Thursday, May 30, 2013

A few quick things…

Eleanor: Channeling Taylor Swift

Thank you to Tom Karlya at Diabetes Dad for saying such nice things about our YouTube Channel, we promise to work on some new videos very soon to please our fan base.


We got a wonderful call this morning! Eleanor has been approved by our insurance for an Omnipod.  It should be on our front porch on Tuesday.  After that it's just a matter of attending some training at the hospital and then we're off and running.  This is a tremendous relief, as I was truly bracing myself for a denial.  The rep from insulet had as much as told me we were destined for denial.  She was half choked up too with the call, because she says she really does not enjoy calling up parents and telling them they've been denied.  So everyone had a good day today.


The boys and I went to Quest Diagnostics on Wednesday after Art Class.  (Actually Eleanor went too, we couldn't just leave her) but the three of us had blood drawn for TrialNet.  Caught a few moments of tawdry day time TV as long as we were there. :-/


Eleanor and her brothers are scheduled to appear on Good Morning Texas in the morning at 9:00 am on WFAA channel 8.  So, if you live locally, tune in.  If you are friends from afar, we'll link you up as soon as we can.

Bling on the Dexcom

We put some bling on Eleanor's Dexcom transmitter/sensor this time, but things are not going so great.  I also may have not done the insertion exactly right.  In either case, the receiver has been complaining on and off all afternoon.  Seems to have recovered and perked up for the moment, we'll be keeping an eye on it.


This has absolutely nothing to do with diabetes, but I'm reading aloud The Girl Who Fell Beneath Fairyland and Lead the Revels There to the kids right now, and it's an excellent work of fiction.  I highly recommend it!  It's the sequel to The Girl Who Circumnavigated Fairy Land in a Ship of Her Own Making, but the new one doesn't seem to have been added to the author's website yet, so I can only link you up to the first, which we also read, and which was also extraordinary.

Eleanor is beginning to get going with her non-profit org to raise money for Jerry The Bear.  We were very glad to learn that the application window for the Davidson Young Scholar Ambassador Program is June 1 through September 30, so we couldn't have timed it better, really. The purpose of the program is to foster learning and civic engagement through community service, volunteerism and leadership in highly motivated, mature and socially conscious Young Scholars.  She and I have already begun to fill in her essay questions on the application for the program.  If she is accepted, she will have access to two year training program.  It would be a tremendous learning experience for her.  She would attend online seminars covering such topics as Self Advocacy; Website Design & Functionality; Leadership and Ethics;  Fundraising; etc.  Fingers crossed that they have a spot for her!

Sunday, May 26, 2013

Introducing The Girl Glycosylated YouTube Channel!

Well, there's not much else to say!  We've got a new Girl Glycosylated YouTube Channel, and our first video is up.  You can expect more where that came from!

This is how to make Peanut Butter Trail Mix Balls from Dishing It Up Disney Style.

1 C  Peanut Butter
1 C Honey
3 C Old Fashioned Oats
1/2 C ground flaxseed
1 C mini chocolate chips
1/2 C chopped nuts of your choice
1/2 C dried fruit of your choice

So enjoy that! And watch for more fun on the channel. We'll keep you posted. 

Thursday, May 23, 2013

Third Times The Charm! Our Third Dexcom Sensor Insert Success

Today we did Eleanor's third Dexcom sensor insert.  It went MUCH better today, pretty smooth.  Here's what I did differently that made it better:

1. I didn't use a Tegaderm patch to hold the Lidocaine cream in place.  Last week, getting the
Tegaderm off her arm, with the adhesive pulling on all those little hairs was almost worse than the insertion.  Instead, I put the cream on a "nonstick pad" and then wrapped sense-wrap self adherent around her arm.  That's the red stuff in the photo.  It sticks to itself, but not to her.

