Our adventures in the land of "Di-ba-lee-teez"

Happy Birth-giving!!

2009-11-27T10:27:00.000-08:00

I hope every one of you had a great day, whether with a gaggle of family, or a quiet break from work, it is a good day for giving thanks... and for giving birth, as evidenced by my cousin, Cammie!

Cammie gave birth on Thanksgiving Day, at 12:59pm, just as her Mom, my Aunt Grethcen predicted: "Right when the automatic timer in the turkey pops up, she will give birth."

I was lucky enough to be a part of the labor and delivery, and it was one of those "life moments" that I will never forget.

However, as all of you know- even though I can really get going on my "woman-power, sacred birth, divine womb" type of tangents.. I also cannot help but seek out the silly parts of life.. which led to me recording some of Cammie's awesome one liners during her labor, which I just had to type into my google phone, lest I forget...

Here are some gems of the evening:

"They're not real...'punctual' around here, are they?" -referring to Doctors and nurses saying they would be back at certain times.. hee hee

which soon led to

"Why do people keep coming in and out of here? I am NOT here for ANYONE'S enter-TAINMENT." - referring to the nurses, aides, and dr's who would show up randomly.

which let to my crowning favorite.. when she realized she'd be delivering on Thanksgiving day..

"I am seriously going to kick some turkeys in the FACE... if I see 'em." -after a particularly intense contraction, and over 24 hours of labor.

In all fairness, once she got her epidural, we had a blast and she progressed to 10cm within just a few hours. She pushed like a primal goddess.. and voila..

MILES TAYLOR FULLENWIDER MEYER!

Born at 12:59pm, Thanksgiving Day, weighing in at 6 pounds, 15oz, and measuring 21 inches long!

Some of you may know Cammie, some not, but she and I are cousins, and have a special bond.

Cammies dad, Bob-and my mom were brother and sister, AND Bob and my dad were best friends... so when they all had kids, we cousins were very close growing up. Jeff and I were a few years older than Cammie and Matt (7 I think) and so we were charged with the role of "older cousins" and loved every minute of it.

We spent every holiday, and darn near every weekend with them, for many years, and Cammie and I both had a special gift for being giddily devious, and we adored each other.

When my Uncle Bob was unexpectedly killed (by a drunk driver) Cammie was just 6 years old, (the age that my twins are now). At that point, our bond became one of survival. We were too young to know how to deal with the grief and shock and pain that were handed to us, we who were the "queens of silliness of mischief" in our family. When you hurt deeply, with someone, the bonds are almost unbreakable.

In our twenties, Cammie and I diverged onto seperate paths. We stayed loosely connected, but rode out the waves of our lives in different states, and in different styles. In our 30's we came back together as a family, and our bond was uncovered, and tested out, and renewed.

Being able to be a part of this birth was one of the absolute highlights of my life. Not only my connection to Cammie, but my new connection with Miles, her son- was just overwhelming for me. So many times as a young girl and teen, I swore softly to myself to always be there for her, to try and protect her, if I could. I wanted to stop this world from hurting my cousin. As many of you know, who have tried to be that for someone, life doesn't work that way.. you can't stop people from learning their own lessons, in thier own way. You can't dampen the gift of life by taking away the pain and growing opportunities that are thrown at us each year. I many times felt that I had let Cammie down, that I wasn't big enough of a "big cousin" to protect her. I never went to enough of her softball or volleyball games. I made choices that kept me from being part of many family gatherings while she was still young, and needed me.

I am forever grateful for the opportunity to "be there" for her, in every way, and offer her everything I had to support her to have the best birth experience she could. I am deeply grateful to Todd, her partner, and Gretchen, her mother, for being gracious enough to allow me to take on a role that they had much more right to be in than I did. Not many moms and boyfriends are able to do that kindly and lovingly, and they both did. THANK YOU!

HAPPY BIRHTDAY MILES!!!

CONGRATULATIONS CAMMIE AND TODD!!

Happy Thanksgiving to all of you, my wonderful friends- and my family!

-Jen

This is how we do it, baby.

2009-10-17T20:40:00.000-07:00

YAY! Logan has rallied, and did not throw up any more today (hooray!!) and also managed to keep his blood sugars up, and even ate some chicken at dinnertime.

We gave him go-gurts duirng the day to bring on the carbs, but mix them with protien so that they stay in his system longer.

Thanks to all of you for your prayers and thoughts!

As a side note, I was cleaning their room tonight, and it hit me how big they are.. as I looked at some of their toys, I realized they are waaay past them. It happens so fast!

I had a relaxing time sorting the toys, and just being in their room, setting up little things for them to discover: a cluster of dragons surrounding a wizard toy, a bin of math activities, a collection of new leap pad stories, etc. Even though part of being a mom for ME will always be about Type 1 diabetes, being a mom is the role I cherish.

Today I just was pissed at this disease. How scary for a little kid to pass out! How dangerous for him! How terrifying for us! arrrhggghhg. It just makes me so mad, because life has enough worries, raising kids in this day and age.

Stupid, dumb, Diabetes.

That's right. I said it.

I think that Global Diabetes walk is coming up, I need to sign up for it, or organize a walk with the kids and neigbors or something.

I will end this post with a pictorial of our recent pumpkin farm visit with the lovely Sherri Monteith and her silly offspring- Irislyn and Sheadyn. It was a perfect fall day, and it's a ritual we like to do with Sherri every year.
This is Mr. Gray Jonathan Liteky, just as cute as he can be:

Some of the many pumpkins that drove my Libra "perfection" quest into overdrive.

Here are the children that make it all worth it: (L-R) Logan, Irislyn (Linny), Logan, and Sheadyn. Sheadyn appears to be having a grand mal seizure, but he is just happy.This is a pic of the cornfields, with a flock of blackbirds in the sky above. Plus some pretty perfect clouds. Every time the birds would fly overhead in thier big flock, Jer and Sherri would announce "The birds! The birds! Did you see that? Look at 'em! Where are they going?" etc etc. I thought if I took a picture they would stop. No. But here is the picture!

Jeremy does Daddy Duty on the pulling of two wagons full of pumpkins....Irislyn decides she can do it herself. :) Atta girl!

Logan loves everything about these "face cut out" thingies.. plus he is trying sooo hard to say cheese!

Here was our final haul! Logan's is the biggest, and Gray's is the tall skinny one on the bench. We chose one for Max, and then I got some fun fancy ones that I SWEAR I am going to do something extra cute with!

Hugs to you all, and to all a good night!

Sick Sucks in a dangerous way............

2009-10-17T13:47:00.000-07:00

Logan and Gray were sick all last week, with fevers and various aches, sore throats and the like. One day after returning to school (Friday) Logan is sick again!
He was feeling poorly all morning, and when I sat near him to offer him some Motrin, he projectile vomited alllll over the floor. YUK!
On top of this, we were already treating a low blood sugar, by giving him juice. So I was wiping up his stomach's rejections of the morning, and panic starts to creep in. I like to involve as many people as possible in my panic, so I call Jer up the stairs.
We decide to let him rest for 15 minutes, then give him 2 oz of Gatorade.
The 15 minutes goes by, and the Gatorade stays down, so I check his blood sugar, it is at 65, which is down from the 89 it was just moments before, and far away from the goal of 150.
I give him more gatorade, and wait 15 more minutes.
Next BG (blood glucose) check reads 45, and I can't wake him up....

This prompted our first real "frosting" moment, where we had to rub cake frosting on his gums, because he was too woozy to eat. I don't like this, I don't like this.. I keep saying in my head. Logan's skin is the color of a kleenex, and his lips are an unhealthy blue from the blue frosting tube we are using to shove in his mouth.
OHH............... My brain keeps saying "MY BABY and "Let's panic more!" but I know by now not to, so I try to keep it cool.
"We might have to go to the HOSPITAL!" I squeak.
I can see from Jer's sidelong glance, that this is NOT keeping it cool enough.
"Or, not.." I try to rally- for Gray's benefit really, he is right there and worrying, too.

Finally we have gotten part of a juice box in him, and I was able to temporarily de-activate his Omnipod, so that he is getting NO insulin.. just to make sure he does not pass out

He has only "trace" ketones, so this is risky, but I think it is worth a shot. He needs some insulin to help his body clear the ketones.. so I should give it a few more minutes and then go turn in back on.

So--- the adventure continues, and I will try and update this later today.. keep Logan in your thoughts, and make a voodoo doll for Type 1 Diabetes and stick a needle right in it's privates for me.
:)

Long time, no post!

2009-10-08T10:49:00.000-07:00

Hello to all of you friends and family, from the land of Dibaleetez!

Before you get the wrong idea, and start thinking that this post is going to be meaningful, inspirational, or reflective, let me remind you all with a photo, of what I am dealing with day to day:

Yes.

This is a photo of what I found in the Organic, environmentally friendly cereal that my kids eat.

I found a dismembered GI Joe, just floating around. (I can only imagine the battle that has just passed...)

So I guess what I am trying to say is, things are good.

Things are normal. Things are just as amazing, sad, stupid, and fun as they were before the diagnosis, so what more can I ask for?
We are raising twins, and one of them has diabetes.

As it happens, I found this evidence of heroic sacrifice, when I was checking Logan's bowl to see if my insulin dose was right on, or if we'd have to adjust. In the past, I'd have been too panicked by the leftovers to see the humor in the toy, or allow myself the moment to imagine Logan's battle sounds as the GI Joe met his milky destiny. Now, I can. :)

That is the reason that you have not heard from me in so long. Somehow, without my even noticing it, life returned to a very normal state. Diabetes no longer crowded my every waking thought and action, and, well, things were so good I didn't need to write to free myself of the internal stress. Not all areas of life are stress free, of course, it's just that I haven't held up the filter of Diabetes to every situation I encounter.

Either that, or it is so second nature already that I don't notice... either way, it sure feels a lot better.

I'm writing now, and hope to continue writing, to keep up my attempt to show and share how we manage the life we want, with the challenge of diabetes.

Since we've talked, we've camped all over Washington and Oregon, we've gotten a new puppy, Jen got a job, Jer went to London, the boys started Kindergarten, and turned 6!
If you want the short version, you just had it, and you can skip the photos and stories below. But, if you are a glutton for my particular brand of punishment- read on, and enjoy!

