Sunday, May 22, 2011

My kind of day... wish I could bottle it!

Sometimes a day goes so well that it is bewildering. Today was one of those days (though I'm surely not complaining).

Today we celebrated my dad's 70th birthday (Happy Birthday Dad!). Yesterday was super busy and we ended the day at a late baseball game, so we all slept in until after 8am (a miracle in itself). Sarah's blood sugar hovered between 90-100 for several hours prior to wake up. Awesome.

We got up and were just lazy. Sarah wasn't particularly hungry, and as her CGM was showing happy numbers, I didn't make her eat.

We made it to my parents house at 11am, by which time Sarah was finally starting to get hungry. Her bg was around 80, and she ate a granola bar. She followed the granola bar with chips, guacamole, and watermelon. We did a combination of measuring (watermelon) and guestimating (chips and guac). Her bg stayed pretty darn happy, right in range. Then came lunch. She filled her plate with beans, potato salad, corn, bread, and BBQ chicken. We measured out a serving of beans (28), potato salad (24), corn (19), and bread (20). She did a 70/30 combo, which basically means she took 70% of the insulin for all those carbs up front.

Enter the full snacking stomach. Oops. She ate none of the beans, about 1/2 the potato salad, about a bite of the bread, some of the corn, and some of the chicken. Oh crap. But her Bg by this time was somewhere in the 170ish area, so I decided to take a wait and see attitude. Sarah went outside to play with her little cousins, and I kept a close eye, checking her Dexcom every few minutes.

About 15 minutes of playing, and Dexcom beeped: double arrows down. Knew that was coming! She was having fun, so I just watched carefully for awhile. When she hit 120 with double arrows still down, I suggested that it might be a good time to cut the birthday cake. By the time the cake was cut, she was 104 with double arrows down. I didn't dose her for the cake or ice cream, but waited. She ate, and within a few minutes her CGM showed her in the low 100's and steady. We added carbs for the cake and ice cream, and put it on a 20/80 combo.

Miraculously she hovered between 120-150 for the remainder of the day. Um... wow? How the heck did that happen?

Sarah spent most of the rest of her day crafting, making her own scrapbook. She has stickers, paper, and scissors strewn all over. She didn't think much about bg, or bolus, or corrections, or even marshmallows. She goofed off, and crafted, and played, and just had a good ole' time.

My kind of day!

Monday, May 16, 2011

Type 1 Diabetes, and pumping insulin - in Sarah's words

Believe it or not, she did not receive any compensation from Animas for this. :-) She's just REALLY, REALLY loves her insulin pump.

Saturday, May 14, 2011

Saturday Snapshots - D-Blog Week topic #6

Just a few weeks after diagnosis Sarah plays her favorite role ever

Sarah and I traveled to Washington DC and had a chance to meet with Tom McClintock

Sarah and I went to a Kings Basketball game - courtesy of the American Diabetes Association

Nightstand after a couple of very long nights.

Sarah with Seymour - her blue Animas Ping Insulin Pump

Singing at the MIND Institute - 15 songs in a row meant some seriously intense diabetes management.

Sarah and I passed these magnets out to our representatives in Washington DC

Taking notes and preparing for advocacy in Washington DC

Testing with a friend is WAY more fun!

Sarah's insulin pump

Running around looking for a low blood sugar (aka, a sugary treat) on the steps of an art museum in Washington DC

A few days after we started Dexcom - and they match perfectly!
This was just a completely amazing six hour period

Friday, May 13, 2011

Awesome things resulting from diabetes - D-Blog Topic 5

As much as I would like to bash diabetes in the head and send him packing, I have to admit, some good has come from Sarah's experience - even she would agree.

1. Sarah got over her fear of needles.
2. No one in my household has an issue with blood.

Okay, those seem a bit superficial, so here I go with the deep analysis...

Before diabetes, we went about our days without much of a care beyond keeping everything flowing; sleep, work, dinner, kids activities. Rinse and repeat. Since Sarah was diagnosed, I think we've all spent more time contemplating the bigger issues of life, mortality, and in doing something meaningful. I didn't know anything at all about type 1 diabetes before Sarah was diagnosed - I hope that if I would have, I'd have been sympathetic, understanding, and involved in fundraising because it sure is a different animal when you're standing on this side of the fence.

Tonight I met a woman and we ended up talking about type 1 diabetes. She said (yeah, just like in the video!) "Wow, I could never give my child shots". And it made me wonder what my own reaction would have been to this conversation, if I'd been standing on the other side of the fence. Because really, what is the line on what a parent will or won't do for their child? I have no idea. For me, I'll do whatever it takes to keep my child alive. Beyond alive, I'll do whatever it takes to keep her healthy. Beyond healthy, I'll do whatever it takes to ensure she has the tools to keep herself healthy. Isn't that what mama's are for?

In addition to the education that comes as a result of having a child with an illness as time intensive as diabetes, we've had some great experiences we wouldn't otherwise have had.