2. I had a bottle of Uni-solve medical adhesive remover, and I soaked the adhesive on the old sensor in that before I tried peeling it off.  I kept using more as I peeled it off and that too went much better.  No tiny hairs ripped out of her arm.  She's way too little for waxing!

3. I remembered to pinch up the skin where I was pushing the sensor in.

So, yeah, practice makes perfect and we had no tears at all today.  Hooray!

And here she is playing on the playground earlier this week, Dexcom is on the Hello Kitty Lanyard around her neck.

Wednesday, May 22, 2013

Share the Love - a few of my favorite posts

Day 7 of Diabetes Blog Week:  Spread the Love - Sunday 5/19
As another Diabetes Blog Week draws to a close, let’s reflect on some of the great bloggers we’ve found this week. Give some love to three blog posts you’ve read and loved during Diabetes Blog Week, and tell us why they’re worth reading. Or share three blogs you’ve found this week that are new to you. (Thanks to Pearlsa of A Girl's Reflections for inspiring this topic.)

I read as many blogs as I possibly could this week, and I made an effort to comment on everything I read (because I know how much the comments mean to me, I like to pay it forward when it comes to comments)  I also have to point out that with only one or two exceptions, EVERY blog I read this week was new to me. (including my own ha!) Those that I had already stumbled across are, by default already wildly popular, and successful.

I admire those folks who keep on blogging even when they aren't overrun with comments and page hits.  They are blogging because they want to put the words down.  That's cool.  I like it.

Day 1: Share and Don't Share
Naturally Sweet Sisters

Day 2: The Petition
Adventures in Diabetes Parenting

Day 3: Memories
The Rockin' Ink Star

Day 4: Accomplishments Big and Small
Kailana Mama
Diabetes Dad

Day 5: Freaky Friday
Keep Calm and Carry On (KC & Co.)

Day 6: Diabetes Art
The Blue Heel Society

Wild Card 1: Dream Diabetes Device
Type ONEderful

Wild Card 2: Diabetes Wild Kingdom
Girl Glycosylated (totally cheating here, by listing myself, but seriously, Hedgehogs RULE! - besides, I chose more than 3 links, so it's all good)

So, I was a bit slow getting about it, but better late than never.

There they are!

Saturday, May 18, 2013

Diabetes Art: Day Six of Diabetes Blog Week

The Fourth Annual Diabetes Blog Week, Day Six: Diabetes Art

The Prompt:
This year Diabetes Art moves up from the Wildcard choices as we all channel our creativity with art in the broadest sense. Do some “traditional” art like drawing, painting, collage or any other craft you enjoy. Or look to the literary arts and perhaps write a d-poem or share and discuss a favorite quote. Groove to some musical arts by sharing a song that inspires you diabetes-wise, reworking some song lyrics with a d-twist, or even writing your own song. Don’t forget dramatic arts too, perhaps you can create a diabetes reality show or play. These are just a starting point today – there are no right or wrong ways to get creative!

Here's Eleanor's Diabetes Art Project.  She's making a chain out of all of her test-strip canisters, she's done it from the very beginning.  I think she just discovered that she could snap together the lid from one bottle onto the bottle of another, and before long the chain had grown quite long.  If you consider that every bottle represents 25 test-strips, (and 25 finger sticks) That's a LOT of test strips for 69 days.

We were having trouble keeping Eleanor's Dexcom receiver near enough to her to keep a reading going.  She'd walk off and leave the room and it would lose the signal.  We joked with her that "Piggie misses you!" She named it Piggie.  So, I put it in the wallet that came with it and attached a lanyard so she could wear it around her neck, and of course, she can clip it to her waist band if she has one, but this is a girl who likes to wear dresses.  So, I dug through my sewing stash and came up with this design.  I used clear vinyl on the outside of the pocket so we can push the button and check Dexcom without taking it off, and I used fleece on the side that touches her skin, for comfort.  I used soft comfort waistband elastic, the kind you'd find on underwear or pajama pants.   We liked the design so well, I bought some more comfort elastic… so the last picture is of "Diabetes Art Yet To Be."  