Glutton For Punishment Version:

Summer was a good one for us. One of the main goals Jeremy and I have as parents, is getting our kids out in nature. Hiking, camping, swimming, storytelling, firemaking, and yes, general hippie nature loving and relaxation.

Our first trip was to Oregon.. we saw the Goonies house (!) and spent days on the beach at Cannon Beach, and Seaside.

Logan loved running into the waves, while Gray couldn't resist stopping and drawing in the large, flat expanse of sand with his fingers or a stick. He would RUN, stop, draw like a madman, then RUN! Logan mostly tried to attack Seagulls.

This is where we spent Father's Day, in Seaside Oregon::

We spent the whole day here, digging, building, eating, and playing. You can't really tell, but this is Logan playing a new game he made up called "try to dodge out of the picture before Mommy takes it". We played this game for a while, and he was cracking up!

What a sneaker!

ahhh he got me! Just a foot and a hand, he made it out of frame!

The next month, we went to Orcas Island, and scored the most beautiful campsite in the park:

Here we also boated, fished and re-enacted the trauma of "Mommy dropping the camera in this lake last year". We went to spot where it fell in, and had a moment of silence. (Well, almost silence.)

One item we always brought along our "Diabetes Backpack" which is full of emergency supplies, and backups of pods, insulin and glucose meters. We also, actually bring backups for our backups. This is how Jer and I know we can relax. Even if everything goes overboard, we've got the supplies we need.

I didn't get any pictures of us, mostly because after I took this pic of the site, we had a blast from then on, and I was too involved to take pictures. This is also the place where Gray got stung by a bee... it hid in his snuggy (blanket) and stung him as he was falling asleep! What a total bummer! The whole campground heard his wail, across the lake "It STUNG me!!!! Ahhhhhhhhhhhhhhhhhhhhhhhhhhhhh!" He casually said to Logan the other day.. "Oh, that's right.. you haven't been stung by a bee yet. I've HAD my first bee sting. I know what that feels like." He can be smug about the weirdest things.

PUPPY!!!!!!!!! I know I've assaulted most of you with the utter cuteness of our puppy, but here she is again:

Her name is Niah, like "Hi,ya!"
Or

"Princess Niah Organa Puppenstuff Dirtypaws Buckleberry Undertoe Liteky"
We got her from the Humane Society in The Dalles, OR. We were told she was a Border Collie, Lab, German Shepherd mix. Everywhere she goes, she has admirers, and she is wonderfully cute and smart!

When we were not camping, I tried to get the kids out hiking! This is the boys and two of their friends, Bobby and Carmen, on the Ashael Curtis Nature Trail. We found gnome homes, humongous fungus, creeks, ferns, and conifers!

Gray just keeps losing teeth.. er.. I realize this shot is not attractive or.. even bearable.
But how could I not include a shot where you can see Gray's nasal passages?
It was a have to, people.

The next magical spot we camped at was on San Juan Island: San Juan County Park. This is the little privatey beach just below our campsite-where we spent a lot of our days.. we met some great people from all over the world.

We had a community sunset send off every night. (all the campers met on the playfield and waved goodbye to the day together! Why can't we live like this all the time??)

We also camped on Whidbey Island (We got to visit the spot in the forest that we got married in!) and share the park with our friends Brian and Katie Borton.

In September, the boys started Kindergarten, and turned 6!

Starting school was a bit of a stress, as Edmonds School District has decided to "warehouse" all the kids with diabetes into one school, with one nurse. While I understand the budget constraints, this also meant that even though our kids names came up for the lottery to attend our school of choice, Madrona K-8, Logan could not go there until he is "able to demonstrate adequate ability to care for his diabetes on his own". The whole thing is so crazy making- it's a hard combination of rejection, anger, protectiveness, and fighting for your rights-
In a long story that is best told over a glass of wine, I did try to fight it, and got no results.
So, I switched districts, to Shoreline. We found the Room 9 program, which is also a K-8, multi age classroom style of school. The boys LOVE IT~

In this picture, Gray would like you to notice his Ka-ra-tay move, and Logan would like you to notice his Pokemon backpack.

Thank you.

Somehow we got in the habit of taking a photo almost every day when we leave school, so I have a million of these.

We have since been asked NOT to climb on the bike rack.

But notice our Kindergarten buddies, Sylvie and Spencer, following our excellent example.

Room 9 Community School has a lot of parent involvement, and echoes our values in terms of community, focus on nature, personal responsibility, and celebration of life. We already attended "Fall Camp" which is an outdoor school experience for students, teachers, administrators, and parents to all bond and get to know one another at the beginning of the year.

We attended small group classes, including terrarium building, clay art at the river, sewing, bike safety, and this one, a leaf walk and poem writing session:

As far as life goes, it goes on. We have friends that are dealing with less than we are, and some that are dealing with more.

We are learning to let go of our "story" about what our life should look like, and instead embrace the story of what is real. It hurts that Logan has diabetes, but he does.

It also feels good to know that we are able to experience life to the fullest, given the technology that is available to him. We have had times where we almost forget about the D, and also times where it has screwed up our whole day. (like when a pod fails, or we put the pod on the wrong spot and miss the circle of skin that we numbed with cream).

My goal for this second year of life in the land of Dibaleet eez, is to embrace everything I have learned about how to keep Logan healthy from Western medicine, and now move on into exploring alternative health approaches that will support his whole system.

Type 1 ( unlike Type 2) diabetes, cannot be improved or "cured" with diet, exercise, or any other lifestyle change. But as we move past the terror of having to deal with this, we want to find ways to keep Logan as healthy as possible, since illness of any sort is an extra challenge for diabetics.

I am in the process of finding a naturopath who works with diabetics, and I have already started our family on the switch to a much healthier diet. I've been doing this in increments, so that they don't really notice (muah ha ha)!

Okay, it's a little hard to miss the flaxseeds in the pancakes, but who cares! They like them. I think.

I think the best way to end this update, is with a picture.

A picture that tells a story.... of a family.. one that takes part in wholesome activities, and would never gamble, drink, shoot a gun, or be accused of lewd conduct.

Posts Coming soon:

The Puppy ate my favorite __________(fill in the blank)!

How does Logan manage his Diabetes at School?

Our Trip to the Pumpkin Patch/AKA watch Jennifer's excruciating search for the "perfect" pumpkin!

W. O. W.

2009-03-23T12:26:00.000-07:00

So, I guess it speaks to the power of "positive thoughts/prayers".. .because in just two hours Logan went from having Large amounts of ketones in his urine, to NONE.

So- thank you to all of you who sent your love, and of course to the brave little solider himself, Logan.

(I always check Gray's too- because it's a fun looking litumus type strip that turns colors... )

Much love to my street team!

Sick Day

2009-03-23T09:53:00.000-07:00

Our whole family is sick.
It is awful, a yukky virus, and there are fevers, sore throats, body aches, coughs and more delightful symptoms to be had by all.
Logan's number was high when he woke up, 280, so I checked him for ketones and he was in the bad place. "moderate to large" ketones present in his urine.
If you are sick, your body needs extra energy to fight the virus, and if you can't eat enough food to give your cells energy, or if you don't have enough insulin acting to release blood sugar into your cells- your body starts burning up it's own stores (fat and muscle) for fuel. The waste product of this process is called Ketones.. and now we have them.

I called the hospital, by this time his numbers were at 375, and we doubled his correction factor for his insulin dose- so far he is feeling okay, but I will need to keep checking his blood sugar and ketone levels every hour or so until they come down.

Poor Loganator!!

:(

As if being "regular sick" isn't bad enough!

Baby steps..

2009-03-13T15:41:00.000-07:00

In the right direction!

Today is a celebration of the very first day Logan went to preschool (or .. anywhere besides Grandma's house) without a parent!!

Wait, I take that back. He has had two three hour playdates at Bobby's house (bless you Mary Kay!!!!!!!!!!!)

But- this was the first "day" he spent at preschool without ME THERE!!!!!!!!! I am not sure if you are getting this.. I DROVE AWAY IN MY VAN. THE BOYS WERE NOT WITH ME.

Hee heee!

I had a great time with my soul sistah, Sherri, -we planted seeds, made lists, garage saled, and talked without any interruptions- wow!

I packed him a 10 gram snack, checked his blood sugars before I left, then came back at lunch to check his blood sugar.

That part was a bit rough, Logan wanted to leave with me. But after some encouragement from Linda (their teacher) and a willingness from Dani (the other teacher) to call me after he ate, so I could walk them through the PDM... I left.... again. :)

(Quick dancing break- .... okay, I'm back.)

Another celebration- today was our first outside pod change!

The boys are playing with Shelby our turtle in the sandbox, and I just brought out what I needed, and changed the whole pod WITHOUT INTTERUPTING THIER PLAY. Can you imagine??

Well, if your kids don't have diabetes, I guess you can imagine.

But if you are giving shots, or are new on the insulin pump- it is hard to imagine that kind of freedom.

(Yes, Mom, I kept the pod sterile, and the site was wiped with alcohol, too.)

One more celebration of the Gray-ish sort.. Graybug lost a tooth!

The tooth fairy came, streaming a trail of glitter to Gray's bedside, leaving gleaming coins under his pillow.

So what can I say but a huge thank you to all of you who have seen us through this far.. and a big thank you to my friend Katie, for helping light a gentle, but very bright fire under my ass to get the kids back in preschool.

Thank you to Linda for being willing to learn the ins and outs of diabetes, so Logan can participate at Tessera. Thank you to you too, Dani- for looking me in the eye and saying "um, I would be willing to learn whatever testing needs to be done, so you don't have to come back at lunch."

I can't really express how much that means to me. Not the extra time away, but the willingness to work with this crappy disorder, and make it easier and less scary for Logan, and for me, to have mornings like today!

That's MR. Dibaleeteez to you.

2009-02-10T11:19:00.000-08:00

Howdy!
We have news, sports, and even fashion from the land of D!

