more than a statistic -- our life with diabetes

Beat the Bridge to Beat Diabetes 2010

2010-03-03T09:40:00.001-08:00

Letters will be sent next week after our website is officially set up. In the meantime, here is a preview of our letter.

Dear Friends and Family

2010 is a momentous year for Sáin. It’s the year she made the school play; the year she gets officially recognized as an honor roll student; and, sadly, the year that marks two diabetes landmarks.

On April 5th Sáin will mark her fifth diagnosis anniversary. Most families I know living this disease are told a cure will come within five years. We were no exception.

The second landmark is the hardest for me. This fall, about one week after her 11th birthday, Sáin will have official lived longer with diabetes than she did without it. This means more than half her young life has been spent worrying about highs, lows, carb counts, and, most recently, complications. I don’t know too many other parents who have had their 10 year old say, “Mom, I’m really scared I have kidney disease.” Luckily she does not have kidney disease yet but too many of the early signs are there to ignore.

I say it every year, this disease is not fair, but somehow it seems even less fair now. I’ve watched Sáin struggle to be “normal” while trying to maintain her health and I’ve seen this disease rob her of the childhood innocence that she is now too old to ever get back. I watched my 5 year old cry while praying for her cure and just the other day I watched that same child still crying while praying for her cure.

2010 is also the sixth year for Team Sáin. We’ve gone through a few incarnations but at the core we’ve always been the same – One family coming together for one day a year to fight for Sáin.

Please join us for Beat the Bridge to Beat Diabetes 2010.

Help us show Sáin she’s too important not to find a cure! We truly appreciate your support!

Thank you!

Busy Times

2009-10-02T18:38:00.000-07:00

I could easily write a post of excuses but I will leave my nearly 2 months since blogging at this -- life is busy!

Here are a few things that have been happening:

I got a job! In early September I got a great job at Clearwire (of Clear depending if you're in a 4G market.) I work with a great group of people and am doing more of what I like.

Sain and Aidan started school. Aidan is loving first grade and is really growing up this year. Sain started fourth grade and is also loving school. She's gotten a lot more independent and even did her own infusion set change at school!

I started karate. After months of telling the kids I would join I finally took the plunge. I've discovered it's very fun to hit and kick things -- and a great stress reliever!

Sain also turned 10 about a week ago. In some ways it's hard to believe she's that old but, in other ways, she seems much older.

Just before her birthday Sain had her labs done. For the first time her results were less than favorable. It was/is a hard reality check proving this disease, no matter how controlled, is serious. I'm not going into a lot of details -- I will do that at a later time -- but we've added some meds and will have labs again in December. Best case scenerio is these three months will take care of everything and we can move on.

More to come later...

Belt Testing

2009-08-10T21:06:00.000-07:00

There are so many reasons why I am proud of Sain. She's a great kid, kind to people, does very well in school, etc. But one of the things I am most proud of is her determination -- she never lets diabetes win and won't let anyone tell her she can't do something.

When we saw Will Cross speak in July he said something that really hit home. "Find the thing you love to do that makes your diabetes secondary and keep doing it." Martial arts makes Sain's disease secondary.

Below you can see a little of my daughter's passion.

(Today was Sain's last PeeWee class -- tomorrow she begins Juniors (ages 10-14) It should be interesting since this will be the first time in her nearly 10 years that she's the youngest in a class.)

I wish...

2009-07-26T04:57:00.000-07:00

I was smarter than this disease. I wish I could somehow know what it was doing. I wish this disease was like math and had an answer. If this, then that.

But it doesn't.

I feel like I'm at war; at war with an enemy far more intelligent, far more advanced than me. Nothing about this arrogant enemy is predictable. Nothing about it is fair or humane. There is no Geneva Convention with this disease.

After a week of amazingly good numbers and no spikes or dips even at karate camp, Sain is high. Not an "oh, she's running a bit high." No, she's HIGH and I can't get her to stay down. We've done set changes, insulin changes, everything -- 20 + units of correction alone yesterday with precious little results.

Maybe it was a mistake letting her go to a birthday party after getting sick at class; maybe I shouldn't have tried to be somewhat social while mapping out strategies of our next move in my head. But I couldn't let it win -- not yesterday. Yesterday we had to pretend to be normal.

My wish for today -- no ketones and that somehow the correction I gave Sain at 4 am is working and that when I go in the living room to check (camp outs in the living room are one of our "sick day" traditions) there are double down arrows from the sensor!

The somewhat evil, somewhat wonderful backyard

2009-07-21T20:31:00.000-07:00

I have a love/hate relationship with our backyard. I love it's size (about 1/4 acre) for the kids to play in, I love that it is fenced, and I really love sitting back there looking at the stars (there are no street lights around.) But that is where the love ends.

I truly hate mowing this yard. It is huge, bumpy and slightly sloping. On the best day it is not a fun yard to mow and today was far from the best day.

My mower has been in the shop for the last month or so. During that time I kept the front yard mowed using my dad's electric mower but the backyard was neglected. The grass (truthfully, it's mostly weeds) was halfway up my thighs but I was determined to get it mowed today.

Four hours, three complete mowing jobs (on three different settings) and a very full yard waste bin later I am happy to say it's done!

The best part about the yard being mowed -- seeing the kids play out back again!

(The worst part is knowing it will need mowing again in a week!)

The not-so-happy Monday night post

2009-07-20T23:22:00.000-07:00

I tried.

I tried and tried and then tried some more to write a positive blog post but I can't do it. It's not that things are horrible; I know they could be worse. It's not that good things haven't happened; I could easily blog about the kids' trip to Oregon, the JDRF banquet or karate camp this week.

That's not it. I am just tired.

I am tired of things being hard. I am tired of people being stupid. And I am tired of having to fight for every little thing in my life.

I am tired of putting on a happy face when I really want to just be pissed off and yell at the world. I am tired of people telling me things will get better -- really? After 20 + years of hearing that you stop believing it.

I am tired of people who have never really used the US medical system telling me it's fine -- what I wish for all those who think it's fine is a chronically ill child. (Sounds mean, I know, but at least I'm honest.) I'll give you a year fighting for your child's life and future then lets see how you feel.

But what I am most tired of is nothing going right. Let me clarify, things have gone right but every thing has been a battle. The big things, the small things and everything in between has involved so much work. Can't something just be easy?

Growing Up

2009-07-08T20:15:00.001-07:00

For the last 4+ years Sain has been happy wearing her medical bracelet. I owe so much of this to N-Style ID.

When Sain was first diagnosed I searched and searched and searched for a medical bracelet that would fit Sain's style. (Sain has been choosing her own style since well before her first birthday. If you don't believe me, just ask anyone who tried to dress her as a baby -- Sain's got definite opinions and is heavily influenced by one of her favorite TV shows, Fashion Files.) The day I discovered N-Style ID was a very happy day in our household.

Sain wore the Jelly Bands for 4 years. She had everything from the solids to the stars to the polka dots. They are great because of the low price and the variety. But Sain is growing up and ready for a change.

Enter the medical heart charms. It took two charms to put all the info we needed. (Having a long last name and two chronic diseases takes up a lot of letter!)

Thank you, N-Style ID for allowing my daughter's medical jewelry to grow up with her!

Interviews, diabetes and the week ahead

2009-07-06T12:57:00.001-07:00

So, this morning I had a phone interview for an HRIS position that sounds really interesting. I was worried about doing a phone interview with both kids home. I could picture Aidan playing loudly with his Lego pirates, Sain's alarms going off or having a low, Tennyson meowing or getting the "kitty cat crazies" that he so often gets but none of this happened.

The phone interview went quite well and both kids (and the cat) were incredibly well behaved. Sain and Aidan played quietly in their rooms and Tennyson slept. Their impressive behavor earned the kids blizzards from DQ. (Tennyson will get treats when he wakes up.)

I think the interview went well. The recruiter was impressed with my background and knowledge so I am hoping for some positive results. But this lay off has really messed with my confidence. I've never really been a cocky person but in the past I've been able to believe in my skills and project at least some confidence. It's been really hard to do that of late.

On the diabetes front:
Sain's numbers have been running a bit high all summer. I just adjusted her evening basal rates and things seem to be going better. Her next endo appointment isn't until September but I am happy it's the big appointment and that they will be doing full labs. The crazy numbers seem to be indicating a spike in hormones -- oh the fun times ahead!! It's times like these that I really love Sain's CGM!

(A few people have expressed concern about my lack of health insurance and Sain's diabetes care. Luckily, Sain and Aidan are both covered through their dad's insurance. As much as I really wish I had my own health insurance right now -- there's nothing quite like the fear of illness when you are uninsured -- I would rather the kids have coverage than me. Besides, the coverage they have now is Aetna and Aetna is paying at least some of Sain's CGM!)

This week:

Today both kids have appointments with our wonderful family doctor, Dr. Molina. Both kids are getting asthma check ups and I am hoping there is something that will help both of them. Scariest moment from the last few weeks -- both kids were having pretty bad asthma attacks at the same time when Sain wheezed, "I feel low." Fun!

The rest of the week is filled with karate and (hopefully) interviews.

Saturday is packed. We have karate all morning, demo practice after that, Sain's best friend's birthday party at the karate school, then we've been invited to watch the fights (UFC) at some folks from the karate school's house. (Thank God Georges St. Pierre is fighting -- he's the only UFC fighter I know!)

Sunday Sain (and the rest of the ACMMA demo team) will be performing on the main stage at Kent Cornucopia Days at noon and both kids will be marching in the parade afterwards.

It should be a fun week. This summer is going way too quickly!

Not feeling too creative

2009-06-25T15:44:00.000-07:00

Kate stole this "quiz" from Shelley and I stole it from Kate.

Outside my window ... two birds are having a very loud conversation in my backyard.

I am thinking ... about how arbitrary life is.

I am thankful for ... my dad (and mom, too.) My kids, my cat, friends who genuinely care about me and my sanity.

From the kitchen ... the smell of the pizza I just cooked for tonight’s dinner. Sáin’s last class tonight ends at 7:00 so we won’t be home until 7:30 so dinner has to be quick and easy!

I am wearing ... jeans, a JDRF hoodie and skate shoes – I am so predictable.

I am creating ... an interesting childhood for my kids. I feel incredibly guilty about the lack of stability in their lives but they are both happy, intelligent, well behaved kids so I must be doing something right.

I am going ... to the karate school in about 45 minutes.

I am reading ... Allie Finkle’s Rules for Girls Book 2, New Girl by Meg Cabot. Sáin and I have been reading the series together.

I am hoping ... for a new (good) job soon.

I am hearing ... Aidan shooting his Lego dinosaurs with his Nerf gun, Sáin playing her DS and Tennyson crunching his dry food.

Around the house ... there is too much stuff

One of my favorite things ... is Sáin’s Continuous Glucose Monitor. It is truly an amazing tool and worth all the insurance battles I fought/fight.

A few plans for the rest of the week ... regular karate class and demo team practice tonight. Karate picnic Saturday during the day and demo at the Kent International Festival in the evening with Sáin, Aidan and Sáin’s best friend, Hannah. BBQ with my niece, Amanda, and her amazing family whom I haven’t seen in 17 years on Sunday.

A picture to share ... Aidan’s friend Piper’s dad took some great pictures at Aidan’s party. In this one Aidan and his friend, Mason, are teaming up against their instructor, Chris in a wrestling match. Aidan is so happy!

8 Things

2009-06-05T22:32:00.000-07:00

Okay, for you, Kate, I will do this:

8 Things I'm Looking Forward To

1. Aidan’s 6th birthday party tomorrow.
2. Both kids sleeping well tonight (Thank you, Benadryl!)
3. A night alone next Saturday. (If both kids really go their dad’s place, it will be the first time I’ve been alone since November!)
4. My lawn mower getting fixed
5. The “one day vacations” Sáin, Aidan and I are planning this summer
6. The 2009-10 NHL Season – I really miss my Leafs.
7. Sleeping more than 3 hours (hopefully) tonight
8. Last but not least, a cure

8 Things I Did Yesterday

1. Ordered a Wall-e birthday cake and reminded the baker Aidan’s name is spelled “an” not “en” (Who would’ve thought Aidan would be my kid whose name is constantly misspelled?)
2. Overspent at the gluten-free bakery in Whole Foods
3. Had a camp out in the living room.
4. Ate dinner in the car, again.
5. Led a successful meeting on a corporate wellness program
6. Took my cat outside on his leash
7. Kissed my five year old goodnight for the last time (He turned 6 today.)
8. Spent over 2 hours sitting on a hard bench at the martial arts studio.

Things I Wish I Could Do

1. Cure type 1 diabetes
2. Stay at home with my kids (while still making enough money to live on)
3. Go back to school
4. run without horrible hip pain
5. move back to Toronto
6. Sleep through the night
7. Travel through Europe with the kids all summer.
8. get Sáin’s blood sugar to stay down in the hot weather

8 Shows I Watch

1. Hockey Night in Canada
2. The Hour
3. Reaper (I know, it’s not on anymore but we did watch it religiously)
4. The Simpsons
5. iCarly (Sáin’s favorite)
6. Clone Wars (Aidan’s favorite)
7. Jeopardy
8. Torchwood

Beat the Bridge -- our first 5 years

2009-05-29T07:50:00.000-07:00

2005 -- 1 month post-diagnosis and still unaware of what this
disease really meant.

