Pump Anticipation

The surprising first words out of your mouth one morning a few weeks ago?

"I wanna pump."

What?

Seriously?

How in the HECK do you even know what that is?

Sometimes I think your spirit just knows what to tell me,

knows what is best for your little body.

You have to voice it to knock me upside the head and get me to listen.

We had done the saline trial, but it was the same horrific weekend when you ended up in the ER with the stomach flu.  Needless to say, it wasn't a great trial.  BUT, you were introduced to it and Dad and I at least were convinced that you wouldn't yank it off and pull the site out every two seconds.  In fact, you were amazing with it. 

So we ordered one.

Supposed to get it on Nov. 20

So why is it that I'm having such a hard time with it? 

One mom I met said having her T1D child attached to a tube all the time just screamed, "Sick kid here!"

That sort of stuck with me.

Not sure I like that idea. 

Especially when I'm trying SO hard to allow you to live a "normal life". 

I don't want the curious eyes and the pity of strangers.

Because I don't want you to be labeled.

Ever.

"The sick one."

"The one who could suddenly go into seizures or a coma if he doesn't eat enough."

"The one who has to be pricked every 20 min if he runs around at the park with the other kids."

I don't want any of it.

But it is when you voiced your desire, (whether or not you fully understood that desire at 2) that I realized that it's not about me.  And it's not about those curious, pitiful eyes.

It's about you.

What is best for you.

I am taking a jump and hoping it is the pump.

My hope is that it will help level you out from having such outragously fluctuating numbers.

That it will allow me to bolus in such minute increments that you can eat virtually anything.

Grazing will be allowed again! Imagine! (withing reason of course)

I won't have to turn down the Smarties offered to you by the grocery story clerk, making both she and I feel horrible when I have to explain that you have diabetes--I'd just simply type in the carbs! Wallah!

I can bolus you through a remote without you even knowing-Ha! Amazing!

Best part?

No shots.

Because lets face it, although you are great with them, you also hate them.

And so do I.

So here's to another change

only months after the drastic change of diabetes has brought to our lives.

But can we wait four weeks?

How many more shots between now and then?

Only 140-ish

We can do it, right?

Until then,

let's both find patience with the pokes!

Your Reflection

The other night, as I was getting you ready for bed, I was preparing to wash your hands (anticipating the middle-of-the-night checks).  You seemed to be in a good mood, as you usually are.  I lifted you up to the sink and turned on the faucet.  You looked at your reflection in the mirror, then out of the blue, you said, "Diabetes."  It's a word we've practiced with you only a few times, but I was shocked to hear it come out of your mouth, especially with your limited 2-year-old vocabulary and ability to form words.  

Immediately my heart sank.  It ached with sadness once again.  

It begged the question: Is that what you see when you look in the mirror?  Is it the disease?  Or the boy?  

My challenge is (and will continue to be) raising you in a way that you will see so much more than diabetes when you look at your reflection.  I hope you will see a confident, active boy.  A boy like every other boy, able to do anything you put your body and determined mind to.  I hope you will see the boy who loves cars,  Buzz Lightyear and every other Super Hero, a boy who loves to swing, blow bubbles, swim, run and mimick everything his older brothers do.  I hope you will see beauty in God's creation of your body, ever-grateful to Him that you have a healthy body thanks to the advances of modern medicine, again provided by Him who knows and loves you dearly.  I hope you will see that you are my son, a brother, a grandson, a cousin, fitting into this family perfectly, like every other child.  Above all, I hope you will see Ty, a boy who is loved like crazy, by everyone around you.  

Because you are.  

So, Ty, please don't see diabetes when you see yourself.  You are so, so much more than that.

Please see you.

First sick day

I haven't written in a while.  I don't feel badly, however, because my absence here, on this blog, only indicates that my care for you has increased.  It had to. Diabetes has given us all a beating lately.  

I wouldn't want to relive the last few weeks for any amount of money in the world.  You got sick with the stomach flu.  It is something I've dreaded from the day of your diagnosis.  I've heard from doctors, nurses, and other moms of T1D kids how awful it is for a diabetic and it is something I didn't want to face until further down the diabetic road.  Much further down.  When I was a bit more familiar with the disease.  Didn't get so lucky.