Fancy decorative elastic trim banding from
And finally… and perhaps most exciting.  Eleanor is working on some Diabetes Art in the form of music.  We just couldn't get it done in time.  Stick around, read the blog, and we'll have a diabetes musical parody video up for you very soon.

Friday, May 17, 2013

Better The Devil You Know…

Just like in the movie, today we’re doing a swap. If you could switch chronic diseases, which one would you choose to deal with instead of diabetes? And while we’re considering other chronic conditions, do you think your participation in the DOC has affected how you treat friends and acquaintances with other medical conditions? (Thanks to Jane of Jane K. Dickinson, RN, PhD, CDE and Bob of T Minus Two for this topic suggestion.)

I've been wincing and cringing at today's blog prompt all week.  It makes me uncomfortable.  I kept thinking I'd weasel out and go with another Wild Card topic.  It is definitely a loaded question.  Choose any other chronic condition, and aren't you sort of saying, "I have it harder than those guys?"  Not that this is criticism of the prompt. Quite the contrary, things that make us think; things that provoke us, help us grow.  They are far more interesting to read than Pollyanna Sunshine.  But even though I gave it a lot of thought, I still wouldn't trade my daughter's diabetes for another chronic illness.  (Can I trade it for good health? I'd gladly do that!)

I have rheumatoid arthritis. I have a close family friend with a son with Cystic Fibrosis. My niece is a Leukemia survivor, and I wouldn't trade Eleanor's diabetes for any of those, and truthfully, I doubt they'd trade with me.  (In fact, I was suspicious that Eleanor had leukemia when I took her to urgent care for the visit that ultimately resulted in her diabetes diagnosis… I was relieved that it was not leukemia, but that's a whole'nuther blog post.)

I mentioned today's topic at the breakfast table, and my husband said, rightly, "Well at least with diabetes you're the one in control." True. Sort of… I don't feel very in control after a week lows-run-rampant. But what he means is you are the one who manages your care for the most part.  He's right about that, and he ought to know since he himself also has LADA diabetes.  You do have more control when caring for a PWD, especially when I compare it to my own very stressful visit with a doctor this week in regards to my own arthritis.  I was referred to a new doctor who was supposed to use imaging to help me diagnose and identify a source of pain, but instead, he freaked out about the pain medications that I'm already taking, you know, the ones my other doctors had prescribed (all of which are above board, on the up and up and filled at the same pharmacy, by the way.) As a result, he refunded my co-pay and sent me home refusing to treat me, and even suggested I needed an addiction specialist.  (No, what I need is pain relief and then I'll stop taking all this crap)  Pain medications are a pain.  All medical care is a pain because of the cost, the dependency on doctors, insurance approvals, denials, appeals, etc.  But, pain medications carry the extra burden of the DEA.  Oh joy! So, Michael is right about that.  At least with Eleanor's diabetes, we don't have to worry about getting access to schedule 1, 2 and 3 drugs and all the rules and hassles that come with them, and that does make it easier.  I certainly wouldn't wish that on her.

The other thing I've thought to which to compare her diabetes, is my 9-year-old son Reid's food allergies.  In fact, this morning, I read another blog that did just that.  Robin, at Keep Calm & Carry On, suggested that she'd like to have her two children trade chronic health conditions for the day.  It was an interesting read.  But my situation is a little different.  Right now, her having food allergies instead of diabetes feels like a good trade, because we've been living with food allergies for 7 years, and they are just background noise, so it feels like a better deal… but you know what that is?  That's just another example of: Better the devil you know, than the devil you don't.

And once we get to know the Devil Diabetes, it will become background noise too, and that seems like a goal to work toward.