2006 -- surviving kindergarten on NPH required a lot of discipline
for a 6 year old!

2007 -- first grade was still tough but the discipline was now
second nature

2008 - after a hellish 3 months on Lantus (Sain does not respond

well at all to Lantus) the pump is making life easier in second grade

2009 -- third grade with pump and CGM attached. You

would think life would be simpler now and in ways it is. But

I've learned a lot in these last five yearsand the more I learn,

the more I desperately want that illusive cure for Sain.

She doesn't deserve this -- no one does!

Our Morning by the Numbers

2009-05-26T12:04:00.000-07:00

7 – the time we dropped Aidan off at Grandma and Grandpa’s so we could make it to Sáin’s endo appointment at Children’s on time.

2 – the number of security “check points” now required to get into Children’s. (One flu check and one security badge check)

34.5 – the number of kilograms Sáin now weighs. (about 76 pounds – only 6 pounds less than I weighed when I started high school!)

139.1 – the number of centimeters tall Sáin is. (about 4 ft 7.75 inches)

4.4 – the number of centimeters she’s grown in only 3 months! (that’s 1.75 inches!)

8 – Sáin’s A1C. Not as good as we would like but it will be better next time.

205 – what an 8 A1C equates to in BG averages

6 – the number of fasts we get to do in the next two weeks in order to reset her basal rates. (I say “we” because I do the fasts with Sáin. It’s unfair to make a kid fast alone.)

.4 – the bolus Sáin needs to give herself before disconnecting for karate. I’ve been reluctant to give a bolus before karate for fear of lows but a jump of 1.1 in her A1C changed my (and her endo’s) thinking

75 – Sáin’s new sensitivity setting on her pump. (This mainly just means she’s getting bigger and requires more insulin. It’s her first sensitivity change since diagnosis.)

And, most importantly to Sáin, 3 – the number of weeks until she’s officially a 4th grader!

A year ago...

2009-05-19T11:08:00.000-07:00

I was here and I was happy.

Burn Out

2009-05-12T12:49:00.000-07:00

I am tired of this disease.

I am tired of what it does to my daughter. I am tired of what it does to my son. I am tired of the extra pressure it puts on my parents. And I am tired of what it does to me.

I am tired of having to contact the school when kids are extra stupid (Sáin deals with most playground issues on her own but I step in when need be.) And I am tired of how the other parents then perceive me.

I am tired of being on the brink of financial ruin in order to keep my kid healthy and I am really tired of the US healthcare system. Who knew prevention was a 4 letter word?

I am tired of beeps, alarms, and wonky numbers. And I am tired of not being able to fix it.

I am tired of type 2s thinking they are the same as type 1s. And I am tired of parents who freak out when their kid sneezes or falls down thinking they know how I feel.

And as tired as I am of fighting for a cure, that cure is the only thing that will eliminate the other things I am tired of.

So, I will keep fighting.

Thank you to all who have donated to our team. Beat the Bridge is Sunday and it’s looking like it might be sunny!

More than martial arts learned at ACMMA

2009-05-06T09:35:00.000-07:00

Monday is not usually a karate day so I thought that was why Sáin was so quiet after class. My dad mentioned that Master Dye had talked to the students after class but things get hectic when the kids get home so I didn’t really get to hear what they talked about.

The evening went on and Sáin was still quiet.

Just before bed she stopped Aidan in the hallway. “Promise me you will never play the choking game – okay?” He promised but didn’t really understand what he was promising. Tears filled Sáin’s eyes and I knew it was time to talk.

We talked for a good hour about the choking game, peer pressure and how one bad decision can do a lot of damage. Aidan understood some but Sáin took it all in. Some things are tough to talk about but those tough things are the most important. Please read this story and talk to your kids!

Thank you Master Dye, Jennifer, Chris and everyone at ACMMA for keeping my kids safe in so many ways!

Our Weekend

2009-04-29T09:01:00.000-07:00

We spent this last weekend in Vancouver. It was great to see the folks up there and just nice to get away for a day or two.

The kids spent a lot of time in the pool. It was nice to have an indoor pool since the weather wasn't too warm. We discovered sensors don't stay in the best when you spend long hours in the pool -- even when double taped!

Sain and Nikitta had fun drawing on the sidewalk. By the end of the evening the entire area was covered. When it got dark they continued their drawings inside.

Aidan was so happy to see Aunt Connie and to show her how happy Dogdog is. (Connie got Dogdog for Aidan when he was born.)

(Sain, Aidan, Connie and Kelton -- I can't believe Kelton is almost 17!)

On the way home we made one last stop before the border -- this is our favorite park in White Rock.

Encouraging Stuff!

2009-04-14T14:52:00.001-07:00

http://uk.reuters.com/article/rbssHealthcareNews/idUKN1338055520090414

Very random happenings from the last week, or so

2009-04-14T10:32:00.000-07:00

I've been negligent and not posted in a bit... sorry. I was having a bit of a contemplative Holy Week with too much on my mind. I think I'm back to normal now. (Have I ever really been "normal" though?)

05 April was Sáin’s 4th diagnosis anniversary. We played it pretty low key this year. To “celebrate” Sáin, Aidan and I went to Sheri’s for dessert… it seemed fitting to celebrate diabetes with sugar!

The rest of the week was pretty mellow. (There is a funny story about Aidan singing “spider pig” from the Simpson’s movie when we were supposed to be quietly walking out of church on Palm Sunday but besides that there was lots of karate, lots of school work, lots of Easter prep)

Last Saturday we attended the late night Easter vigil. Things were going along well until I heard (almost simultaneously) the distinctive CGM alarm and the four dreaded words, “Mom, I feel low.” Sure enough, Sáin was low (62) but I had planned ahead and packed 2 extra juices. We treated and thought all was clear.

About 15 minutes later I look over and Sáin is staring off into space with a glazed look on her face. I test – 54. Luckily I have the second juice. Sáin drinks and quickly looks better.

Another 10 minutes later we are to communion and I hear those dreaded words again. We test and she’s only 55. At this point I start to panic – I’ve got no more fast acting sugar with me. We somehow make it through communion (the only thing I could think at this time was how much I wish the body of Christ had a lot higher carb count) and quietly sneak out.

I awkwardly carried my 74 pound kid back to the car – conveniently parked blocks away at the request of our priest to leave parking spots for the folks who do not attend as often. I got 2 more juices in her and all seemed well.

The rest of Easter was calm. The kids made out like bandits with money from both the Easter Bunny and Grandma and Grandpa (more from Grandma and Grandpa – the Easter Bunny’s really feeling the economy!)

Yesterday Sáin was back in Urgent Care with yet another broken toe. How sad is it that both the ER at Children’s and Valley Medical Center’s Urgent Care clinic know us by name? The doctor said she probably broke it mid-week last week and that it’s healing nicely. He was concerned that she might’ve broken the foot because of all the swelling but it turned out to only be the toe.

And, probably the most important thing, HAPPY 75th BIRTHDAY, DAD! (pow, pow, pow, I got you!)

Emily Dickinson and Diabetes

2009-04-01T20:39:00.000-07:00

I know, a strange pairing but Emily Dickinson best sums up how I feel now.

For someone with a known temper, I can deal fairly calmly with people spreading over-generalized, misinformation about diabetes. We've been forced to for 4 years.

I can deal fairly calmly with a lot of "best of intention" type things. At least people are trying, right?

What I am finding it really hard to deal with is my daughter being told by someone she really, really respects that there will probably never be a cure for diabetes. Especially since it was in a class setting during the time Sain is raising money for her cure!

Sain lives for a cure, she dreams of a cure, every prayer in our house ends with "and a cure for diabetes." Sure we have our days of doubts but her life depends on that cure and to have someone she idolizes tell her (and a group of other kids) that there won't be a cure is devastating.

So, to Emily Dickinson we go. This is how I feel right now:

It dropped so low in my regard
I heard it hit the ground,
And go to pieces on the stones
At the bottom of my mind;

Yet blamed the fate that fractured, less
Than I reviled myself
For entertaining plated wares
Upon my silver shelf.

-- Emily Dickinson

Our 2009 Beat the Bridge Video - enjoy!

2009-03-19T21:22:00.000-07:00

My sweet kids (and a couple new pictures)

2009-03-17T21:20:00.000-07:00

While I was getting Sain and Aidan ready for bed this evening we were discussing what they would do if they found a leprechaun's pot o'gold. Aidan would buy lots of lego and Sain could go on a shopping spree at Justice -- you could see the dreaming in their eyes.

As is usually the case, after I close Aidan's door and get Sain in her bed, Sain goes in one last time to give Aidan a hug. Usually I am out in the living room by this point in our night time ritual but I hadn't made it that far this today. Here is what I heard:

Aidan: "Sain, what will we really do when we find the pot o'gold?"
Sain: "I think we should buy something for mom. She never buys herself anything."
Aidan: "Let's get her Leafs tickets."
Sain: "Good idea -- we'll look for the gold tomorrow before school. I think it's by the 4th grade portables."

As much as they drive me crazy at times, I wouldn't trade Sain or Aidan for anything!

(Sain at the master Lego event a few weekends ago)

(Aidan and Grandpa at the master Lego event)

(Aidan and Xavier at the St. Patrick's Day prayer service)

St. Patrick's Day

2009-03-16T21:42:00.000-07:00

We've spent much of the evening preparing for St. Patrick's Day. The kindergarten kids put on the school prayer service and Aidan has a speaking part. This is bitter sweet -- I am happy for him and extremely proud but, having just started a new job, I can't get the morning off so I won't get to see my big guy say, "May God always teach us." Aidan could tell this made me sad so tonight he performed the entire prayer service for me, songs and all. It was cute. (Grandma, Grandpa and Dogdog will be there so Aidan won't be alone. And, of course, Sain will be there, too.)

We also made Aidan's leprechaun trap for school his evening. Aidan thought we should just bring a Guinness to school and open it once we get there, "No leprechaun can resist an open Guinness." I tried to convince him that Sister Linda wouldn't really approve of an open Guinness at school and in true little Irish boy fashion he shot back, "Oh Mommy, it's not beer, it's Guinness. Sister Linda will understand because I'm Irish." If any kid could get away with it Aidan would but I'm not willing to take that chance. We settled on a pretty good trap made of a small garbage can (shaped like a cat) whose lid (mouth) closes when the leprechaun climbs in to get the fake gold we put in it. Aidan and I have a deal -- he gets to keep the leprechaun and I get the pot of gold.

Sain is busy making St. Patrick's Day cards for her friends. I know she should be in bed right now but the cards are so cute. Her numbers have been really good of late -- I think I've only had a handful of calls from the school nurse this month. The calm times scare me because I can't shake the feeling something is waiting around the corner. Oh well, I will try to relax and enjoy the even numbers.

Have a great St. Patrick's Day!

Happy Friday

2009-03-13T11:34:00.000-07:00

The kids come to my office at the end of the day on Tuesday and Thursday so I can take them straight to karate. Sain left this note on my whiteboard -- it is really brightening my day!

Happy Friday!

Today is a special day...

2009-03-09T16:08:00.001-07:00

Happy Birthday, Mom!

Some Pictures (and a few words)

2009-03-04T19:21:00.000-08:00

I realise I've been a bit lazy about posting. It's been an exhausting time between getting laid off, getting a new job, and fighting insurance battles all while trying to keep some sense of normalcy for the kids. Slowly things are starting to feel normal again (or at least as normal as life in our family gets.) Here's a bit of the last couple weeks complete with pictures:

One of the best parts of not working for a couple weeks was getting to pick the kids up from school. We often went to the park after school to play for an hour or so. The above picture shows that Sain is much like her mom and likes to read under the trees by the beach.

Another highlight of my time off was getting to take the kids to all their karate classes. The picture of Aidan is taken before class and he's holding Honey the KA mascot. More on Honey below.

Of late I've been catching glimpses of Sain out of the corner of my eye and I think it has to be someone else. She's really growing up! It's amazing to think that only a couple years ago she was the little girl in pig tails and ruby slippers learning to test her own BG. Now she's a mature pre-teen whose grasp of her disease impresses even the toughest endocrinologist.

Every weekend one of the kids in Miss Rassilyer's KA class gets to take Honey home. Aidan's weekend was in February. We took Honey to karate, to a diabetes support group meeting, to mass, to Denny's for dessert and to grandma and grandpa's house. This picture is on Friday night when we were at JoAnn's getting supplies to make Honey's gi. (You can see the gi in the picture of Honey and Aidan at karate -- if you look closesly, you can see that I even added patches like the ones on Aidan's gi. I have no idea where my kids get their perfectionism from :) )

My fight for coverage (the coverage I have an autorisation code for!) for Sain's CGM continues and, despite my last post, I will fight for them. Sain had a complete eye check with retinal pictures and endo check up last week and is doing great. I plan to keep it that way and the CGM is an important part of our life. Her A1C was 7.1 which is amazing considering she's been to the ER 3 times in 3 months with dangerously high blood sugar. (She's been sick all winter -- I swear the flu shot this year did nothing!) Besides, if Sain didn't get sensors, what would Aidan's lego men use for jet packs? (see picture above... Sain absolutely hates it when Aidan and I do this with her old sensors but what else would I do with them?)

