Notes

(Sain and I write each other notes and leave them in the other person's work/school bag. This one made me sad when I got it this morning.)

PLEASE PRAY FOR GLORIA

and the Lundgren Family.

I just found out that Gloria, a sixth grader at Sain's school, is in PICU in a diabetic coma. Gloria was diagnosed about a year ago.

Anyone in the Seattle area is welcome to join us at St. Stephen the Martyr tomorrow (30 July) at 6:30 for a mass and rosary for Gloria (St Stephen the Martyr 13055 SE 192nd St Renton)

Sain is so upset right now and so am I.

DIABETES IS A CRUEL DISEASE!

I won't lie

I hate Premera.

At least this denial was signed (photocopied signature because we're not worthy of an actual signature) by a pediatrician.

There's so much I want to say but I am too angry and sad to say anything right now. I guess I will get my 90 minutes of sleep before I check Sain's blood sugar again. I hope the lovely folks at Premera who believe CGMs are experimental sleep well.

Adventures with Aidan

Most of my evenings this week have been spent exploring the neighborhood with Aidan. Like most 5 year old boys, Aidan loves construction sites. We found a few in the neighborhood and have had a great time exploring them.

Aidan always takes his lacrosse stick with him on our adventures in case he has to protect me. It's cute (and sometimes a little suffocating) how protective Aidan is of me.

(I think Aidan will be happy when we pick Sain up tomorrow but I think he will also miss our time alone together. As much as I can't wait to have Sain home, this is the first real time Aidan and I have had alone in his life and I will miss that. I've had an amazing time with my little man!)

Our Weekend in Pictures

Saturday – aka Karate Day

Aidan’s class was uneventful. (He looks cute in his gi!)

Sáin felt fine before her class but collapsed less than a minute after this picture. She felt sick and dizzy and ran straight to the bathroom where I found her on the lying floor. It was VERY scary. I (over) adjusted for the extremely high blood sugar and checked ketones when I got her home. For the first time in a long time she had large ketones. YUCK!

After much insulin, water and rest, Sáin’s numbers were good and her ketones were gone! Best part of the whole situation (besides being well enough for camp on Sunday) was the phone call from the director of the karate school. We hadn’t even made it home yet and he called. (If you know anything about my past experiences with girl scouts and soccer you realize how much someone actually caring means to me!)

Sunday – aka Camp Day or the beginning of 4 Mommy/Aidan days

I got Sáin to camp with no problems. In the 5 minutes it took Aidan and I to get Sáin’s bags from the car, Sáin seemed to adjust quite nicely to life in Cabin 11. I got my quick hug goodbye and was pretty much told to leave.

Aidan was happy to have some quality mommy time.

Aidan and I decided to stop by St. Martin’s and explore the trails on our way home. His favorite part was the cemetery. (It is my favorite part, too.)

After entirely too much traffic for a Sunday evening, we finally made it home. Around 9:00, Aidan really started missing his big sister. We went for what had to be one of the longest walks ever and by 10:00 Aidan was snuggled up to me in my bed. He fell asleep telling me all about the super powers he would have if he was a super hero. When Aidan is a superhero he will be able to find lost keys and cell phones. I get the feeling his superpower was chosen specifically to help me.

Numbers

One thousand one hundred ninety-nine days since Sain's diagnosis. (1199 days is 28,776 hours or 1,726,560 minutes or 103,593,600 seconds.)

There was no reason for me to think about that today. It's not an anniversary or anything. For some reason I just thought about it.

If you figure that Sain is 3,215 days old then over 37% of her young life has been spent with this disease. By next year it will be up to 43% and 49% when she is only 10 years old.

It doesn't seem fair. Nothing about this disease seems fair!

Your help is needed

Please considering going here and signing the CGMS Denial Campaign Petition. It will be sent to all major insurance companies. The lives of many people (like Sain) are in the hands of these insurance companies and our voices are making a difference! Thank you!

JDRF Picnic

Yesterday we went to the JDRF picnic and awards banquet for Beat the Bridge to Beat Diabetes. It amazes me that even in tough economic times Beat the Bridge raised over 1.35 million dollars. Even more amazing is that puts the total amount raised in Beat the Bridge history over 10 Million Dollars!