One more thought. I read another blog, Tom at Diabetes Dad wrote about giving your child's diabetes back to her: In Death She Taught Us Our Greatest Accomplishment.  I've been thinking on this for a while now.  It's actually quite difficult to separate in my head to whom the diabetes happened.  She is so young that we are having to manage so much of it for her right now.  I've worried about the entanglement in my own mind.  Whose diabetes is this anyway?  In fact, sometimes when I write this blog I use all the wrong pronouns and I talk about "our" CGM, or "we" were low.  When I proofread it, I always change it to "her" CGM, and "she" was low, but it says a lot that I write it the other way first.  That seems a little weird.  Am I taking on too much ownership of it for myself.  Am I taking the ownership away from her?  These are interesting questions, because I never had those ownership concerns with Reid.  Perhaps because he acquired his food allergies at 2, an age when of course, the problem was mine to manage.  At 6, it's a little more complicated.  She's in between dependent and independent.  At 2, Reid wasn't even potty trained! I did literally everything for him.  If she was 14, I'm sure she'd take on more of the responsibility from the start.  (Although, I'm glad she's not 14, I've read that kids cope with a diabetes diagnosis much better if they are a bit younger, oddly, you'd expect the added years of syrupy blood running through their veins to mean MORE complications, but no, kids who are diagnosed as tweens and teens have more complications than kids who are diagnosed younger.)

Even as I've been sitting here typing, I have calmed my addled brain. I realize that my worry may be unfounded.  I'm not still managing Reid's food allergies.  He does that himself.  I send him to parties and camps, and co-ops and lunches and he fills his own plate, and I trust him to know to ask about foods.  He carries his own Epi Pen (I keep another in my purse just in case he forgets.)  I'm putting him on an airplane to fly alone across the country this summer to go to a week long camp without me.  That's pretty much independent. Yep.  We got him there just fine.

So what that tells me is that I've done a healthy job of turning over the responsibility to him at an appropriate rate.  I can see that he's doing fine and eats independently, I can cut myself a little slack and realize that I'll almost certainly do the same things with Eleanor.  Two months in is too early to let go.  But since I've done it before I know that I can, and I know that I will.

Thursday, May 16, 2013

What We've Accomplished in 67 Days

Today is day 4 of the Fourth Annual Diabetes Blog Week.  I'm still hanging in there!  Read on for today's prompt:

We don’t always realize it, but each one of us had come a long way since diabetes first came into our life. It doesn’t matter if it’s been 5 weeks, 5 years or 50 years, you’ve done something outstanding diabetes-wise. So today let’s share the greatest accomplishment you've made in terms of dealing with your (or your loved one’s) diabetes. No accomplishment is too big or too small - think about self-acceptance, something you’ve mastered (pump / exercise / diet / etc.), making a tough care decision (finding a new endo or support group / choosing to use or not use a technology / etc.). (Thanks to Hilary of Rainie and Me for this topic suggestion.)

It's been 67 days since Eleanor's diagnosis (and 14 years since her daddy's diagnosis, since they are both PWD that I know, live with and love)  I must say, that in spite of Michael and I already having lived with diabetes for 14 years, I've still had a tremendous learning curve since my daughter's diagnosis.  Having a little girl face this disease is a whole different ball game.  To be honest, with Michael's diabetes, it had gotten to the point where I hardly noticed it.  Oh sure, he had a low here in there, mostly on the weekends 

when our schedule is off, and I see him pull out his insulin pen and shoot up under the table when we're eating out, but it had gotten to be no big deal.
I paid more attention to it during my pregnancies, frankly.  Just for fun, I used his glucose meter now and again to check in on myself.  I never found anything numbers out of line.  I'm an information junkie so I found it fascinating regardless.  But, with the advent of Eleanor's diagnosis, I've built up quite a list of accomplishments:
1. I gave an injection to another person (I'd done injections on myself with various arthritis medications)