I give up

2009-02-24T13:25:00.000-08:00

I give up. Now Aetna is saying CGMs are experimental and claiming they never approved them for Sain.

If Medtronic can't get this straightened out -- I quit!

I guess my life is destined to involve 12 am and 3 am BG tests! Silly me for wanting the best for my kid... I should've know this is the country where money talks and people don't matter.

I guess maybe I should just find a good lawyer and sue them the next time something goes wrong. Isn't that the American way?

Random happenings and updates

2009-02-16T19:30:00.000-08:00

I realise it's been a bit since my last post. These last couple weeks have been busy and kind of tough. Here are some updates and happenings:

On the job front -- after only two weeks of unemployment, I am starting a new job tomorrow. I interviewed early last week and got the offer by the end of the week. I am pretty excited. Although it involves a pay cut that will make things a bit tougher than I would like, I am proud of myself getting back in the workforce so quickly in this ecomony.

Sain update -- Sain is growing up so fast. She belt tested a little over a week ago and should get her promotion within the next couple weeks. The Tuesday after testing she got pushed by a brother and sister combo in class and ended up breaking her toe. She's got one more day of complete rest and two more weeks of no running or kicking but is healing nicely.

As for diabetes, things have gotten better since she got over the virus earlier this month. It's really hard because she is learning more and more about complications. With February being heart month, Sain has studied up a lot on heart disease. It's tough hearing your 9 year old talk about complications... her biggest fear is blindness. My biggest fear is outliving my baby.

Aidan update -- Aidan is learning and growing so quickly. Kindergarten is an amazing year. He's really picking up on reading and writing. Aidan also graduated from the "L" in speech and is now working on "J"... I had to re-play the voicemail Sister Maureen (his speech therapist) left telling me about his progress over and over again because Aidan is so proud of his how well he's doing. I'm pretty proud, too!

Aidan also did a testing in karate and earned his first patch... this is a pretty big deal because he won't be able to belt test until he's 7. He's now a white belt with two stripes and one patch.

I am sure there is much more I should write about but Aidan is pestering me to do Club Penguin so that will have to be all for now. 5 year olds aren't too patient!

"Mommy, I feel stressed"

2009-02-09T19:02:00.000-08:00

That was the response from Sain when she read this:

Dear Angie,
Kids with diabetes in Washington are in danger, and we need
your help! The Washington Senate is currently considering SB 5880, legislation that would remove ALL health protections for kids in school. We need to
oppose this bill!
SB 5880 would repeal protections put in place to help kids
with diabetes in school. It would deprive students with diabetes of
important state law protections that currently allow them to self-monitor and
manage diabetes in their classrooms, including carrying their diabetes supplies and equipment. It would turn back the clock on the progress we have made
to make sure that students with diabetes are safe at school when a school
nurse cannot be there by having trained volunteer staff available to
administer insulin to those who aren’t yet able to self-administer and to
administer life-saving glucagon in the case of a diabetes emergency. In
other words, SB 5880 jeopardizes the lives of students with diabetes.
This legislation was introduced on Thursday and had the public hearing that
afternoon, with no warning or opportunity for debate. Today, SB 5880 will
be heard in executive session in the Senate Education Committee. If you don't
act now, SB 5880, legislation that threatens the health of our children,
will be one step closer to becoming law.
Please contact the members of the Senate Education Committee and Sen. Fred
Jarrett TODAY and urge them to oppose SB 5880 and protect students with diabetes in our schools. Click on Take Action Now to send your letter.
Take Action Now!
Want to do more? Call Sen. Jarrett
(360) 786-7573 and express your opposition to SB 5880!
Thank you for being a Diabetes Advocate!
Laura KellerAdvocacy Director - Northwest/Pacific
RegionAmerican Diabetes Association

As if these kids don't have enough things to worry about now there is this. Thank you, Washington State government!

Sain has already sent emails to the senators. Part of me is extremely proud of Sain's advocacy for her own cause but another part of me is sad and protective. School is supposed to be a safe place and Senator Jarrett doesn't seem to understand that.

The Untitled Post

2009-01-29T14:29:00.000-08:00

There are days in your life you will always remember. Yesterday was one of those for me.

I could and should write a lot but I don't have it in me right now.

Yesterday consisted of two less than happy events:

1. Sain is really sick again and ended up back at the ER at Children's She's doing better today and looks to heal soon but it struck me yesterday while talking to the doctors and nurses that I really do know my daughter's diabetes better than any of them. (I got reprimanded for not following "sick day protocol" to the letter. Silly me for doing what actually works for my kid!)

2. I got laid off yesterday. I knew this was coming. I, being the only HR person at the company, had to prepare and process my own lay off. How fun is that? I can honestly tell you, as the parent of a chonically ill child it is more scary losing health insurance than it is losing income. (don't get me wrong, the income part is scary but the health insurance part is more scary)

So here I am, an unemployed single mother of a chronically ill kid. I can't wait for someone in an interview to ask me, "Where do you see yourself if 5 years?" I can tell you for certain that five years ago this is not where I thought I would be!

(I am actually doing okay. Sometimes I wish I couldn't handle things so well -- I think that might actually be more healthy. Oh well, on with the job hunt :) )

Had to share

2009-01-22T15:06:00.000-08:00

I got this from a co-worker the other day... we're thinking of ordering in bulk!

How has diabetes changed our lives?

2009-01-21T10:23:00.000-08:00

Both kids got to watch the inauguration at school yesterday. As we were getting ready for bed I was told this:

"He said science, Mommy. He said he wants to advance science. He cares about our cure. Our president wants to help us. It makes me so happy I want to cry"

This was from Aidan. My 5 year old, non-diabetic kid who loves his big sister so much that science became the most important part of Barack Obama's inauguration.

05 April 2005 didn't just change Sain's life or my life, it changed Aidan's life, too.

Girls are mean!

2009-01-20T12:40:00.000-08:00

As much as I love the school Sain and Aidan attend, there's a downside to private school.

PRINCESSES -- lots and lots of spoiled little princesses.

These girls have never heard the word "no", think money is all that counts and think if your family happens to be something other than the "typical" two parent family you are some sort of freak.

There are two girls in particular that bother Sain. One was more of a problem in first and second grade. She definitely fits all aspects of a princess but seems to be starting to realize Sain is not the girl she wants to mess with.

The other is more annoying and bit more of a problem. Last week she threw a ball right in Sain's face during PE. This throw was not an accident -- she was a foot away and Sain had her hand out asking for the ball. The PE teacher's response "these things happen in PE." Fortunately, the school nurse was there at the time and Sain's homeroom teacher dealt with it later as well.

This same girl also consitantly points out to Sain how "having diabetes makes you different from all of us" and how "sad it must be to have divorced parents" and how "poor you must be since you only have one parent."

This girl's mom and I don't get along (haven't since she fed my kindergarten diabetic 8 sugar cookies at a girl scout meeting -- to this day she can't understand why I was angry -- if she only knew what I wanted to say to her but didn't she would really have reason to hate me) so it would do no good to try to speak with her. I also feel like my hands are tied a bit because this family contributes quite substantially to the school.

The school is aware of the problem and Sain knows she can talk to a number of different designated adults if there's a problem and her teacher has been wonderful and dealt with everything right away.

That said, I hate to see my kid picked on. She feels different enough already -- why does a mean little girl who's had everything handed to her on a silver platter feel the need to put Sain down?

(Part of me wishes this girl would push Sain to the edge and Sain would show her just how tough a poor, single-parented diabetic girl is.)

Seriously? (part II)

2009-01-13T10:05:00.000-08:00

Looks like Medtronic billed Aetna incorrectly. I will be reimbursed the money I just shelled out to keep out of collections and the sensors will be covered.

Seriously?

2009-01-13T09:43:00.000-08:00

So, I just got a call from Medtronic and in order to avoid going to collections I need to pay the HUGE balance on my account?

What?

Oh yes, it continues. It seems Aetna, after approving the CGM, hasn't paid ANY of the bills. Nice! Do they think I am made of money? Seriously, if I had the money to pay for these things, you know, the things that help keep my daughter healthy and alive, I wouldn't have to fight the insurance for them.

The other day Sain asked me if I hated anyone. I told her no but now I think that's changed.

Stupid people!

Are you sure yesterday wasn't Monday?

2009-01-07T12:37:00.000-08:00

I woke up tired - more tired than normal. It felt like Monday despite the calendar assuring me it was Tuesday so I pushed on.

Everything took too long -- traffic was bad, the kids were slow getting ready, even my computer seemed lethargic. Time passed slowly.

9:00 the Simpson's Theme rang out from my phone. I jumped -- the ringer was set entirely too loud for a quiet office. I also jumped because a Simpson's ring at 9:00 means something's wrong. Sain was 499 - ugh! I knew we were pushing it going 4 days on the same infusion set but I was hoping it would last until the evening.

I had them do a correction.

By 10:30 the numbers were down but only a little bit so I was off for an early "lunch". I swung by the house 45 minutes after I left work thanks to traffic, grabbed supplies and headed down to the school. Sain met me in the health room, we did a site change, entered in a correction bolus along with her lunch bolus and I was on my way.

By karate that evening, Sain's numbers were looking better. I was relieved.

Fast forward to 10:00 pm. I hear the distinctive beep, beep, beep of Sain's pump. LOW BG. I check -- 62, juice (the blue juice she hates but that's all that was left) and retest (84 with one up arrow.)

11:47 pm -- beep, beep, beep. Test, juice, test.
2:03 am -- beep, beep, beep. Test, juice, test.
4:12 am -- beep, beep, beep. Test, juice, test.

By 6:15 she was good and stable -- 150 with no recollection of the "beepy" night we had. (side note, it's amazing how well diabetic kids can drink in their sleep!)

Please Help

2009-01-05T10:15:00.000-08:00

With a change in government comes a change in FDA leadership. It is the hope of many in the diabetes community that the new leadership of the FDA will take the needs of the millions living with diabetes more seriously.

Many of you know our personal struggles in getting the technology needed to better manage this disease. Sadly, this struggle is not uncommon.

Please consider signing this petition. (The full wording is below.) Sain and the millions of children and adults living with this disease (and those taking care of them) thank you!

**********************************

We, the undersigned, appeal to the leadership of the U.S. Food and Drug Administration (FDA) to reduce barriers to innovation in diabetes treatment development, in the interest of public health.

The FDA's job is to protect the safety of patients in its use of drugs and medical devices and to advance public health by speeding innovations that make medicines and technology more effective, safer and more affordable. That is its mission.

But we believe the FDA has adopted a stance of excessive caution in its regulation of diabetes drugs and technology that is counter to its duty to serve patient needs.

Specifically, it has established new rules that will impair research and innovation into diabetes therapy. (A copy of the letter sent to manufacturers in November 2008 can be found at www.diatribe.us/fdaletter.)

This worries us. For example, new requirements for additional multi-year long-term outcome studies prior to approval for drugs with no cardiovascular signals will assuredly discourage research and innovation to the detriment of public health.

The need for improved treatments for the 24 million Americans with diabetes could not be clearer. Many of the drugs available now have tolerability issues [1]. Poorly controlled diabetes increases the risk of devastating long-term complications, including blindness, end-stage renal disease, amputation, and heart disease. Complications cost our country at least $58 billion per year [2] %u2013over twice of what is spent on technology and therapy annually [3].

Nearly 50 percent of patients in the US do not meet A1c goals [4] using current therapies and technologies. No therapy today stops diabetes from advancing. As patients are living longer with diabetes and therapies stop working, the need for new therapies increases. We need better technology and drugs that help slow or avoid long-term complications as well as more therapies that cause fewer side effects1 and last longer. And, despite the epidemic in the number of diabetic patients, no drugs are yet available that can prevent diabetes. Innovative, safe, and effective prevention is the key for people at risk and for cost savings to society.

Ironically, excessive regulatory hurdles ensure the continued use of the very drugs and devices that have proven ineffective for many patients.

There is no value in an ideal diabetes drug or device if the regulatory costs are so great that the product never makes it to market. Make rules reasonable.

Due to the very nature of the severity and prevalence of diabetes, the following leaders within the diabetes community, who have signed this petition, implore the FDA for the immediate creation of a Diabetes Advisory Council, whose goal would be to improve options for patients. This council would include practicing endocrinologists, diabetes educators and others communicating directly with patients. Our experience, focus, and keen awareness of the needs of the diabetes community would be an invaluable resource to the FDA as it faces the arduous process1 of evaluating new diabetes treatments. Our aim is to improve options for patients.

We urge the new FDA leadership to recognize the urgent need for more safe and effective treatment options for diabetes and to reduce barriers to innovation. More treatment options will benefit patients. The disease is progressive. Delays in the availability of new treatments will only result in tremendous cost to public health and the economy. Our recommendation can benefit patients without sacrificing their safety.

Please sign this petition and tell others about it. Make your voice heard!

Learn more about the issues here:
Problems at FDA prompting slowdowns in development - should patients accept this?

The FDA in Transition: Diabetes Treatment at Risk

The FDA Needs Your Input on Diabetes Medicines!

