Blood Tests Taking Forever?

While we have been very fortunate to have a young T1D that is generally very accepting of her disease and almost always takes everything that comes along with it in stride, there are still times when something happens or is said that just breaks our hearts.  There have been a handful of times in the past when Emerson has said “I don’t want diabetes anymore.”  Usually this has occurred after having us tell her it would be best if she didn’t eat some unhealthy treat or after we have asked her to settle down for awhile after being low.  But we always reply by telling her that we don’t want her to have it either and that she was chosen to have it because she is so strong and deals with it so well and that she has a great opportunity to spread the awareness and understanding to other people.  We can get away with this now because she is only 4 ½ and doesn’t fully grasp what we are telling her…but can you imagine how she will react to that reasoning when she is 10 and none of that matters to her!

Anyway, we heard a new line from her this past weekend.  Out of the blue she said “I don’t want to have diabetes anymore because getting my blood tested takes forever.”  We couldn’t help but laugh given that glucose checks are obviously not time intensive events!  But when you step back and think about how this was just another attempt at coming up with a good reason why she shouldn’t be impacted by this disease, it does create one of those moments where you feel so bad about what she is going through but you can’t let her know that.  We can’t imagine how hard it would be to deal so well with such a difficult disease….with only the rare attempt at convincing mom and dad to make it go away.

Playing a Small Role in Extending T1D Awareness

Last fall we were fortunate to have the opportunity to get involved with Riley Children’s Foundation and their fundraising efforts. They invited us to be a part of a video production that was played at their Annual Luncheon, where donors and supporters are invited to hear and see the impact that their generosity has. Each year at this event they highlight a few diseases by interviewing families impacted by it and doctors and researchers treating and studying it. This year, T1D was one of the diseases being emphasized so we were asked to participate. While not the camera loving type, we didn’t hesitate to say yes. We considered this to be a great way to help extend awareness of the disease and how it impacts our families. We also saw this as another opportunity for Emerson to get more comfortable with having the disease and others knowing about it. The more she realizes that she is normal, even though she may have a couple more devices / tools than most kids, the better prepared she will be to deal with kids that try to make her feel less than special as she gets older.

The video was recently made available to us and we have posted it in case anyone is interested in seeing it. At the event we were also happy to see that T1D research was one of the featured articles in their Annual Report, and our story was part of that story. The more eyes focused on this disease the better – both for our kids and those that haven’t yet been diagnosed!

Special Treat

Well, here it is - our 1 year anniversary of Emerson’s diagnosis. So far it has gone much like the previous 364 days, but we decided to change it up with a special treat. We have kept Emerson on a pretty healthy diet over the last year, except for the occasional birthday party or rare splurge. We do usually allow her to have a small, not so healthy treat on Fridays. Today isn’t a party or a Friday but we surprised her with a trip to Dairy Queen to commemorate this day. Why Dairy Queen? Their menu, including nutritional information is available online, making for easy pre-planning!

1 Year Anniversary

It is hard to believe but February 8^th, 2012 will be our 1 year anniversary of joining the T1D world.  We thought time flew before, but it was nothing compared to the last year.  Must be all those good night sleeps we have gotten since the diagnosis and all the free time we now have to fill, right?  In any event it has obviously been a difficult year at times but we have certainly learned a lot, made some progress towards BG consistency, and now have a better appreciation for the challenges faced by the many people dealing with this and numerous other diseases.

It is amazing to us how, after a full year, so many things about that day are still so clear in our minds.  It is tough to re-live that entire day but to avoid thinking about it on almost a daily basis is impossible.  We know we were truly lucky to arrive at the ER when we did and to have had so many good people care for her during her stay in the hospital.  On several occasions in the beginning we asked ourselves “why her?”  It just didn’t make sense that this sweet, loving young girl would be dealt such a challenging hand.  We all spent many nights lying in bed, allowing the darkness to hide the tears running down our faces.  It was just heartbreaking to think about our baby having to deal with T1D for the rest of her life, or at least for a very long time.  But the fact is - no child deserves to have to go through what this disease inflicts and requires.  And no family deserves to see their child or children have their life impacted by it.