For the second year in a row the picnic was held at the Seattle Art Museum Olympic Sculpture Park. The location is beautiful, the weather was perfect, the food was great and the people were wonderful – all in all it was a great evening.

Here are some pictures:

Since we arrived early I let the kids play in the fountain at the Seattle Center. Luckily it was warm enough that they dried fairly quickly.

Sáin was a little more into the water than Aidan.

Sáin rolling at the picnic.

JDRF provides jugglers, magicians and clowns. Sáin and Aidan’s favorite was the juggler.

Sáin wasn’t half bad at juggling.

Aidan and Dogdog walking back to the car (parked by McCaw Hall.)

A post about nothing and everything all wrapped into one

Ever since Father Kilian's Transcendentalism class at St. Martin's I have loved Emerson. I've read and re-read all his works numerous times. I even had to buy a second copy of his complete works because my first copy was so used and written in that I couldn't really read it any more.

I was re-reading 'Self Reliance' this morning when this passage struck me.

Trust thyself: every heart vibrates to that iron string. Accept the place the divine providence has found for you, the society of your contemporaries, the connection of events. Great men have always done so, and confided themselves childlike to the genius of their age, betraying their perception that the absolutely trustworthy was seated at their heart, working through their hands, predominating in all their being. And we are now men, and must accept in the highest mind the same transcendent destiny; and not minors and invalids in a protected corner, not cowards fleeing before a revolution, but guides, redeemers, and benefactors, obeying the Almighty effort, and advancing on Chaos and the Dark.

In a world where I have insurance companies, an ex, other parents, the media etc. telling me I am wrong, it is very hard to trust myself. But Emerson is right, every person has a potential for greatness. I guess I just have to stop being afraid of the fight and advance "on Chaos and the Dark."

What I learned this weekend

I learned that driving in rural areas gives me a lot of anxiety. (To me rural means anywhere the main road is less than 4 lanes.) I learned speed limit signs do not apply to locals in said rural areas and that there are a disproportionate number of large trucks in these rural areas. I learned that tall trees cause significantly more claustrophobia issues for me than tall buildings do and that two lane highways should always have a divider in them to keep the lunatics from passing when there’s a double center line.

From now on I am sticking with the city (except to drive Sáin to camp in the middle of nowhere!)

Give me traffic, lots of lanes, and police actually enforcing their laws any day and next time someone tells me city drivers are crazy I am just going to laugh. I’d rather be crazy than scary!

Yippee It's Friday

I am so happy it's finally Friday. This week has been a bit too stressful for my liking and I am vowing not to worry about things I cannot control this weekend. Here are the fun things I'm looking forward to:

• Dinner at Subway with the kids tonight.
• Karate starts for both kids tomorrow morning
• BBQ (that we will be at) following the Alumni Association meeting (that I won't be at because of karate) at Lambert Lodge
• Finding Sain's camp after the BBQ (we'll be down in the south sound anyway -- thought it was a good opportunity to check out the camp)
• Finally mowing the backyard (I'm not really looking forward to this but maybe if I tell myself it will be fun enough times I can convince myself to actually do it)

Time for another countdown:

• 6 days until Sain's first sleepover
• 9 days until Camp Leo
• 9 days until Aidan's 4 "Mommy/Aidan days"
• 27 days until Sain's next endo appointment
• 29 days until the St. Anthony Parish BBQ
• 36 days until the St. Anthony Parish School Parents Group BBQ
• 53 days until Sain starts third grade and Aidan starts kindergarten!
• 78 days until Sain turns 9!!

Have a great weekend!!

It's sent

The ball is in Premera's court now. I feel an odd mixture of relief and anxiety -- mostly relief with strong rushes of anxiety. My biggest fear is that I haven't done enough. But like I said before, the ball's in their court now.

(I wish it was hockey season!)

Please Premera, approve this for my little girl!