Petition sponsors:
Kelly Close: Editor, diaTribe
Manny Hernandez: President, Diabetes Hands Foundation; Founder, TuDiabetes
Amy Tenderich: Creator and Author, DiabetesMine
Allison Blass: Author, Lemonade Life
Jennifer Block, CDE: Stanford Medical Center, Stanford University
Nancy Bohannon, MD: Director of Clinical Research, CVD Risk Reduction Program, St. Luke%u2019s Hospital, San Francisco
Bruce Buckingham, MD: Professor of Pediatric Endocrinology, Stanford University
Stead Burwell: CEO, Alliance Health Networks, Inc.
Priscilla Call Essert: Author, My Life As A Pancreas
Gina Capone: Co-Founder, the Diabetes Talkfest Blog
Kitty Castellini: Founder, CEO, Producer and Host, Diabetes Living Today - Talk Radio
David Edelman: Co-Founder, Diabetes Daily
Steve Edelman, MD: Professor of Medicine, University of California, San Diego; Founder, Taking Control of Your Diabetes
Bernard Farrell: Author, the Diabetes Technology Blog
James S. Hirsch: Author, Cheating Destiny
Irl B. Hirsch, MD: Professor of Medicine, University of Washington
Lois Jovanovic, MD: CEO and Chief Scientific Officer, Sansum Diabetes Research Institute
Francine R. Kaufman, MD: Professor of Pediatrics, Keck School of Medicine, USC; Head, Center for Diabetes, Endocrinology and Metabolism, Childrens Hospital Los Angeles; former ADA President
Tom Karlya: Author, Diabetes Dad
Rebecca Killion: Diabetes advocate
David Mendosa: Diabetes Journalist
Kerri Morrone Sparling: Author, Six Until Me
Jenny Ruhl: Author, Blood Sugar 101
Lisa Shenson: Diabetes Parent & Advocate
Scott Strumello: Author, Scott's Web Log
Virginia Valentine, CNS, BC-ADM, CDE, CEO, Diabetes Network, Inc. Albuquerque, New Mexico

Notes:
[1] "Glycemic Durability of Rosiglitizone, Metformin, or Glyburide Therapy," New England Journal of Medicine, December 7, 2006. ADOPT, a four-year clinical trial of over 4,000 patients, was designed to test the how long diabetes therapies last. In this trial, 23% of those on sulfonylureas (SFUs) and 38% of those on metformin experienced nausea, diarrhea and/or vomiting from taking the drugs. 10% of those on TZDs, 11% on metformin, and 39% on SFUs experienced hypoglycemia. 7% and 14% of those on TZDs experienced weight gain and edema. 12% on women on TZDs experienced fractures. The trial also found that within five years of starting therapy, 15% of those on rosiglitizone (TZD), 21% on metformin, and 34% on glyburide (a sulfonylurea [SFU]) had fasting blood glucose over 180 (~ roughly equivalent to an 8% A1c), suggesting that even if patients could tolerate the therapy, it wouldn't last longer than a few years for many.

[2] "Economic Costs of Diabetes in the US in 2007," Diabetes Care, March 2008, page 13.

[3] "Economic Costs of Diabetes in the US in 2007," Diabetes Care, March 2008, page 13.

[4] "Is Glycemic Control Improving in US Adults?," Diabetes Care, January 2008, page 81.

2008 Survey

2009-01-02T13:22:00.000-08:00

Stolen from Kate's blog because I'm too preoccupied to come up with one on my own. (thus far 2009 appears to be the year of high blood sugars and moderate ketones - UGH!)

1. What did you do in 2008 that you’d never done before?
All things related to an insulin pump and CGM and I cried in front of a senator. (actually I was a blubbering mess trying to tell Sain's diagnosis story to a senator)

2. Did you keep your new year’s resolutions, and will you make more for next year?
I tend not to make resolutions

3. Did anyone close to you give birth?
Yes, one friend had a baby in May.

4. Did anyone close to you die?
No

5. What countries did you visit?
Canada and US

6. What would you like to have in 2009 that you lacked in 2008?
A cure

7. What dates from 2008 will remain etched upon your memory, and why?
24 January – Sáin started on her insulin pump
05 April – Three years with this disease
19 May – Finally back in Toronto (only for a week)
29 July – We found out about Gloria’s stroke
17 September – Approval for Sáin’s CGM
02 October – Sáin started on her CGM

8. What was your biggest achievement of the year?
Fighting and winning a CGM battle with two insurance companies

9. What was your biggest failure?
Missing too many events with good friends

10. Did you suffer illness or injury?
My hips are getting progressively worse (it’s hard for me to admit that) and, as always, I am the poster child for insomnia.

11. What was the best thing you bought?
Medtronic Paradigm 522 insulin pump (aka “Pumpy”)

12. Whose behavior merited celebration?
Sáin for being amazingly tough, Aidan for being Aidan, and my parents for being supportive.

13. Whose behavior made you appalled and depressed?
Most politicians and political commentators, Greedy insurance execs and people who only know ½ the story when making assumptions

14. Where did most of your money go?
Medical, tuition, gas, Diet Mountain Dew

15. What did you get really, really, really excited about?
CGM and the trip back to Toronto

16. What song will always remind you of 2008?
Any of the millions of kindergarten songs Aidan constantly sings

17. Compared to this time last year, are you:
a) happier or sadder? I think happier.
b) thinner or fatter? About the same.
c) richer or poorer? About the same.

18. What do you wish you’d done more of?
Sleep

19. What do you wish you’d done less of?
Wondering whether Mats Sundin would return to the Leafs. I think they are way better off without him. Good luck Canucks!

20. How did you spend Christmas?
At the Fairmont Hotel Vancouver with my kids – opening presents, going out for brunch, swimming and ordering room service while watching “Willy Wonka and the Chocolate Factory”

21. Did you fall in love in 2008?
I fell in love with Sáin’s pump and CGM but that’s probably now the love you’re wanting.

22. What was your favorite TV program?
Hockey Night in Canada and The Hour

23. Do you hate anyone now that you didn’t hate this time last year?
I’ve found hating is a waste of time and energy.

24. What was the best book you read?
“Heart and Soul” by Maeve Binchy

25. What was your greatest musical discovery?
The Fratelli’s (I like Brit Pop)

26. What did you want and get?
Pump and CGM

27. What did you want and not get?
A cure, winning mega millions ticket, a playoff berth for the Leafs (I really want a Stanley Cup but at this point I would be happy for some post season action.)

28. What was your favorite film of this year?
“Wall-e” and “Love Guru”

29. What did you do on your birthday, and how old were you?
I don’t celebrate my birthday so I worked and turned 36.

30. What one thing would have made your year immeasurably more satisfying?
A CURE

31. How would you describe your personal fashion concept in 2008?
Jeans and hoodies

32. What kept you sane?
Really? You’re assuming I’m sane? Sanity is something that checked out 05 April 2005!

33. Which celebrity/public figure did you fancy the most?
George Stroumboulopoulos

34. What political issue stirred you the most?
Healthcare and research funding

35. Who did you miss?
My sister

36. Who was the best new person you met?
Aiye (if you’re reading this – I really am glad we’ve met), other diabetic parents online, and the folks at the karate school

37. Tell us a valuable life lesson you learned in 2008.
It might be tiring caring for a diabetic child but it’s a heck of a lot better than the alternative.

38. Quote a song lyric that sums up your year.
I see seven towers
But I only see one way out
You’ve got to cry without weeping
Talk without speaking
Scream without raising your voice

Difficult Questions

2008-12-30T12:27:00.000-08:00

I can remember a time when life was much more black and white than it is now. Although I am certain I am a better person for my grasp of the many shades of grey, I long for the days of black and white, good and evil, right and wrong.

But those days will never come back.

There is something I long to blog about, something that has happened in our world, a twist in the plot, fork in the road (you choose the cliche), but it is not my story to write. So I will honor privacy out of respect for a little girl I hardly know.

Instead I will write this...

Caring for a diabetic child is hard. It is something that takes time and effort and a heck of a lot of sleepless nights. But we (the many parents of diabetic children) do it because the consequences of not doing it are unthinkable.

None of us asked for this challenge but it was one given to us. I don't get religious in my blog -- there are plenty of religious blogs out there already -- but I view taking care of Sain as something God trusted me to do and I take it very seriously.

Now comes the difficult question -- how do you respond to a child who realizes at the age of 9 that the right answer to a tough question is not the easy answer and that same answer is not what everyone wants to hear?

I responded with honesty.

In the last weeks I have repeatedly promised Sain I will always take care of her and work with the amazing people around us to provide all the best care for her. Thank you Mom and Dad for being my back up(and for promising me you will always put Sain's well-being before mine)and Thank you Children's Hospital for guiding me and for providing a safety net even if people can't understand it.

Kindergarten Christmas Play

2008-12-22T15:16:00.000-08:00

Last Wednesday was the St. Anthony School KA Christmas Play. They did an amazing job!

If anyone doubts that Aidan is a ham -- check out the video. He's the shepherd in the red.

Have a Merry Christmas! Hopefully we are off to Vancouver tomorrow (as long as Amtrak will coorporate.)

Christmas

2008-12-21T16:48:00.000-08:00

This year I feel a lot like Cindy Lou Who.

Snow

2008-12-16T10:44:00.001-08:00

Maybe Pavlov was onto something

2008-12-12T11:46:00.001-08:00

I don't remember hearing Sain's alarm. I don't remember getting out of bed. Nor do I remember grabbing her meter on the way to Sain's room.

It was just after 1:00 am. I woke up and there I was -- sitting on the side of her bed, meter and lancing device out, test strip in. The pump was beeping so I silence the alarm, grabbed one of Sain's abused fingers and poked.

246

Not terrible... I know, a little high, but not the worst. I gave her a small correction and went back to bed.

I don't know how long it took Pavlov to train the dogs to respond to the bells but it appears it only took "Pumpy" (if you know Sain then you know she names EVERYTHING) 3 months to train me.

Time for another countdown

2008-12-10T11:05:00.000-08:00

It seems time for another countdown although the way I formatted this I guess it's a "count-up":

1 day until the Christmas concert at school. Sain and Aidan have grown up so much in the short time I've been attending the St. Anthony's Christmas Concerts.

2 days until Seven Brides for Seven Brothers with the SMU folks but more importantly 2 days until Gloria gets to go home. If you need an example of a modern day miracle, read through this.

7 days until Aidan's kindergarten Christmas Play. This year the lead Sheppard will be my favorite role... 3 years ago Gabriel was my favorite.

14 days until we head to Vancouver for Christmas. It might be viewed as selfish by some, but I am really looking forward to Christmas alone with my kids.

46 days until the JDRF Jump Event

159 days until Beat the Bridge 2009. It's hard to believe this will be our 5th year fighting for a cure. In ways it seem like we've always lived with this disease; in other ways it feels like just yesterday Sain was diagnosed. A lot has changed in 4 years!

Stupid Ketones

2008-12-09T07:54:00.000-08:00

Nothing like high blood sugars and ketones to ruin a morning. Hopefully Sain will be feeling better after a quiet day resting at Grandma and Grandpa's house!

Our new tradition?

2008-12-05T12:37:00.000-08:00

Aidan is having a tough time this month. Everything at school is Advent**, everything on TV is Christmas, and even all the announcements at karate are holiday related. Each morning he wakes up and asks me, "Is it Christmas yet?"

(He even tried to convince me that if I light all 4 candles on his Advent Wreath Christmas would come more quickly.)

Put Aidan's impatience together with the lack of sleep from excitement and you've got one very cranky little boy. But I came up with a plan.

Today I went to Target at lunch and bought both kids 20 $1 toys and candies. Each day until Christmas they get to unwrap a small gift. Each gift has a letter A - S on it. Rather than have them randomly draw a letter out of a hat, I made origami fortune tellers (three for each kid - one red, one green, and one white) and made each letter be a fortune. Once they choose a letter I have stickers to cover it up so we won't choose that again.

When I ran the idea of a small(I emphasized small) gift every day until Christmas by Aidan last night be thought it was great. Even better, he behaved all evening and was in a great mood this morning.

Hopefully it will work and Advent won't be such an overwhelming time for him.

** Next week is the Christmas concert at school. Sain is excited to wear her new boots. (I can actually fit my foot in her new boots -- she's getting too big!) The following week is the kindergarten Christmas play. I have to brag and say that Aidan has a speaking role. He's the lead shepard. That is a huge accomplishment for a little boy who is in speech therapy twice a week and will probably continue that way for the next few years.

We Got The Letter!

2008-12-01T16:59:00.000-08:00

YIPPEE -- we got the letter in the mail this evening saying "no new autoantibodies" for Aidan! I have never been more happy to receive a piece of mail in my life!

Lows

2008-12-01T12:22:00.000-08:00

"Lows suck" -- Sain

In the middle of Ikea, on the day after Thanksgiving an alarm sounded.

The alarm wasn't loud and no one else heard it. No one else stopped. But my heart stopped. Thank God for CGMs.

I pulled Sain (truthfully a shell of Sain -- a vacant, quiet, pale shell of my vibrant 9 year old) to the side. She grabbed a stuff kitty to comfort her and I grabbed her meter.

43

I kick myself for grabbing only her meter from the car and not the overly packed kit but I thank God when I look up and see we are right next to the cafe. I cut in line, grab a kids cup, throw $2 at the cashier and rush to the fountain drinks.

I didn't yell at the woman taking her time getting Coke -- I just shove my cup under the Sprite. "It's not a matter of life and death if you get your Sprite you know." I say nothing because getting to Sain was far more important than a confrontation but I make a mental note to myself never to use that phrase again.

