Wish me luck!

I just sent off the letter of medical necessity for Sain's continuous glucose monitor. I am bracing myself for rejection and a lengthy appeals process but my little girl really needs this. She is afraid to sleep because she fears she will go low and die. No kid should have to live with that when there is a proven solution. (Our current solution is me getting up 3 times a night to test her.)

I am trying to remain optimistic about our chances of getting this covered but was a bit discouraged when I found out Children's has never gotten one covered. It's sad how disillusioned I've become regarding medical insurance. I used think our country had great insurance -- that changed once I actually needed it. God forbid your child needs medical care beyond their yearly check up.

How would I explain to Sain that the insurance company won't cover it and that I can't afford it? So many times since diagnosis I have bought a lottery ticket not thinking of all the exciting things I could buy myself if I won but dreaming about how much better it would be not having to care how expensive this disease is.

I should've been a math major!

Because Sáin was diagnosed before she entered grade school, I have never made a school lunch (or school snack) without figuring carb counts on it. This fact really hit me this morning. Everything I pack is counted. Even the jam for her sandwich is weighed so I can figure it correctly.

I’m probably a little obsessive about getting Sáin’s daytime carb counts correct but it seems to be paying off with good blood sugar numbers. The funny thing is if you give me four random numbers and ask me to add them up I might not be able to -- tell me they're carb counts and I will be able to give you the total as quickly as any calculator.

Sáin and I often talk about the things we will most enjoy once they find a cure. I think making a school lunch without figuring the carbs out will be nice. (although I will probably still count the carbs in my head)

Side note on carb counting – last night Sáin had her student led yearend conference. I noticed she is doing very well in math. When I pointed this out to her, Sáin responded, “What do you expect from a kid whose life is one big story problem?”

(picture is of Sáin and Aidan riding a camel at the Toronto Zoo.)

Vacations are TOO short

So, we are back from Toronto.

The vacation was great. Part of me was hoping Toronto wouldn't feel so much like home any more but this was not the case. From the moment we landed until the moment we took off again, Toronto felt way more like home than Seattle ever has.

Traveling with diabetes proved interesting. Security was a breeze. I heard so many horror stories that I expected the worst. I found the security people friendly and helpful. Only once did anyone even question Sain's pump and once I told them it was an insulin pump and not an MP3 player they were perfectly happy.

(It probably doesn't hurt to be traveling with Aidan -- the boy who can charm darn near anyone!)

Here's where it gets more interesting. Sain's blood sugars are greatly influenced by her mood. This isn't unheard of in diabetics but even Sain's doctors have noticed just how tied into her moods Sain's blood sugar readings are. I joke that if you want to know how Sain's day was just check her meter, don't ask her.

If she's excited, Sain goes high. Once she calms back down, she goes back to normal. The problem is when you correct the excitement high. A few times I thought she was high from food and corrected. This led to a couple of dangerous lows. By the end of the trip I eliminated all corrective boluses and kept Sain's blood sugar sufficiently high that I am hoping her endo is not reading this!

(Sain is back in range now.)

I would love to say we are happy to be home but that would be a lie. Sain cried when we left Toronto; Aidan wanted to come back, grab Grandpa and Tennyson, then go back to Toronto; and me, well, I just wish I could live somewhere that actually felt like home.

(I couldn't stop laughing when I found out our plane was leaving from gate A1c.)

My computer doesn't like me!

I have been trying all afternoon/evening to get this email out... it's not working too well! Since time is getting short and we have to be up at 3:00 tomorrow morning I think I need to shut things down. Rather than try outlook one more time, I will use my trusty blog.

(Sain would NEVER forgive me if her wonderful godparents didn't get this message -- so Kate and John, I hope you enjoy!!)

This is for all the wonderful people who support us, ran with us, prayed for us, etc. as we journeyed through the Beat the Bridge 2008 season:

Thank you.

Thank you to all who donated to our team. Your donations are getting us so much closer to a cure and every year you amaze me with your generosity.

Thank you to all who ran, walked and/or crawled for the St. Anthony School Team. Being there and showing your support means more than you can know. (Especially you, Dad!!)

Thank you to Sister Linda and Father Gary for the support of the school and the parish. Although I’m still a little uncomfortable thinking that my blog address was given to all school and parish families, getting random donations and kind notes from people whom I’ve never even met makes it all worthwhile.

A special thank you to Bonnie, Sarah and all the JDRF people. You guys were there for me when I was less than one week into this disease, you’ve been there to see my daughter grow into a great public speaker, and I can’t wait to share in the glory of a cure with you all!

Words never say quite enough so I thought we’d try something a little different… this video is for you guys. Enjoy!