Most Painful Thing I've EVER Written

09 July 2008

Premera Blue Cross
Attention: Member Appeal
PO Box 91102
Seattle, WA 98111-9202

RE: Sáin Ravenscroft
Member ID XXXXXXXXXXX
Group # XXXXXXX
Ref No XXXXXXXXX

To Whom It May Concern:

Please accept this letter as Sáin Ravenscroft’s appeal to Premera Blue Cross’ decision to deny coverage for the MiniMed Paradigm Real Time Continuous Glucose Monitoring System and related supplies. It is my understanding based on your letter of denial dated June 24, 2008 that this service was denied because:

“it is considered experimental/investigational” and “additional research is necessary before this service can be classified as equally or more effective when compared to conventional diagnostic and/or therapeutic interventions” and “uses…beyond three days are considered investigational”

Although the continuous glucose monitor is a relatively new technology, it’s effectiveness (beyond three days) has been proven in many studies and is FDA approved for children ages 7 and up. A three day usage of the continuous glucose monitor might be enough if blood sugars were only affected by food but they are not. Blood sugar levels are affected by growth, stress, weather, changes in altitude, and exercise, just to name a few. [see appendix A, B, C and D]

We are not asking to replace the conventional blood sugar testing (finger pokes.) The continuous glucose monitor would be used in conjunction with regular finger pokes to better control Sáin’s numbers and to prevent unpredictable highs and lows, especially at night.

Like many diabetics, Sáin unable to awaken from hypoglycemic episodes at night. [see appendix E] An undetected hypoglycemic episode can cause serious even fatal complications. A continuous glucose monitor would alert us if Sáin’s blood sugar dropped below 90 and we would be able to treat it before any complications occurred. Currently I am testing Sáin 2 – 3 times every night. Even with my 2 – 3 tests, Sáin has had a handful of serious lows (blood sugars in the 20s and 30s) while sleeping.

By approving a continuous glucose monitor for Sáin, you are allowing her the opportunity to better control her disease and thus reduce her chance of eye disease by 76%, chance of kidney disease by 50% and chance of nerve damage by 60%. You are also spending a small amount now (approximately $4200 annually) to save a large amount (approximately $26,000 for ONE hospital stay for a severe hypoglycemic episode) in the future. [see appendix F]

Please approve this service for Sáin.

Background on Sáin Ravenscroft:

As you know, Sáin was diagnosed with Type 1 Diabetes Mellitus on 05 April 2005 – she was only 5 years old. Despite her constant vigilance (a vigilance that puts many adults with the disease to shame), and the constant vigilance of her family, healthcare providers, and school personnel, Sáin has experienced severe highs and dangerous lows. No matter how tightly we control Sáin’s food to insulin ratios, it is impossible to predict all the dangerous highs and lows before serious, even fatal, complications occur with finger pricks alone.

As I stated earlier, I am not asking to replace finger pricks, truth be known I will still test Sáin 8 – 10 times a day even with the continuous glucose monitor. What I am asking for a proven device that would give us a chance to stop the highs and lows before they become life threatening.

Please consider our appeal. By denying Sáin the continuous glucose monitor requested by her Endocrinology team, you are denying an 8 year old girl the opportunity for the future she deserves and denying those who love her the peace of mind they deserve.

Thank you,

Angie Ravenscroft

One of those days

There are days when this disease is manageable and I take it all in stride. There are other days when it’s all too much and I just want it to go away.

Today is the second type of day.

I only have the letter left to write for our appeal. It’s done (in my head) but putting it down on paper makes the battle all too real.

I am fighting for a technology that would greatly improve Sáin’s quality of life and could even save her life. I shouldn’t have to fight for something so proven, so safe.

No one should have to justify on paper why their child’s life is worth protecting but that is what Premera is making me do. Shouldn't that fall under the "cruel and unusual punishment" part of the 8th amendment?

I will put the letter on paper tonight – somehow it’s easier to do at night and tomorrow I will submit the appeal and pray.

As for this evening – I think I will take the kids out to buy new Super Soakers. That ought to take our minds of the D word for a while!

You think you're prepared

I thought I was mentally prepared to do all the scientific research for our appeal. I was wrong.

All day I've been reading scientific journals (something I would normally love) backing up our desire to get Sain a CGM. None of the diabetes complications are new to me -- I am a firm believer in knowing my enemy.

