:02 p.m. – 361 (ok, she’s slowly coming down, so we will give her a bath and then decide if we need to change her pod.)
8:50 p.m. – 353 (not coming down fast enough and a trace of ketones – time to change pod) 
**During the pod change, we injected the insulin into the pod and no beep (this happened early this week and the customer service representative at Omnipod told us to try a new pod), so we took out a second pod, injected insulin and no beep.  Finally, get a third pod to prime properly but it wasn’t sticking very well.  We taped the pod and applied liquid band-aid in loose areas and the pod seemed good.
9:04 p.m. – 346 (still not coming down quickly but no ketones – small snack and bolus)
10:23 p.m. – 391
12:24 a.m. – 409 (Late night pod changes usually mean high numbers but we are concerned that we might have to change the pod again.  Give correction and check again in an hour.)
1:24 a.m. – 333 (slowly coming down)
3:24 a.m. – 151 (yeah – finally, right in the middle of our target range)
6:17 a.m. – 102 (decided to do a quick check to make sure she didn’t crash before breakfast – of course, she was on track to be  low at breakfast so we gave her 5 Smarties and let her return to sleep)
6:56 a.m. – 118 (perfect again – hopefully, the day will be filled with good readings)
As you can see, life can get crazy in just a matter of minutes.  We still do not know what happened to cause her huge highs but we are guessing that maybe she hit her pod at school and it became kinked or loose (because this has happened before) or it just was defective, as there have obviously been other issues with multiple pods in the box. 
We are praying that diabetes will play nice this weekend and give us a weekend with good blood sugars – we sure need it!

Thursday, September 1, 2011

Meet the Redhead

Emerson, the redhead, was diagnosed with Type 1 Diabetes on February 8th, 2011 at 3 ½ years old.  Before her diagnosis, Emerson loved to dance, act, do gymnastics, and play with her friends at pre-school.  She didn’t believe in downtime – preferring instead to stay active until she was forced to go to bed.  She was a very competitive, driven kid, demanding to do things on her own and always looking to impress whoever was in her presence.  In the week leading up to her diagnosis, and for a few weeks after, things were quite a bit different.  (For the story on that difficult time please see the Diagnosis Story tab).  But after that brief “recovery” period, where we feared our Emerson had become someone else, the Emerson we knew returned… quickly becoming more competitive, driven, eager to learn, and our big helper with managing her health.  Like most kids, Emerson was clearly able to take this challenge in stride – much more so than her parents!  We couldn’t be more proud of her resiliency and ability to not let this affect her desire to live life to its fullest.
In June 2011, after 4 months with the disease, Emerson started on an insulin pump.  We chose the OmniPod, due mainly to it being tube-less and waterproof.  She loves being a “pumper” and does not miss injections at all.