5/24/2011

holy information overload, batman!

My. Brain. Is. Fried.

Yesterday Ellie, Dave and I attended an insulin pump class.  Insulin Pumping 101.  Three and a half hours of T1D fun!  Thanks to the Diabetic Online Community I was able to sail through most of it with a nod of the head and minimal note taking.  I loved that I knew so much because all of YOU have shared your stories.  What a blessing!

We went into the class a little biased.  Okay, a LOT biased.  We had already ordered the OmniPod demo pod off their website and Ellie wore it for 2.5 days, declaring it 'awschum'.  Going tubeless is Ellie's main criteria for an insulin pump and we are 100% in support of her choice.  

Part of the class, however, was meeting with and listening to a demonstration from three major pump companies.  Minimed, Animas and OmniPod were set up with impressive information booths and each brought a large sampling of their pumps and accessories.  We were able to get our hands on the pumps, practice a bolus and push as many buttons as we wanted.  The Animas rep even encouraged the participants to try out their infusion set.  Ellie and I stepped right up and offered up some skin (my arm, her tummy) to attach some tubing.  Ellie and I both found it to be pretty painless, but after an hour or so Ellie wanted that thing OFF!  I told her she needed to give it a couple of days in order to truly compare it to the OmniPod if she wanted to move on to a saline trial with the Animas.  She didn't have to think twice . . . . . she ripped that inset right out.

Our timeline for the insulin pump is as follows:

* Early July - one week of saline trial with the OmniPod (the pump will be filled with saline water so we can practice using the pump with a safe(r) learning curve.  Injections will continue during the trial)

* Mid July - place the order and wait (cross fingers and toes) for insurance approval

* Mid August - receive pump and schedule appointments with the Endocrinologist to begin first stage of pumping with insulin

* Late August - follow up appointment with Endo to learn more specifics about using the pumps full functions

* Early September - pumping for realz!!!!!

We have been told by the diabetes educators, as well as actual pump users we know, that the beginning stages of using an insulin pump are comparable to the first few weeks of diagnosis.  Knowing this, we are still full-speed ahead with the pump process.  WHY?  Because Ellie wants one.  Simple as that.  This is HER T1D and we will allow her to call the shots (hehe, get it?  Totally punny) when it is appropriate.

Speaking of being newly diagnosed, Ellie came home today with a big pile of end-of-the-year crappola school classroom memorabilia.  Most of it went into the recycling bin or into her room to 'play school' this summer (Hahahahahaha.  yeah, she's a gluten for punishment . . . . just wait until homeschool!).  One piece, however, is going in my SAVE FOREVER pile. 

It is a paper pendant, decorated on the front with school colors and designs, and the back is filled with personal GOALS for the 2010-2011 school year. 

I smiled as I read what she goals she had for herself last September. 

But, I cried when I looked at the photo. :


This was Ellie taken a week or two before her T1D diagnosis. 

How did I not see it?

My baby was starving . . . just look at her collar bones.  Her eyes are sunken and lined with shadows.  Even her hair is limp.  It is hard to see in this fuzzy copy, but her eyes are dull.  Ellie NEVER has dull eyes.  Her eyes sparkle and shine and glitter . . . . always!

My baby was sick and I had no clue.

I try to keep upbeat, positive and forward-moving; (WYKBYDB = when you know better you do better) which is why I didn't dedicate an entire blog post to this photo.  I could have.  It would have been filled with grief and hatred and naughty language.  What mother wouldn't be angry at a disease that does this to their child?

I am angry . . . but I am mostly grateful.

Grateful for all the tools available to treat T1D.

Grateful for all the information available to tailor-fit a plan for each family.

Grateful to have health insurance and the ability to pay for all Ellie's medical needs.

Grateful for all the friends I have gained through a wonderful online community.

Grateful for my family and how each and every member plays a supportive role.

And, when my baby girl is crying in her bed last night because; "Today was just too much, Mom.  Too much of a reminder that I have diabetes and I am different."

