Brothers

One evening in July when we were at the CWD conference, I asked Garren and Cole how they were enjoying their sessions.  I asked questions about how their sessions worked and what they talked about.  They explained to me that often they get separated from the kids with T1 so they can discuss issues specific to being a sibling of a kid with T1.  I continued my probe and asked what kinds of things did the kids bring up.  Cole said a lot of the kids mentioned that their parents spend more time taking care of their T1 brother or sister and less time on them.  hmmm ... interesting 

So I asked Cole, "How do you feel about that?  Do you think we spend more time with Ben?"

Both Garren and Cole replied, "Yes."

I then asked,  "Does that bother you?"

Cole quickly responded, "No!  Because I know that is what you have to do."

Seriously, my boys are pretty awesome!  And I think its time to devote a post to Garren and Cole and let the whole world know (or at least the handful of people who read my blog) how truly great these two T1 siblings really are.

To start, Garren is our oldest.  He has been the light of this family since he was born.  He has a talent for being able to chat as easily with an adult as with a toddler.  I marvel at how self-assured he is.  In social settings I tend to be wallflower, but not Garren!  Within a few minutes he will know the names of everyone in the room and he will even have several new cell phone numbers to text to.

Cole is a thinker.  He never stops asking questions.  When he was young he would pepper me with questions.  He would want to know how the seasons worked, how far was it to China, and why was the sky blue.  Once after a long day of questions I had to tell him I just did not know all the answers!  And Cole, the ever-clever toddler, responds, "Mommy how could that be true, you went to college twice?” To this day he is still asking questions (thankfully, I am no longer his only source for the answers.)

Now to be clear, my boys are not angels.  At times I find myself refereeing their arguments.  I often refer to them as the "bicker brothers."  Believe me, a three-hour car ride to visit their grandmother in Maine can be extremely painful.

But at the same time I know how much they do love each other.  They have proved it to both Jeff and me time and time again.  Since the day we came home from the hospital after Ben was diagnosed these two brothers have been nothing but supportive.  They have made sacrifices without complaint.  They have learned to carb count.  They have taken care of Ben through both highs and lows.  They have even worked to raise money for JDRF in the hope of finding a cure!

I have often been teased that I love Ben the most.  Admittedly, since Ben’s diagnosis Jeff and I have definitely spent more time taking care of Ben and worrying about his diabetes.  We have spent hours and days working on raising money for JDRF.  And I have spent hours writing stories for this blog.  But in no way does that mean I love Ben the most.  How could I when Ben has two of the greatest brothers, Garren and Cole!

Ben's D.A.D

I have read on several blogs and other T1 online forums about Diabetic Alert Dogs (D.A.Ds).  According to the stories many families have found these dogs very helpful and more importantly life saving.  These service dogs are specially trained to detect, by scent, if their owner's blood sugar is either too high or too low.

A few months ago Jeff and I considered getting a D.A.D for Ben, but then we found out how much they cost! You could buy a car with the money it takes to train these dogs.  And since the check engine light in my car keeps warning me I might just need a new car soon, we decided against it.

To be honest, even though I had read countless success stories I remained a bit sceptical.  I am a cynic by nature.  Could a dog really reliably detect if Ben's glucose levels were too high or too low? Thing is I had already seen proof that it just might be possible to detect a high.  On several occasions Jeff has been able to smell Ben's skin and detect a super high blood sugar.  I have witnessed this with my very own eyes.  Yet I still had my doubts about anyone (including a dog) being able to smell a low.

Last night, after work I went out for drinks with several coworkers.  During the evening we started chatting about service dogs (I work with many, many pet lovers).  And someone asked me about getting a D.A.D for Ben.  I told them about the cost, which Jeff and I were unwilling to pay, and about my doubts about whether they were really worth the cost.  I told them how Jeff had been able to smell a high blood sugar which made some sense to me.  I assumed he smelled an extra sweetness.  But how do you smell a lack of sweetness?  So we then theorized about how well the dogs could really do this and detect a low.  By the end of the evening, all the dog lovers insisted that we should get one, regardless!

Then when I got home last night, Ben was in the basement playing Xbox and Jeff, Cole and Garren were upstairs watching the Little League World Series.  Soon after I arrived home Jeff called Ben upstairs and told the boys it was bedtime.  So after a few more reminders (the boys never stop playing Xbox that easily) Ben came up stairs and gave Jeff a good night hug.  Then, with my very own eyes, I watched Jeff pull Ben closer and smell his hands and then say, "Ben, before you go upstairs check yourself because you smell low." 

