A New Perspective

Kendal had an appointment with her endo this week.  I think I’ve come to realize that I will never get the answers I’m looking for but it has finally registered that that is because THERE ARE NO ANSWERS.  It’s taken me nearly three years to figure this out but I think it’s a healthy realization.  I’ve been so frustrated in the past because I wasn’t hearing what I wanted to hear.  First, I wanted to hear concrete answers, solutions to Kendal’s highs and lows, more information than what we learned on day one, news about exciting new technology, research results that will ease the pain of this disease, anything other than “keep doing what you’re doing”.  When I didn’t get that I wanted to hear that we were doing a good job, that Kendal was amazing and that in the end she would be just fine.  I wanted confirmation that she would grow to be a young healthy adult and then into a feisty, active old lady.  When I didn’t get either of those things I would cancel about every other appointment.  I would complain and I would be angry.  Going in twice a year instead of the recommended four wasn’t hurting Kendal at all since we weren’t really getting anything out of the appointments.

Then we switched doctors.  Kendal saw her new doctor this week.  He is unbelievably nice.  We left and Kendal felt good about herself. He told her how awesome she is and how great her A1c is. He told us we are doing a good job. So, at least one of my criteria is being met.  I’m still not getting any concrete answers, again because THERE ARE NO CONCRETE ANSWERS.    And now that I’ve accepted that reality I have a better perspective about the visits.  I realize that it is a valuable time to be reminded of good practices.  And it’s even more valuable for Kendal to hear those good practices from someone besides me.  I’ve “joked” with Kendal more than once telling her that pre-bolusing is the key to diabetes happiness but hearing it from the doctor is like gold.  And, of course, Kendal hearing from her doctor that she’s doing an amazing job is invaluable.

So, my perspective has changed.  I keep growing as Kendal keeps growing.  I’m not becoming complacent, I will continue to fight for answers and all the other things Kendal deserves, but I will do it with less anger in my heart.  I’m still not content with our doctor visits but right now they are what Kendal needs…encouragement and praise.

I would love to hear from someone that does feel like they are getting what they need from their child’s endo.  Maybe my perspective needs to change again.  Or maybe I need to have even higher expectations.

Two Years with Type 1

March 24, 2013 marks the two-year anniversary of Kendal’s diagnosis.  Two years with Type 1 Diabetes.  One more year under our belt.  Another 2000 finger pricks, 52 Dexcom insertions, 850 shots, 50 pump site insertions, 1000′s of dollars, 8760 hours of continuous diabetes management and countless accomplishments that make me very proud of my little girl.  These accomplishments are why we celebrate this day so I decided to document just a few of them…

  1. Successful transition back to insulin.  Kendal was off insulin for about 11 months after diagnosis because she was experiencing a great “honeymoon” period and as long as we ate a very healthy diet her pancreas was producing enough insulin to “keep up”.  That all ended last April and she received her first shot in a long time.  She handled it like a champ, I wish I could say the same.  I (privately) cried like a baby knowing the days of great numbers were a thing of the past.  What can I say, she is way tougher than I am!
  2. Swim Team.  Managing and dealing with diabetes while participating in any sport is a bit challenging.   For Kendal, swimming was especially scary.  She was afraid of going low while in the water.  Her fears came true more than once but she became confident that she feels those lows.  If she couldn’t come out of the low before practice was over then we would simply leave and try again the next day.
  3. Competed in her first triathlon and then did another one!.  This was a big deal.  First, an open water swim.  A swim where mom isn’t right there to jump in and save her at any moment.  Then the transition to the bike where she had to stop and test when all the other kids were moving on, getting ahead of her, glancing at her, wondering what she was doing.  Then the bike and run where she could go low at any moment resulting in her having to stop, regroup and finish way behind where she should have.  Luckily she didn’t go low.  With the help of a lot of experienced athletes, we were able to manage her diabetes and she kicked butt!  And then when she took on her second triathlon she took second in her age group!!
  4. Gave herself her first shot.  Getting several shots a day is daunting but being 9 years old and GIVING yourself a shot is on an entirely different level.  It took a while for her to muster the courage to pierce her tummy skin with that sharp object but she did it!  She was proud, I was overwhelmed with pride and sadness all at once.
  5. Started on the pump.  Kendal was excited for this day because it meant the end of multiple shots a day and the end of the nightly Lantus shot that stung so badly.  The day she got her pump she went to school and showed everyone!  She was so proud.
  6. Got the new Dexcom G4.  I’m including this on the list because it was an enormous step forward for diabetes management.  The accuracy, especially compared to the previous version, allows me to sleep at night.  It also wakes me many nights but I’m oh so thankful for that!
  7. Changed her first pump site.  Squeezing the “trigger” is not an easy task when the needle is piercing into your own skin but she did it.  I don’t even think she flinched.  She hasn’t wanted to do it again since but I think that’s simply because she wants me to handle all the “D” stuff whenever that’s an option.
  8. Started wearing the Dexcom on her arm.  She’s not ashamed.  She wears it on her arm for anyone to see.  Sure, she gets tired or the endless questions but she’s owning it!
  9. Started a new sport.  Kendal started doing gymnastics in November and was quickly moved up to “pre-team”.  A new sport means new diabetes routines and management.  Different exercises affect her in different ways.  She still goes low during most of her practices but  I’m getting better at it.  When it happens she just sucks down a juice and goes back out there.  It still amazes me how quickly she can down an entire juice!
  10. Full self management at school.  Kendal manages her diabetes at school all by herself.  I used to go in each day at lunch time and give her a shot but now that she’s on the pump she administers insulin on her own for lunches and snacks.  She also tests on her own.  That’s a big responsibility for a 9/10-year-old but she does it with endless grace, courage and confidence.