Sain drinks.

55

I refill.

58

I refill, again.

Sain feels sick. She's not used to sugared soda so we sit and wait for the sugars to kick in. (She still has the kitty in her hand.)

20 minutes pass and she continues to sip her Sprite.

121

We finish our shopping (which included her new kitty she fittingly named "Hypo") and head home.

On the way home I asked Sain what lows are like. "Lows suck," she said. Then she hugged Hypo and cried.

Because I'm not feeling overly creative...

2008-11-25T08:04:00.000-08:00

Outside my window...lighter than normal traffic on Willows Road. (The cool thing about my work location is that I can look across the valley and see the area where my grandparents lived. It makes me feel less alone. The uncool thing about this location is the hellish commute.)

I am thinking... that next year I need to ask for the Tuesday before Thanksgiving off so I can volunteer at Grandparents Day at St. Anthony's.

I am thankful for...insulin, my kids, my parents, Tennyson (my cat, not the poet), Fredrick Banting, Medtronic, JDRF, great teachers, friends, other bloggers who know what it's like to have a type 1 kid, Diane Kane (Sain's health room coordinator who does an AMAZING job!).

I am wearing.... jeans, skate shoes and a Maple Leafs hoodie. (how predictable!)

I am creating...a manual for my job, Christmas cards, and the early drafts of this year's Beat the Bridge letter.

I am going...slowly insane :) No, I guess I am going home then to the karate school but that's not for quite a while.

I am reading...Lady Oracle by Margaret Atwood.

I am hoping...for a cure, stability, snow, peace, a Stanley Cup for my Leafs.

I am hearing...the hum of the HVAC and someone typing a few cubes away.

Around the house....Tennyson is probably having a wild party (or sleeping.)

One of my favorite things...the sound of blades on ice (a hockey person will understand.)

A few plans for the rest of the week: Work, karate, work, karate, Thanksgiving at my parents, sleep, then more karate.

Our Weekend

2008-11-24T08:16:00.000-08:00

High, High, Low, Lower, dangerously Low, Low, Really High, low, low, low, high etc.

UGH!!

I love that my kid is growing and growing up but man is it wreaking havoc on her blood sugars!

(She's doing better now but it was definitely a fun weekend!)

Also, Sain is no longer a white belt... she's now an Orange Recommended! (I will get the picture up on Flickr tonight.)

snow

2008-11-20T10:16:00.000-08:00

I miss Toronto a lot today.

Worries

2008-11-19T15:09:00.000-08:00

I am hoping by writing this I will somehow make my worry go away.

Back story -- Aidan is a part of a research study that tracks to progression of diabetes. He was genetically tested at the age of 3 for a gene linked to diabetes. He has it. Aidan was also tested for autoantibodies linked to diabetes. He has them. For two years he's had no progression. Just because he has the gene and autoantibodies doesn't mean he will develop the disease... they keep reassuring me this.

Jump ahead to Aidan's 5th birthday. I have Aidan's bloodwork done every birthday (nice present, eh?) and wait for the letter saying everything is fine. This year I got the phone call asking me to bring him back in for a second blood draw. Aidan's second blood draw was in early September. I was told I would hear back in 6 - 8 weeks. I haven't gotten the much desired letter (you ALWAYS want a letter rather than a phone call with blood work -- that's one thing I've learned) and I am trying not to worry since I haven't gotten the phone call yet either.

What I am really, really hoping for is a letter in my mailbox when I get home today. I'll keep you posted.

Today's A1C

2008-11-18T12:26:00.000-08:00

Not too bad considering the extreme highs for the last two weeks from illness and growing over an inch in the last 3 months! (she's over 4'6" now (138 cm))

(Sain's last A1C was 7.4. I was expecting this one to be higher because of all the sustained highs she had with the infection. What a pleasant surprise 6.9 was... it's nice when all the hard work pays off!)

Happy World Diabetes Day!

2008-11-14T11:51:00.001-08:00

A few facts:
-Every 10 seconds a person dies from diabetes-related causes.
-Every 10 seconds two people develop diabetes.
-Over 250 million people live with diabetes worldwide. In 2025, this figure will reach 380 million.
-More than 200 children a day develop type 1 diabetes.
-In developing countries, close to 75,000 children live with diabetes in desperate circumstances.
-Type 1 diabetes is increasing fastest in pre-school children, at a rate of 5% each year.

Sain and Aidan take over the blog for World Diabetes Day (tomorrow)

2008-11-13T19:13:00.000-08:00

If you look closely enough

2008-11-10T07:26:00.000-08:00

Saturday was belt testing and Sain did amazingly well. Her form was great, she knew her techniques and even Master Dye complimented her (I think that meant the most to Sain.)

No one there knew the week she had but if you look closely enough there was a sign.

Sain kept both her hospital bracelets on for testing and when asked why responded, "They remind me how close I was to not being able to test and if I get to nervous they remind me how lucky I am to be here."

Next Saturday a number of kids will be awarded their new ranks. I know I am a bit bias but no kid deserves advancement quite as much as Sain.

How we spent the last 3 and a half days

2008-11-04T18:25:00.000-08:00

It started Saturday evening with nearly 3 hours of unexplainable "High BG -- over 600" readings. We bolused, changed sets and insulin, bolused again, gave injection and, as a last resort, had Sain take a warm shower to get the insulin going.

I almost went to Children's at that point but the numbers finally started to go down.

Sunday the pain began. Sain rarely complains about physical pain -- if anything she's a bit too stoic but I was startled Sunday morning to hear her scream in pain from the bathroom.

(I will skip ahead to Sunday afternoon)

After a number of hours of pain and high blood sugar I took Sain into Children's ER. It seemed pretty clear cut, probably a urinary tract infection. All tests came back fine -- no infection, no acidosis, all labs were fine. The doctors were actually amazed at how healthy Sain is. After 4 hours of tests she was given an IV because of the dehydration from the highs and we were sent home and told to come back if the pain continued or got worse.

Monday it got worse. I decided to try Urgent Care from the local hospital (a 2 mile drive versus a 20 mile drive) and was pretty much told I was a hypocondriac mom whose child had uncontrolled diabetes. (Side note on that, Sain hasn't wanted to eat of late so when she wanted a maple bar I got her one. She ate it about 45 mintues before we went to urgent care so her BG was high and there was sugar in her urine sample.) All the Urgent Care doctor would focus on was the high BG and he treated me like I was an idiot who didn't know how to care for my daughter. I swear he only spent 5 minutes with us.

We spent Monday night alternating between advil and tylenol for the pain and doing many, many extra boluses to lower BG. Also, Aidan got sick on Monday night. :(

This morning I went to work for an hour to get some urgent things done and then took Sain back to Children's. They retested her and found a very aggressive urinary tract infection that didn't show up on Sunday's test. She was in severe pain most the afternoon but seems to be responding to the very strong antibiotic they prescribed. (She and Aidan are doing karate in the living room right now.)

Hopefully the BGs will come down soon - -she's 342 now and, sadly, that is a good number for today! (but no ketones!!)

AND HAPPY 41ST ANNIVERSARY MOM AND DAD!

Happy Halloween (and Christmas thoughts)

2008-10-31T12:23:00.000-07:00

I have a love/hate relationship with Halloween.

I love the spooky houses, costumes and trick or treating but I don’t love the way Sáin is treated on this holiday.

The first Halloween after diagnosis I did something that I am very thankful for… I let Sáin pretend she wasn’t diabetic. That year she had a fair amount of treats – I corrected the high BG that followed. The second year she had a little candy – I corrected that high, too. Last year she barely touched her candy (we still have most of it sitting in a bowl on a shelf.) This year we are going to a haunted castle and Sáin is well aware she can have whatever she wants while we’re there (as long as she boluses.) The less of a big deal I make about this dreaded day, the less candy she eats.

Here is what I don’t love about this day. I know I will come home today to the tears of frustration that follow school parties and the dreaded “Sáin can’t have sugar” or “Here’s a different treat for you because you aren’t like the other kids in your class.”

Despite 3+ years of educating both the kids and their parents, some people still don’t get how hurtful ignorance is. The sad thing – it’s always the same two girls that hurt Sáin. I’m beginning to think they are just mean girls and diabetes is an easy thing for them to pick on.

I know it’s only Halloween but I can’t stop thinking about Christmas.

My gift to the kids this year is a trip to Vancouver. We will be taking the train up on Christmas Eve, spending 2 nights at the Fairmont Hotel Vancouver, and then taking the train home on Boxing Day evening.

(I’ve already email a temporary change of address to Santa so all the toys should arrive safely in our hotel room for Christmas morning.)

This will be the first Christmas the kids and I have spent without any other family around but I think it is exactly what we need.

No Child Should Die of Diabetes

2008-10-29T12:37:00.001-07:00

Truer words were never spoken and that is the focus of year's World Diabetes Day.

Please take a moment to watch this short video (7 minutes) and check out the Life for a Child movie trailer and pass the message on.

The more people who know the signs, the fewer kids will die.

Weekend Recap

2008-10-26T20:39:00.000-07:00

This weekend was crazy -- but that's not news.

Friday -- well, to be perfectly honesy, I don't remember what we did Friday night. I know there was no karate, no school events, and no JDRF events. We must've stayed in. (hmmm, very unlike us!)

Saturday -- got the kids over to my parents' house by 8 hoping to leave by 8:30 with my dad to pick up 20 boxes of fuji apples (the ones Sain sold to help pay for Camp Leo) at the Thurston County Fair Grounds. After a tubing mishap (just before we left) and a trip back home to grab pump supplies (yes, I know I should've had them with me) my dad and I were on the road by 9.

Sain and Aidan went to karate (thanks to grandma) and we (dad and I) picked up the boxes in Lacey and were back on the road by 10:30. By noon 9 of the 20 boxes were delivered!

Saturday afternoon I rushed around after a karate belt mishap (won't go into details about that) to get the kids ready for their karate pictures. In a rush to get out the door on time I ran out without my keys or cell phone. This wouldn't have been a problem (I really can live without my cell despite what some people might tell you) except the door locked behind me.

The neighbors (very reluctantly) let me use their phone to call for assistance and we made it to pictures on time. (side note -- as 1950's as it might seem, my neighbors do not approve of single parents. Their children aren't allowed in our yard because the don't want their children "exposed to my lifestyle." Part of me is offended and part of me is kind of flattered that they think I have an exciting lifestyle. Truthfully I have a pretty boring life!)

We got to pictures on time and they turned out great. I can't wait to get the prints back!

We got home in time to see some hockey. The Leafs won and it's truly sad how excited I am about 3 wins in October so far.

Sunday was spent exploring leaves (Aidan is studying seasons) in Enumclaw, making a St. Martin de Porres costume for Sain for the All Saint's Day prayer service, and washing large amounts of kindergarten mat covers (yippee -- the time the washer runs counts for volunteer hours!!)

Two highlights of Sunday -- Sain running around playing "diabetes scout" and doing a pretty good sales pitch for foil wrapped ketone strips. Most 9 year olds haven't really perfected the art of sarcasm but Sain definitely has. And Aidan jumping on my bed singing Metallica songs at the top of his lungs. He told me he's going to be in a band when he's in high school and I can come watch him play as long as I stand in the back and promise not to scare the girls away.

I don't blog about politics but...

2008-10-24T12:47:00.000-07:00

when you have a child whose life depends on medical coverage you can't help but have opinions.

(no candidate will be mentioned in this rant. Who you vote for is your own business just as who I vote for is mine. I don't vote party line on anything; I vote my heart and my conscience.)

There has been a lot flying around of late about the changes both presidential candidates want to make to America's health care.

Back when all I needed was routine care and long before diabetes entered our world, I thought the US had good health care. I thought if you got sick your insurance would cover what you needed.

I was wrong.

Insurance is a business and businesses exist to make money.

To all the people who think it's not their concern if someone has pre-existing conditions or if their premiums are slightly higher to cover the sickest "fellow Americans" here is what I wish for you (it might be mean and I know some people won't agree but deep down in a very honest and possibly angry place, this is my wish for you):

May you suffer the sleepless nights I do worrying about your child's health.
May you be told your child is 12 hours from death and will require constant medical care to survive.
May you have to choose between food and insulin (both of which your child needs to live)
May you have your 9 year old tell you they "will save you a spot in heaven since I will probably get there before you"
May you fear loss of heath insurance more than loss of income.
And may you be told a $5000 tax break is more important to people than your child's life.

I know Canada's not perfect but not a day goes by that I don't thank God my kids are Canadian.

Growing Up

2008-10-23T13:35:00.000-07:00

I was looking at Sáin last night when it hit me – my kid is really growing up. Laying there on the living room floor reading a Harry Potter book she looked more like a teenager than a kid.

I’m not the kind of mom that gets weepy when I think of my kids growing up. In fact, I’m quite the opposite. My main goal as a mom is to make myself obsolete by raising independent, self-sufficient kids. And I seem to be succeeding.

Here’s my concern. Right now I know what’s going on with Sáin’s blood sugars. I know her trends, I know her rates, I know the carbs she eats, and really you could say I know her diabetes care inside and out. But that will change. One of these days she won’t need any help with any of it.