2. I've done upwards of 500 finger pokes.

3. I've gotten into a regular habit of waking for those midnight and three A.M. alarms to check her.
4. I've joined the club.
5. I've started this blog.
6. I've reached out to the DOC and begun to find my home here.  I'm beginning to build warm connections.  It takes some effort to find the right place for yourself.
7. I've inserted her Dexcom sensor.
8. I wore and Omnipod full of saline for 3 days.
9. I slept on a hospital chair/bed/thing for two nights with rheumatoid arthritis.
10. I slept in my own bed with Eleanor in it too with rheumatoid arthritis, during the countless early days when I was terrified to let her out of my sight.
11. I've slept in a lumpy camp bunk bed at Camp Sweeney during the Spring Fling family weekend with rheumatoid arthritis.
12. I've climbed the ladder to her loft in near agony in the worst stiffest morning hours to check on her with rheumatoid arthritis.
13. But I'm most proud that I have become an advocate for her.  I've been assertive and effective in getting her a CGM and an prescription for a pump, in spite of the "standard schedule" that the attending clinic usually follows.

But, enough about me, this is really her story.
Here's what she said she was proud of:
• I'm proud that I'm brave.  I'm braver than some kids.
•I proud that I got used to injections, because I don't cry anymore.
• I'm proud that I accomplished convincing my grandparents to send me to Camp.

There were other things, things I am proud of her for that she didn't want to list herself.
•Speaking of stage performances, this girl is fearless!  She loves to perform and there doesn't seem to be an ounce of stage fright in her.  I love how she lights up when she gets on stage, be it singing, dancing or acting.  (She can be rather reticent in a classroom, seldom raising her hand to answer questions even though I know she knows the material.  It's a fascinating contrast to see her bloom when performing) I'm proud of how determined she was to get through her rehearsals and performances of The King and I even though her diagnosis fell right in the middle of it.

• She rode a zip line at Camp Sweeney during the Spring Fling family weekend - one handed and waving! Holy Cow! This girl is Six!! 
Eleanor, coming down the zip line…

…with one hand!
• I'm proud of how she shares her diabetes with her friends.  She wants to educate them, show them her Dexcom transmitter, and tell kids about insulin.  Those kids will have a greater understanding later in life because of Eleanor.  
• I'm extremely proud of her generous heart and her efforts to build an organization that will raise money to donate Jerry the Bear to other kids who are newly diagnosed with diabetes.  She wants every kid who's scared and overwhelmed to have that furry friend by their side to hug and hold and make the path a little gentler.  That's where she's thinking about other kids, and giving back.  She's pretty special.

Wednesday, May 15, 2013

Hedgehogs are on the Job! Keeping your favorite PWD safe from harm!

Heggo definitely likes this PWD!
Today is day 3 of the fourth annual Diabetes Blog Week,  since I've only been blogging about diabetes for a very short while, I just don't think today's topic, "Memories" is a good fit.  I tossed around some ideas.  I considered writing about Eleanor's diagnosis day, but I'm not ready to do that, just yet.  It's still simmering.  I also considered writing about Michael's diagnosis day, which was 14 years ago.  That certainly qualifies as a memory, but in some ways it's too distant.  It has the opposite problem.  Also, it's not really MY story.  So I'm going with one of the wildcard topics.  Specifically, the Diabetes Wild Kingdom Wildcard.

Here's the prompt: What is the ideal diabetes service animal? Think beyond the obvious and be creative in explaining why your choice is a good one. For example, maybe a seal would make a good service animal - it flaps its flippers and barks every time you get a good blood sugar reading!

Well… naturally a hedgehog would be the ideal diabetes service animal! Isn't that completely obvious?
Our Heggo, looking quite a bit like a sea urchin
When we first adopted our hedgehog, Heggo, and she spent all her time curled in a ball, I thought, "She looks like a sea urchin!"  Only later did I learn that "urchin" is an old world name for "Hedgehog," and that, indeed, sea urchins were named such precisely because they resembled the prickly land animal.  For some reason folks stopped calling hedgehogs "urchins," but they never started calling sea urchins sea hedgehogs.  or seahogs either.  