I’m so proud of her and of all the Type 1 kids out there.  They grow up so fast and have to take on so much responsibility at such a young age.  They simply amaze me.  And Kendal, I’m so unbelievably happy to be your mom.  Thank you for all that you are.

Classroom Treats

When my phone rang this morning I saw the prefix and I knew it was from the school.  Each time I get a call from that number, which is quite often, I pray I hear Kendal’s voice on the other end and not an administrator telling me there’s an emergency.  I answer immediately and breath a sigh of relief when I hear, “Hi mom”.  It was indeed Kendal.  “How much do I bolus for a donut?  50 carbs, right?”  She knows it’s around 50 carbs because this is the third time she’s called me with the same question in about two weeks.  I go into my usual line of questioning.  What kind of donut?  Does it have chocolate on it?  Is it covered in sprinkles?  What’s your number now?  I ask the last question just so I know how much this donut is going to wreak havoc on her system.  She responds with a very rushed, “I don’t know” which tells me she wants and answer now and doesn’t have time for all the tedious questions.  So, I quickly respond, “Forty carbs without chocolate, fifty carbs with chocolate”.  “Ok mom” and she hangs up.

Last week when she called with the same question her blood sugar was in the mid 200′s.  She didn’t tell me that, she simply said ‘I think I’m a little high’.  When she got home and I saw the graph on her Dexcom it confirmed her feeling.  Eating that donut, on top of being high means that her blood sugar will by high for HOURS.  High carbs on top of high blood sugar equals a high that’s a bitch to get down.

My first thought when I hung up the phone…why in the hell do these parents KEEP bringing in DONUTS?  I’m not claiming that I’ve never given my kids donuts before but when it happens three times in two weeks it’s no longer a “treat” it’s a common occurrence.

Last year my solution for this was to bring in a stash of a healthier treat so the teacher could grab one of those for Kendal.  I can no longer bring this treat in because it has peanut butter in it so her classroom is a “peanut free zone”.  I haven’t come up with another treat that fits the necessary criteria: must be able to keep for weeks, must be pre-portioned, must be somewhat healthy, must be considered “treat worthy” by Kendal.  This is not an easy combo.  And since we’re not 100% gluten free Kendal feels as though she can splurge and have the donut at school.

The best solution for Kendal’s health is to tell her she can’t have the donuts but that’s not the best solution for her overall.  One of her biggest struggles is feeling like she’s so different from the other kids so I have a very hard time simply telling her “no, it’s not good for you, you shouldn’t eat that”.  She hears that all too often as it is.

So, here’s my question.  Is it unreasonable for me to ask for some rules to be put in place to take my child’s health, as well as EVERY OTHER child’s health, into consideration?   Rules like, treats must have some nutritional value.  Or, treats should not contain more than 30 grams of carbs total, not per serving.  I’d even be happy with, if your treat has zero nutritional value then make sure it’s under 20 grams of carbs.  Because quite honestly, I’d rather her get a sucker that has 13 grams of carbs over a donut that has 50.  I’m not asking for perfection, just some improvement.

Allergies and medical conditions are on the rise and I wouldn’t be surprised if there are no outside treats allowed in the classroom in a few years.  Or, the list of requirements will be so long that it’s not feasible.  I can see the sign now: All treats must be healthy, gluten free, dairy free, vegan, peanut free, soy free, coconut free, yeast free, egg free, nut free, non-GMO and store bought.  Good luck!