What?!  Did I just hear that?!  Ben went and checked himself, and indeed he was low!

Oh my God! It's totally possible to smell a high and a LOW blood sugar.  I no longer doubted any of the stories about how awesome D.A.Ds really are!

But now I know for certain, we do not need to buy Ben a D.A.D.  He already has a Diabetic Alert Dad! 

Our Trip to the West Coast ... and Looney Tunes

I finally feel like I can breathe.  I have spent the last week with a very heavy heart.  I felt as if I leaned too far forward the weight in my chest might just topple me forward and I would land on the floor flat on my face, and there I would stay.

But like I already stated, I can finally breathe again, and now I can tell our story.

It all started two weeks ago.  Our family packed our bags and headed to Boston Logan airport to fly out to California.  This would be our third trip to the west coast and across three times zones over the past year.  During our two previous trips we struggled to keep Ben's glucose numbers in a normal (and safe) range.  Our theory on these high numbers has always been that the time change wrecks havoc on Ben’s system.  I assume all our bodies go through the same process and we feel it as jet lag.

This time Jeff and I made a plan.  We would check Ben's numbers frequently and we would not be shy about giving him aggressive correction boluses.  We hoped if we stayed on top Ben's numbers we could prevent too many extended highs.  So as soon as we start seeing high glucose readings we would start “bolusing in anger”.  This is a term I stole from other diabetes blogs, which describes giving insulin, often more than you usually do, to bring down a particularly frustrating high glucose number.  (Please, please no one should take this as medical advice!)  But this was our plan.

When we arrived in Los Angeles last week we slowly watched Ben’s glucose numbers climb.  We quickly decided it was time to start blousing in anger … and more anger … by the end of the day we were really enraged … but when Ben went to bed he was still high.

Our second day in California was the day of the wedding.  Yeah!  Ben’s godmother was the bride and she invited him to be part of the wedding party.  He was thrilled to be able to wear a tux.  But the morning of the wedding Ben woke up still high.  Jeff and I decided it was time for drastic measures; it was time to “basal in anger.”  (Again, please do not take this as medical advice.)

I will take a quick break from this story to explain the difference between bolus and basal insulin.  I am stealing this definition from www.lantus.com.  “A normal pancreas delivers 2 basic forms of insulin: a 24 hour-a-day, low level supply known as basal insulin, and bolus insulin, the large doses it releases in response to meals.”  (I hope that cleared everything up.)

Because Ben wears a pump, we can easily increase his basal rate.  So we increased his basal rate by 20%, and we crossed our fingers.  Right before Ben was about to walk down the aisle we gave him a quick check.  He was in the 200s, so far so good!  Now I could enjoy the wedding ceremony without constantly watching Ben for any extra bead of sweat or any other sign of a high or a low.  We checked Ben again at the reception before dinner was served, and miraculously his reading started with a 1!  Jeff and I gave each other high-fives and joked about rage bolusing and rage basaling. (A joke only Jeff and I found amusing.)  After dinner, Ben and his brothers danced the night away!  After hours of rocking the dance floor, Jeff and I thought it was time to bring Ben’s basal back down to normal.  That might have been a very big mistake because that was the last time we saw a glucose reading in the 100s.

The following morning Ben woke up with a reasonable number, a number that did not scare me.  So we decided we didn’t need to basal in anger and left his pump alone.  We spent the day visiting with family and visiting the Santa Monica Pier.  During the day we checked Ben several times and watched his numbers slowly, slowly move up.  We continued to bolus in anger, hoping that the next reading would bring good news.  We also tried moving Ben’s pump insertion site, we changed Ben’s insulin bottle and we continued to rage bolus, but Ben’s numbers remained way too high.

Our last day in LA we went on a Warner Bros Studio tour.  We arrived thirty minutes early so we waited in the gift shop.  We had already discussed with the boys that we were not going to buy anything, but they were welcome to look around.  We laughed at all the cool Looney Tunes memorabilia.  Then Cole and Ben headed off to the Harry Potter section and inspected all the wands.  Right next to the Harry Potter section is an Italian gelato stand.  The lady behind the counter let the boys sample the flavors, and they quickly talked Jeff and I into buying them all one.  Ben chose a lemon flavored gelato which he described as “the best thing he has ever tasted.”  So everyone made their choice and we sat down to enjoy the gelato.  Before Ben could eat we checked his blood sugar.  We were hoping for a number in the 200s but instead Ben was in the 400s.  Oh God!  After a quiet but heated “discussion”, Jeff and I decided Ben just couldn’t eat the gelato.  Everyone dumped what remained in their cups.  Ben’s eye welled up and he sobbed. 