I am raising Sáin to care for herself. I let her make mistakes and over bolus (as long as I am there with juice in hand to correct the low) or under bolus (I am also there to correct the high) but I want her to make mistakes now and learn from them while I’m there to help rather than wait until she’s alone and trying to do this by herself. Truthfully, she makes very few mistakes.

For nearly 3 and a half years my job has been keeping my kid alive but more and more that job is being handed off to Sáin. I alternate between beaming with pride at how amazingly my kid handles such an unpredictable disease and complete panic at the thought of not “playing pancreas” for her. 99 percent of the time pride wins!

Besides, I can still sneak into her room at night to check her day’s numbers and charts thanks to her CGM!

(Two points – I realize I am talking about a 9 year old but if you know the 9 year old I’m talking about, none of this will surprise you. One of the meanings of Sáin’s name is “little, old wise one” and she’s always lived up to that meaning. Also, there are still days when Sáin won’t even poke her own finger so I am far from obsolete yet.)

Birthday wishes

2008-10-15T14:44:00.000-07:00

Happy Birthday, Nadia!

It's my true hope that you somehow read this today and know that your childhood friend is thinking of you on your birthday.

We met because of alphabetical seat assignments in the second grade and were an unlikely pair. Me the skinny, athletic tomboy and you the fashionable foreign girl but our bond was instant and strong. We were both outsiders until we had each other.

Thank you for teaching me French, introducing me to Lebanese food and for teaching me the importance of standing up for myself. Thank you for laughing with me in the good times and crying with me in the bad. You were the best friend I ever had.

I hope your birthday is wonderful... I miss you!

Answers to Random Tuesday Questions

2008-10-07T12:48:00.000-07:00

I’ve been asked a lot of questions today… here are the answers.

Are you feeling better?

Yes and No. (I know I should elaborate but I’m not going to)

How was your birthday?

Fine. As most people know, I don’t celebrate my birthday. It has nothing to do with age (I haven’t liked celebrating my birthday since early childhood) and nothing to do with religion. I just don’t celebrate it. Bad things tend happen on my birthday and this year was no exception. (I should also elaborate on that but I’m not going to.)

How did Sáin’s CGM start go?

GREAT! I love the device and so does Sáin. I find it less overwhelming than the pump start and I love all the data. Sáin was even interpreting her own data last night – she’s so independent for 9! I’m sure there will be days I hate the CGM but as of now I love it!

How is Gloria doing?
Amazingly well! It’s odd to think that a couple months ago it didn’t look like she would live and now she is smiling, communicating some and was even found standing by her bed in the middle of the night by her nurse! By no means is she recovered or out of the woods but she is healing so much better than anyone could’ve guessed. I only met Gloria in person once but heard a lot about her from Sáin. In that one meeting I could tell that she was a feisty kid – that trait is serving her very well right now!

Pictures from Sain's Birthday

2008-10-01T12:57:00.000-07:00

(Sain punching SpongeBob)

(Sain, Rory and Hannah)

(Cutting the cake with Master Dye's sword)

(Aidan, Ethan and Chris belt sparring)

(Ethan and Master Dye -- this is one of my favorite pictures from the party. Ethan was so ready to go out and punch the pinata!)

Happy 9th Birthday, Sain! (one day early)

2008-09-26T10:31:00.001-07:00

Sáin,

Happy birthday to the most amazing girl I know.

It’s hard to put into words what I want to say to you. In so many ways you are my hero.

In nine years you have lived through and seen more than many adults. You’ve taken all the things that could’ve broken you and turned them around to make you stronger.

When people talk about strength, resilience and perseverance you are the first person that comes to my mind.

Here are just a few of the lesser known things I love about you:

I love that, even though we were watching an NFL special on TV, you were born during an NHL commercial.
I love that your first word was “booger”
I love the fact that you were genuinely confused by the fact that all people didn’t speak French when you started preschool.
I love that you whispered to me in the hospital bed literally hours after diagnosis, “Well, I guess I have a lot to learn about diabetes now.”
I love that you try new things but aren’t afraid to admit when you don’t like them
I love that you can genuinely keep a secret
I love the determined smile on your face when you are doing martial arts.
I love that you are a “tall kid” (because I was the “short kid”.)

Mostly, I love that you are you!

Thank you for being my daughter and thank you for teaching me the best things in life are unplanned!

Love,

Mom

Pictures are better than words sometimes

2008-09-24T07:21:00.001-07:00

education

2008-09-23T15:06:00.000-07:00

The thing they don't teach you in the hospital is how to deal with ignorance. And trust me, there is plenty of ignorance when it comes to this disease.

When Sain was first diagnosed I didn't do too well with educating people -- I was too busy educating myself. As time progressed I got better. I was able to calmly tell them the difference between type 1 and type 2 and was even able to handle the "My (insert elderly relative here) was just diagnosed with the same disease" comments.

I have to admit that I've taken a turn for the worse in my education ability recently. Maybe it's the idiot telling me to shut up when I was explaining Sain's CGM to another mother or maybe it's people not knowing the difference between JDRF and the ADA and assuming they are supporting the same cause. Whatever it is (most likely a temper and lack of sleep) I can't handle the ignorant comments anymore.

I am tired of educating people. No, that's actually not true. I am tired of people not asking and assuming they know things they don't. For God's sake, just ask. I will answer anything and I promise not to yell.

APPLES!

2008-09-21T16:31:00.000-07:00

Sain is selling apples to help pay for Camp Leo - 2009.

If you would like to buy some, please see the information below. (Orders are due by the end of September and we will be delivering them to you in October.)

Thank you!

It's Here!

2008-09-19T10:43:00.000-07:00

So, it’s here.

Almost 150 days after I started the fight it's here.

All we need now is the training and we’re good to go.

I know CGMs aren’t a miracle cure and I know that in many ways this will involve much more work but I promised my daughter I would do everything I can to help her stay healthy and this will help. I won’t lie and say I’ve never broken a promise but I don’t break promises to my kids.

I am still angry with Premera for the multiple denials and I am disappointed in the way some other important people in our diabetes care responded to the whole fight but right now that doesn’t matter. I am thankful for Aetna approving the device (without any appeals) and I am thankful for the fighting spirit I inherited.

My two hopes are these:
I hope Sáin’s numbers get better. It sounds odd saying that since her numbers have been pretty decent the last couple of weeks but “decent” still puts her at risk for complications and “decent” is not what I strive for.

Secondly, I hope in some small way my battle breaks down a few doors for others. Denying people medically necessary devices is obscene. If my fight helps even one other person it is all worth it.

One a very different note I want to say a BIG congratulations to Kate and John on finding out “Baby Kate & John” (as Aidan calls him) is a boy! He’s one lucky little boy and we can’t wait to meet him in January!

Guess What?

2008-09-17T14:32:00.000-07:00

Aetna is saying they will pay for Sain's CGM!! I almost don't know what to do!

It's like Christmas and my birthday all wrapped into one!

Four unrelated happenings

2008-09-16T14:19:00.000-07:00

#1 It’s been over two weeks since school started and I’ve had ZERO high blood sugar calls and only one low. I don’t know what else to say about this – it’s amazing!

#2 Saturday I received notice that Premera rejected our third and final appeal for Sáin’s CGM. Even though I was expecting the rejection, I was still disappointed. There isn’t much I can say about the fine folks at Premera (note the sarcasm) that I haven’t already said. I hope Aetna is a bit more progressive. (Still no word from Aetna – sadly, I don’t expect a lot from health insurance companies these days.)

#3 Seeing a flying side kick done by a black belt in person is probably the coolest thing I’ve seen in years. (The instructor demonstrated one for Aidan’s class on Saturday.) Anyone who knows me knows that it takes a lot to impress me… I tend not to be impressed with the usual money, status, material goods, etc. that impress most people. Don’t get me wrong, money, status, material good, etc. are all nice things but having the discipline to train and get your body to do something like that is way more impressive in my opinion.

#4 Last night Sáin finished her “all about me” poster for school. In one of the sections she had to tell a unique fact about herself. Sáin colored the section and was very proud of it. When she showed me I was very proud of myself for not laughing… her box looked exactly like the Molson “I AM CANADIAN” ads.

Update on Gloria

2008-09-15T14:58:00.000-07:00

Here's the email her dad sent out... it gives more detail than I can. Please continue to pray for Gloria.

Sunday, September 14th, was the 49th day of Gloria's stay in Swedish Medical Center in Seattle. The first 7 of those days were in the Pediatric Intensive Care Unit. Until September 5th, the outcome for Gloria was not looking very good. All concerned were very worried about Gloria and praying for a miracle.

On September 5th Gloria started tracking movement with her eyes. We started to notice improvements every day or so. Since then we have seen improvements at an accelerating pace. It is clear that she is definitely on the path to recovery. How complete her recovery will be from her stroke is unknown. The doctors are unable to predict any scale of recovery that she might have - minor to full. However, a child's brain structure is much more able to repair and rewire itself than an adult's.

The following is the list of improvements noted in Gloria on Sunday.
1. She is moving her left leg much more. She seems to be moving it to get it in a more comfortable position (more self-aware?).
2. She held her head up and turned to look to the left. She has done this before but really held her head up higher and longer than before and slowly set her head back on the pillow.
3. Sunday was a bright sunny day in Seattle. Therefore we took Gloria out of the hospital building and into the sun. Her nurse tracked us down so she could give Gloria a shot of insulin. She noticed that Gloria's pupils were contracted. Later, back in the room, the nurse tested Gloria's pupil reactions with a flashlight. Her pupils were contracting when the light was shined into her eyes. Her eyes had not been doing this previously, and the nurse considered this a big improvement. (Pupil dilation is not an automatic response. It is done by the brain processing the incoming light level and directing the pupils to adjust accordingly. This means Gloria's brain is now more fully engaged in her vision process.)
4. Gary has been letting Gloria's left hand grasp the fingers of his left hand. On Sunday Gary made it as difficult as possible for her to easily do this. The result was a struggle that basically ended up as a thumb wrestling contest. She did not win but the will to win was there.
5. Gloria has continued to enjoy the paper bird mobile. Gary has tried to get her to hold the red bird. For her to do it he had to put her hand on top of the bird with the support string between her fingers. On Sunday when Sherry came into the room, she found Gloria holding on to the bottom of the red bird. This means she raised her hand and grasped the bird herself.
6. A plastic music box was playing a tune while on her pillow. Gloria reached over with her left hand and pushed the music box up to the top of the pillow. This was done with deliberate intention and perfect muscular coordination. She did what she wanted to do!

Also early on Saturday morning, the nurse noticed that Gloria was making sounds and moving her mouth. She believes that Gloria might have been trying to talk. We have been watching but have not noticed any repeat of this action.

Monday will be the 50th day at the Swedish Medical Center. We have been scheduled to move to Ashley House on Monday, and this time they "promise" that it will happen. We will now have a 15 minute drive to Ashley House as opposed to the I-5 expeditions to downtown Seattle. It will also allow more focus on her rehabilitation which is really happening now. The goal at Ashley House is to qualify Gloria to get into the rehabilitation program at Children's Hospital. To qualify, Gloria must understand and obey commands to perform a task and be able to participate in the treatments for 3 hours per day. Presently, Gloria cannot do any part of the requirements.

For Monday and Tuesday, I request that there be absolutely no visitors or phone calls to either Swedish MC or Ashley House. These will be very hectic days with the transfer from Swedish and setup at Ashley House. We need all of the time available to mesh with the staff and accommodations at Ashley House and to ensure the supply chain of venders of medical supplies and medical services are in place. Remember, there is only a small staff at the Kent Ashley House and they should not be put in the position of entertaining visitors. Visitors should coordinate their future visits to the times Gary or Sherry are present.

That said, I invite you to participate in Gloria's recovery. At Ashley House we are much closer to her circle of friends, and her recovery is making very good progress. The highest priority helpers would be the people she is most familiar with, which include her peers at St. Anthony School and her neighborhood friends. Seeing your faces, hearing your voices and listening to your conversations are the stimuli that are needed for her "awakening". Other volunteers are also welcome to read to Gloria, play music for her, or interact in any other way to engage her (thumb wrestling?).

The easiest way to schedule volunteer visits would be to email me the days and times you are available. I could then determine an open time for the visit and email you back. Please be sure to include phone numbers for a quick call back if the visit has to be postponed at short notice.

Visits should go well now since Gloria has a very normal sleep pattern. She has occasional short naps during the day if she tires out due to stress. If she starts to nap during a visit, please let her sleep since she needs the rest. It will not be long before she wakes up from her nap. Gloria is still being fed only through a tube that goes into her stomach. Do not bring any food or drinks for her.

Many thanks for the prayers for Gloria given by her friends and relatives and by all of the participating prayer chains across North America and Europe.

Memories

2008-09-11T14:03:00.001-07:00

Sáin asked me this morning where I was during 9/11. This is the first time Sáin’s asked me and two thoughts came immediately to mind. 1. She’s getting older. 2. I’m getting older. (I remember thinking everyone who could tell you where they were when Kennedy got shot or when man landed on the moon was OLD.)

So I told her.

I was driving to work on the I-90 bridge, it was just before the Mt. Baker Tunnel and I heard them announce it on the radio. I called my dad because I knew he would be awake.

I got to work and only one other person was there – Kevin Barrett. Kevin and I immediately called our NY office which was located only blocks from ground zero. They were okay.

