The New Normal

As we are almost to Christmas, we have been embracing a new normal.  The pump is here.  With it comes a new process of guessing, checking, not sleeping, and embracing the change.

None of these things are ever easy for me.  But our girl is a trooper.

We went to the pump class on Tuesday, and Kaelyn embraced the pump and was completely unphased by the injector. That was a blessing.

We waited out the days and watched her numbers ebb and flow as well allowed the pump to make corrections and bolus her.  (Bolus is giving insulin to cover food or corrections in addtion to the underlying basal rate.)

Trusting that the computer knew more than me was a little strange...and I had a hard time letting go of the control that I felt I was gaining while on shots.

Kaelyn LOVES the fact that she can check her blood sugar and give inslin all via the PDM.

I am excited for her.

The first site...it failed.  Started leaking insulin, so ten minutes before girl scouts we were doing our first pod change.  Luckily...it was a piece of cake! :)

The next 3 days went well. We did our next pod change today, and that one was a cinch as well.

The numbers...those are not so stable.  And me on sleep with wake up alarms every three hours is rough.  But...

I am thankful.

For insulin that keeps my girl alive.

For technology that takes her off of shots!

For friends who have walked this road ahead of us and with us.

For a God who is bigger than all of it!

I caught myself choked up yesterday as we let the girls throw coins in a wishing well.

They each had two wishes...

And separatley  they both wished for:

1.  A cure for Diabetes
2.  A fun Christmas.

1.  A cure for Diabetes
2.  A good birthday for daddy.

Shouldn't 7 and 10 year olds be wishing for puppies and toys and stuff like that?

I am thankful that they are optimistic.  I am thankful that Kathryn loves Kaelyn so much that she is hoping for a cure as well!

We are praying for a cure...and we are adapting to our new normal...adapting one day at a time!

We Ordered the Pod

Kaelyn has been doing a few test runs with the pod, and today we ordered it!

She has been waiting since the day of Dx for a pump, and was VERY disappointed when they wouldn't let her leave the hospital with one.

She's been waiting patiently, and she is handling the shots well, but she can't wait to be on the pump.

Here are a few reasons why we chose the Omnipod:

1.  Tubeless!  In other words, NO strings attached.

2.  24 hour pumping!  No disconnecting for showers, sports, swimming!  Yay!

3.  Very easy site changes.  The PDM guides you through all of the steps, and aside from filling the reservoir with insulin and sticking it on, it thinks for us!  Fill it up and stick it on!

4.  A smaller one is in the works:  33% smaller will make it even better!

5.  A menu of food items:  Many common food listings are built in!

6.  Freestyle Test strips! These strips use very little blood, and are the ones we are currently using and we love!

7.  Discreet or Not: It can "hide" under clothing or be worn with a swimsuit.  And we found COOL peelz that cover the pod and make if fun!

8.  Did I mention that there are no tubes?  :)

We'll see how it goes when we get the pod pumping, but for now, I have a happy girl, and for that, I'm thankful!

Soccer time!

My girls!

HOW GOD SELECTS THE MOTHER OF A CHILD WITH DIABETES
by Erma Bombeck
Most women become mothers by accident, some by choice, a few by social pressures and a couple by habit. Did you ever wonder how mothers of children with diabetes are chosen? Somehow I visualize God hovering over earth selecting his instruments for propagation with great care and deliberation. As he observes, he instructs his angels to make notes in a giant ledger.
“Armstrong, Beth, son. Patron Saint Matthew.”
“Forrest, Marjorie, daughter. Patron Saint Cecilia.”
“Rutledge, Carrie, twins. Patron Saint Gerard. He’s used to profanity.”
Finally, He passes a name to an angel and smiles, “Give her a child with diabetes.” The angel is curious. “Why this one, God? She’s so happy.”
“Exactly”, smiles God. “Could I give a child with diabetes to a mother who does not know laughter? That would be cruel.”
“But has she the patience?” asks the angel.
“I don’t want her to have too much patience, or she will drown in a sea of self-pity and despair. Once the shock and resentment wear off, she’ll handle it. I watched her today. She has that feeling of self and independence that is so rare and so necessary in a mother. You see, the child I am going to give her has her own world. She has to make it live in her world and that’s not going to be easy.”
“But Lord, I don’t think she even believes in you.”
God smiles. “No matter. I can fix that. This one is perfect. She has just enough selfishness.”
The angel gasps. “Selfishness? Is that a virtue?”
God nods. “If she cannot separate herself from the child occasionally, she will never survive. Yes, here is a woman whom I will bless with less than perfect.”
“She does not realize it yet, but she is to be envied. I will permit her to see clearly the things I see…ignorance, cruelty, prejudice…and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life because she is doing my work as surely as if she is here by my side.”
“And what about her patron saint?” asks the angel, his pen poised in mid air. God smiles. “A mirror will suffice.”
~By Erma Bombeck

"I Hate Diabetes"

Yesterday while Kaelyn and I were out and about, she had to do a finger poke before she ate.  She very casually said, "I hate diabetes." 

It struck me.  She's been a month into this journey, and for the most part, she handles it non chalantly.  In one month she's gone from crying over a finger poke, to learning how to count carbs, take shots, and evern GIVE herself her own shots.

She truly is a rock star. 

She NEVER complains.  That comment, spoken so innocently from my seven year old superstar, was so sad to me.  She didn't say it in anger, or in spite. It, like so much of this process, just is. 

We talked for a minute about how I hate it too, but that in spite of diabetes, we can embrace life and be thankful for the blessings we have.  It was such a grown up conversation in so many ways, and yet such a profound statement of how she truly feels. 

