Busy Times

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

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...

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

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

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

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

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

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

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

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

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...

I was here and I was happy.

Burn Out

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

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

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!

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

Very random happenings from the last week, or so

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

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!

My sweet kids (and a couple new pictures)

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

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

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...

Happy Birthday, Mom!

Some Pictures (and a few words)

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

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

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"

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

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

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

How has diabetes changed our lives?

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!

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)

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?

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?

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

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

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