News:
We just finished up another round of Children's Hospital visits, one for Gray and one for Logie, and we have some great news.... and some waiting to do.
First for the great news: Loganberry Jam is doing so, so well on his pump! Dr. Sanda said Logan is in "the sweet spot" with his blood glucose levels, meaning, he is in a good place for his age.
He also told us that Logan is the youngest person in his practice to use an Omnipod, and we were the only family that has sent his downloaded information from his PDM stores about his blood sugars, carb intake and insulin use..
I was proud of us!
(We asked the Insulet corportation to send us the infrared "reader" to download Logan's PDM onto our computer, then just emailed the info to the Endocrinology Dept. at Children's Hospital, so it was super easy and made us look good, apparently.)

Logan's weight is up to 44lbs, (he was a skinny 37lbs at diagnosis) and he has grown at least an inch- so his body is rocking and rolling with his new program.
One of the main goals for the clinic visit every three months, is to measure and record Logan's "A1C level", which is... measured in percentages, and his is now down to 7.7, from 9.1 at diagnosis. Is it just me, or do I feel an afterschool special about A1C numbers coming on?

Fade in to middle American kitchen, fruit bowl on counter, tousle haired boy walks into the kitchen, and grabs an apple.
Boy: "Hey Mom, what gives? You said my A1C was down, isn't that bad?"
Mom gives a smile, kneels by the boy, and puts her arm around his shoulders: "No, Jimmy, having a low A1C number is GOOD.. you see,a nondiabetic person will have an A1c between 4% and 6%. The closer a diabetic can keep their A1c to 6% without experiencing excessive hypoglycemia, the better.
Jimmy: "Huh?"

I know, it's hard to make this crap interesting, but since I am going to be reporting his A1C numbers to y'all, I thought you should know what it means. I will try to make this as painless as possible...
A1C roughly translates into "what's your sign" for the diabetes world. It is an indicator of how well you are managing your 'betes. It is a blood test done that measures the average blood glucose experienced by your blood cells over the last three months. It's a very important test for two reasons:

The A1C never lies. Teen diabetics can lie,or manipulate glucose monitors (have non diabetic friends test their blood, thereby inputing perfect numbers into a glucometer.. smart, huh?) But the A1C test will tell the truth of the matter over the last three months.
The closer your A1C number is to a "normal" person, the lower your chances of diabetes related health complications. The goal is to keep blood glucose levels as close to normal as possible. This helps to minimize the complications caused by chronically elevated glucose levels, such as progressive damage to body organs like the kidneys, eyes, cardiovascular system, and nerves. Ew.

The thought is, the more you love yourself and are aware of diet, exercise, insulin, stress, hormones, ratios, pod failures, etc- the "better" your A1C will be and THE BETTER OF A PERSON OR PARENT YOU ARE!
"Hey baby, what's your A1C?" is a totally played line in diabetic bars, and is what all the diabetic soccer Moms are busy comparing notes over.

Mom #1: " My son just scored three goals in one game!!"
Mom #2: "Yeah, it's too bad about his A1C though- MY JOHNNY has an A1C of 6.2!!"

This is the subculture of diabetes that I am getting to know, and for some people, asking about their A1C is verboten, and considered a very private matter.
Anyway, Logan's is 7.7, and Dr. Sanda says that it is just perfect, it is still coming down, and we have his whole life to get it closer to 6, but while we are learning about diabetes, it's better to be a little higher, so you run less risk of low blood sugar problems (passing out, etc). I think it's so cute how my kids call him Dr. Santa.. he is the farthest thing from a roly poly white man.. he is Indian, very slim, young, and very intelligent. He is also very warm and supportive of parents.. I feel so lucky he is our "Endo" as they say in the world of D.

Now to the waiting part: Graybug has been complaining of lots of tummy aches, and we had to get a blood draw from him to rule out a yukky disease called Celiac Disease, which basically means he is highly allergic to gluten. We will find out in a week or so- and if it's positive, we move forward with that, if it's negative, I will take him in for allergy testing, to see if his stomach aches are caused by food. It could be anxiety, too- I just had to rule out the worst possibility first, since siblings of kids with Type 1 are at high risk for this disease, as it is another autoimmune disorder. The good news is, I was able to contact Trial Net, and have a researcher meet us there with tubes to fill, so we can find out how many (if any) markers Gray has for Type 1 Diabetes.

So yes, I took an anxiety pill. I was fine after that. It did take me, my mom, and two nurses to hold Gray down for the blood draw, so it was fairly traumatic (for me) but he got a beanie baby from a nurse, and promptly announced "That didn't hurt!" at which point I couldn't decide whether to faint from relief or kill him for his dramatics. I decided to kill him later. Muah ha ha :) I was relieved just to have it OVER WITH.

We won't get results from that one for about 8 weeks, so you can bet I will be posting as soon as it comes in.

SPORTS:
We went to a "Diabetes Community Event" at Pump Planet, where all the kids got to jump on huge bouncy things, we all were served lunch and snacks and there were all kinds of information tables set up with diabtes specific info, and trade slingers passing out new finger pokers, new kinds of pumps that come in colors, etc. I chatted with the Omnipod rep and found out some great new news:
In 1 year, the pod will be 40% smaller! Wahooooo!
In 2 years, the PDM will be able to read signals from a seperate Continuous Glucose Monitor.
In 3 years, the pod itself will have a CGM right in it.. so no need for two "sites" on the body!!

I love LOVE LOVE Omnipod! I can see now how things will just keep getting better for Logan, and I am so happy and grateful. Logan slept in our bed the other night, and I kept waking up and seeing him smiling in his sleep- just to be sleeping between Mom and Dad, while Gray had a special night with Honey and Papa. I don't have to have my heart break for him each day now, I get to see hope in his future.

FASHION: Okay, there is no real fashion, other than the pirate wrist band that I use as an arm band around the pod to keep it protected on his arm. Maybe I should design some cute arm bands for kids using pods?

That's all the news that is fit to print as we go to press- I will be checking back in as test results come in, and updating you on the absolute cuteness of the boys!

Omni-mom reflections

2009-01-24T13:05:00.000-08:00

Hmmmmmmmmmm. (Deep contented sigh)

To answer the question "How are things going with the pump?"

I have to say, it's kind of freakin' awesome.

I didn't realize how tense I still was a lot of the time, until I started to relax a little with the pump. I didn't realize I was having a subconscious reaction to grabbing my bag of syringes every time I left the house, until all I had to grab was a nifty little remote control device (PDM-Personal Diabetes Manager). It's small! It's a gadget! I can give him insulin while he sits munching popcorn in the cart at Target, just like all the other kids! - (and I don't have to have him pull his pants down in the bedding aisle, to give him a shot for the carbs, without going alllll the way back to the bathrooms to do it!) When he needs insulin, I just point the remote control in the direction of Logan, and press a few buttons, and 'beeeep'.. that is it........... :)

When we were giving Logan injections, there must have been an unspoken sense of him being a "patient", curiously- it didn't register with me until it went away. This is also probably why we chose the pump with no tubing, the hospital tubing necessary with a conventional insulin pump, always looked "patient-ish" to me.

Okay, yes. I have hospital issues, and IV issues, and, well, issues in general.

So for an issue ridden needle phobic mom of a diabetic, I have been handed a huge gift in the form of a small pod and a remote control. The best part is, not only is this the best choice for Logan's long term care being much much better, but also, the unexpected freedom of getting back the "vibe" our family used to have, before Logan "caught Diabetes" as he sometimes says.

We don't have to tense up, in case he tries to wiggle out of a shot.

We don't have to offer the choice of a snack with a shot, or making him wait till mealtimes, so he only got three shots a day (minimum).

We don't have to hear him cry "you are HURTING me" or quickly cover up a site that unexpectedly starts bleeding, because we hit a tiny capillary. (this freaked him out).

We don't carry bags and bags of needles.

We don't have to carry insulin around.

Strangely, one of my most favorite things we DON'T have anymore, is...
We don't find needle caps all over the house.
Slowly they have become less of our "regular mess", until I found one when I moved the TV in the rec room and it startled me.
A little orange, plastic cap for a syringe.

When we were giving Logan injections, these little caps were always all over, partly because the act of giving the shot was distracting, and the little cap would often fall behind or under something. Also the boys collected them in different containers, and sometimes used them in hot glue projects, etc. When I used to find one (or two or five) in my sweeping pile, it would give me a little twinge of regret, or sadness- I'm not totally sure of the exact feeling, but it stung.

Now, it's presence is moving out of my day to day life-
THAT makes me happy.

I called our Omnipod rep and our Pump Nurse, and thanked them for all their tireless help, dedication, and support. I like to spread the word when things are good, and these peoples jobs are pretty intense- a good report is what they wait for, I imagine.

Anne, Logan's Nurse said to me "This is so gratifying to hear, it makes it allllll worth it."

I don't even know if I can express what this means to us, emotionally.. that so much of what we "lost" as a family, was a feeling of "okayness". Now, I see and feel the old and wonderful feeling, rising around us more every day. I have actually had some moments of pure glee, feeling the old "us" back in action.

Now of course, it's not all wine and roses, but I will save our challenges for another day- today I just want to bask a little in the feelings of goodness.

mmmmmmmmmmmmmmmmmmmahh.

Holiday Letter from the Litekys!

2009-01-02T10:18:00.000-08:00

"And the stockings were hung by the fireplace insert with care, in hopes that an insulin pump soon would be there..."

Merry Christamas and Happy New Year!

Those of you who know me well, can appreciate that NOT sending out cards this year rankles me. (There is nothing that gets me going like stationary with glitter on it!) But, this year- there was just not time, so I shall save my eco-friendly, hopeful, and sparkly cards for next year, and give you all a "Holiday Update" here on the blog!

Let's be real here- 2008 was not, um, our favorite year.
One of the reasons I didn't do cards, was that I just couldn't write the dang letter. What to say? It was either the "Life lessons we learned while being dragged along under the speeding bus of life", or the "Cry with us" letter, or worse. Probably the real letter lies somewhere in the middle.

Most of you know the challenges we faced, and they were all biggies.
We had death (Jer's dad, and our dog)
we had dismemberment (Jen's dog bitten hand will never be the same, then she broke her toe)we had angst (Max had a tough time the last quarter of school)
we had disorder (Logan's pancreas staged a partial revolt against life, and brought Type 1 Diabetes into our world).

