Funny Anecdote

Okay, this blog needs a lighter post. As depressing and tough as fighting an insurance company for a much needed medical device is, that is not all our lives are about.

I am, for the most part, not an overly serious person. If I took my life (a life so lovingly dubbed as my “Lifetime Original Movie” by a few friends) too seriously I would probably have died a long time ago.

I find this story funny. People who are scared of flying might not find it so amusing; nonetheless, I think it’s worth passing on.

Before we went to Toronto I made sure the kids knew about turbulence. I don’t mind flying but I will be the first to admit bad turbulence creeps me out.

Our trip to Toronto was event free. No real turbulence to speak of.

On our way back we had to fly from Atlanta to Seattle. This was the day that all the tornadoes and thunderstorms decided to make an appearance in the Midwest so our flight was quite exciting. Both kids thought the turbulence was great fun.

For some unexplained reason, during the worst episode of turbulence, Aidan decided to start singing a song he and Sáin made up while in Toronto. Normally a song sung by a 5 year old would be a welcome distraction from the rough flight. The thing to note about this song was that it was inspired by the evacuation pamphlet on the plane.

People were not overly thrilled when Aidan, the boy who knows no inside voice, started singing, “People running out of the plane. People on fire running out of the plane. People sliding out of the plane. People dying dead on the plane. Etc” (Yes, he said “dying dead”.) There were more verses but I can’t remember them right now.

Needless to say I got some VERY dirty looks from my fellow passengers. People were still glaring at me even after we landed safely at SeaTac.

(I was able to get Aidan to quiet down but he still doesn’t understand why that’s not the best song to sing while on a plane.)

And so it begins...

Do you think the 100+ pages of back up I have on the effectiveness and medical necessity of a Continuous Glucose Monitor for Sain will alter their decision?

Maybe the heart felt letter will help?

Maybe the knowledge that a CGM for Sain will only put Premera back a few thousand dollars a year whereas one hospital stay for a hypoglycemic episode will cost them over twenty-six thousand dollars will sway them??

Maybe nothing will help but I have to keep fighting ... what I am fighting for is far too important not to.

(The picture has absolutely nothing to do with this post -- I just like it!)

To Premera

To Patty Kulpa, MD, MBA & the rest of the Premera Blue Cross decision making board,

Here is the face of the 8 year you view as a number. (taken after we got your denial)

Here are your words ... "experimental/investigational" and "may be considered medically necessary for up to three (3) days in unexplained hypoglycemic episodes and hypoglycemic unawareness" and "Uses... beyond three days are considered investigational."

Are you serious? If this weren't so serious it would be funny.

It is FDA approved for God's sake. What more does Medtronic have to do to prove to you guys that this helps? And if you know a way to make hypoglycemic episodes and/or unawareness go away after three days, please share!

Here are the fingers you want me to continue to poke 10 times a day.

Here is what it looks like out my kitchen window in the middle of the night when I test 2-3 (and will continue to test no matter how tired I get) because I am scared my daughter might die! Your phone lines close at 5 but Sain's disease does not! Hopefully you will treat the exhaustion and subsequent health conditions I will inevitably suffer.

And here is my sweatshirt sleeve that I dry my tears on when I'm trying to be big and strong and protect my kids.

I will contact our Medtronic rep on Monday to get the appeals process started. Even if we get it approved Sain probably won't have it before she starts 3rd grade.

The denial letter reinforced two things to me ... Sain is a number to them and just because you have MD after your name doesn't mean you know jack about Type 1 Diabates.

There's so much more I want to say but I am tired. Hmmm, wonder why that could be?

I will end with this -- Premera will cover viagra which, although some men might not agree, will not save a life but they won't cover a CGM?

UPDATE:

I just googled the doctor from Premera. She's a Gynecologist! What the hell would she know about Pediatric Endocrinology?

More Pictures

I finally got around to ordering some official Beat the Bridge pictures. Every year Team Photogenic takes pictures at the event. The first year we were in one picture, second year a few more, the third year a couple more ... this year I think we (mostly Sain) were in over 20.

Alarms (times 2)

Last night was infusion set change night. Generally I do site changes right after Sain's dinner bolus is done but I decided to let her play last night.

At 9:15 I had Sain get ready for bed. I had all the supplies gathered and in her room. Our plan was to quickly change the reservoir and infusion set, watch an episode of iCarly on demand, then go to bed by 9:45. (late for a school night but not too bad for summer vacation)

The infusion set went in fine. The pump was primed and ready for the new reservoir. With the new reservoir of insulin in place, I held down the act button. Within 2 seconds the pump was beeping and vibrating and "NO DELIVERY" flashed on the display.

I've had this warning before... it was probably bad tubing. I changed out the tubing and tried again.

"NO DELIVERY" beep, vibrate "NO DELIVERY" beep, vibrate

At this point I start to worry a little. I try one more tubing.