On a night like that I am most grateful I can bend down close to her ear and tell her I am grateful for a God who promises a purpose, a purpose greater than we can ever comprehend.  And when we feel like we just can't handle not knowing?  He promises to never leave us and will carry the weight of our fears in his all powerful arms.

My brain may be fried, but my heart is filled with gratitude.

12 comments:

Jules said...

good luck with the pump. it seems like such a realistic time frame.

Heidi / D-Tales said...

I'm excited for you, and I'm so looking forward to reading more about your experiences with the OmniPod.

My kids came home with crappola today. Lots and lots of crappola. "Ms.H told me to take this home." Thanks, Ms. H! We really need this stuff!

That picture brought back memories for me. I remember Jack's eyes looking like dull and sunken with big circles underneath.

"Too much of a reminder that I have diabetes and I am different. -- Oh, sweet, girl! Comments like that are heartbreaking, but it sounds as if you knew just right words to say to comfort her.

Denise aka 'Mom of Bean' said...

WooHoo for the coming of the pod!

We lucked out and didn't get a huge pile o'crap from the end of school...although there is still a pile that needs to be 'sorted' and 'filed' in the recycle bin!

That picture gave me chills.
I was scrolling through the pictures on my phone the other night and came across one of Bean the week before she was dx....same collar bones, same lack of gleam in her eyes. I didn't see it then, either....sigh.

I am so thankful for a God who has a plan...even when I don't understand or like it. Trusting Him is the only thing that gets us through sometimes!

Reyna said...

First off I am so excited for you guys and your timeline. It must feel good to have a plan lined up.

And...I admire your attitude Amy. Your gratitude and positive nature lifts so many. Thank you for that...and the end...the last paragraph...beautiful.

Love to you and your family today.

Roselady said...

Loved your post today.
Let me just say, the first thing I thought I read was "We went into the pump class a little bit blasted." Which, I thought was slightly strange, considering the seriousness and medical component. But, alas, I read wrong.
Second, you know that I feel the same way about the omnipod.
Third, talk about info overload, you're write. That's why my posts have been short this week. I can't process anything else this week, since we started using it for real. The hard stuff is now under my belt, but I haven't even organized my thoughts yet to write about our first week pumping.
Fourth, they kind of drew out the process for you. We ordered our pump. Met with our cde, filled the pump with saline and three days later were on. I wonder why they are making you do it over months? Maybe it fits your sched better, though. I mean, there is a learning curve -- but it didn't take that long.
Fifth -- don't you love a five point comment -- I think all of us think about those before and afters of our kids in photos. We see a photo taken shortly before diagnosis and think about what they were going through and how we had no idea. Something so major going behind the scenes, and we had no idea. And, then, sixth -- no, not really!

Jessie Bosley said...

I love you so much Amy! I'm so proud of you and how you have taken this disease and made the best of it! Ellie is lucky to have you n Dave to teach her this is NOT a road block but a journey to embrace!!!! Your words are beautiful and comforting...

Jenni at talking hairdryer said...

Loving reading your blog...

sfincham said...

Love this post! I too look at the before pics and "see it". My Ellie uses the Omnipod too feel free to e-mail if you have any questions! sarajeanfincham@gmail.com
Loves!!!

Wendy said...

I love reading that you have have a time frame -- a plan -- a goal!!!!

I will pray that it all goes smoothly, and that the insurance isn't a hassle at all!

Blessing on the great, awesome, wonderful road ahead -- so much joy lays in wait.

Keep it up, my friend.

You're a rockstar :)

Football and Fried Rice said...

that girl has stolen my heart with her courage!! Ellie - we are all so proud of you - and so blessed to have you grace our lives - even a little bit!

Lori- The Incredible Mr. Sweets said...

Amy,

I somehow missed this post.

Good stuff!! I'll be praying too for the transition to pumping. I think being prepared for the beginning "ride" is helpful.

LOVED that last paragraph! Yes, it is painful to look back at those pictures (I feel that way about Joel's 2nd Bday pics!) but I am so thankful too!

Amanda said...

So great to read Amy...thanks for the uplifting thoughts. I have some of those pictures too...bleck!