(To all at RFN – since Chris won’t trust us with YouTube, I’ve left a couple copies on CDs with Dede.)

We are off to Toronto now for a much needed vacation. Have a wonderful week!!

Angie

Beat the Bridge to Beat Diabetes

Tomorrow is Beat the Bridge -- next to April 5th, this is the most emotional day of the year in our household.

I could write on and on about what it means to us but I really need to try to sleep.

I will only say this -- thank you to everyone who has been there for us financially (our team has raised nearly $5,000!), emotionally and to all the people participating on the St. Anthony School team.

You are all my heroes and your generosity doesn't go unnoticed.

Thank you!


(the back of Sain and Aidan's shirts -- mine says "sleep" instead of "a cure")


(Aidan practicing running)


(Sain at the KZs Plumbing auction benefiting JDRF)

It's Friday!!

Okay, it's Friday and I can't focus to save my life so this post is liable to be scattered -- sorry. Luckily I know myself well enough to have been able to predict this "Friday before vacation" problem and I got all the hard/important things done at work on Monday and Tuesday. With work stuff out of the way and only one last project here to complete before the out of office goes on, it's on to more meaningful things.

Here's what's done:

• Medical supplies (minus insulin which needs refrigeration) packed
• backyard mowed (if you've seen my backyard you know this is a pretty big accomplishment -- it's rather big!)
• travel papers and passports in carry on (You should see the amount of paperwork it takes to travel out of country with a dual citizen diabetic child when you're one month away from legally obtaining sole custody -- the poor TSA people are liable to be overwhelmed!)

Here's what's NOT done:

• Everything else packed
• kids' carry ons packed
• Beat the Bridge shirts made
• Living room and kitchen cleaned
• Laundry, Laundry, Laundry
• Front and side yard mowed

Oh well, it will get done! I can probably get most of it done today and what I don't get done today can get done tomorrow morning.

Tomorrow is the KZ Plumbing auction.
Sunday is Beat the Bridge.
Monday is the first vacation I've had in more than 3 years that does not involve a hospital!!

Happy, Crazy, Stress-filled, Somewhat Manic Wednesday Things

My life is busy. It’s always busy. I kind of like it that way. That said, I will be happy when this week is over. It’s not that this week is more busy than all the others it’s just that this week is when everything (okay, for the literal people, not everything but a lot of things) happens.

Tonight I have to make our shirts for Beat the Bridge. This wouldn’t be too tough except Tennyson, my cat, seems to find a way to “help” every year. If you look closely at our shirts, every year there are black cat hairs underneath the transfers.

Thursday and Friday are designated packing days. That should be fun. Aidan decided last night that he doesn’t want to pack clothes… he wants to pack only Lego (and Dogdog.) Sáin would pack her entire wardrobe if I let her. She was even contemplating packing her school uniform. “If I miss my school friends I can wear the uniform to remind myself of them.” (These days also need to be used for cleaning our house – I REALLY don’t want to come home from vacation to my house in the state of chaos if is currently in!)

We go to the KZ Plumbing Beat the Bridge Auction on Saturday. The owner’s son, Zach, was diagnosed the same day and at the same hospital as Sáin. There’s an unspoken bond and understanding when you go through a life changing event with someone.

Beat the Bridge is Sunday. I love this event. Not only is it the best 8k on the west coast (something I really enjoyed prior to my hips betraying me) but it’s a huge fundraiser for JDRF. I picked up our team numbers and shirts yesterday. They are being delivered today – mostly via kid-mail at the school. (I hope the office staff doesn’t hate me after Sáin brings in bags of packages to be delivered!) Our team has nearly 40 members now and has raised over $4,000!!

Sunday afternoon is for last minute trip details. God knows there will be some (many) of these!

Monday at 4 am we will be at SeaTac airport (thanks to my wonderful dad who is willing to pick us up and drive us to the airport SO early.) At 6:10 we will be on our way to Toronto (via Salt Lake City.) This is Sáin and Aidan’s first real vacation. It will be so nice to just get away and show them the city I love.

Have a great Wednesday!

My Wish

I will keep this short.... this week was awful but it's over so I won't dwell on it.

For the last hour I've been watching Sain and Aidan play in the backyard through the kitchen window. I put iTunes on shuffle to give it a soundtrack. This song came on and was a perfect soundtrack.

My wish for both kids is happiness. Isn't that what really matters?

Last night I dreamt I was in a beautiful field of blue flowers with my great grandmother (the one that my grandfather always said I reminded him of) and she sang this song to me. That's why I had to download it today.

Can you miss someone you never met?

happy memories

My screen saver is set to slideshow so occaisonally I see things that I had forgotten about. These two pictures showed up today and made me smile.