Why don’t we just do away with classroom treats now?  Instead of treats, how about taking the kids outside to play a game.  Let the birthday girl/boy choose the game, make them the center of attention, give them a small prize.  I remember playing Heads Up Seven Up and Kickball in school and  I remember LOVING it.  I don’t remember a single treat.  I’m sure there are much more creative  and meaningful ways to celebrate birthdays than with a donut.

Diabetes Awareness Month

November is Diabetes Awareness month so Abby Bayer (@abbybayer) and some of her DOC friends came up with a Photo a Day to bring awareness.  As she says, “exposure is awareness is understanding is cure”.  I don’t know how may days I’ll have something that is relevant but here are the daily prompts:

1. Struggle 

It’s difficult to see the number of syringes that are stowed away in the sharps container under our kitchen sink.  I look at them and my heart breaks.  Kendal has had to endure so many shots and that is a painful reality.  Yet, at the same time, it’s a blessing. A blessing because it keeps her alive.

2. Prescription

This is a pic of the latest invoice we received for some of the prescriptions we had filled. It’s for Kendal’s pump and a few of the necessary supplies. It does not include any insulin, antiseptic wipes, unisolve, batteries, CGM, syringes, etc. Thankfully it also does not reflect what we ended up paying after insurance.  Thank goodness we have insurance and it covers most of what we need for Kendal.

3. Fingers

Today was an especially rough day on the fingers.  Her numbers ranged from 63 all the way up to 465, with a lot of terrible numbers in between.  I’ve tested her 14 times today, yep 14 finger pricks in one day.  I was shocked when I counted them all up, and we still have two hours left until the day is officially over.  Days that are this bad don’t happen very often but when they do, her fingers are sadly the least of anyone’s concern, especially hers.  Days like this mean she has felt bad for more of it than she’s felt good.  I just tested her 10 minutes ago and she was 193 but is complaining that she feels low so I’m guessing she’s dropping fairly rapidly.  I’m ready for this day to be over so I can try again tomorrow.  But for now, I just have to concentrate on getting her through the night with the best numbers I can.

 

4. Oops – Double oops, no picture with this one!

There are so many “oops” in diabetes management.  My most common one is probably miscounting carbs but I’m sure I’ll continue to get better at that as time goes.  My most shocking oops lately is when I forgot to bolus Kendal for breakfast.  There was nothing unusual about this day, except it was Halloween.  Of all days to do this, halloween was a bad coincidence.  I fed Kendal her usual banana and almond butter for breakfast and sent her off to school.  Around 9:45 it hit me.  I was shocked that I forgot.  I’d heard of people forgetting but I thought it was too routine to forget and so I was proven wrong once again.  I immediately called the school and calmly told Kendal what I did.  I told her to test and to adjust accordingly.  “Ok, mom”.  I told her I was really sorry.  “Ok, mom”.  I told her if she had any questions to call me.  “Ok, mom”.  She was unfazed and really just wanted to do what she needed to do and get on with her day.

5. Bullseye

When I think of bullseye I think of two things.  When Kendal’s BG is 100 (Hundy!) and when her CGM matches her meter.  There is actually a website dedicated to the hundy, onehundredbg.com.  I take Kendal’s picture when she’s 100 just for something fun and I’ve even posted to this site once.  She thinks it’s cool and anything that makes diabetes fun, we will do!  Then there is the rare occurrence when her CGM matches her meter.  That is also kinda fun because it’s down right shocking!  I don’t expect them to ever be the same and I know that if they are the same that one is actually wrong…that’s crazy diabetes management in a nutshell.  But it gives us the opportunity to laugh and take a pic!

 

Diabetes Online Community

Apparently November is Diabetes Awareness Month.  I know this from many of the people I follow on Twitter.  Twitter still fascinates me and I’m not sure what is “acceptable” and what is not.  I really feel like I’m an outsider looking in, especially when it comes to the Diabetes Online Community, affectionately known as the DOC.

The DOC is a group of people that either have diabetes or are parents of someone with diabetes.  It seems like all these people know each other and I’m looking on their “club” but I’m not sure if I should or even can join in.  It’s certainly a club that I never wanted to be a part of!

The great thing about this group of people is that they share, openly and honestly, and I’ve learned so much from them.  They’ve made me laugh and cry and mostly they make me feel like I’m not the only one feeling the way I do.  I read their posts and swear they read my mind, wrote my words, felt my pain.  When I’m up two, three, five times a night checking Kendal’s blood sugar I know that I’m not the only one.  When I hold my breath waiting for that number to appear, I know there are other parents out there doing the exact same thing and the exact same time.  And when that number appears and I either breath a sigh of relief or sadly pick up my phone to set an alarm to recheck in an hour, I know I’m in good company.  I’ve never met these people and I’ve interacted with very few of them but they’ve been there for me.  They’ve taught me so much.  And they don’t even know me.