But why would they make ideal diabetes service animals?  Well, their prickly quills for one thing! Built in traveling lancing devices!  Hedgies will even pop abruptly if you startle them, so that's quite a lot like a little spring loaded lancing device, isn't it?

Additionally, they have a keen sense of smell.  In fact, they bond with particular humans based on sensitivity to feeling safe and at ease when they're around a particular person.  If the PWD spend time with the service hedgehog, he'll be ready to sniff out that glucose level anytime.  Even better, hedgehogs are nocturnal, so they'll be likely to be wide awake and alert when a PWD needs them most.  They can sleep peacefully knowing the hedgehog will be on alertful watch.  If the hedgehog sniffs out an out of range blood glucose, she can tickle the PWD awake with her little whiskers, poke a finger with a quill and get the information everyone needs, so treatment or correction can commence.

Finally, hedgehogs, unlike dogs and cats, are very unlikely to produce allergens that will effect humans.  A hedgehog allergy is very rare, so the typical deterrents to getting a service animal just aren't there!

Awww, could you eat that cute face?
I don't think there's any competition.  Hedgehogs are so obviously suited to this job.  Someone needs to open a training facility right away.

Only one problem.  The hedgehog may be great for ongoing service to my daughter and husband… if it lives that long… I've read that hedgehog meat is rumored to cure rheumatism and arthritis.  Hmm… I think I'm craving a hedgehog sandwich.

No, I couldn't eat our Heggo.

Besides, Reid would never let me!

And neither would Kenneth!

Tuesday, May 14, 2013

I've Got Your Back

Today is day two of The Fourth Annual Diabetes Blog Week.  Here's the prompt:

Tell us who you would write the petition to – a person, an organization, even an object (animate or inanimate) - get creative!! What are you trying to change and what have you experienced that makes you want this change?

Yesterday my blog was critical of the system of endocrinology care at Dallas Children's hospital.  At the end of the post, I mentioned that I'd found some agreement from some parents at a local support organization.  That part of the post has since been removed, because, the leader contacted me privately and asked me to remove the group's name from yesterday's post because it was "negative" and "We don't want any negativity at Type One Family Network."

I immediately, before we ended the call, respected her wishes and removed the group's name from yesterday's blog post, even though what I'd said about the group was that I'd found support there.

I found the Type One Family Network (TOFN) through a friend of a friend.  Unfortunately yesterday after our conversation, I chose to withdraw my membership from the group, because they weren't able to give me the support I thought the group was intended to give.  Apparently, I misunderstood.  The very support I was grateful for yesterday turns out to come with conditions: no complaining.

The first sign that Type One Family Network was not for me came about a week ago.  A thread on the Facebook page had generated close to 60 responses wherein parents were sharing their frustrations with various health care settings, situations and teams. There was a lot of "me too!" and, "I know just how you feel!" Sprinkled in with "Thank goodness I'm not the only one."  As well as a smattering of, "We love our provider, we've received excellent care." This is the precise function of a support group, and it was working.  Then, mysteriously, the group leader piped up and said, "I'm closing this thread. No more comments please."


See? Humor!
I have to work at not being negative.  It's not easy for me. I'm just not one of those sunny people I so admire. I admit that, but I make a conscious effort.  I do try to find nice things to say, I look for humor,and when I run into trouble I don't collapse, I look for solutions.  But injustice, and irrational arbitrary policies at hospitals and clinics make me angry. I'm pretty sure that's normal, particularly for Mama bears with sick cubs..

Speaking of Bears, If you read other posts on this blog you will find some warm loving positive energy here too.  Just read the one about our friends raising money for Eleanor to have Jerry the Bear, and how she wants to help other kids get one too - see? all warm and fuzzy! It is my intention to make the post-mix heavy on the sweet stuff and light on the bitter, but sometimes I just gotta get the bitter off my chest. This diabetes stuff is hard.