As a toddler Aidan loved Sain's sparkly shoes. He also loved the sound they made on the wood floors in our old house. Aidan would spend hours (okay, probably not hours but a number of minutes) just walking up and down the hall in Sain's shoes.

The sound drove me crazy at the time but the memory of that sound now makes me happy. Time is a funny thing!

(These pictures do have a link to diabetes -- Sain was wearing those shoes when she was diagnosed. She became well known in the endo department for her ruby red slippers.)

Isolation

This disease is lonely.

What I've discovered is there are a handful of amazingly wonderful people (whom I cherish more than they can ever know) that get it but the rest, no matter how much they say they understand, simply don't. They can't I guess.

Today started wonderfully-- see previous post. I was so happy. Sain's A1C is great, our Beat the Bridge team is unbelievable and everything seemed to be falling into place. Wow, did that change in the blink of an eye.

I know people have lives of their own. I get that my life is not the center of the universe but a few events today really put me in my place.

It's funny, diabetes made me share. It made me open up. I NEVER did this before. I NEVER shared my personal life and NEVER offered more information than the bare minimum.

People knew me but only superficially. There are rare exceptions. There are those that I've met from time to time that I had an instant bond with but those people are few and far between.

Diabetes gave me a reason to break through that comfort zone. I need a cure for Sain so it doesn't matter how uncomfortable I am I just need to get the story out there. It's intersting how "need" always trumps "want."

Tonight I am fighting to urge to recluse so I am making myself blog. I really want to go back to that "skater chick" as Sain likes to call me and wear all black and hide. But I know I can't do that. Sain is too important. All the other amazing kids and families I've met through this disease are too important. I know I can't let ignorant people stop me -- I guess my fighting instinct is stronger than my hiding instinct.

The thought that's keeping me going today (besides Sain's great A1C) -- In less than two weeks I will be in the one city on this planet that has ever felt like home to me. Even if I am only there for a week, at least I have that week and I get to share it with the two people I love more than anything.

As they said in Anne of Green Gables, "Tomorrow is a new day - fresh with no mistakes in it."

6.8 !

That number might not mean a lot to most people but to me it’s validation. It means the sleepless nights, the obsessive carb counting, and the constant research is working. In October Sáin’s A1C was 8.2 (still on Lantus), in February it was 7.9 (one month on the pump) and today it was 6.8! This is the best A1C we’ve had since she was in the honeymoon period.

(Is it bad that we’re celebrating the 6.8 with coldstone creamery tonight?)

First Communion Pictures

Thank you to Grandma, Grandpa, Kate, John, Aunt Linda, Uncle Ken and Aunt Bobbi for sharing this day with Sain!

Scariest moment ever

At about 10:45 last night Sáin came out to the living room and said, “Mommy I feel low” and then collapsed. She was low and very shaky and drifting in and out of consciousness. By some lucky freak of nature she was able to drink juice and I was able to get blood sugar up without using glucagon. Sáin slept on the couch; I “slept” on the floor. (okay, I didn’t really sleep. Who could sleep after that? I watched really bad infomercials, talked frequently to the on call endo at Children's and checked her blood sugar every 30 minutes.) Sáin woke up this morning high (357) but I don’t care. She woke up this morning and that’s all that matters.

I know I should write more on this but I am exhausted and need to get back to work to pay for this disease.

Wisdom from a little brother

Last night was Sáin’s first communion rehearsal. I can’t put into words how excited she is for Sunday. The rehearsal went well. We now know where our seats are (front row), we know about pictures on Saturday, and Sáin learned the ins and outs of how to receive communion. (I love that they had the kids practice with real wine so they wouldn’t be so shocked when they tasted it for the first time. I should’ve had my camera with me to capture Sáin’s expression when she tasted it.)

We had dessert before the rehearsal which is a good idea in theory but nothing is tougher to carb count than other people’s homemade desserts. I could go on and on about how I completely underestimated the carbs in the brownie Sáin ate and she went up over 400 (seriously, I thought I over bolused Sáin and we were going to have a low) but I found something else about the night way more amusing.

I guess I never paid a great deal of attention to how knowledgeable Aidan is when it comes to diabetes but here are two examples of things I would love to have been able to say to people but things only a 4 ½ year old can get away with:

• When one mother was telling me that her child’s blood sugar was high from all the desserts Aidan responded to her, “We have an extra meter in the car. Would you like us to test her for you? If her blood sugar is high too long she could get ketones.”
• When two mothers were talking about how this sugar was going to be in their kids all night Aidan responded with, “No, I don’t think so. If the sugar was going to be there a long time my mom would’ve given Sáin a dual wave bolus but she did a normal one. All the sugar was quick acting and they should be fine soon.”