"NO DELIVERY" beep, vibrate "NO DELIVERY" beep, vibrate

Now I am worried. My mind is racing with the thoughts of a pump malfunction. How much Lantus would I give her? Which Endo is on call on Tuesdays at Children's? Can I miss work tomorrow if there's a problem?

In a last ditch effort I fill a new reservoir. We've never had a defective reservoir and the manual says "NO DELIVERY" alarms are usually tubing issues or pump malfunctions.

I draw up the new reservoir, attach another new tubing set, insert it in the pump and pray. It seemed to take forever for the priming to finish but it worked.

A little behind schedule we still watched iCarly and the kids were in bed by 10:15.

I love Sain's pump but it scares me sometimes that my daughter's life is in the hands of a tiny little machine. Things can go wrong so quickly -- this leads to alarm #2

Long before I wrote a blog I was a blog voyeur. One of the blogs I read is written by a mother of a boy Sain's age in Massachusetts. This post scares me -- May 16th post. Next time someone tells me "it's just diabetes" I think I will refer them to this story.

The Little Things

I think every parent of a diabetic child has read this. I first read it shortly after Sain's diagnosis and re-read it periodically. Maybe someday I will be able to read it without tearing up!

(some versions say "parents" instead of "mother" -- I think everyone would agree that we are better to go with "mother" than "parents" in our household.)

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 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."

Update to my clinging to hope

It seems the lovely folks at Premera haven't gotten around to looking at our claim. It's sitting somewhere in a pile of paperwork. Do the words "Medical Necessity" not mean anything to them? I guess not.

They are going to look at the claim since I called to remind them about it -- how nice of them -- and I should know something within a week.

On a personal note -- I really hate having to be pushy and it seems like I have to be that way so often now.

UGH!

Clinging to hope

I am on hold with Premera Care Management. (I've got to say I have a very helpful rep this time!!) Sain's CGM is not denied yet. From everything I've been told they are usually denied the minute they are submitted. Sain's claim has been under review since 12 June. I am hoping this is a good sign!

(The hold music is AWFUL!)

Our Dream

I could never put into words how badly I want a cure for Sain.

Every prayer in our house ends with "and a cure for diabetes", every birthday wish includes a cure, every penny thrown in a fountain is a wish for a cure, and there is hardly a moment in the last 3+ years that I haven't thought of that elusive cure.

Stories like this make me believe it's possible.

Which is crazier...

Training an 8 and 5 year old for an 8k

or

Running an 8K with hip dysplasia?

The 8 year old --Sain really wants to run the 8k at Beat the Bridge next year. She feels that by running the big race she is showing her diabetes it will never win. I completely understand this mentality. What do you think motivates me to stay active even when my hips hurt so bad I can barely move?

The 5 year old -- Okay, I did a fair amount of research on running and young children. I know some people say a five year old shouldn't do distance running. I understand where they are coming from but I also understand my 5 year old. Truth be know he already runs about 8K every time he plays outside. A race would just be more focused running. I have a schedule set so as not to overwhelm his body, I have softer courses worked out to protect his legs, and the running shoes I just bought him are much closer to top of the line than I would even think of buying myself. (Running shoes are really cute in a size 13.) Besides, it's logistically impossible for me to train Sain without having Aidan along. And he REALLY wants to run the 8k, too.

My hips -- Thanks to Dr. Hubbard (and my parents who were brave enough to send their 4 year in for surgery) I have had many active years. Those active years took their toll on my hips. If you saw x-rays of them now you'd probably cringe. I think I am one of the few people outside the orthopedic community that finds those x-rays fascinating. (Even my family doctor won't have anything to do with my hips.)

Until Sain asked me to run the 8k with her, the pain kept me from doing something I love - running. So, here I am, stuck between my fear of more physical pain from running and my desire to show my kids that we really can do this.

I didn't think twice. So what if it hurts. Give me the physical pain of hip dysplasia any day over the emotional pain diabetes causes.

Today we start. I have a nice little course planned out for us... only about 1/2 mile. I know the kids will think it's too short but I want to do this right. I can live with me limping, icing and in pain but I won't hurt them!

Blood

I know, great title for a post!

Yesterday, after one of her 14 finger pokes, Sain told me she was sick of bleeding. She went into a rather lengthy soliloquy that would've made Shakespeare (or at least my Shakespeare professors) proud. It was obvious she has put a lot of thought into this and her words got me thinking.

If Aidan bleeds I put a bandage on him. I complain when I get a paper cut. Other kids run right to the health room at the first sight of blood. Sain has to bleed at least 8 - 10 times a day and, worst of all, she has to make herself bleed.

Finger pokes were the first thing I learned to do in the hospital and the first thing Sain learned how to do on her own so I guess I don't give them much thought anymore. Maybe I should think more about them.

(The 14 checks yesterday were to do a lot of highs in the morning. It turned out there was blood (oddly appropriate with the post) in Sain's pump tubing. This prevented the insulin from getting to her and could've been very serious if we hadn't figure it out in time. Once I switched that out the numbers went down.)