Last week you started having diarrhea, then vomiting, then rather quickly your blood glucose plummeted because you refused to eat or drink anything.  I was scared, didn't know how to keep your levels up.  Grandma, being so knowlegable as a juvenile diabetic educator, kept close tabs and was always available via phone and told me to call her no matter what time.  She worried about ketones showing up in your blood, something I still know very little about.  So we started to test your ketones every 3 hours.  I took Grandma up on her offer one "night" at 2 a.m. when the ketone meter read 1.8.  She had informed me if it reached level 3, we'd need to take you to the hospital.  She also informed me that in order to get the ketones down, we needed to somehow give you insulin, which meant your levels needed to be at least 250 before we did that.  Since you wouldn't eat, getting you to 250 was a challenge.  Are you starting to see the frustrating cycle I was in?

The next day we were able to give you a tiny bit of insulin, which helped bring your ketones down.  By Saturday of last week, after struggling and begging for you to eat ANYTHING (you even said NO to candy, popsicles, donuts, juice, chocolate milk, you name it) we finally had to give you the Glucagon shot to bring your blood-glucose within range.  And not just one dose, but four!  This was all during the Race for the Cure so, unfortunately for everyone who came out to support us, I was rather distracted the entire time.

After we got home and saw just how ill you were, still not eating, we decided to call the nurse on-call.  She advised us to go to Primary Children's ER.  We grabbed a few things and headed down the all-to-familiar road to Salt Lake.  Halfway there, you broke out in a sweat and started whining, lethargically falling asleep.  I checked you.  136--so I let you fall asleep.  20 minutes later, after we had checked in at the hospital, I checked you again in the waiting room.  68.  That was a huge drop in just 20 minutes.  I was going crazy, anxious for them to give you an IV ASAP to get your levels up and get you hydrated, because I just didn't know what another 20 min would do to you.  As the nurse tried to find a vein, I remembered all too well the last time you were dehydrated.  I loathed that moment when you were 8 months and I still do.  Watching the nurse dig a needle through your tiny hand, trying to find a plump-enough vein.  After a failed attempt in one hand, she moved to the other.  More digging.  Are these people incompetent or what?!  Find the dang vein already!  I had to refrain from saying something (or fiercely socking her in the face) while you screamed in agony on the stretcher. They finally found one and started the IV with fluids and glucose. I could relax for the time being.  Your daddy was a great support for me.  Had he not been there, I'm sure my violent side would have shown herself.

We were in the ER observation room overnight, a bit more than 24 hrs.  I stayed, Dad went to be with the other kids.  I actually very much disliked this area of the hospital.  I felt like no one knew (or cared) about your diabetes.  I had to find my own juice when you were low (like 52!) and when you were, and I told them, they seemed to shrug it off and I didn't see my nurse for another 15 min. Yep, Mama Bear was not happy.  But, looking on the bright side, they did get you hydrated and injected you with some glucose water, you had a great nights' sleep.  So, I guess not ALL bad.  I was as anxious to get home as they were to send me, but on Sunday, as they were about to discharge us, I mentioned to them how I worried you still weren't eating on your own. They just told me to call with any questions.

Should have listened to my gut.

Monday was awful.  You were back to plummeting blood-glucose numbers, spilling ketones and still ingesting no carbs. I finally broke, sobbed, pleaded with not only you to drink, but also to God, that He would intervene. I had done everything I knew how to do and I simply couldn't do it anymore.  I had to put it into His hands. His sweet repose came through a dear friend, who dropped everything when I called and brought her kids and a huge bag of McDonalds junk food over.  I suggested if she bring her kids, peer pressure might do the trick.  I set out a blanket on our family room floor and tried to get you excited about having a picnic.  It did the trick.  You ate a fry!  Then you ate 2, then 3, then pretty soon you had taken a few sips of fruit punch and eaten quite a few fries and one disgustingly beautiful not-so-chicken chicken nugget.  It was enough to bring your levels up and allow both of us a much-needed afternoon rest.  I will forever be thankful to Ally for her actions that day.  It is because she ACTED that you were able to eat.  Those fries were a start.  So many others did so much that helped ease the burden.  Taking other kids while we are at the hospital, bringing in meals, or a gallon of milk to an empty fridge.  After that day, you slowly started to eat, regain strength and after a few days, we were able to dose your insulin regularly. 