My job that day was to track down all NY employees – 324 people. The photographers were easy to find. Pictures were coming in so quickly that day. Quick and unfiltered – I am still haunted by some of the unfiltered pictures that came in. Others weren’t so easy to find. I called spouses, siblings, parents, ex-spouses, estranged children, it didn’t matter who you were or how old the data might’ve been if there was contact information in the personnel file, I called it. By the end of the day every NY employee was accounted for.

That day I talked to so many people; everyone had a story to tell me. Everyone thanked me for calling and everyone wanted to talk. So I listened. I listened to a 90 year old grandmother talk about an unaccounted for grandchild and to teenagers crying for the Mommy and Daddy. I listened to it all. I listened and I learned more about humanity that day than I had in the 20 some odd years before.

For weeks I got cards, letters, and even a box of amazingly delicious chocolates from people thanking me for checking on their family members and thanking me for listening.

Every September 11^th I think of those people. I wonder how they are doing 7 years later.

When I was done telling Sáin this story she said to me, “You must be proud you were able to find all those people.” Like I told her – I don’t really feel proud, I feel lucky.

Strange Conversations

2008-09-10T12:54:00.000-07:00

One of the strangest things I’ve learned in the last couple years is that Sáin can hold (somewhat) coherent conversations in her sleep.

The most common thing said to me during early am checks, “Why are you doing this? I’m not diabetic at night.”

But here are a few of the more interesting conversations from the past week:

(Having just poked her finger)

Sáin: Oh good, it’s time to eat. Can I have spaghetti?

Me: No, honey, it’s the middle of the night. I just needed the check your blood sugar.

Sáin: Oh, so no spaghetti?

Me: No, sorry. I’ll be back at 3:30 to check you again.

Sáin: Can you bring some pancakes when you come back?

Me: I will see what I can do.

Sáin: You’re such a good mom.

(me trying to get Sáin’s finger for a poke – she likes to hide them)

Me: Sáin, I just need your finger for a poke

Sáin: Is it time for karate?

Me: No, it’s 1:00 and I need to check your blood sugar.

Sáin: Why can’t I go to karate?

Me: Because it’s the middle of the night.

Sáin: No it’s not, the sun is just setting earlier these days.

(Having just poked Sáin’s finger and she’s pulling it away)

Me: Hold still, I have to get the blood on the strip.

Sáin: Did my CGM alarm go off?

Me: Honey, you don’t have a CGM yet.

Sáin: Why aren’t you working on that? Did you call JDRF?

Me: Trust me, Sáin, I’m working on it.

Sáin: Have Aidan help -- he’s really charming.

Me: Good idea.

Sáin: Yep, I’m pretty smart.

(and modest, too!)

JDRF Press Release

2008-09-09T08:34:00.001-07:00

(because sometimes it's easier to cut & paste than writing your own post. I wonder if the insurance companies will still say the findings haven't been published in an major journals since this one is published in the New England Journal of Medicine?)

New York, NY, September 8, 2008 -- Patients with type 1 diabetes who used continuous glucose monitoring (CGM) devices to help manage their disease experienced significant improvements in blood sugar control, according to initial results of a major multicenter clinical trial funded by the Juvenile Diabetes Research Foundation. Results from the study were presented today during the European Association for the Study of Diabetes (EASD) annual meeting in Rome, and portions of the data will be published in the October 2 issue of the New England Journal of Medicine, available on line today at nejm.org.

The CGM study is a randomized, controlled trial involving 322 patients spanning the age range of 8 to 72 years at 10 sites, which included academic, community, and managed care based practices at the Atlanta Diabetes Associates, the Joslin Diabetes Center, Kaiser Permanente Southern California, Nemours Children's Clinic - Jacksonville, FL, the Lucile Packard Children's Hospital at Stanford University, the Barbara Davis Center for Childhood Diabetes at the University of Colorado Denver, the University of Iowa, the University of Washington, and Yale University, and coordinated by the Jaeb Center for Health Research in Tampa, Florida. Patients were assigned to either CGM or a control group using standard blood sugar monitoring and were followed for 26 weeks to assess effects on blood sugar control, principally assessed by measurement of the HbA1c level. At enrollment into the study, patients had HbA1c levels of 7-to-10% (the goal for adults with type 1 diabetes generally is a level below 7% and for children and adolescents below 7.5-8%). Three age groups were analyzed separately: 8 to 14 years of age, 15 to 24 years of age, and 25 years of age or older.

Improvements in blood sugar control were greatest for CGM patients 25 years of age or older, whose HbA1c levels decreased (improved) during the study by an average of 0.53% compared with control patients (p<0.001); improvements in secondary measurements were also significantly greater in CGM patients, including the percentage of patients able to achieve an HbA1c level below 7%, or a 10% relative or 0.5% absolute drop in HbA1c. The improvement in HbA1c occurred without an increase in hypoglycemia (low blood sugar), which is the worry when attempting to tighten glucose control. In children aged 8-14 years old, the average decrease in HbA1c was not significantly different in the CGM and control groups; however, those in the CGM group were more likely to lower their HbA1c by at least 10% and achieve HbA1c levels below 7% compared with the control group. Fifteen-to-24-year-old CGM patients, as a group did not experience significant improvements in glucose control compared with the control group.

CGM use varied with age, averaging at least six days a week over the course of the trial in 83% of the patients 25 years and older, but dropping off to 30% of the 15 to 24 year olds and 50% of the 8 to 14 year olds (for whom CGM use typically involved their parents' assistance). Although the study was not specifically designed to assess the effect of frequency of CGM use on HbA1c, an analysis presented at EASD suggested that patients within all three age groups, including teens and young adults, who used the device at least six days a week had substantially lower HbA1c levels after six months compared with patients who used CGM less than six days a week.

"These results are very important, because they show that continuous glucose monitors are more than simply devices of convenience for people with diabetes - they are tools that can substantially improve blood sugar control when used regularly," said Dr. Aaron Kowalski, Program Director for Metabolic Control at JDRF. "Based on the findings of previous studies, better control of glucose levels over the long term can be expected to translate to a lower risk of complications for people with Type 1 diabetes.

The lower levels of regular CGM use among children and teenagers observed in this study underscore the importance of continued research into a closed-loop artificial pancreas -- a device that uses CGM data to administer appropriate doses of insulin through a pump without the need for involvement of the patient or for young children their parents."

About Type 1 Diabetes
Type 1 diabetes is an autoimmune disease that affects children, adolescents, and adults, in which the immune system attacks cells in the pancreas that produce insulin, a hormone that enables people to convert food into energy. People with type 1 diabetes are dependent on insulin for the rest of their life. But insulin is not a cure, and people with diabetes are at significant risk for a wide range of serious complications, including heart disease, blindness and kidney disease. As many as 3 million people in the U.S. have type 1 diabetes.

About CGM Devices
CGM devices, manufactured by several companies and approved by the FDA as an adjunctive therapeutic for diabetes, provide both a real-time snapshot of the glucose levels of a person with diabetes, as well as trend information on whether glucose is moving upwards or downwards, and how fast. Devices also provide warnings when the glucose is becoming too high or too low.

Eight Things I am Thankful For

2008-09-05T14:57:00.000-07:00

I am thankful it's Friday. Even though the weekend ahead is not exactly a restful one, I am thank for for a weekend.

I am thankful for a successful first week of school. Aidan loves kindergarten and Sain loves third grade. What more could a mom ask for?

I am thankful for Sain's good blood sugar readings this week. Only one high and one low all week!

I am thankful for the American Colleges of Mixed Martial Arts for giving me back the smile my daughter lost almost 4 years ago.

I am thankful for the Tailgate party at the school tonight which means I don’t have to cook dinner.

I am thankful that I finally got a refund from the dentist that screwed up my crown because I can now pay for Sáin’s birthday party!

I am thankful Aidan has karate after his blood draw at Children’s tomorrow – it gives him something to look forward to.

What I am most thankful for is Gloria’s improving condition. She is now able to follow people, object, etc. with her eyes and is turning her head to look around. She is truly a fighter! (You can read more about Gloria in the 7/31, 8/7, 8/12 and 8/13 posts.)

First Day of School

2008-09-03T06:59:00.000-07:00

Yesterday was the first day of school. Aidan started kindergarten and loved it. Sain started third grade and also seemed to love it. Best part -- Sain's blood sugar readings were in range all day!!

Here's a few pictures:

Honest Friday Post

2008-08-29T10:50:00.000-07:00

aka The Post Almost Not Published

Maybe it’s the depressing choice of songs my iPod is shuffling for me today, or maybe it’s the end of summer but what ever it is I am very reflective today.

Truthfully, I think my mood stems from seeing in writing the fact that it was just a few months post-diagnosis that I was presented with the lovely challenge of single parenting. (We were interviewed at JDRF for PR stuff.)

I don’t blog about that aspect of my life, I try to keep it separate, but I am going to cross that line a little today.

Financially it’s tough. I wish I had the money to do everything I want (and everything my kids deserve) but on one income it’s tough to keep up with medical costs and private school tuition. Both of which are too important not to pay for. Thank God my kids have good imaginations and we can make our own adventures instead of having to go places.

Physically it’s tough. I know the lack of sleep and constantly pushing myself to do more is not healthy but it’s what I have to do. There are days when I lie in bed after my alarm goes off and seriously wonder if I am going to be able to get up. But I do it and I will continue to.

Socially it’s tough. I get one night a month without the kids and most of that is spent worrying that their dad won’t check blood sugars or will let alarms on the pump go off without fixing them (sadly, this happened.)

Emotionally it’s most tough. I have a great network of friends and family around me but no one is there in the middle of the night. I would love to be able to come back to bed after a 2 am check and tell someone (besides Tennyson) how the numbers were. No one in my network of people really knows what it feels like to be alone and do this.

That said, I wouldn’t change a thing. I have the best kids, the best family and friends, and the best cat (who really does seem interested when I tell him Sáin’s nighttime numbers.)

Have a wonderful Labor (or Labour if your in Canada) Day Weekend!

(I TOOK MY iPOD OFF SHUFFLE BECAUSE IT SERIOUSLY WAS PLAYING ONLY DEPRESSING SONGS!)

Work - my home away from home (sadly)

2008-08-28T14:52:00.000-07:00

A coworker told me today that you can tell everything you need to know about a person by the items on their desk.

What does mine says about me?

Left to right:

Pictures from Sáin’s first day of kindergarten and from the 1^st grade Christmas concert.
Referral cards to my wonderful dentist.
A stand made out of benefits cards that had been propping up Marvin the Martian.(Marvin is now living safely on Deb’s cube wall.)
A leaf (there are actually three leaves on this shelf.)
Super Deflectos – The superhero cows Julie and I came up with to deflect negativity at work.
My Maple Leafs Easter egg standing on a turtle from Willows Road
A lucky leprechaun (on the wall next to the Super Deflectos)
Devil ducks walking across a wrench (also found on Willows Road) to another turtle. (notice the baby duck is the leader since youngest children make the best leaders!)
A garden gnome
A lucky clover from Ireland.

(This stuff is actually from a shelf above my desk. Since I work with confidential information I can’t take a picture of my actual desk. Plus my desk is very, very messy right now and no one needs to see that!)

Life is full of disappointments

2008-08-27T08:15:00.000-07:00

Message to those who say my diabetic child doesn't need a CGM:

Your day ends when you go home. You don't have to think about this disease 24/7. How nice it must be for you to not worry your child might have a seizure or die in the middle of the night. How nice it must be for your child not to worry about these things.

The reason Sain doesn't have seizures is two-fold
1. I check her MANY MANY MANY times a night -- last night it was at 9, 11, 1, 4 and 6 am. Were you up at those times, too?
2. I run her numbers higher at night so I can get A LITTLE sleep.
(Hmmm, maybe that's why her A1C is a little higher -- did you think of that?)

To say she does not need one after telling me she's a great candidate for one and that it would greatly improve her stability and prevent long term complications is absurd.

I have never been as angry, sad, disappointed as I am right now.

(Interestingly enough, this post is NOT directed at the insurance companies. No, this wound cuts much deeper.)

Fall/Autumn – whatever you call it, I love it!

2008-08-26T13:19:00.000-07:00

(Before I start – I realize it’s still August and that my love-fest with a season has precious little to do with our life with diabetes but it’s either this or a rant about the whole CGM thing so I think this is a preferable choice.)

I love fall. I think it truly is my favorite season.

I love the changing leaves, the cool air, and the start of school.

I love the rain, the wind and thunderstorms.

I love weekend football games in an open stadium and trying to cram way too many people under one stadium blanket.

I love that smell in the air that tells you winter is just around the corner and I love all the holidays.

I love that Sáin’s blood sugars are better in the fall and I love that I don’t have to mow as often in the fall.

But what I love most of all about fall is HOCKEY. Oh, my Leafs, you have no idea how much I needed you this summer. I’ve missed you terribly and I can’t wait to see you again!

Another fun night ahead

2008-08-22T22:51:00.000-07:00

So, it's 11 pm and I can already tell you it's looking to be another fun night.