Random Friday Thoughts

I am happy this week is over. It’s gone very slowly and been way too cold and rainy.

Aidan’s birthday seemed successful. I sometimes worry he doesn’t get enough individual attention with everything I do for Sáin.

All of Sáin’s camp information and payments are sent in. She’s going to have such a great time this summer! (And Aidan is excited for a week of Mommy-Aidan time!)

Medtronic has the best customer service. By 8:30 this morning Amy, one of our reps, had all the information over to Premera for Sáin’s CGM. She let me know that my chances of getting approval are better on appeal and not to expect too much with the initial submission. Amy even gave the names and contact info for two more reps that can help through the appeals process.

Today is Aidan’s five year check up. He has to get shots and he hates going to the doctor. What a way for Dr. Molina to end his week!

We’re going to see Kung Fu Panda tonight. (This is kind of Aidan’s reward for (hopefully) behaving well at the doctor.)

Tomorrow is meeting day – an alumni meeting at St. Martin’s in the morning and a diabetes group meeting at St. Anthony’s in the afternoon.

Sunday is the spaghetti dinner at the school. This is a great event and I worked hard on the flyers, announcements and tickets.

My kid changed her own pump battery at school yesterday (with the help of Mrs. Kane.) I know this might not sound like a lot but it’s a huge step towards independence for Sáin. (Slowly but surely I am training my daughter to make me obsolete – it’s bitter sweet but I know it will serve her well in the future.)

(VERY random thought) I have been very firm that Aidan is Aidan and not A.J. but last night he said he kind of liked A.J. We’ll have to see where this one leads but he will always be “Aidan Jude” to me. (I am trying to think of it like J.D. Salinger and not like the A.J. / B.J. / D.J etc that every boy band has.)

Have a wonderful weekend!

Not denied yet!

I just got a fax from Premera with a form for Medtronic to submit. This is not an acceptance of Sain's request for a CGM but it's also not a denial! Will submit it to Medtronic tomorrow since I don't have our contact's info with me.

(I am writing about this so it's off my mind when I take my birthday boy to Red Robin for dinner tonight. It's his day and he already sacrifices so much for his big sister's care. I'm not taking anything away from his big day!)

Message to Premera

A 3 day rental of a continuous glucose monitor might work if my child never grew, ate, exercised, displayed emotions, etc. Funny thing about this disease, insulin doses change a lot and sometimes things go wonky for no reason. That's why we need the CGM long term.

No definite decision has been made yet so I will call them again on Monday.

(The rep I talked to was nice enough but terribly ignorant when it came to diabetes. She told me if Sain "took her medicine" she probably would have such a large variety of blood sugar readings. Believe it or not I didn't yell at her. I guess patience is something this disease has taught me.)

Happy 5th Birthday Aidan!

To My Aidan Jude,

Thank you for being my son. I can’t imagine life without you.

Thank you for making me laugh and reminding me what’s important.

Thank you for loving your big sister and not complaining when she requires a little more attention than you often do.

Thank you for coming in to my room in the middle of the night just to say I love you.

Thank you for reminding me how much fun cars, legos, rocks and dirt are.

Most of all, thank you for being you.

(and happy 5th birthday to Dogdog, too. Connie – I bet you had no idea how important of a gift that cuddly blue dog would be.)

10 and a half Beat the Bridge memories from the 2008 season

Our shirts because Sain (and everyone else with this disease) deserves a cure.


My amazing kid who can stand in front of a crowd and tell her story.


Family -- when people ask me why I send my kids to St. Anthony's the answer is easy. Besides the great academic tradition, it's community. They are Sain and Aidan's daytime family. I don't really care for Hilary but I agree, it really does take a village.




Keeping with the family theme -- the Berg, Hebert (not pictured -- sorry!) and Kane families and friends! But most importantly (to me), my dad!!


Chloe was one of the youth ambassadors this year. Sain thinks the world of Chloe and it's really comforting knowing that Sain has such a great role model.


Aidan winking. He practiced and practiced winking and finally it worked in the middle of Husky Stadium. I will always remember Aidan's first wink for this reason -- right after he winked, Aidan whispered to me, "Mommy, this is the perfect place to wink. There are lots of cute girls around."


This is my favorite picture from Beat the Bridge. Mrs. Buckmeier is a fifth grade teacher at St. Anthony's. Her patience with a hyper 4 year old boy was amazing!


The Tribble family. The support we've received from Sain's teacher and her family is awe inspiring. Having the entire Tribble clan there on race day meant so much to Sain (and me.)


Aidan sneaking a peak to see what Sain and the other youth ambassadors were doing. Sain got to help hand out awards again this year and Aidan was convinced something really cool was going on behind the sign.


Finally, the strength of my daughter. Her soccer coach once described Sain as delicate. I laughed. She is 1000 times tougher than me.