That said, it is so tough to read this stuff and know that a few thousand dollars and an out-of-date / for profit health care systems stands in the way of getting something that could very well prevent the horrible complications and save my daughter's life.

Diabetes sucks!

(Doom Kitty picture is of no significance -- I just like him.)

Random-ness

On CGM:
Thought this was worth sharing. Maybe if we all raise our voices someone will really listen!!

On Diabetes:
Despite the fact that Sain says thunderstorms don't scare her, her 345 blood sugar this morning (right after a rather loud storm moved through) say otherwise.

Seattle things:
Last night the Sonics officially became the OKC NBA team. I am not a huge Sonics fan but they did work well with JDRF so I will miss that. What bugs me is the new owner's smugness. Does he seriously expect us to believe he didn't intend to move them to OKC? Does he think we're that dumb?

Oh well, since the city is keeping the rights to the Sonics name, they will need a new name. After considering many options, Aidan, Sain and I agreed on the "Oklahoma City Goat Farts" -- it has a catching ring to it, doesn't it?

(I have nothing against the people of Oklahoma City -- the name is solely a reflection on the team's owner.)

Weekend ahead:
Tomorrow we are having our first annual Wii bowling tournament. This should be fun. My prediction -- either Sain or my dad will win.

We are also going to the movies tomorrow. Aidan will see WALL-E (again) with Grandma and Grandpa and Sain and I are going to see Love Guru. Why do I want to see Love Guru? Because the Leafs win the Stanley Cup (and it's filmed in TO!)

Have a wonderful 4th of July!

Of all the things ...

this disease has stolen from our family, I think the sense of peace is what I miss most.

What I wouldn't give to have the luxury of relaxing without the ever present worry that something is waiting just around the corner to shatter that peace.

REQUEST FOR CGMS: DENIED BY INSURANCE

Today is the day to raise your voice about insurance denials for CGMs. You know my feelings on the subject (see 27 June post) but there is someone this hurts way more than it hurts me – Sáin.

Below are Sáin’s thoughts on Premera denying her a continuous glucose monitor.

Background:
Sáin was diagnosed with Type 1 Diabetes on 05 April 2005. She was 5 years old. (There is a link to her diagnosis story on the right side of this page.) Last January Sáin went on the insulin pump and has enjoyed a lot tighter control. Shortly after going on the pump Sáin started researching CGMs on her own. (She doesn’t realize I was researching it, too.) I love that Sáin is a great researcher but it’s a double edged sword… it’s through her researching that she’s learned about many of the more severe complications her disease causes. In March Sáin stopped sleeping through the night for fear her numbers would drop and she would die. It was then I promised to check her blood sugar at least once (usually 2 – 3 times) a night so she could rest. I have been checking her every night since then. I am tired but that is nothing compared to what she is going through.

Q: Why do you want a continuous glucose monitor?

A: Because it will help me know what my numbers are doing. It will help me know if I am going up or down and it would let me know if I was going low (or high) at night or at school or when Aidan and I are playing. It would also help grandma and grandpa know what I am doing when I fall asleep after school sometimes. It would also make it better at Daddy’s because he never remembers to test me and he never tests me at night and I forget sometimes, too.

Q: How did you feel when we got our denial letter from Premera?

A: Mad and sad. I cried a lot and I wanted to kick them. (please note Sáin is a very non-violent child so kicking someone is very unusual for her) It makes me mad that they care more about money than me. CGMs are not experimental and they can save my life and my kidneys. I hate Premera. (another VERY unusual thing for Sáin to say – I debated about not putting it in there since it is SO out of character but I left it because it shows how badly the denial hurt her.)

Q: What would you like to say to the other people fighting for a CGM?

A: I know how you feel. We lit a candle at mass on Sunday and prayed that all the people who want CGMs will be able to get them. Keep fighting because we have to win. We're too important not to.

Q: Anything else you want to say?

A: Happy Canada Day to everyone back in Canada and all ex-pats!! Just because I live in Seattle now doesn’t mean that I am not Canadian.

(Our fight for Sáin’s CGM continues. By the end of the week I am hoping the have our appeal ready to go. I am so tired of fighting but, like Sáin said, this too important not to fight for.)