My daughter's type one diabetes fell into my lap in March.  Finding the right support group was an early attempt at soothing the heartache.  I've joined a handful of forums and groups, but I'm still trying to find my way; navigating new waters, casting about, looking for companionship and respite.  I'm still really new to the DOC.  I need help, comfort, reassurance.

They both have Decoms. Fun.
I wouldn't be surprised if I look back at some of these posts years from now and see my own pain with fresh eyes, and recognize the naïveté, the open wound, the lashing out, the displaced anger. But I'm immersed in it now, and what I need right this minute is knowing someone's got my back.  I don't want to do this alone.  It's scary.  My mom is gone, and I miss her. I'd give my left leg if I could share all this with her.  She'd say the right things, and let me hiccup the same anguished sob into her shoulder again and again, if I needed to, until the tears finally stopped.  Whenever I think of her, it reminds me what an enormous job I have to do with my own three as, Mommy with a capital "M." So, I type it here, and in forums because there's nowhere else to put it. There's nowhere else for it to go.

I was told yesterday that Type One Family Network doesn't want to hear it though.  I suggested that because I shared on my blog that I'd found support from TOFN, it would be a way for others in need to find the group, and know that there is shelter there.  But the group leader said, "I don't want people to find TOFN because they're having problems."  She added that the group gives a standing response to anyone taking issue with a diabetes care provider: take it up with that provider themselves, call the customer service feedback number, but don't bring it here. "We don't want any negativity" She then gave me a list of alternate places where I can complain.  I carefully wrote them down so I'll be sure to do it right next time.  ;-)

So my petition is to the Type One Family Network: please remember that people need support groups precisely because they are struggling.

To my readers: Y'all know of any good support groups? Wanna join me in a new one? I've got your back!

Sunday, May 12, 2013

I ain't tellin' you nuthin' (OR how I came to be leary of my daughter's care team in two short months)

This week I'll be blogging every day on a different topic for the 4th Annual Diabetes Blog Week.  I'm very excited to be participating!

The topic for Monday May 13th is: Share and Don't Share

Diagnosis is like being blindfolded…

on a unicycle…
in a hurricane…
while floating on an inflatable pool raft, with an empty cup holder…

and wishing for a beer.

It's been 63 short days since Eleanor was diagnosed with Type 1 diabetes.  We spent 2 nights in the hospital.  So… we've had about two months at home flying solo.

We were impressed and delighted with the inpatient care and support during her stay at Dallas Children's on the endocrinology floor.  Even though the nurses told us we were in the oldest, shabbiest and worst wing, which was in desperate need of remodeling.  In fact, they told us our room was slated next on the remodeling agenda.  We didn't care.  We didn't care, because everyone there was so fantastic.  Who needs a chic room with the latest designer curtains when the people are good?

Diagnosis can be terrifying.  It can be terrifying even for a mama who's been married to a man with diabetes for 14 years of a 17 year marriage.   It can be terrifying even for a Daddy who's been managing his own diabetes for just as long.  And let's face it. "Terrifying" doesn't really begin to capture it, does it?  It's disorienting, discombobulating, heartbreaking, unexpected, and it leaves you flat-out-off-kilter.  It rocks your world.

But those folks at Dallas Children's did a pretty good job of helping us regain our balance and getting us back up on our feet in short order.  Everyone from the medical professionals to the volunteer staff in the playroom were really warm, informative and wonderful.  Shoot… even the EMT who pushed Eleanor's gurney up to her room from the ER had her name tattooed on his arm!  For reals!


After we got home things were not so great.

I began by educating myself.  I bought half a dozen or more books:  Books on parenting type ones; books on insulin pumps; books on continuous glucose monitors; books on nutrition; and books on the history of diabetes treatment, and I learned.  I joined forums and I talked other parents and patients.  I read research studies and I armed myself with information.  I figured out what I wanted for her and I went after it.  I had a clear idea of what I thought was the best plan for her:  a continuous glucose monitor and a pump.  Everything I'd learned supported this.