1. Sarah got to sing at last year's American Diabetes Association walk.
2. Sarah and I had a chance to go to Congress and talk to our representatives and their aides about continuing diabetes funding for research.
3. Sarah is Youth Ambassador for Step Out 2011 in Sacramento.
4. We have both met some amazing people on this journey - too many to mention!

We...she is making a difference. We are mentors with the JDRF and really enjoy the opportunity to talk to newly diagnosed families. Sarah is such a vivacious, happy, cheerful, healthy little girl - I think just listening to her gives new parents a lot of confidence about how normal a child with diabetes can be, given the right care and continuous management.

I can see in Sarah a drive that I don't know if I saw before. She is passionate, motivated, and using her powers for good.

Wednesday, May 11, 2011

Diabetes bloopers - D-Blog Week Post 3

As a pretty OCD mom when it comes to diabetes, we haven't had too many bloopers (only because I check, recheck, and recheck everything - which is almost a blooper in itself). The only ones I can recall are these:

  1. Shortly after Sarah was diagnosed (within about a week), we opened the refrigerator to pull out her vial of insulin (before they gave us pens) and promptly dropped it on the floor - where of course it shattered. Insulin smells like sour bandaids, and we had that smell in the kitchen for awhile. We ended up jumping in the car and racing to Kaisers nearest 24 hour pharmacy to replace what was lost, and all was well.
  2. We almost had a serious blooper a month or so after Sarah was diagnosed. She called me from her daycare because her bg was really high (I don't remember how high, I believe somewhere in the 300's). I calculated the correction dose and gave her the number. Then (thankfully) a lightbulb popped up over my head and I quickly asked "what did you eat for snack?". The answer? Smores. Smores with their gooey chocolate and marshmallow inerds. So I asked Sarah to go wash her hands, test again, and call me back. She was right in range, somewhere in the low 100's. I am SO glad I didn't have her take that correction dose. - And that was quite the lesson learned. We don't always make her wash her hands immediately before every test, but if we get a number that's higher than expected, we clean well and test again.
  3. Sarah made her own blooper last week when she tested at school (because she wasn't feeling well), and then went on autopilot and bolused for her lunch - about 1.5 hours before lunchtime. She wasn't too unhappy about it. She ended up munching down several marshmallows to make up the carbs and her teacher never knew what happened. Poor kid...
  4. My favorite blooper was a night only a few weeks ago when Sarah forgot to reattach her pump before she went to bed. She did, however, keep it close enough to her that as I was giving her corrections during the night, it didn't error for being out of range - so I didn't realize she wasn't wearing it until the next morning. Oops.
Unfortunately, part of having a disease like diabetes is making mistakes. Diabetes is never an exact science, because everything you do affects bloodsugar. You try to do the right thing, providing either the right amount of carbs or insulin. You hope for the best and are always prepared for the worse. Diabetics are probably the best prepared people on the planet. Sarah never leaves the house without her insulin and enough carbs to bring her up from any low blood sugar.

In order to improve our ability to help keep Sarah safe, she will soon be getting a diabetes alert dog. If you are interested in helping Sarah with this, please visit her facebook page at https://www.facebook.com/ADiabetesServiceDogForSarah or her website at www.pawsforsarah.com

Tuesday, May 10, 2011

A letter to Diabetes, our uninvited guest - D-Blog Week Topic 2

Diabetes,

I am writing this letter in the hopes that you will finally get a clue. You are an uninvited guest in our household. We only allow you to stay because we can't figure out a way to get rid of you. That said, you are still a guest, and as a guest, I wish that you would show some respect to your host and her family. Therefore, here are some simple rules that we ask that you abide by during your stay-

  1. We are a busy, active family with a lot of responsibilities. Please try to respect that by allowing us to go out to eat once in awhile without you throwing a tantrum after a meal that requires Sarah and I to stay up late into the night poking fingers and making insulin adjustments.
  2. When we give you insulin, please use it wisely, as we've asked. It quite irritating when we give you what you ask for, and you throw it back in our faces. Be a bit more gracious!
  3. These sneaky rises and falls in blood sugar have to stop. If you could just be consistent, that would help us take care of your needs better.
  4. When Sarah isn't feeling well, please don't make it worse by putting on your scary mask and jumping out at her growling and cackling. It isn't funny. It isn't nice. And it pretty much just makes us resent you more than we already do.
While we understand that there is no formal eviction process, legal or otherwise, that would get you out of our lives, please know that if we find a way to remove you - we will without hesitation. And we'll be laughing and cheering. I don't really care how that makes you feel, because you've disrupted Sarah's life, and so many other lives, in a way that is completely unfair. She didn't invite you. She didn't do anything to make you feel invited. She was a normal, happy, healthy kid, and she doesn't deserve to have a jerk like you stalking her.

I'd ask you to go away, but I know it wouldn't do any good. So instead I'll just ask you to behave as the guest you are.