These are days when I hate diabetes.  Your sick days will never be average.  A simple flu virus suddenly becomes life-threatening to you.  I'm emotionally spent.  Tears readily spill these days.  I avoid people.  I see the looming dark clouds edging closer by the moment.  I know those clouds, and they are not friendly.  At times I feel as if those clouds would swallow me whole.  They have before.  They've kept me in the dark place for quite some time.  Luckily I always find my way out.  I'm trying to fight them away, but my fight is feeble, my strength spent.  I don't want to go back to that dark place.  You know one thing that keeps them at bay?  It's your hugs that you so readily give.  You are the only child in the family who will gladly,willingly, seek me out for a long cuddle.  You know how to fold your little body around mine, to fit your limbs so perfectly in the crevices of my body.  It is healing and I love it.  To me it is heavenly.  Never stop. It brings peace to my limping soul, picks me up and helps me trudge on.

Ty-Ty, together we'll make it. 

Walk to Cure Diabetes

We have formed a team (Team Ty Ty) for JDRF's Walk to Cure Diabetes walk in just 4 weeks.  We plan to be huge advocates in helping find a cure, so this is just the beginning!  If you follow this blog, please donate and help us, if even a small way, to find a cure for this disease that does not rest.

Hitting breaking point

Where has my sweet, happy boy gone?

What used to be an inquisitive nature [regarding your shots] has turned hostile.  No longer do you remind me about your up-and-coming shots at meals.  Instead, you scream and say, "No shot!" Isn't it supposed to be that you are getting used to shots rather than hating them more as time goes on?

A few days ago, you REALLY wanted a fruit snack.  It was on a day when I was desperately trying to bring you down from a baffling 400-range.  I reached, instead, for a cheese stick.  Screaming and hitting followed.  You, my Ty, hit me in the face!  That is so not like you.  Mind you, your numbers have been wacko and you felt plain lousy, but you are starting to literally kick against this disease.  

I guess even you rotate through this ever-apparent grieving cycle.

Oh, my poor Ty.  How can I explain to you that what I'm doing to you every single day, several times a day, is good for you?  How can I explain that when I poke you, it is saving your life?  When will you be able to understand?  Until then, it breaks my heart to see you angry. But I know the feeling.  Believe me. There are days I wish I could kick, scream and punch something. But, we're partners and we have to help each other through this, right?

More and more, I'm hoping for that pump.  Then I can freely give you anything you want to eat as long as I enter in the carbs to your pump and guess what?  No shots!  The thought of it seems mind-boggling since that is what I do, at least five times a day right now.  We go to the pump class this Monday.  Maybe I can try to pull some strings with Grandma (and Dr. Awesome) to expedite the process--whaddya think?  You'd just have to promise not to pull it out of your site like I can so easily see a 2-year-old doing.  Again, undecided about the whole thing, but the idea of it sounds great.

Speaking of awesome Dr. Awesome, he called me out of the blue the other day, for no other reason than to offer encouragement. I'm so grateful for a caring doctor who knows and takes a personal interest in your welfare (and mine!). Your numbers have been all over the place, mostly high.  I consistently try to figure out what I'm doing wrong or what you ate only to come up with no real answers.  He adjusted your carb-ratio and told me we were doing a great job.  Sometimes toddlers just have crazy numbers, but I can't beat myself up for it.  I'll try to believe that.  Every. Single. Day.  I guess I need to stop trying to even you out and change as often as your numbers do.  So, daily. 

Change.  It's the only constant we know. 

First Endo Appointment

Yesterday was our first endocrinologist appointment and I didn't quite know what to expect.  I had heard things about this "A1C" and that a good level is to be right around 6 or 7.  Since your levels have varied from mid 400s to low 60s, I was expecting nothing less than about a 9.  Other than that, I didn't quite know what the doctor was going to tell us. 

Daddy came home from work early to go with us, so we got there a little bit late. As soon as we got there, we started filling out paperwork and you were weighed, measured and finger-pricked.  We learned you had put on about 4 lbs since being admitted to the hospital (see picture) only 6 weeks ago!  Dr. Donaldson told us your A1C came back at 8.8, average for your age being 8.5.  He felt like this was pretty good since it was also factoring in the time before your diagnosis.  Such a weird thing, really.  How can they get the average over the last 3 months in one drop of blood? Bizarre. And amazing really--how the body stores this information!

We reviewed questions and diet and then Dr. Donaldson surprised me by asking us to think about going to a pump!  Really?  I don't know much about them, but I'm just envisioning you yanking it out of the site or not wanting to wear it around your diaper.  It does sound appealing, however, to not have to give you 5 shots a day!  And I can control your blood glucose better by giving you tiny increments of insulin.  So right now I'm mixed.  I think Dad and I will attend the class and then decide from there. I do like the idea of having most of it paid for this year since we've reached our deductible/out-of-pocket with our insurance. Having just received the hospital bill yesterday (yikes!) this would be my strongest draw to the pump right now.