As we have gotten more involved with Riley Hospital for Children, it has become clear that it could be much, much worse.  There are many kids that would give anything to trade places with Emerson.  While we still have those moments where the emotions get the better of us, we no longer ask the “why” questions.  We are fortunate that Emerson is such a great patient.  She still tells us at times that she doesn’t like or want diabetes.  We completely understand and agree.  But we also see how strong she is in dealing with all it has to offer and can’t help but think there are so many other kids that would have such a harder time coping with the disease – and understandably so.  We see how unaffected she appears to be when others ask about her pod or watch as she gets her blood tested or insulin delivered.  It has just become part of her.  For the way she has handled this entire situation – she is, and always will be our hero.

So how has T1D changed our life?  Well, outside of consistently getting less sleep and conducting extensive analyses of historical glucose readings to determine the necessary insulin dose adjustment, it hasn’t changed all that much.  Of course this is a bit of a stretch, but we did already stick pretty closely to a routine and schedule on most days, so we didn’t have to make a big change to how we go about our lives.  We also maintained a relatively healthy diet for the most part, so we weren’t required to dramatically alter what she eats to have a hope of finding consistent BGs.  We didn’t, however, always count carbs and measure foods….and boy were we missing out.

What do we hope changes in the coming year?  One of our biggest concerns still to this day is our ability to detect when Emerson is low.  We are fortunate that she doesn’t have frequent lows but when she does we have rarely been able to tell.  She actually seems to be at her best many times when she is low – her mood is usually good and she plays very well on her own.  The only characteristic that we have noticed on some occasions is her color becoming pale and dark circles appearing around her eyes.  We have not always been correct in using this as a predictor but it has been accurate more than a few times.  We are interested in hearing how others pick up on lows so if anyone is willing to share their experiences we would welcome them.  Another change we would love to see is for her pancreas to finally decide to discontinue the intermittent insulin production…unless of course a true miracle is in order and it wants to become a fully functioning organ.  It’s still okay to dream right?  We look forward to the day when we are no longer surprised with a series of lows after thinking we have made great strides in finding consistency, only for things to get back to normal after a few days.  Finally, we are hoping to find enough consistency in overnight BGs that we can reduce the number of checks and corrections that we currently perform.  We have made good progress recently but still do checks, and more often than not give corrective doses, at 12:30 and 3:30 a.m.  Depending on what those BGs reveal we sometimes find ourselves having to do additional checks throughout the night as her glucose refuses to cooperate (the flashlight is obviously a frequently used tool for us!).  Her endo is still surprised by how much it fluctuates while she sleeps.  We had no idea we would be re-living the newborn phase and have to function on only short naps for this long.  At this point, a night of uninterrupted sleep might put us into hibernation.

While we have only gotten through the first of many years, we do think we can offer some words of encouragement for those just finding themselves thrust into the T1D world.  We know how devastating the diagnosis can be, especially when you are completely unfamiliar with the disease.  If you are just going through this experience and feeling completely overwhelmed don’t lose hope.  While it isn’t by choice, you will quickly gain a level of comfort that you never thought possible and will become a very effective healthcare provider. 

Throughout this first year we have found the community of T1D bloggers to be extremely helpful.  Keeping up with the various blogs is very therapeutic, as it makes you realize that you are not in this alone, and that can be very comforting, especially in the beginning.  It would be great if there were some way that newcomers to T1D could be made aware of the DOC following the diagnosis so they can get acquainted with it as soon as they are able to catch their breath.  The community is a great source of valuable information, advice, and experiences and is one of the things we have been most amazed by.

Well, one year down and many more to go.  It was obviously a difficult year but one we are glad to have behind us.  The highlight of our year was an easy choice.  It was when a couple of her pre-school friends had their families bring them out to join us in the Walk to Cure Diabetes when it was in Indianapolis last fall.  It will be experiences like these that will allow for brief escapes from this challenging disease going forward, and there can’t be enough of those.

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.

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.