And though, dear reader, it seems our little family was beset by a cloud of "oogieness" that just wouldn't go away- we did prevail. We cried, we learned, we grew, and yes -some of us still reserve the right to take an anxiety tablet once every few weeks when things get overwhelming. BUT, at the end of the year, somehow, the clouds parted and things started looking up. Here is some of the NICE stuff that happened, that maybe you DIDN'T know about, so relax, and enjoy.

We got a kitten this year, her name is Stella, and she is my new lil soulmate. She always is handy when we need some super soft kitty time. She sleeps in our bed, much to Jer's dismay, but I catch him snuggling with her quite a bit.

Logan got off the shots, and onto an insulin pump right before Christmas.. and can I tell you what a difference it makes? We change the pump once every 3 days (and now use numbing cream, so he can't even feel it). When we want to give him insulin, we just stand near him with a remote control device and punch in the numbers of carbs he ate. The pump does all the calculating, ratios, etc... this is life changing for us. It takes away the needles for one thing, and more importantly, the feeling that Logan is a "patient" in any way. I LOVE the Omnipod. Thank you SANTA!!

We went on two of the best vacations we've ever had this year, camping on the lake on Orcas. and our family trip to Canada. Even though things were tough in Canada, (being right after Logan's diagnosis), we were genuinely awestruck with the beauty of the Sunshine Coast. Thank goodness that tough transition for our family was spent in one of the most gorgeous places around these parts. So even when I think back on how hard it was, I get the bonus of all the fun memories we made on our trip, too.

Max graduated from High School, and had the most amazing party at our house, complete with 30 min slideshow of his life, provided by his Dad, Jason. I cried, laughed, and joined in a huge group of people who love Max, as we celebrated his coming of age. (He immediately went and got a tattoo). Also, Max moved out (!) To a house in Edmonds with a group of people he met at work (Pottery Barn) and some new friends. His second job is at the Downtown Seattle Borders,and he is just paying off the new engine he put into his vintage Volvo. I wish I had a pic of the car, it's just a match made in heaven for this kid.

Jer and I have reached a new level of love, mostly because I keep kicking his butt at Othello, and I just relish that feeling! No, really- when the chips are down, there is now no doubt that he and I are forever. I am grateful to.... whatever needs me to be grateful to it, for the gift of my husband.

Here is a pic of the twins with Santa, at the Christmas tree farm.I told them to "go put on something really special, we are going to find our Christmas tree!" And this is how they emerged, full of happiness, from their room. "These are the fanciest clothes we have in the dress up bin," Logan explained, "I KNOW Santa will be so happy!"

Logan is in blue, communicating with his angel, apparently, and Gray is the dubious Snow White, with coordinating purse. You can't make this stuff up, it just happens, people.

This is the "Shadow Puppet Theater" that Jer and I made for the kids for Xmas morning.. Jer made shadow puppets, and I made the backdrop.

We "dog-sat" the Parsek's dog for a few weeks, and Gray is in love with Nick.

So, as you can see- we made it.. and we have high hopes for our 2009! I would like to add a few quotes from the kids, that seem to sum up how wonderful life is, even when it is difficult.

"It's not about jewelry. It's about being COOL. It's style." - Logan (about a "jumping off the couch" contest).

"If I get lost, I follow the light. AND, I follow the drinking cord!" - Gray (about playing outside in the snow at night. He meant drinking GOURD.. thank you Reading Rainbow!)

"At least I WANT what I need!!!" - Logan (trying to come up with the ultimate dis, during a verbal war with Gray. I used this for DAYS afterwards.)

"MOMMY!! Guess why we call it 'frozen pee snow'??" -Gray (after coming in from an hour of playing in the snow...................

So, all is well- things are moving along in the way they need to, and we are just trying to get the most out of each great moment, and they are plenty. We are grateful for our kids, for modern medicine, for the scientists, engineers, designers, and researchers who help make Logan's Diabetes take a backseat to him being a child. We are grateful for friends, family, and the chance to make this upcoming year one of hope and change.

LOVE TO ALL!

Jen, Jer, Gray, Logan, Max, and Stella!

Pump Start Day, DEC. 18, 2008

2008-12-18T16:19:00.000-08:00

Here is a funny pic of the twins, who picked thier "fanciest outfits" from the dress up bin, to go xmas tree shopping in, to honor the holiday spirit. I didn't have the heart to explain that the dresses might not go over well, so we just rolled with it. My kids don't care, thank god, about lame gender associations with clothing, and the like. This horrifies my mom, but what can I say? They are my kids. Love 'em, this is who they are!

Well, as many of you know, today is the day I have been waiting for, for so long! I bet you are looking for a super funny and glowing post! That is why I put the pic of the boys dressed up, above, to buoy up your spirits before reading our recent adventure.. into HELL.

(Well, not really Hell. It was just a tough day.)

I have been looking foward to it for so long, I am at a loss to all of my tearful moments, my panic attack during the training, and the “restimulation” of the worst feeling I have ever had, as"a Mom who is hurting my kid on purpose." I wasn't expecting that to come up.
Yes, he needs the insulin.
But OH.
It sucks to watch him struggle, cry, and finally turn to terror and beg me NOT to hurt him.
But I’m getting ahead of myself, the class itself was fine, and Logan spent it showing 11 year olds how to win the levels on Lego Star Wars in the “sibling playroom”.

The class was done very well; an organized group training, followed by individual trainings from a rep from our chosen pump manufacturer. We had the Omni pod rep, and we were feeling pretty great. A bit overloaded with info, but psyched.
Then the first girl in the room, with her family, got her pump attached. Logan was still waiting in the playroom (thank GOD) but as she wailed, begged, shrieked and then pleaded over and over for them to stop... I felt the BIG BAD DARK DOOR of FEAR open in my chest. “I remember this”… a voice in my head said. “This is where you do what to have to do, to keep your kid alive and well. You are the grown up who has to absorb all that raw emotion, all the stress of change, the rejection of the scenario, or just his rejection of us personally.” I know Logan well enough to know, he will need to rid himself of the demons of his fear and powerlessness.

This is not a door I like.
I like a hobbit door, sweet, round, full of silliness- like the snowball fight we had last night, or the sledding “as a family” all crunched up on one sled. (It was awesome!)
But I hadn’t realized there were still unpacked boxes of fear rejection failure, guilt and my own needle phobia/terror... Just lurking. Waiting behind the dark door that cracked open when the first little girl started to scream and beg.
Now why they have all these families do this in one big room, it’s beyond me. I suppose a lack of space, or something.
So Jan, our Omni pod trainer, says brightly “O.K! Shall we go get Logan from the playroom, and do this thing? I think we are ready!”
Jer and I: (hesitant but eager, even over the crying around us) “Sure! “
So I learn how to fill the pod with three days worth of insulin, and create a sterile zone for pod changes..while Jer fetches Logan. In he comes, a bounce in his step, and a big ‘ole smile.
You couldn’t ASK for more cooperation.. he picked a site, (his upper bum) he yanked down his pants and undies and said, “Let’s do it!” We got the pod attached, and then came the moment when we had to push “start” on the remote, for the needle and cannula to be inserted under his skin. The needle retracts back up into the pod, and leaves a thin, clear, flexible tubing about 1 inch long under the skin.
This “poke” was a lot worse than Logan expected. Or we expected. Or the baby Jesus himself promised me would NOT BE PAINFUL to Logan.
So thus began the descent.
It was painful.
It hurt so bad he kicked and writhed, turned beet red, cried, beat up his stuffed animals and howled. All of my prior firm resolve just fled the room like a puff of smoke, and suddenly, there I am, body hugging my struggling child, who is begging me to ‘take it off, stop, please IT HURTSSS” At this point the rep said something about his blood backing up into the catheter, and that was the last word I heard. I shut down, I yanked up Logan’s shirt, and I gave him gentle touches on his back and just hummed to him. I couldn’t deal in that moment.. no, not at all. Of course, I have the luxury of being a wuss when Jer is around, strong and semi-okay. My psyche knows this, and picks it’s time to check the fuck out if need be. ( It needed be.)
Haze of emotion, flashbacks, and a flurry of papers, and we are on our way. Terrified, I realized the hospital is just a scary maze of larger than life clowns, zoo animals and trains.. all blazing their glory across every surface. I am lost, Jer is irritated, we are trying to find the gift shop and I am still NOT in my body.
Logan, by this time, is “over it”.

(Here is the Pump, all decorated up for Christmas.. a la Logan and some stickers.)

Skipping, chatting, pushing elevator buttons, saying his pump “Hurts but I am okay with it” which I translate to mean he can feel it on his skin. Logan is extremely sensitive to touch, so I know it’s going to bug him some.
As we head to the cafeteria, having decided we need to check the second gift shop too, but after food. We join a mish mash of people, kids, doctors, and trainers, all in a mad dash to get their salads, soups and chicken strips before having to return to work.
Up. Creeps. Panic.
My coat is too hot. Too long. My scarf is chocking me, I can’t balance the water on my tray. Where is Logan? I seriously need to get the hell out of here, stat.
We pay and sit through a tense lunch, where Jer hisses “What is WRONG with you??” under his breath, to which I artfully respond.. “WHATEVER,DUDE”
I’m not sure where I was going with that, but it felt mean at the time, and it sounded tough.
By now I had decided that since Jer was not having as bad of a reaction as me, he was probably Satan himself.
I saw horn marks.
I could feel the evil dripping off of him, as he confidently and deftly manipulated the insulin delivering device, and slipped in its carrying case and put it in his pocket, LIKE HE’D BEEN DOING IT HIS WHOLE LIFE!! .
Glowering doesn’t begin to cover the look on my face as I eat my salad and meatballs.
I was trying to emanate pure hate. Of what, I didn’t’ care. Maybe the yonder fish tank. I wanted to steam in my own blend of confusion and misguided blame, just for a while. Because really, Diabetes is nobody’s fault. You can’t get mad at it very well, I just don’t feel like it responds well enough. So if I can figure out a way to get mad at JER… well there’s a fight I can sink my teeth into. A handy focus for my newly acquired skills in the dark arts of hate that I am practicing while eating my salad.
Maybe I will become a witch, I muse, while eating edemame, and put some spell on him where he is like, the town fool. And I CRUSH HIM WITH SOME KIND OF.. I don’t know! REJECTION!! Then, I can make my horse talk! AND…. My fantasy petering out, I kind of notice that Jer is struggling too. Logan kicks up a fuss about his cookie, and we have to leave.