I asked Dr. Donaldson if getting you on a pump is even possible since you are in your honeymoon right now.  He entered "doctor zone" talking about beta cells and the pancreas and concluded with "it looks like he will be completely out of his honeymoon by the end of the year".  Got it.  What I didn't get was the sinking sense of sadness that started to settle into my stomach and travel through to tighten my throat and tingle my nose.  What was this?  I thought I was through with all my sadness!  Was I holding on to hope that your pancreas would halfway continue to work until it jump-started into full-functioning capabilities?  Maybe it was hearing the doctor say (in his doctor way) that part of my baby's body was dying for good.  And that I am completely helpless (as are all the best medical minds in the industry) in doing a dang thing about it!  By the end of the year, you will be 100% insulin-dependent.  I guess the ugly reality still rears up and smacks me in the face every so often.  I wonder how long that will last. . . .

Overall, though, little T, we (YOU!) are doing pretty darn good.  We are getting by and learning.  I feel like we are under great medical care and I trust the doctors and educators.  I still have hope every day that there will be a cure in your lifetime.  Until then, we battle.

New Household Staples

Man, you are one picky eater!  Gone are the days following your diagnosis when you'd devour everything in sight.  As soon as you gained all your weight back, you settled right back into being rather selective on what you put in your mouth.  That sure doesn't make my life any easier!  We've decided to see what it looks like you are going to eat and then bolus either during your meal or right after.  That way you don't "work the system" by not eating, patiently waiting for Mom to panic enough to stuff you full of FUN carbs like fruit snacks and ice cream in order to make up for your insulin dose.

Funny story:  Today I sat you down and as I got your lunch ready, you said, "Shot, Mom? Shot?"  Even you know the routine.

But we've learned a thing or two over the last month about what is convenient to keep on hand with your diabetes, new household "staples" if you will.   There are things to give when you are hungry (but too close to a meal to give you a shot) and then things like the 15-carb nightly snacks that we now need to keep on hand.  So, I've compiled a list on the new "regulars":

Cheese Sticks   --  give it up for a "free" food!

Hot Dogs  -- because those are your FAVE, and again, yay for free!

Juicy Juice 4 oz. boxes  --  these 15-carb juices have been a necessity for your lows!  I carry them in my purse, keep them close to your bedroom, take them in my church bag and keep them in the car.  It is also extremely easy to stick the straw in your mouth while you sleep when you have a low in the night.  Miraculously you start sucking--you know what to do even in your sleep!  And then after the low is addressed, I can sleep easy once again. Sort of. 

Skittles  --  an easy, fast-acting carb, something I used to never buy since I've always steered away from artificial flavoring and coloring, but is essential to have on hand to address lows.

Chicken Nuggets  --  This is a food I can almost always guarantee you'll eat, and since you are honeymooning, I rarely have to give you a shot depending on what they are paired with.

Individual packs of all-natural applesauce (no sugar)  -- these are great with any meal.  I feel like I'm giving you something healthy and it's easy to count for since it's pre-measured.

Strawberries and Watermelon  --  they are both low in carbs so you can have a good portion, provided you are actually hungry that day.

Grapes -- easy counting.  One grape=one carb. Nuff said. 

Soy Slender Chocolate Soymilk  --  You love chocolate milk, so this find was perfect!  It's practically free!  One cup is only 5 grams of carbohydrates so I can give it with your nightly snack and since it has protein in it, it will help hold your insulin through the night so you won't fluctuate.

Fruitables  --  I love these.  I found these years ago, but am buying them more now since I've recently realized they are only 7 carbs.  Yay!  I love them because they have fruit AND vegetable juices and puree so you are getting your daily servings of both.  And with a picky eater, these have been heavenly!  I give you one with each lunch and you love them!

Short list, right?  Told you you were picky. I'm sure the list will change as you do, but so far this is working for us.  The great part about it is your other four siblings aren't nearly as picky so they'll eat all these foods too.  In fact, they are rather excited that we now have food stocked in our cupboards and fridge.  Got to keep the baby happy, right?  Next post:  How to NOT spoil the diabetic, who also happens to be the youngest!  Yah, might need some advice on that one.