Now my heart felt like it might explode.  It felt as if Wile E. Coyote had just dropped his anvil and again missed the Road Runner but hit me instead!  Jeff knew how I felt.  He gave me the “eye”.  He was worried I was going to give into Ben’s tears.  But I could not bear the weight and I whispered to Ben and Cole that they could go find something in the gift shop.  They quickly ran off.  And soon I was buying overly priced magic wands.

Eventually, the tour started.  Beyond making the Looney Tune cartoons, the studio has created several hit TV shows.  We saw the sets of  “The Big Bang Theory,” “Gilmour Girls,” and “Conan O’Brien”.  We got to sit on Central Perk’s sofa from the set of “Friends”.  We did end up really enjoying the tour.   I definitely would recommend it.  (Plus I hear the gelato in the gift shop is delicious.)

The following morning it was time to fly home.  Ben woke up again with a super high blood sugar.  I had tossed and turned all night worrying about this very thing.  I was scared (almost petrified) to get on the plane and fly for 5 hours with Ben’s numbers dangerously high.  I questioned whether we should get on the plane.  Maybe we should be heading to the nearest ER instead.  But, Jeff insisted.  He insisted we just needed to get home!

And now we are home.  We have been home for a few days now.  And Ben’s numbers have slowly come back down into a safe range.  The boys have spent the week at summer camp and Jeff has been chatting with the camp nurse about Ben’s diabetes.  I have been a little out of the loop.  So today while at the office I texted Jeff, “How were Ben’s numbers today?”  Jeff responded, “Good! 125, 290, 122, 118, 102.”  I gasped.  All that extra weight was finally being released.  I no longer felt like the victim of Wiley E Coyote.  Finally, I felt like the Road Runner!  We had survived.

I suppose in the end we still have not managed to successfully travel through time zones.  But, we haven’t given up.  We will try again!  But for now I think we might limit our next trip to just flying north and south.

Camping, Teleporters and Wishes

In our small home town we have a large, fun group of families that go camping together every summer.  We first joined this group in August of 2008.  We ended up skipping the camping trip the summer of 2010 after Ben was diagnosed because the thought of bringing insulin and syringes with us into the woods of New Hampshire was more then I could bear.  To be honest, I could hardly handle the inconvenience, lack of sleep and dirt of camping before diabetes!  But we have now survived two wildly fun summer camping trips since Ben’s diagnosis.  And for me, this may just be one of our biggest accomplishments as a T1 family.

Last weekend was the annual summer camping trip.  And again we all came home happy, exhausted and filthy dirty.  We had one diabetic scare when Ben was super-duper low after swimming (it was a 3 juice box recovery).  But for the most part we survived the weekend without too much diabetic drama.  Though, I did come home with one short story to share.

The campground we visit is on the shore of a beautiful lake.  So we end up spending a lot of time swimming, kayaking and my preferred activity (which in reality is no activity at all), floating on tubes on the lake.  One family brought a very large two person raft that Ben and his two buddies, J and A, used to float around on.  They would dive off the side and then climb back up.  Here is a photo of them playing on the raft.

They played this game for over an hour before they decided they wanted to return back to shore.  By this time they were all pretty tired and none of them wanted to paddle back.  Jeff and I were floating on tubes nearby, so little A asks Jeff, “I will pay you a dollar if you pull us back to shore.”  Jeff figures he can’t pass up such a generous offer so he slowly starts to pull them back to shore.

As Jeff is paddling little A says, “I wish I had a teleporter then we could just teleport back to shore.”  The boys all laugh.

Then J adds, “If I had a teleporter I would teleport to a big comfy sofa with an Xbox so we could all play Minecraft.”  We all laugh and agree that’s a good one.

Then Ben chimes in, “If I had a teleporter I would teleport right to a candy store.”

Jeff asks, “Really, a candy store?”

Ben adds, “Yep!  And at this candy store I would have $20 and there would be no such thing as diabetes!”  We all laugh.

Then A says, “Yea!  I’ll go there too!”

It has been almost three years since Ben’s diagnosis and this was the first time Ben has ever wished he didn’t have diabetes.  He has been so strong, certainly stronger then both Jeff and I.  My heart ached a little bit.  I pray everyday that a cure is found in Ben’s lifetime.  But maybe as a backup I should also pray for a teleporter!  Then we could all just teleport to the magic candy store where there is no such thing as diabetes.  Hopefully it’s a big store because every T1 family is invited!