At City Peoples, I started to come around when I spotted some really cute xmas decorations. I grudgingly took a deep breath when I was staring at the glitter encrusted snowflake ornaments, and it came out in a relaxed, blissful sigh.
It was working.
Shopping is a wonderful tool for healing.
I purchased a mini tin of “Obama mints”.. There. Back on track.
Obama said we are going to be okay, and I am going to believe it. Jer holds out his arm to me in the parking lot, a gesture of love and support, and Logan pipes up with "I love you guys, and I do love my pump." My dreams of vodoo dolls in shapes of Jeremy fade, as I realize we are all just doing the best we can in each moment that is handed to us.
Mints in pocket, we head home through the snow to start a new chapter of our adventures in this land of Di-ba-leet-eez... the adventure of pumping insulin.

Pump Class

2008-11-19T15:53:00.000-08:00

What better way to spend a beautiful Autumn morning.. than at Children's Hospital in the "Whale" section, taking a class about how to use insulin pumps!
Ahh, the crisp air, the smell of flexible hospital tubing and fresh alcohol wipes--mmm!
We did get Pumpkin Spice Latte's just to cheer ourselves up, to bolster our confidence with three shots of pure, black, caffeinated espresso... it mostly worked.
I tried to pretend like it was a date. First the aforementioned decadent lattes, some hand holding, and then we had a break for lunch and went to delicious Thai food. I kept whispering "let's make out!" during the class, but Jer wouldn't. (It did make him smile, though-- my goal all along.)
We had pamphlets and booklets of all the major insulin pump manufacturers in the world spread all over our lunch table. Then, we had to return to the Hospital after lunch to meet with a Social Worker.

Why? You ask?
That is MY question!
I'm pretty sure it's because somewhere, someone wrote down that I was kind of on "problem mom" watch, (what with the needle phobia, heavy duty scowling, and tendency to shove medical supplies back across tables at nurses who helpfully would shove them right back.)
Don't they know I am so over my needle phobia? Geez.

Here's how the conversation went, when I scheduled our pump class with the registration nurse.
Scheduling Person: "Okay, you're all set up for the pump class, and.. um. oh what does it say here.. OH!" ( She reads something on her computer screen, then pipes up, brightly) "You can .. um.. also.. combine this visit with your Social Work visit, which I can schedule right after your class.. for convenience!"

Me: "No thanks. I'd rather rip out my own lungs."
(No, really I said) "I am seeing a counselor privately, and I feel all my needs are being met there, so if we don't have to have that appointment, I'd rather skip it," I say, hoping my obvious breezy attitude and cheery demeanor will convince her I am over my original needle issues/crankiness toward medical staff.

S.P.: "Oh.. well. It says here you um, have to come to this appointment if they are going to approve Logan for a pump..." She is hedging, and I can feel it.

Me: (sighing) "Ok, whatever we need to do, to qualify for the pump.. is this standard procedure?" I ask, somewhat annoyed at her crankiness -vector profiling.

S.P.: "Well, for some patients, we just like to.. follow up on .. social.. adjustment." She trails off, and I realize it's probably not an avoidable thing at this point.
So I concede, schedule the visit, and huffily tell Jer that they want us to meet with their Social Worker.
We both cast our minds back to how bad it was in the hospital, with the whole needle phobia and denial, and um. anger, resentment, rejection.. OK fine. It makes sense, I guess it gives me a chance to dazzle them with my progress from immobilized fear monger to 2nd Tier Diabetes Wrangler status! Hah! Not so bad, after all. I love a second chance to make a first impression...

The Pump class was great!

But I decided I hated the nurse who was teaching it, pretty much right away.
I didn't like the look of her.
I didn't like her stance.
I distrusted her smile.
I felt 'hustled' by her insistence on us showing her proof that we were registered in the class. (Who does she think I am?? That girl from Fight Club who attends medical support groups for fun?)
I was sure she was an alien, or a terrorist, or just a .. bad person.

Jer reminded me that I don't have to hate medical people, just because they hold pokey things, and smile when they say "blood glucose".

I did end up having to re-evaluate my opinion of her within 15 minutes, because she was so kind, knowledgeable, and supportive of all of our wacky questions, concerns, fears, and hopes with the pump.
FINE.
She was cool, I guess.
There was a super cute teenage boy getting his first pump and he was SO excited! Jer chatted with him for a while, it was inspiring to see him there, a football player, not slowing down at all. And lots of parents of young kids like Logan, with tons of questions.
We learned a lot, and at the end we got to handle and fiddle with all the different kinds of pumps that the hospital recommends.. there are only 4 models they recommend, but still there are so many minute differences, it boggles the mind.

Do we want a wireless one? One with tubing? Remote or no remote? Food database important or not?

We are still favoring the Omnipod, and the Animas Ping.

Here is a pic of the boy in question.. mesmerizing me into giving him a cookie...

We got another 'demo model' of the omnipod, which Logan is wearing right now.. to see if he can handle it. If he can tolerate that much skin contact full time (it's about the size of a small flip phone, but lighter) attached to him, then we will go with that one. But for a boy who MUST have all of his tags cut out of clothing before wearing them.. I have my doubts.

The other pump has tubing, but the only thing that is attached to your body is a small "insertion set" the size of a nickle..or small quarter.

The new news is, we can decide on a pump, and then we do "saline trial" where he wears it for a week or so, and we see if he is going to respond well, and if we like it. If we don't, we can do a different saline trial with a different pump. (everything works, it's just loaded with saline instead of insulin so you don't screw up).

AND when we do decide finally on one pump, we get at least two more classes in how to operate it, attach it, and use the remote.

I know, it's a lot of information, another big change, but I am excited about it for so many reasons.. mainly.. his blood sugar will be easier to manage, and we only HAVE TO POKE HIM ONCE EVERY THREE DAYS INSTEAD OF FIVE TIMES PER DAY! Freedom!

I am really impressed with how much Logan (and Gray) already understand about diabetes, and the pump's benefits and drawbacks. It just gives me new hope in technology, and hopefully we will keep on keeping up with latest changes and improvements for Logie.

Our Diabetes day walk was fun, and we had several friends come and join us~ Sherri, Heather, my Dad, Judith, Flora and Elinor. I made t-shirts, passed out completion certificates at the end, and we all trundled around the block, to 'raise awareness' of Diabetes. I fear the only awareness we raised, was that my kids think it's fine to walk along right down the middle of the road. After an 'awareness raising' speech on my part, the kids resorted to running ahead, and pretending to be store mannequins/robots, that we had to wonder over, and try and activate every 15 steps, just to get around the block.

I got one pic, though! Check out THESE scary robots!

My Birthday party was a glowing success, with guitar playing, laughing, eating, cake and cupcakes, and a toast made by my darling hubby- Jer. Seriously, I have not had so much fun in a long time! We danced, played Rock Band on the XBox, drank yummy drinks, and made mischief. My favorite kind of party!

Here I am, with some of the cupcakes of wonder..

And here is Gray, mugging at a restaurant last weekend... aww. He is hugging a cookie the size of his brain.

So I will be updating in a few days, to give reports on Logan's tolerance of the Omnipod.. and our decision on .. which pump to get..! (Dum Dum DUMMMMMMMMMM.. dramatic music fades in)

Peace out for now!

Happy Anniversary?

2008-10-30T18:28:00.000-07:00

Here we are on the eve of our three month Diabetes anniversary.. it was July 31st that I took Logan to the Pediatrician to see if he had a bladder infection.. and ended up with our diagnosis of the D. It feels like a year ago, at least.
The good news is, I am gradually feeling better, and I am not letting daily swings in Logan's mood affect mine. I think I have grown an extra layer of skin, much tougher that the one that I had before! Maybe it's more like armor, but it's working for me. Even if Logan screams, cries, begs, or hides.. I don't dissolve into tears anymore- I just set my mind on the thought "I love you, and so I WILL be giving you this shot, happily or not." This gets me through it. And he is fine, immediately afterwards, so it's very gratifying not to have to go up and down the roller coaster of emotions so many times per day. It's well documented what a softy I am, some may even call me a chicken-weenie. BUT! No more.. I have found a shard of my personality that is tough as nails, faster than lightning, it's a bird, it's a .. plane.. it's........... SUPER MOMMY!!
I get the job done.
I was reading in my affirmation/meditation book this morning about "acceptance"... it's such a big concept. It's hard to get there when the thing that you have to accept is something that breaks your heart. The way I look at it is, I don't have to love diabetes, but I have to accept it as my new reality. The more I try to pretend that it will go away, be cured tomorrow, or not affect us, the longer this process takes. Here is my current inventory of my reality, as of 8am.

I have three amazing, strong, intelligent, healthy boys- one of whom has Type 1 Diabetes.

There is a 50% chance that another of my sons, Gray, will be diagnosed with Type 1 before he is an adult.

I have somehow lucked into finding and keeping a marriage that feeds my very soul.

My partner is someone I not only admire, respect, and like, but I am silly in love with him.

I have a beautiful, cozy home with a great yard that keeps me up to my ears in fun hobbies and ideas as we renovate, upgrade, and change it.

I have a family (my parents, parents in law, brother, Grandma, cousins) that has shown me in no uncertain terms that I am loved, cherished, thought about, appreciated, and cared for.

I have somehow managed to gather to myself the most unique and beautiful group of friends- funny, creative, strong, loving, real, and generous souls- all of them. It is my connection with them that I have become profoundly grateful for.

On that note, a lesson I have been learning, is how to recieve.

I am a GIVER. I like to HELP OTHERS. I like to make people happy, and feel special and loved, and until recently, I have not been too adept at letting others do the same for me.. but my friends are a force to be reckoned with in terms of their love.

And the best part for me, is I am learning not to discount the care and love put into their effors just because it is aimed at ME. Usually, I find a way to say.. "Well, they dropped off those flowers because they didn't want them to go to waste" or "Oh, maybe they were weeding! That was thoughtful!"

But not until verrrrry recently, have I been able to SEE and then FEEL the love, that is coming straight for ME.

