text: more than a statistic -- our life with diabetes: 07/01/2008 - 08/01/2008
  (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.)
  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 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.
  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!)
  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.
  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!
  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!
  Posted by Angie at 3:29 PM 1 comment:
  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!
  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!!
  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!
  Attention: Member Appeal
  RE: Sáin Ravenscroft
  Member ID XXXXXXXXXXX
  Group # XXXXXXX
  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.
  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!
  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.
  (Doom Kitty picture is of no significance -- I just like him.)
  Thought this was worth sharing. Maybe if we all raise our voices someone will really listen!!
  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.)
  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!)
  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.