So, thanks DOC.  You people rock!  Keep on doing what you’re doing.  I truly believe Kendal and I are better off because of you and maybe as I learn more I can someday pay it forward to someone out there that is new to the club.

Inspiration at its Best

This summer Kendal had the opportunity to participate in an amazing program through Insulindependence.

I had heard of the organization prior to Kendal being involved but didn’t really understand what they did.  In a nut shell, we were told that Kendal would be paired with an adult athlete who also has Type 1, they would coach her and then Kendal would compete in the Boulder IronKids triathlon and the coach would compete in the Boulder 70.3 Ironman the next day.   I remember getting the email from Gear (husband extraordinaire) telling me about it and asking if I thought Kendal would do it.  As much as I wanted Kendal to want to do it I had my doubts.  I had already told her that she HAD to do swim team and she was not thrilled about that.  I think she was partially scared, due to her diabetes and fear of going low, and very opposed to getting up early every morning during the summer.  But when I asked her about this program she was thrilled.  She said she REALLY wanted to do it and when did she get to meet her coach!

Kendal was quickly matched with her coach, Rachelle, and we had our first phone call.  It was decided that Rachelle would call each week, talking with me, Gear and Kendal one week, and then just to Kendal the next.  Rachelle was like clockwork, never missing a call and I was so thankful for her dedication.  The calls between Rachelle and Kendal were fascinating.  Kendal isn’t much of a phone talker yet she would chat with Rachelle for 20 to 30 minutes and sometimes longer.   And she would actually talk!  They talked about training, blood sugar levels, how things are going, what she was afraid of, what she liked best, how to handle lows while training and I’m sure many more things.  I didn’t listen in on the conversations but I sure wanted to just to hear what Kendal was saying.

This went on for several weeks until the weekend of the big event. All the coaches (Captains) and the kids (Jr Captains) and their families gathered in Boulder for a long weekend of activities, discussions, the kids tri and the 70.3 tri.  And this is where I saw magic happen.  The first bit of magic was at the first dinner when she was surrounded by kids and adults that all have diabetes.  Most of them were wearing insulin pumps, many wore CGM’s, and they all tested their blood sugar before dinner.  This was magical because in that room she was “normal” again.  She was just like everyone else. Gear, Payton and I were the ones who were different.  She stood in the middle of the room and got a shot and no one stared.  No one asked if it hurt and no one grimaced as the needle pierced her skin.  She stood there unafraid and proud and confident.

Then there were the endless magical moments with Rachelle.  It’s hard for me to put into words how much Kendal gained that weekend and how much I admire, respect and THANK Rachelle.  She is my hero and I will always love her for giving so much to my sweet little girl.  There is only so much I, as a parent, can to do instill diabetes confidence.  Rachelle was a walking example of it.  She talked to Kendal about diabetes with ease and knowledge and without fear.  She was not guarded about Kendal’s diabetes or about her own.  I felt I could ask Rachelle anything and I know Kendal felt the same way.  When Rachelle had a high blood sugar she shared it with Kendal, and anyone else, it didn’t matter.  She corrected it and moved on.  It’s just a part of the disease you deal with, it happens to everyone, there is no shame in it, it’s no ones fault.  All the things I tell Kendal, Rachelle exuded.

One of the best moments is when I asked Rachelle if Kendal could watch her do a pump site change and she happily agreed.  We met Rachelle in her room and with ease, confidence and without modesty she showed Kendal how to insert the pump infusion set.  Then she  did her CGM sensor.  Kendal and Rachelle have the same CGM but Kendal hadn’t been wearing hers much because she was quite afraid of insertion process.  She would also ONLY wear it on her stomach.  Rachelle got everything ready and attached in about 2 minutes and in her back side.  No tears, no fear, no deep breaths just quick and easy and it’s over.  It gave both Kendal and I a whole new perspective…diabetes with confidence.

Then there was the event itself.  That day Kendal became an athlete.  She was told she’s a good runner by multiple people and now she likes running.  She finished strong so now she’s a triathlete.  She passed kids on the bike  and in the swim so now she’s a cyclist and a swimmer.  She was inspired and now wants to do more.  It was magical. The next day Rachelle competed in the 70.3.  It was a long, hard day for her competing at that altitude and without much training since she recently injured herself but she showed Kendal how to persevere.  She showed Kendal what it means to be TOUGH and to never give up.  We all watched Rachelle finish and then go directly to the medical tent.  The mom in me wanted to go in with her, to protect her, to make sure she was ok, to ensure the medics were giving her the attention she needed.  She had given Kendal so much I wanted to be there for her to somehow repay her in some small way.  Instead, I remained outside the tent, assuring Kendal that Rachelle would be ok.