Now I see the flowers, but the amazing part is, I feel "Wow, they sure love me, and thought of me today. I bet they just want to let me know I am cared for, and that I am on thier minds."

(Yes, our neighbors and my "2nd Parents" Sharon and Keith Lindaas dropped off three huge bunches of flowers for us when we were not home, a few days ago!)

I guess what I am trying to say is- this change is a good one, and I am grateful for the opportunity to learn it, even if it is taking the D to do it.

I have gotten calls at the right time, funny emails that lift my mood, invitations to hang out or go out, thoughtful emails, and all of it together- has created such a difference in how I am experiencing this time in my life. I know, I get all mushy and long winded when it comes to my friends and family, but geez! Maybe it's a "40" thing, but I see around me a family of people that are drawn together by our joy and our pain- and I am downright grateful for each one of you.(snif, snif!) Ahem! So, now new news on the Loganator forefront...

I have signed us up for our first step (a class at Children's) on how to qualify for an insulin pump for Logan! In a nutshell, it boils down to not having to give him shots anymore, and more freedom with eating, going out, etc. I actually sent away for a "free trial" of the newest version of the pump, the Omni-pod, which I am now wearing a non working version of on my own arm, to see how it feels.

Omnipod is the only "tubing free" pump out there.. it is operated by a remote "PDM" (personal diabetes manager) so all I have to do is stand near Logan, and push some buttons.. !

The PDM also doubles as a BGM (Blood Glucose Monitor) so we put a strip in it, get a dot of blood, and his blood sugar is recorded in the device. We tell the device how many carbs he is about to eat, and it gives suggestions on how much insulin to give.

Since it is a bit hard to explain, those of you who are curious, can check it out here:

http://www.myomnipod.com/products/section/189/

There are little videos that show how it works, how to put it on, take it off, etc. It's pretty amazing!

I am doing lots of research (it's kind of like Immersion therapy..) into different pump systems, but I do have two favorites, the Omnipod, and the Ping. The Ping is basically the most up to date pump that still requires tubing between where it goes into your skin, and where the insulin is stored in the device. It also uses a remote, but you can decide to deliver the insulin by remote (up to 10 feet away!) OR by pushing buttons on the device, which clips onto your belt.

Here is the site for the Ping: http://www.animascorp.com/

I have no idea if we can afford these, or if we will qualify, or how any of it works, but you can bet I will put my newfound toughness into fighting for what I WANT FOR LOGAN!

I've heard there is a lot of fighting with your insurance company to prove you need it, because a pump runs about $6k or so.. and sometimes they don't approve them, or certain models, or ?

I will fight that battle as it comes.

Halloween was a blast- we had a great day, first breakfast with my parents (and their cousins) and then off to the Reptile Zoo with Sherri and some of her friends. The kids held snakes!! Then after a long and wonderful playdate at Sherri's we came back home to Trick or Treat!

Logan looks a bit impatient.. our camera did not want to work, so he was standing there for over 3 minutes.. waiting for it.. ha ha. Gray has no problem mugging for long periods of time, however. Logan chose to be a Wizard.. and Gray was a Bird!

We finished off the night with candy (and the accompanying insulin) and lots of happy silliness.

These are the pumpkins we all painted last year, so cute in the doorway!

So Happy Anniversary to Logan and the D, and Happy Halloween to all!

Feeling much better

2008-10-23T10:38:00.000-07:00

Well, after sprinkling Haley's ashes, it really did open a door on my heart that was shut tight, and out came a lot of sadness, grief, and even despair.
I spent one week feeling down, and another almost immobilized by my feelings. I spent three whole days on the couch, just feeling like crap, not talking, not smiling, not doing my usual "I'm a strong person" routine.
I am thinking now that is maybe one reason why I broke my toe, and got sick.. just to slow me down enough to think, and feel.
So it was pretty sad. I cried a lot, fumed, gave up, let go, didn't shower one day, just really didn't feel like being a part of anything. I missed Haley, and I got pretty real with myself about how sad I am about Logan's Diabetes.

I guess I really needed that time.
I got a call, in the thick of it, from a woman named Susie, who also has twins, and one older son who has the D. (He is 28 now, but it kind of shaped her life, and became a diabetic nurse and I think a counselor.) Anyway, she keeps calling me out of the blue, and it is always at the right time. I asked her about the grief process, and she said, "You HAVE to feel it, but don't go too far with it."
She told me (what I have been thinking, as well) that it is a fine line between feeling your feelings, and DWELLING on negatives, etc. She put it this way:
"Two people get in the same car wreck and are confined to wheelchairs. One is miserable, and ends up killing himself. One goes on to do things, discover what he CAN do, talk to schools, etc. You didn't ASK for this "wheelchair" of diabetes, but you have it. What are you going to do with it?" It struck me at the right time, in the right way, for me to start my engines running again.
You wanna hand me a wheelchair, life? Fine!
Wha- cha! (karate move!)
You bet I can handle it! (whoosh-cha! Another karate move!)
And Action Jenny is activated again. I'm in for another round.

After my "mantle of sadness" time- I feel so much better and much more "free".
I think that is one thing I especially struggle with about the D.. it robbed us of some of our precious freedom.
Jer and I are admittedly a bit hippie, a bit hedonistic, pleasure seeking, and mellow. So when the twins were born, we went through a HUGE adjustment.. so much responsibility, so much work, care, worry, nursing, diapers, night feedings, illnesses, etc. It truly tested us. And coming out the other side of 5 years of little kid-dom.. we had regained some of our freedoms, sleeping though the night, taking breaks from the family without feeling guilty (much easier with little kids than with babies), leaving the house at the drop of a hat to go exploring, (not having to pack diaper bags, snacks, wipes, toys etc) and we felt like we had really come to a good place.

So when the D hit, it was kind of like going back in time, to having a newborn. The same panic of a new parent that we had outgrown, is back.
Now instead of worrying that "maybe the babies moved in their crib and one is accidentally suffocating the other I better go check" we worry that our son is having a low in the night.

Here's the scene:
I am sleeping, and I wake up for whatever reason, in the dark.
Usually, I would just smile and snuggle back to sleep.
NOW...
I lay there.
I wonder if something woke me up... did something? A noise?
Hm. No. All is quiet.
Logan pops into my head. Hm. I wonder if he is okay? I mentally review all his last numbers before going to bed, and his last insulin dosages.
Did he eat all those tortillas? Or just most of them? Maybe we gave him too much insulin!
I wonder if I woke up because some supernatural force is alerting me to a crisis happening in my boy's body in the room next to mine!
Adrenaline- dumps into my stomach.
I should check on Logan! What kind of a mother just lays there after receiving the divine gift of being woken up to realize that an uneaten portion of tortilla has created a life threatening crisis??
NOT ME.
I whip back the covers and stumble into the twins room.
In the half light, I see Logan lying still.
Too still.
I also see is not covered up.
I move forward and he wakes.
"Hi Mommy!! What are you doing in here?" he asks with perfect clarity.
(Instant relief floods through me.. he is conscious, he is making sense, he is fine.)
"Oh, I just came to cover you up, and make sure you are cozy." I say, happy that his blanket is indeed around his feet. I don't want to scare him, for god's sake.
"Ok." He says.
I cover him all up, smoothing his hair back from his face. He is SO beautiful.
"Mommy, I love you so much," he says sleepily, "I even love it when you give me my HSP."
Aw geez.
"I love you, SO MUCH Logan, " I whisper, glad for another chance to say it that day.

I go back to bed, satisfied, happy, but nice and awake.

So this happens about once a week, and it reminds me all to much of the newborn "night worry" that most new parents get.
A newborn can't push a blanket away from their face, and a diabetic child in a low in the night can't ask for help.
It brings you back to that sense of the fragility of life, of the human body.

So even though things will never be the same, and we will in a sense always have a "newborn" to care for, there are a lot of positives, too. I am grappling with a lifetime of this, and trying to find positives, when it's easy to see all the negatives.
I realize some of it is a choice of perspective, and some of it will just be what it is.

I had the *most excellent* 40th birthday yesterday, I felt so loved, so happy, positive, and blessed. We went to the Japanese Gardens with L and G, and the sun was amazing. I had several moments to just relax on a bench, soaking up the sun, and you couldn't wipe the smile from my face. Jer and Sherri are planning a party in November, but this was "my day" with Jer and the boys.. Max had to work, but gave me cuddles before he went.
At the gardens, Gray saw an edgy looking photographer taking pictures of the pond, and he was captivated by the guy's mohawk.
"Is he a ROCK STAR?" "How did he get his hair like that?" "I think he IS a rock star, Mommy!" this chatter went on for a while, and I tried to shush him a little, so as not to disturb the guy, or let on that our kids hadn't really been around many spiky mohawks.
Gray pleaded with me to go with him, so he could ask the man about his hair.
Well, shoot, I thought. Why not?
"Excuse me," I smiled, "but my son is curious about whether or not you are a rock star.. are you?" I asked.
Super- cute- punkish- but- well- put- together- guy pulls his ear buds out of his ears..so I have to repeat my great question.
"No, I'm not," he grins, "but I do like spiky hair."
So Gray asked a lot of questions about how to get his hair like that, (hair glue) and we all had a chat, and a smile, and went on.
I don't know why, but it made me really proud of Gray.
Gray is not afraid of people who look different, or seem different. Plus, he seems to be drawn to cool and edgy people, which I like.

If he asks for a mohawk, I will have a hard time saying "no."

World Diabetes Day, November 14

2008-10-21T13:48:00.000-07:00

Wear blue, light a candle, donate for a cure, or just give Logan or your other diabetic loved one a shout out!

I plan on lighting up our house in blue lights, as many worldwide are trying to get major monuments all over the world lit up in blue. Seattle doesn't have anything yet, but we will keep trying!

If you'd like to participate in world diabetes day, or just read some more about it, it's pretty inspiring.
Website: http://www.worlddiabetesday.org/
You can download a virtual candle for your website, that will raise awareness, plus it's just kind of fun to light.

I found out about this from my most favorite new website/resource: Tu Diabetes.

http://tudiabetes.com/

It's kind of like a myspace on insulin.

It's a "community for people touched by diabetes". Real people, real stories, real blogs, real advice, real feelings, I am so happy to have found it!