She is willing to take it in stride, but deep down, she, like me HATES diabetes. 

We are praying for a cure!  But until then, we will live life to the fullest, in spite of diabetes...

Even if we do hate it.

Diabetes

My roo and the roo

Llamas with mama!

"The Honeymoon!"

Today we officially entered "The Honeymoon".  We were warned of this process in the hospital, and even with that warning, it hasn't made the last couple of days any easier.

Diabetes is a roller coaster of emotions.  It is DEFINITELY a constantly changing disease that sends us up and down figuratively and in actuality.  Kaelyn's pancreas has decided it would wake up again.  In type 1 diabetes, the pancreas is about 80-90% damaged at the time of diagnosis.  Often, people will have a time where they need less insulin than before, and this is called the honeymoon period.  During this time, Kaelyn's body is producing some insulin again.

Well, for Kaelyn, this has come about rather suddenly. In the past three days, she has not needed any insulin to cover the carbs in her food.  This may sound like GREAT News, and I guess in some ways it is. 

But...

I like routine.  I like to follow the rules.  And what I'm learning in this process is that diabetes doesn't really follow the rules.  Kaelyn is now running very low, and we're adjusting her morning Lantus dose to see if we can even her Blood Glucose levels out again.  Lows are scary to me at this point.  Especially at night.  She is pretty good at monitoring them during the day, but at night it's hard for all of us.

This honeymoon may last for a few days, a few months, or maybe even up to a year!  They warned us in the hospital that there would be days where we would think maybe she was misdiagnosed, maybe she's cured.  I have to admit those thoughts have surfaced in the last two days.  God could heal her.  I know that, but I also know that at this time there is not medical cure for diabetes.  I can tell you this has become our prayer! 

At this time, Kaelyn may suddenly need more insulin again, or she may not need any or very much for a while. 

We are just getting the process of giving insulin, testing levels, figuring out corrections and figuring out the insulin needed to cover the carbs she is eating.  This process alone has changed 6 times in the two and half weeks since she was diagnosed.  (Not a good fact for a routine person like me!)

Now, she's running low, waking up low, and we aren't sure if this is a temporary time frame, or if this will be another new normal for a while.

We know that eventually her pancreas will stop producing insulin completely.  This is the sad reality of Type 1.  This is why we need a cure.

Until then, we will try to embrace each moment as it comes, and pray that we have the knowledge and flexibility to adapt to another change.  For today, we're thankful for less shots, and hopeful that her numbers will be more even again. 

Kaelyn is easy going, and adaptable.  I guess I need to take a lesson from her.  She is definitely taking it all in stride...I need to choose to take it one day at a time too.  I will try to embrace the honeymoon.

My girl!

Blessings in raindrops...

As I sat in the hospital two weeks ago taking in the new diagnosis, I was scared, angry, and confused. I lay awake waiting for the next time the nurses would come in to check on Kaelyn.  As I prayed, I was reminded of God's faithfulness.  In the midst of the pain, I realized that He was continuing to take care of us. He was continuing to be amidst the details of our life. 

Here are a few ways we saw His hand at work....


We were squeezed in to see our pediatrician on her lunch break.  She has loved Kaelyn since she was born, and with tears in her eyes, she shared the diagnosis.  I am so thankful she was there, and that we were not seen by someone who did not know us.

As we entered the emergency room of the huge children's hospital, the room was EMPTY!  There was not a single other child or parent in the whole place.  This spoke volumes to me.  God knows how much I struggle with anxiety, and provided a warm welcome with two workers behind the desk who were waiting for us, and a quick trip to triage.  We were quickly brought into our own room in the ER.

My sister was in town.  She is often gone, and was not only in town, but able to come and see us in the ER while Kaelyn was starving and wanted Aunt E!  This was such a blessing.  And she brought me dinner too!

God has provided two good friends who are in the trenches with their own daughters in dealing with this disease. They have fielded many calls, covered us in prayer and spent time answering question after question.  It's amazing how God has allowed our paths to cross, and how He knew.

Kaelyn will not be the only type 1 diabetic at school next year.  Out of 20 kids, there will be two of them walking this road together.  I would not wish it on anyone, but I am thankful my girl will have a pal who "gets it".

The day of Kaelyn's diagnosis was the beginning of the ONLY week this summer that we had NO plans, no trips and no commitments.  God provided us with our own doctor, and thankfully she didn't get sick when we were galavanting around the country. 

We have all summer to get acclimated to our new normal.  Both of us our off, and we have time.  Time to process, time to grieve, time to learn, and yes, even time to play.  Thank God!

Kaelyn has an incredible mind, a determined spirit, and is willing to go through the process.  She doesn't like it, but she's willing to accept it, allow it to become a part of who she is but not define who she is.   She is an amazing kid.  I wish I had half of her courage and strength. 

We were blessed with some of the most beautiful fireworks I have EVER seen.  We watched them right from our hospital room.  They were incredible!  It was a wonderful memory!

At Vacation Bible School this week we learned that No Matter What...TRUST GOD!  I think it's amazing how God used that week with kids to remind me that He is worthy of our trust, and still on the throne!

I continue to be scared, confused, and at times overwhelmed.  But God has shown me His blessings in our trials.  I am thankful for His gifts in each day.

My 40th Birthday!

Breakfast in bed!

I love these girls!

A walk around Seattle with dear friends!

A beautiful view!

Kaelyn asked if it was called the Old spaghetti factory when I was little! 

Kaelyn is 7!

The Great Wolf Lodge!