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.

One Month Later

One month anniversary. 

Though as I sit here, it seems pretty hard to believe. 

You are one month older.

Mom and Dad are unwillingly wiser

about this disease called diabetes.

30 days.

There have been many, many tears

panic attacks (for Mom)

over 100 insulin shots

highs

lows

never-ending record-keeping

and yet,

somehow we manage to find unscripted smiles

and frequent bouts of laughter.

Because try as it may

diabetes will never kill our spirit,

our love,

our determination to beat this thing.

Yes, there is no cure.

But that doesn't mean we will let it manage us.

We will never,

EVER

let it get the best of us.

Deal?

On a surprisingly brave day, I took you kids to Seven Peaks Water Park.

All five of you!

It was proof

that I can still do hard things.

And you know what?

It really wasn't that bad!

(I did have help, however, thanks to a good friend.)

Sure, I tested you about half a dozen times,

and your BG rode high the entire time for some baffling reason,

but we made it!

It was one small step forward,

hope for our future.

Wanna know the best part about the last horrendous month?

Watching how people have rallied around you,

particulary your older siblings.

Golly they love you.

Kendra has learned how to test your blood glucose level.

Alli has learned to count carbs.

Andrew will scoop you up and carry you to me when you fall.

And Colby, only five, has learned to watch for your lows.

One day as we drove in the car, Colby said with an edge of urgency,

"Mommy, Ty dwopped!  His wevows dwoopped!"

I looked in the rearview mirror to see you

drowsily drifting into a heavy sleep.

(He had clearly listened when we reviewed the signs.)

I knew I had just tested you and your "wevows" were fine,

but it brought a sudden lump in my throat

and tears to my eyes.

Like I said,

loved.

Now and always.

Diabetes or not

you are one special boy.