I called and asked to be notified about cancelations and l I got her in to see her endocrinologist earlier than originally scheduled, because I didn't want to wait 6 weeks to see the doctor again.

We were asked to keep a log of Eleanor's glucose checks, and we did.  We faxed it in once a week, with our own notes or questions.  Then we'd get feedback from the CDEs.

At first, I told them E V E R Y T H I N G.  Seriously.  I sent in two single spaced typed pages the first week.  I practically submitted my personal diary and dream log.  Every thought; every worry; every subtle nuance in her BG fluctuations.  I voiced my concerns; I shared my analysis; I gave my opinion about her treatment plan;  I asked questions.  I even asked for their opinion.  Duh.

Big mistake.  Huge.

Unfortunately.  When I started wanting to move more quickly than they like…  they started pushing back.  They said, "this is not how we usually do things!"

… and I kept being consistent and assertive… they flipped on me.  They turned the information I'd shared with them against me.

I had told them she rolled her eyes.
I had told them she occasionally resisted her injections.
(all perfectly normal, even predictable, behavior)

They told me it was all my fault.  Bastards.
Me with Eleanor and our pet hedgehog, Heggo.

Here I am.  A mommy.  A mommy who's vulnerable, frightened, tired and worried.  A mommy who is clearly extremely energetic and devoted to getting care for her daughter…

A mommy who loves every tiny freckle on her little girl with every fiber of her very being

and they found my soft white underbelly, and drove in the blade with a squeeze of lemon and a twist.

You know what they said?

They said it was because I wanted her to have the pump too soon.  They said it was because I was being too pushy.  They said I was rushing her and she wasn't ready.

What the hell do they know?

So, you know what I did?

I shut up.

And then, I went to a JDRF picnic.  And I told the other Type 1 D mommies about my experience.  You know what they advised me?  They advised me to shut up.

You know what my husband suggested?

He suggested I shut up.

Eleanor and Kenneth at the park
And that's sad.  It's sad because they could have been a great resource.  They could have been a trusted; safe; home-base for me when I needed it most.  They could have won me over, but instead they shoved me away with both hands and reached for something they could never have.


So now.  I don't tell them anything.  I fax in the logs.  I ask terse simple questions without adjectives.  I get straight to the point.  I don't feel safe.  I don't trust them.  They have become adversaries instead of advocates for my daughter.

I've tried to find another avenue for seeking her diabetes care, but I really truly do not have any choice.  I even asked the reps from the pump manufacturers if they could suggest another location for her diabetes care.  I got the same answer everywhere I went.

That's terribly sad, because, while I have the resources and the drive to figure out Eleanor's treatment for myself, not every parent does, and they are treated condescendingly and not given credit, and they may just take whatever is dished out, never realizing their child isn't getting the best diabetes care available.  Have you ever been sufficiently dissatisfied with health care that you sought another physician or team?  Have you ever been in a situation where you only had one choice of teams and found yourself trapped there?

The system at Dallas Children's is broken.  I'm not the only one who thinks so.  Plenty of parents on local groups agree.  They've witnessed and experienced similar exchanges.   I was zealously encouraged to call the feedback line and let 'em know what I really think.  And I will…

But what a tragic loss of opportunity for all of us.

Wednesday, May 1, 2013

Eleanor's Omnipod Demo - A photo essay

Look what came in the mail today! And the box even matched her dress!

After I took the pump class, and got to wear an Omnipod for three days, she was chomping at the bit to try it too.

ready to go!

Very excited!

Time To Apply Bling!

Must apply Plenty of Bling!

All Blinged, Ready to wear.

We had a bling basket ready & waiting
Peel the cover off the adhesive

She showed it off to Kenneth…

…and she practiced piano…

…and she even had a bath!
And she can't wait to get the real thing!!

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