Rachelle emerged looking beat up and tired but still smiled when she saw Kendal. Rachelle chatted with her as if she were feeling like a champ (Rachelle later ended up in the hospital but was able to go home after they got her hydrated). We all then went to the Insulindependence tent while Rachelle got a little to eat and that’s when Kendal asked if we could go home. We’d been in the hot sun for about 10 hours, without a single complaint from Kendal (which is a miracle in itself). This meant it was time for goodbyes. If you know me you probably know I’m not good at goodbyes and I’m not good at public displays of emotion. So, in my normal “lets make it fast” kinda way I announced that we had to go. I gave Rachelle a quick hug and tried tell her how grateful I was but I knew I would start sobbing uncontrollably if I stayed too long, or if I even looked into her eyes. I think Kendal and I are a lot alike in this way because she did the same thing.

Since that weekend Kendal has blossomed. She wears her CGM most of the time now. She’s not afraid to put the sensor in her back side. She started giving herself her own injections. She completed another triathlon and she decided it was time to start using a pump. These are all HUGE steps that all happened since Rachelle. It is no coincidence and I am so thankful that Insulindependence brought Rachelle into our lives. When Kendal reaches one of these milestones she so often says, “Mom, you should text Rachelle”. And since I can never say it enough, Thank You Rachelle. You are my hero.

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Payton

Payton, you impress me every day, every single day. When you heard about the triathlon you decided to do it as well. You had to do twice the distance as Kendal and even though that is impressive that is only a small part of what makes me so proud of you. You were incredible this entire weekend. You make friends so easily, adults and kids alike. You participated in all the events and always had a smile on your face, even during some pretty tough times in the triathlon. You spent hours cheering everyone on and you are always thinking of others and how you can help them. And I’m not the only one you impress. It is not a rare event for other parents to tell me how incredible you are. Teachers tell me the same thing. As you grow up you will continue to wonderful things, I have no doubt of that.

Payton finishes the swim!

 

 

Back on Insulin

I knew it would happen sooner or later, I was just hoping for later.  We noticed Kendal’s numbers creeping up and I knew in the pit of my stomach that the “Mother of all Honeymoons” was coming to an end.  She started waking up with numbers in the low 100′s and then in the mid 100′s and finally in the high 100′s.  Snacks of fruit and nuts that normally didn’t raise her made her high.  The exercise that used to drop her extremely quickly wasn’t having the same effect any more.  So on April 24, 2012, exactly a year and a month after diagnosis we put Kendal back on insulin.

Kendal also knew this would happen eventually and she knew that when it did it wouldn’t be in any way any fault of her own.  She knew this, I knew this but it was like being diagnosed all over again, as least for me.  I knew it was the end of AMAZING numbers.  I knew she would have many more highs now and many more dangerous lows.  I knew as difficult as it was to eat a low gycemic diet and avoid high carb meals that it would be harder to see my precious little girl with blood sugar levels that are just NOT healthy.

And even though I knew it would happen eventually I was secretly (or not so secretly) hoping I was wrong.  After seeing a string of absolutely perfect numbers, for days on end, I dreamed of a mis-diagnosis, even though I knew that was ridiculous.

When Kendal was diagnosed I heard over and over again that it gets better after a year but for us it was as if we had to start all over again.  Kendal had to have that “first” shot again and asked, “Mom, do you remember how to do this” and I had to fake a whole lot of confidence and answer, “Of course I do”.

You go through a grieving process when you’re faced with a diagnosis such as this and I felt that we had slogged through many of the stages and then got knocked back to the bottom again.  But I also know that we’ll get through this.  Kendal is an amazingly tough kid and she will once again rise to the occasion and she will kick diabetes butt in the best way she can.

Kendal and Payton

Now here is the real truth, this post is dated May 2012 but I actually wrote it today, September 10, 2012. I took a break from writing to you, a six month break in fact. I never stopped writing “in my head” but that doesn’t accomplish what I wanted from this blog in the first place. It was hard on me when Kenz had to go back on insulin.  But now I’m going to go back and touch on some of the important things that happened over the past six months that I don’t want you to forget, times that you’ve amazed me, some bad times that were significant to our family and some wonderful times too.

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