Sincerely,

Michelle

Monday, May 9, 2011

Admiring Differences - D-Blog Week topic 1

I've been living the world of type 1 diabetes, which 14 months ago I knew absolutely nothing about, for about 13.5 months now (not that I'm counting). And while I would give my right arm, left leg, an ear, or a kneecap to take diabetes away from my child, I have learned so much and met so many AMAZING people.

My first new friend was Jessica, who I admire tremendously. There we were, two moms relatively new in the world of diabetes. Jessica had about four months of experience on me, and was a tremendous help as I flopped around gracelessly trying to figure out the minute details of this crazy new world. She grounded me, gently letting me know when I'd hopped on the crazy train and fired the engines past capacity. In fact, over a year later, Jessica is still here for me. We may live thousands of miles apart, but we are both participants in diabetes. The amazing thing about Jessica is her ability to exude this complete calmness without missing a diabetes management step. She pulls me back when I start to go down the "if I could just keep her at a bg of exactly 102 for the next two week her A1c..." road - which I'll admit is still a bit too often.

Then there are the amazing adults with diabetes I've met. Probably the person who has made the most impact is Richard Vaughn, because there's NOTHING a D-mom loves to see more than a mature person with diabetes doing well both mentally and physically. Richard is an absolute inspiration. And he's become rather famous here in Sacramento, CA. As Sarah and I travel to the homes of newly diagnosed children, we bring Richard's book, and Sarah loves to relay some of his stories of early diabetes care. Nothing sooths a new D mom's soul like having a child with diabetes tell her about a man who has successfully lived with diabetes for over 65 years and is still living...and living!

Probably the most important person I've met in the 13.5 months since Sarah's diagnosis... is Sarah herself. Yes, I gave birth to her. I cuddled baby Sarah and changed her diapers. I taught her to read and multiply big numbers. I read to her every night for years. - But it wasn't until she was diagnosed with diabetes last year at age 10 that I really saw the person behind the child. Man, if she doesn't blow me away on a daily basis. She embraced her new life with open arms and a smile. She learned along with me how to count carbohydrates. She laughs at her highs and lows, while simultaneously formulating a plan to curb the next one. She hasn't shed a single D related tear since she left the hospital. She's my hero.


As much as I'd like to kick diabetes in the behind and send it packing, I can absolutely appreciate the amazing people I've met through this process. Some of my previous friendships have grown stronger, some weaker. Family bonds have been tested. I now know which people in my life I can really count on. I learned that Sarah's best friend is one of those true friends who really will stick with you through thick and thin, and I've learned that her parents are those kind of wonderful people who are accepting of challenge (they were the only ones to ask for and read the Pink Panther book).

So diabetes, for these experiences, I say thank you. We've learned so much.

But you can go away now. No, huh? Well, it was worth a shot...

Saturday, May 7, 2011

What's behind door number 3?

Do you ever feel like you're trapped in a old 1980's gameshow? You're compelled to smile, because the audience doesn't want to see a sourpuss, but inside your heart beats like crashing cymbals, nearly drowning out the clues you need for the next round. Sweat beads on your brow, dripping salt mercilessly into your eyes. You struggle to focus through the haze of stress and weariness. Your head pounds, the effort to extract the correct answer - when you know the correct answer could just as easily go wrong - puts your brain on overload.

Which will it be?
Door 1, 2 or 3?

And in this gameshow, the prize isn't a car, or twenty-five thousand dollars, or a cruise to the Bahamas. In this gameshow, the prize gets you a few hours of precious sleep this night, and a chance to play all over again tomorrow, and the day after, and the day after, and the day after, and the day after, and the day after...well, you get the idea.

The solution, you soon find, is to tuck those feelings away, you take your fears, your stresses, your inadequacies - and you fold them neatly into your sweat moistened kerchief and stow them in the pocket of your cheerfully colored dress. They don't always stay tucked away well either; and the camera's catch the bulge as they strain the fabric. But you smile, and firmly pat your pocket as you think "Not now". You focus your inner voice until it smooths again, the bulge laying flat once more, but its never truly smooth, and your can feel the coarse edges through the thin layers of fabric. This inner voice is the same soothing voice that sang babies to sleep, read picture books to toddlers, and soothed childhood bumps and bruises.

It's the same voice that explained to your baby why you have to poke them so often, why they carry medical equipment and a bag of tricks everywhere they go. It's the same voice that patiently explains a new way of life, with no end in sight - and tries to make it all okay with smiles, and hugs, and an occasional bowl of ice cream - all the while keeping the worry tucked firmly away so that it doesn't affect anyone but you, so that your child can continue to be a kid. So your child can continue to

Run

Skip

Laugh

Dance

Sing

Giggle

Spin

Play

Be healthy

Live well

This is what we want for our kids. So we play the game, knowing we will lose as often as we win. We will challenge ourselves to think clearly under stress and learn the rules until we know the game better than anyone. We will make sure a childhood is all it should be. And we will prevail.

Game on!