6:30 Dinner blood sugar reading -- 338
Correction bolus plus dinner bolus usually takes care of it

8:00 Infusion set change / new insulin reservoir

9:00 Bedtime blood sugar reading -- 340
correction bolus

10:00 Check to make sure blood sugar's going down -- 378
new infusion set and correction bolus

10:35 Check to make sure blood sugar's going down -- 448 (lots of eights tonight)
new infusion set and new reservior and another correction bolus

NO KETONES -- thank God for small miracles

10:48 Check to see if blood sugar's going down -- 440

In 10 minutes I will check again. Why do I get the feeling this is going to be "one of those nights?"

What a day!!

2008-08-20T22:45:00.000-07:00

Today has been an odd day.

As most of you know, this summer has been spent battling for a CGM for Sáin. The battle began back in May (before our trip to Toronto) with a letter of medical necessity and has travelled through multiple denials, multiple appeals and communication with Good Morning America. We were set to interview with ABC on Friday but, through a long series of events that I would write about but I am too tired to, it seems Aetna (Sáin’s secondary insurance through her dad) may pay for Sáin’s CGM. At least that's what the two unsolicited phone calls today from Medtronic told me.

Needless to say our ABC interview is postponed until after we receive a denial from Aetna (or, God forbid, an acceptance letter!) The ABC folks were wonderful about everything and seem genuinely happy that Sáin might be getting her CGM -- despite what some people told me, I found media folks to be great. (They are still interested in our story if we get a denial from Aetna, too.)

Sáin took the news very well and was more excited at the prospect of getting a CGM than disappointed with not being on GMA. This proved to me more than anything how much she wants this device.

Honestly, I am having a bit of trouble. I am truly very, very excited with the prospect of coverage but I am disappointed by large number of people that have come out of the woodworks to support us only after ABC got involved.

For three months I got very little support from some people that really should've (in my opinion) been helping and now everyone and their brother wants to help me. (It got so bad today that I actually turned off my cell phone and, if you know me at all, you know I am one of those annoying people who always has my cell with me.)

Where were they when I asked for help? The only place I found real support was here, online. Out there in the "real world" I felt alone. Why am I suddenly important enough to help?

At the end of the day all that matters is Sáin getting her CGM but I don't know if I will ever view things the same way again. This disease can be very disillusioning.

(The picture is what I see when sitting at the computer -- (left to right) iPod box, glasses that my dad uses when he plays games on my computer in the mornings when I leave for work entirely too early and he's kind enough to come over, a Diet Mountain Dew (if diabetic parenting were an extreme sport, I would be a shoo-in for an endorsement deal) and the "quick setter" for Sáin’s pump infusion sets with my reflection in the background. I look tired.)

Attention AMEX card holders

2008-08-19T10:39:00.000-07:00

This is the last day to vote on the members project that will receive 2.5 million dollars in funding from American Express. If you have an AMEX and have not voted yet, please consider voting for this one. (I’m sure the other projects are very worthy but I happen to be very fond of the idea of curing this disease.)

No update on Gloria. It’s such a tough and tragic situation but we’re still praying for a miracle.

We brought some get well cards for people to sign at the ASAPP (Active St. Anthony Parish Parents) picnic on Sunday and it was really hard to talk to other parents about the situation. I’ve come to realize that you can’t truly understand any situation until you’ve lived through it.

As Sáin pointed out to me on the way home, it was nice there was another diabetic family at the picnic – their fears are the same as mine, the look in their eyes when they’re watching their son test and bolus is same as the look in my eyes when Sáin is doing the same. I would never wish this disease on anyone but I must say it’s comforting knowing that at least a few other people truly know how you feel.

No updates on CGM either. I did find it a bit funny that I got my Premera health assessment back today and I am considered very healthy with one glaring exception – I don’t get enough sleep. Really? You mean it’s not healthy to wake up 2 – 3 times a night to test your child’s blood sugar? I never would’ve guessed!! (Sorry for the sarcasm. I guess that's another side effect of not getting enough sleep.)

Six random things I learned this week

2008-08-15T11:26:00.000-07:00

SIX – It might take over an hour to get from Redmond to Renton (18 miles) on Tuesday and Thursday evenings but it only takes 25 minutes to get from Renton to the Auburn (16 miles.) I was certain we were going to be late for Sáin’s 5:30 karate class when I didn’t get home to pick up Sáin and Aidan until after 4:45. We arrived at the karat school 20 minutes early!

FIVE – Smog is way worse than heat. I am one of the odd people in Seattle that likes hot weather. Normally when the temperatures are in the 90s I am feeling great. Thanks to the lovely smog – I feel awful. I can’t even get out to enjoy the nice weather and I haven’t used my inhaler so much in years!!

FOUR – Heartfelt prayers said by a five year old are the most pure, innocent, heart breaking things to listen to. I hadn’t realized how deeply Aidan was feeling the pain of Gloria’s condition until this week. When he met Gloria in June, Aidan thought she was one of the coolest people he’d ever met and all his memories of playing with her are in the exact room he will start kindergarten in on the 2^nd. I can’t believe I’ve held it together so well for Sáin and Aidan throughout this tragedy but I almost lost it when Aidan said to me, “What’s most scary is that could be Sáin in the hospital and it could be Lillia remembering me in her prayers.” (Lillia is Gloria’s little sister and Aidan has made a special point to pray for her since he knows what it’s like to have a big sister with diabetes.)

THREE – There is no such thing as the “Lawn Mowing Fairy”. No matter how hard I wish for it, no magic fairy will come and mow my lawn while I sleep.

TWO – Strangers can be very kind. As I’ve stated in previous posts, we’ve been lighting candles for Gloria online and it touching the kind words that are showing up from all around the world.

ONE – Having the “big guns” in your corner feels pretty nice. This summer I’ve been talking to some of the producers at Good Morning America as they are doing a story about insurance companies denying CGMs. I really didn’t think they would choose our story but it’s looking more and more like they might be coming out to Seattle next week. Funny thing is, I sent in my request for a level II appeals hearing with Premera and I am honestly more nervous about talking to Premera than I am about talking to GMA. GMA gets that this is an important technology that can greatly improve Sáin’s life – Premera seems blind to that.

Need a miracle

2008-08-13T07:09:00.000-07:00

Please pray for Gloria.

I just got an update that Gloria is no longer in a coma as they thought. She has suffered a severe neurological injury and her likelihood for recovery is small. She might improve slightly but the doctors don't know how much better she will get. (What put this one in perspective for me is that because of the state she is in, Gloria is not eligible for rehabilitation at Children's.)

Please pray for a miracle -- Gloria deserves one!

Random Tuesday Stuff

2008-08-12T14:15:00.000-07:00

Our CGM fight continues. Hopefully I will have some exciting news on that front soon. It’s a tough battle because the insurance companies don’t want to cover this technology even though it would save them money in the long run. It’s a bit discouraging but I will continue to fight it.

Gloria continues to be in a coma. There seems to be more talk of long term care and less of a full recover which is hard to hear. We still pray for a miracle and every night Sáin and Aidan light a candle for Gloria.

Sáin seems to understand now that this is a very rare complication and that the reason I test her so much and fight so hard for things like a CGM is to prevent these complications. That said there have been a number of nights in the last week spend comforting and reassuring Sáin. Night time seems to be toughest.

School!! I can’t believe it’s back to school time. Aidan is so excited about kindergarten. We have his orientation on the 27^th and are trying to schedule the pre-first day of school medical meeting with Sáin’s teacher for that same day.

School supplies are all bought, uniforms are clean, and all I have left to do is emergency kits. (Emergency kits are a bit trickier with a diabetic kid.)

Sáin’s new love – Karate! Sáin and Aidan are taking karate this summer. Sáin loves it! (Aidan likes it, too, but love is almost an understatement when describing how Sáin feels about it.)

I was able to get the kids enrolled in the karate school (we had been doing in through the parks department) and budgeted in an unlimited membership for Sáin. Now Sáin will be taking classes 3+ times a week. She takes her first Tuesday class tonight and is very excited.

Aidan will continue with once a week classes for now. I don’t want to overwhelm his schedule. He already knows the house rules that academics comes first so I want to get him used to kindergarten before introducing other weekday activities. I am amazed how academic kindergarten has become – no more play time like I had!

My Little Girl

2008-08-07T20:41:00.000-07:00

It's been a trying day for my little girl.

Sain had her endo appointment which went well. Her A1C was a little higher, a few adjustments need to be made to her morning bolus rate and it looks like we're going to have to do a few fasts to re-adjust her basal rates. All in all it was a fine appointment.

The appointment isn't what got to Sain. We found out today that Gloria had a stroke caused by diabetic ketoacidos and this is what caused her coma. (up until now we haven't known the actual cause) Although there are some positive signs -- a moving toe and a little leg movement -- the reality of a diabetes induced stroke at age 11 is hard for anyone, let alone an almost 9 year old with the same disease, to comprehend.

Sain was quiet the whole drive home from Children's. She wanted a much smaller than normal dinner. (actually she didn't even want dinner but agreed to eat a little) She is scared and I don't know what else to do. I've reassured her, her doctors have reassured her, her grandparents have reassured her, heck, even her little brother has reassured her but Gloria's condition hits too close to home.

So I listen. I listen to the fears of my little girl and want to burst into tears. But I listen and I comfort and I keep her talking about her feelings. I listen to the valid fears; I listen to the irrational ones. Then I listen to this, "Mommy, please don't let that happen to me." I kissed her head and promised I would protect her.

Within minutes Sain was asleep. She's exhausted both physically and emotionally.

I pray to God I can always keep my promise.

Community

2008-08-06T09:41:00.000-07:00

This disease is full of lessons. Some of these lessons discourage me; others give me strength.

If someone were to ask me what I’ve learned since Sáin’s diagnosis I could easily ramble on about the medical, the research or the legal lessons I’ve learned as a result of diabetes. But those aren’t the biggest.

I’ve learned that paying attention to School House Rock as a child helps when, as an adult, you discuss with a senator how a bill becomes a law. (more on that in future postings – if you don’t like the laws then change them, right?)

I’ve learned that knowing ABC News and Good Morning America care about your CGM battle is an amazing feeling. (more on this, too, in future postings)

But here is what diabetes has really taught me – the definition of community.

When Sáin was diagnosed we became a part of the Children’s community. They rallied around us and are still there for us every day.

2 days after diagnosis we became a part of the JDRF community. They gave us so much information, support and hope. I will never forget Chrissy looking me square in the eyes and telling me, “It really will be okay. Trust me.”

4 months after diagnosis we became a part of the St. Anthony School community. I am currently witnessing the power of this community. Watching this community come together to support Gloria and her family is awe inspiring. In less than 18 hours nearly 50 virtual candles have been lit. I’ve heard a number of times that one candle only shines a small light but a group of candles can light the world.

As an outsider most of my life, I used to view community as a necessary evil but I’m slowly learning that it’s the darkness and “evils” in life that make community even more important.

Smartest cat in the world

2008-08-05T10:31:00.000-07:00

Every time I clean out Tennyson's litter box he comes over and watches. (It's almost as if he doesn't trust me to do a good job if he's not there.)

This morning I started scooping. Within seconds I had a fury black supervisor.

Before I continue there are a couple of things you should know about Tennyson.
1. Paper is he absolute favorite toy
2. Tennyson doesn't seem to realize he's no longer a kitten

Okay, back to the story. Tennyson noticed a paper lying near the litter box and started attacking. Before I could stop him (he's unusually quick for a 13 year old cat) the paper was in the (still dirty) litter box being ripped to shreds.

Needless to say the paper was a disgusting mess. While taking the paper bits out of the litter box I noticed it was the shredded remains of the Premera envelope that our second denial came in.

Tennyson was a little shocked when I gave him treats and praised his actions.

If a cat can understand that these denials belong in the litter box, why can't the insurance companies get it?

(Happy 14th Birthday tomorrow Tennyson!!)

overwhelmed

2008-08-04T10:34:00.000-07:00

That is how I feel today.

But today, like all days, has things that need to be done so I push that nagging sick feeling to the background and I go about my day.

I will have a smile on my face even though what I really want to do is cry and I will be one of the most productive employees in my company even though I want nothing more than to sleep.

I will not snap at the people who don’t do their jobs whose task I will end up doing and I won’t think twice about helping out another department even though I am in the midst of a DOL audit.

Before you get on my case about this self-pity, please note that the last 19 years (yes, 19 years) of my life have been an uphill battle and a fight that would’ve broken most people. I will continue to fight but I am seriously tired of it. When do I get a break?

I sometimes think if I was a recovering drug addict or rehabilitated criminal then society would cut me a break but because I’ve tried to do the right thing most of my life and I’ve tried to take responsibility for my actions then I don’t get a break.

I know, tomorrow is a new day but when does it get better?

(Because I am, at my core, an optimist and self-pity last less time than it took me to write this post, I have to include this. (You can also read about it here.) For all who’ve contributed to JDRF, this is one of the things your money has funded. THANK YOU!)

Notes

2008-07-31T10:07:00.000-07:00

(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

2008-07-29T18:48:00.001-07:00

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

2008-07-26T23:05:00.000-07:00

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

2008-07-23T13:36:00.000-07:00

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

2008-07-21T10:48:00.000-07:00

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

2008-07-17T15:08:00.000-07:00

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

2008-07-16T15:29:00.000-07:00

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

2008-07-16T09:29:00.001-07:00

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

2008-07-15T11:19:00.000-07:00

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."