Logan's Clinic visit

2008-10-19T11:13:00.000-07:00

Thursday was our clinic visit, the one we have every three months. And... it went REALLY well! Our Endocrinologist, Dr. Sirinth Sanda, is the most amazing doctor I have ever met, and a very good match for us as a family. He is extremely intelligent, involved in every type of research, and on top of it, he is relaxed, kind, and very encouraging.

We have to do a blood test called a "A1C" test, whihc measures the sugars in your blood over the last three months. Logan's number was 8.1, which is perfect for his age. As he gets older, we will want the number to go down to 7, as studies show that is the range that experiences the least amount of complications. But for now, it's perfect. Dr. Sanda asked Logan how he thought it was going, to which Logan replied "GWEAT!". Dr. Sanda said (after reviewing his log) "You know what? I agree! I think you are all doing great, and I am very proud of you and happy for you!"

Awww. At first my kids thought his name was Dr. Santa, as in Claus.. funny little monkeys.

So this was our first visit at the Bellevue Children's and it was a big sucess. No panic attacks, not repercussions.. wow.

And.. drumroll please....

TODAY LOGAN DID HIS BLOOD CHECK ALL BY HIMSELF FOR THE VERY FIRST TIME!!

He cocked the "poker", he inserted a strip into his meter, he got a drop, and he put it on the strip and told me the number! Elation! Joy! Hope! Pride!

We all think the more Logan can do himself, the better. We won't expect him to do his own injections until he is 9 or 10, but he may be on an insulin pump by then.

The new insulin pumps are like a pod that attaches directly to your skin, it has an insulin cartridge in it, and the whole thing is operated by a wireless remote. Dr. Sanda said that the companies are in talks with cell phone companies, to combine technology, so a diabetic could just marry the pump technology with thier phone, and only carry one device, a "smart phone".

WOW!

We also talked about getting pump for Logan, and he said in three months (his next visit) we could try it. In the meantime, Jer and I have to research which kind of pump we want, what brand, etc. They all have different features.

I read a couple new meditations in my trusty books, and they were amazingly on target.

the first one was all about getting though life's stuggles, at your own pace. The second one was about surrender. This one is hard, but I can see it as the next step... Not surrendering like giving up, but as in recognizing that we can't change what IS.. we can only be in charge of how we react and respond to what IS.

We took the boys to the "Haunted Trails" at Bastyr, last night- it was so fun! Pretty low key, and it just felt so good to do something that feels like a fun time.

In the ebb and flow of feelings and energy, it seems like we are in the 'flow" right now, which feels so damn good! We are all getting well, Logan is back to cooperating and even taking control, and I am trying to shake off my mantle of sadness that I have been lugging around for the last two weeks.

Diabetes IS sad.

But it also presents a challenge and a choice about how we are going to deal with this, and still have the life we want. We do need time to grieve our losses, and when we do, we create space in our hearts to start embracing the little joys again.

It's a fine line, and a tricky balancing act that we have to navigate to get through this.

The Question

2008-10-13T19:58:00.000-07:00

Today Logan took a shower with me, they both do this from time to time, they LOVE the warm running water. As we got out, something came up about how even though Diabetes is hard, hard hard.. we are so glad for knowing how to take care of it.
Logan got quiet.
He looked up at me, all wrapped in a soft towel, pink cheeks, bright eyes.

"How many days until they find a cure, Mommy?" he asked me.

My heart stopped.

I didn't know exactly what to say.
"I don't know Logan." I said, trying not to cry, "I don't know how many days."

"BUT," I told him, "they will find it." I filled my voice with the confidence that I wish I had to my marrow.
I have to believe it, and he does too.

I just wanted to hold him forever in that soft yellow towel.

The Diabetes Kit and Caboodle

2008-10-14T10:27:00.000-07:00

So, I have been meaning to share pics of what Logan's supplies look like, and what they are for. Several of you have asked, and also, I wonder how our set up will change as things go along, as technology advances, and as we (hopefully) can get Logan on an insulin pump later on.
Here is the "kit" as we call it. The Log book is showing, this is where we record all of his blood sugars 5 times per day, record also all grams of carbs for each meal, and how much insulin we gave at each time of day.

Here is what is contained in the bag:

And here it is, all spread out:

After a lot of trial and error, these are just the bare minimum "must haves" everywhere we go. First, the cute monster bag I found at Borders, with Barbara, a few weeks after diagnosis.. it holds syringes, the short acting insulin, a safe clip needle clipper (biohazard!) a magnifying sleeve so my eyes can see the tiny markings on the tiny syringes, and alcohol wipes for the top of the insulin bottle.

The next thing is the glucometer, which tests and records his blood sugar levels. This has test strips, which are inserted into the pod device, the "checker" (thing that pokes you), and some calibration solution. After you insert a strip, you have to get a drop of blood to soak up the end of the strip within one minute, or you have to start over! Not fun. I have a few tricks I use, so we never have to do it twice. One: I only insert the strip halfway (not activating it yet) and THEN get my drop of blood. Once I have a drop, I fully insert it. Two: if I need more blood, I can press on his arm with the poking device cap, and it will well up a little more. You can see the extra needles in the mesh side bag, for replacing in the poker. The round container holds 50 strips. The glucose tablets are on hand in case we have a very low number.

Next, we have the carb book- we take this everywhere! It has name brands of a zillion different foods, restaurants, and basic foods, so we can TRY to accurately count his carbs. Knowing exactly how many carbs he is eating is critical, since we have different "carb to insulin" ratios for each meal of the day. For example, right now he is following a 1unit to 15 grams of carbs for Breakfast, 1 unit (of insulin) to 22 grams of carbs at lunch, and 1 unit to 35 grams of carbs for dinner. There is a mini caluclator there, too, in case I forget how to add, or want to check my math. The frosting gel is what most people with diabetes carry for an emergency, if they are losing consciousness, you can squirt in between the cheek and gum, and rub it in.

The paper with the colored squares is a color chart, with disposable test strips for his urine. When your body doesn't have enough blood sugar (or too much) you will burn fat, and your body slowly becomes dangerously acidic. These strips test for ketones in his urine. If we get two blood checks in a row over 250, we have to check for ketones. If he gets sick, we check for ketones, and follow a very regimented protocol for bringing him back to balance, otherwise-it's a hospital stay for a few days. We've checked for ketones twice so far, both times, he's been negative for them, thank goodness!

The id issue: Logan has to wear a bracelet or necklace when he is not with me, or even when he is in case of car accident, etc. I have tried all kinds, he hates them all. here is my latest idea, a necklace.

And finally, here is the lady, the bane of my existence, who greets me every time I open a new box of syringes. Her smiling face makes me want to kill small animals. (fine, not really.) But she grates on me. Just smile it up, chica! BD insulin syringes are the BEST, right? Grrrrrrrrr..

So now you know a little more aobut our stuff, our "gear, tackle and trim" as Walt Whitman would say.

Today's HSP prize was silly string, and we have had a HOOT with it, I forgot how much fun in can be! The boys are enraptured with Lego Batman right now, which is why I have been able to post more pictures.. but I have to go break thier concentration now, and try and get out of the house!

Peace to all!

Down, but not out!

2008-10-13T14:52:00.000-07:00

So a few updates:
Gray did NOT want to participate in the Trial Net study (you have to be a "willing" participant, and he just was too afraid to stick out his arm!). So we will try again another time. Jer was able to have his blood draw, so I guess we will just keep trying with Gray. It sucks, however, on the paranoid parent forefront.. I keep tensing up when Gray says his tummy hurts, or is thirsty, or pees one increment more than usual.
I am trying to remind myself that "what will be, will be" and I am not in control of what happens in my kids pancreas. Oh, that I could be!
Logan experienced a semi major setback in terms of cooperation with the insulin injections, and we actually had to back allllll the way up to going to a two person insulin shot, one parent holds him down, one parent pokes the leg. I'm sure you can guess how much this sucks. It makes me look into the dark abyss of our time at the hospital, the shock, fear, confusion, and rejection of it all. So I wound up my week being fairly depressed. Plus, I was sick and tired, and my toe hurt, basically, I was a mess.
My mom came over on Thursday, saw me sobbing in the kitchen between coughing attacks, saw the kids being rude and non-compliant, and said "That's it! You are not going to treat MY daughter like this!" and took the kids for TWO DAYS. For us, this is like winning the lottery or something. We needed a break so badly, and thank god for Linda Brender, we got one. I was so close to the edge. Logan wouldn't let me give him shots, Gray kept interrupting with four thousand tiny problems, the house was piling up, I could barely breathe, I wasn't sleeping at night, and I just lost it.
I am finally feeling better, but coming to the realization that I have not really "dealt" with how I really feel about Logan's condition on anything but a surface level.
Good thing I have a counselor! And good friends. Sherri insisted I come over on Friday instead of moping in my house, and we went shopping for THREE HOURS!! Uninterrupted! Unhassled! Un-mommy-can-i haveit- I have to go potty-ed! Ahhhh. The healing powers of shopping.
We went to a thrift store and I bought up a bunch of sweet/funny/cool little things for the kids to have as prizes, when the HSP goes well. I can't say enough about how much I love Sherri. She made me dance in the bedding isle, pore over glassware, let me help her decorate her kids playroom, and just plain spent time with me. She always makes me laugh, and never lets me sink down too low- somehow she does it without negating my feelings, it's hard to explain her certain kind of wonderfulness. She also gave me an early birthday present.. two beautiful wrought iron pieces for our garden.. I love them!!
Jer and I had time to talk (and talk, and talk) about how we feel stuck, what to do, how we need to be role models of happiness, but how can we when we are depressed? So we are both going to do counseling, for a while, and try and get ourselves back. I know it seems strange, but I read a few places that with conditions like Diabetes, sometimes parents almost go though a post traumatic stress disorder type of reaction... delayed depression after the crisis calms down. It's normal, I hate it, I know I have to "feel it to heal it" and I am trying.
One thing I feel, is that I hate Diabetes. Even the word makes me want to cry.
I hate opening our new box of syringes, and having this crazy photograph of a lady smiling her face off about BD syringes.. Lady! They poke you with these, you know!! Grr.
I just really got into a bad place, and I best not go back, so I will not make an I hate list.
I will make another list.

Things that are good:
My friends
My husband, the wonderful soul that he is. I could NOT do this without him.
Max, he is so supportive.
MY PARENTS.. thank you so much for doing what it took when I couldn't.
Halloween is coming! (Logan can eat candy, as long he does a shot afterwards, so no biggie)
Logan has his clinic appointment this week, with his "team" (Endocrinologist, Dietitian, Diabetes nurse) so we can ask questions about the pump and the pen. (more on those later)

And, my favorite new thing ever. There are dogs, called "Diabetic Alert Dogs" (my friend Heather called me yesterday, and her husband told me about them)
So these dogs are specially trained to smell when a person is hypoglycemic (dangerously low blood sugar) and "alert" the diabetic and or/the caregiver.
I am so excited about this!! I think we would wait until Logan is 12 or so, but can you imagine how empowered he would feel to have such a support? Check out this website, and watch the little video about Diabetic Alert Dogs..
http://www.dogs4diabetics.com/aboutus/aboutus.html
there are several different trainers in the US, and the wait list is long, and the price is high for many of them. (they range from $150- $12,000!) but it gave me hope, watching that video, and thinking of a new thing that we could give Logan, maybe right before he turns into a teenager, to get him through that rough crossing.

So overall, Jer and I have realized we need to model what we want for our kids, and it boils down to "Happiness and Responsibility". I also know we have to deal with our feelings, or they will never go away. It's a hard balancing act. I found this passage in one of my daily meditation books, and it is helping me put a better frame on this healing process:

"We should learn not to grow impatient with the slow healing process of time.
We should discipline ourselves to recognize that there are many steps to be taken along the highway leading from sorrow to renewed serenity...
We should anticipate these stages in our emotional convalescence:
unbearable pain, poignant grief, empty days, resistance to consolation, disinterestedness in life, gradually giving way.. to the new weaving of a pattern of action and the acceptance of the irresistible challenge of life." - Joshua Loth Leiberman

Goodbye to our Dog..

2008-10-12T22:42:00.000-07:00

Saturday, after attending an Insulin Adjustment Class at Children's Hospital.. Jeremy and I gathered up our kids and set out for a day at Whidbey Island, on our "Secret Beach" where we could play a bit, and then scatter the ashes of our dog, Haley. Haley died in July, not to be outdone by Jer's Dad dying, my hospitalization/hand surgery and Logan's diagnosis.. all in one month. It was an overwhelming time, and we are realizing that we are a bit "stuck" in our healing/acceptance process. Too many things happened too fast for us to process any one of them fully or separately, they seem interwoven in our hearts. We decided to try and work on some healing, peeling back the layers and give each event it's own time of focus. We are starting with letting go of Haley's ashes, honoring her memory and place in our family, and finally saying goodbye to her. Here are some pictures of our day:

Ferry ride over.. gorgeous! The kids and I hung out outside, and loved watching the seagulls.

This is the trail to Secret Beach.. Jer and I discovered it on a getaway four years ago, and we go back every chance we get. We have walked this trail many times, usually in a joyful state, so it felt like a good place for Haley to be free. She loved hikes, and always led the way.

At the beach, Logan gets a blood sugar check INSIDE the super neato driftwood fort we found! Number recorded, the boys set off to do their favorite activity.. climb WAY up the cliffs, and slide down as fast as they can.

Mommy usually tries not to look, as every slide seems like it might just end with spinal cord injury to ME.

Daddy just laughs- and they keep doing this until exhausted. Max hikes up the beach, and I marvel at how big he is.

We got Haley when Max was four, and just look at him now. It was hard to lose such a loyal friend.

Let the climbing and sliding begin! PLUS, I got a pic of Jer's booty.

A shot from the bottom of the cliff, upwards

Jellyfish.. (not alive) make for interesting and gross brother times!

Haley's ashes sitting on top of my favorite rock at this beach. While the boys roughouse, I think about my girl. She was a true companion. I always wish I could bring this rock home, but it is huge!

The whole family took turns sprinkling her ashes in the water and on the sand.

Back home, we all found Stella looking uber-cute. and appreciated her even MORE.. Look at the sweet moment I caught between Stella and Graybug.

I miss Haley and her silly ways so much. The way she always sneezed after a good play time, the way she would sigh at me, and give me her best eyes, when wanting a treat.. so many things. It's hard to let go. We all decided to keep a bit of her ashes at home, where she was truly the happiest.
WE LOVE YOU HALEY GIRL! You are missed.

Trial Net tries my soul.

2008-10-08T10:17:00.000-07:00

Jer and Gray have signed up for participation in a study called Trial Net.. and they are off this morning to Children's Hospital for their respective blood draws. Gray cried his soul out last night, begging me to change the appointment, "not to poke me with a NEEDLE!!" and of course this morning was full of the same.
Gray asked Logan to come along as moral support, so he did, however, I am home bound with the first good virus of the season.
Trial Net is a study where they are drawing blood from family members of kids with Type 1 Diabetes, to try and isolate the "markers" in the blood which combine to dictate whether you will or will not GET type 1, and also try and isolate what they can so that there can be testing done in newborns, so that if they have the markers, something can be done to prevent/postpone the onset of Type 1 diabetes.
Bleh.
It's all fairly yukky. I feel guilty for being home while I know he is having to deal with the fear and emotions of probably both kids.
Here is the website for Trial Net http://www.diabetestrialnet.org/about/mission.htm
if you want to read about it. If you have anyone in your family with Type 1, I encourage you to go and let them take a sample of your blood, they need 250,000 participants to make the study goals. I am having my blood drawn on Logan's next clinic visit, which is next week.

I hope, I hope, that they can find a way to predict in babies who will develop this condition, and I hope, I hope they can find a way to stop it.
Logan has been resisting his insulin shots recently, and it makes everything so much harder.. poor kid, he is already sick of it. Me too. Being sick certainly doesn't help my viewpoint on life, either- I am feeling crummy and the world looks fairly glum to me right now.
The good news (scary news?) is that in a few weeks or months, the trial net people will tell us how many markers Gray has in his blood, ie, what are the chances that he will develop the dreaded Dibaleeteez..
I know several parents who have opted "not to know" if their kids have the markers, and some who have found out, and are enrolled in experimental trials to delay onset for their kids. It's all frightening and gut churningly worrisome to me.
I just flat out pray that Gray does not have to deal with this. Logan told me yesterday "Mom, I really hate the Diabetes." and I said "I know, we all do, we just have to do the best we can, and be grateful we can manage it." I don't really have a better answer for him than that.

I started to read a book called "Cheating Destiny" written by a man with Type 1, but the first chapter goes on to describe how Diabetes was manged in decades past- and it was so horrifying, I had to put the book away. Starving children, boiling glass syringes, best case scenario being a few more years of life, while wasting away.. it just made me completely overwhelmed. There was a part of it that made me downright grateful for my tiny disposable needles, and the awesome power of checking his blood sugars at home, and managing his diabetes in a good way- but I can't stop thinking of all those parents who did not have these resources.
Insulin was only discovered/invented in 1920. Frederick Banting, a Canadian surgeon - (see? Canada is the BEST!!) and his co-horts isolated the cells that produce insulin and by 1922 they had a supply and started using it to treat diabetes. Before this time, no diabetic had a life expectancy of beyond a few years of diagnosis. Unimaginable to me.

Insulin, while it is precious, is not a cure.

You can probably bet Jer and I will be involved in any efforts to FIND a cure, that we are allowed to participate in. JDRF (Juvenile Diabetes Research Foundation) is the only organization with a CURE being it's main goal, I get newsletters and updates from them monthly.
If you want to check out the site, it is amazing-
http://www.jdrf.org/index.cfm?page_id=100673

Some exciting news recently was. they have been able to impregnate in LETTUCE cells, some of the beta cells that produce insulin, setting up an artificial pancreas in the lining of the intestine.. and the immune system is fooled because the insulin is not coming from the pancreas!
Amazing! Heartening! And perhaps a lifetime away from being useful to Logan, but Logan is not the only kid on my mind.

My heart goes out to so many parents of kids with disease, disorder, or calamity- this is certainly the hardest test of my personality to date.

Birthday Bash and A Smashed Toe!

2008-10-06T19:16:00.000-07:00

The boys' birthday party was so much fun! Please observe the cake of wonder.. complete with rainbow, Yoda, R2, and Luke, sittin' on a cloud... (for die hard fans, we DID bury his lightsaber in a frosting cloud a la the Hoth/Wampa scene..) not sure if you can see that here..

Despite Logan being returned home early from Honey (Grandma Linda) 's house for crummy attitude, the day was a glowing sucess. Logan attended the party in his pajamas, being the "cozy monster" that he is.. I just couldn't say "no" to that. So he ran around in his batman jammies and Gray was all dressed up, OH WELL!

I was once again, awestruck by the generosity and fun of our friend-group.. people came wearing Princess Leia braids, people brought amazing toys and gifts ranging from Lighsabers to Geodes to books to every nuance of the Star Wars universe, replicated in plastic for our enjoyment! And enjoy them we do.

The kids seemed genuinly gobsmacked by how many things they got, and I was happily surprised at how much they LOVED each item.. it was pretty cute. Jeremy headed up a Star Wars game, that I never totally understood, but the kids seemed to love it.

Thank you one and all for coming and sharing the day with us!

Five short years ago, I'd sit for hours breastfeeding two babies and thinking, "I wonder what they will be like when they are five" and "Shit, they missed the cutoff for kindergarten.. oh well" and lots of cute stuff like that. Now I think "Hm. I wonder what they will be like when they are 10.." and "I am going to make them have a LOT more chores than Max had" and many other wise thoughts.

Gray, as Vader:

Logan, as Boba Fett

The moment:

So the next day, in a flurry of helpfulness.. getting down boxes of papers to help deal with closing down Jer's Dad's accounts- a box got out of my grip, and brought a computer down with it in my garage. ON my big toe. Barefoot. So.

My toe is broken. This is not helpful. This is not funny or cute.

I have never broken a bone before, and almost made it to FORTY without doing so... but not quite. Actually, it's pretty fine now, after a week, so I'm sure it will heal up fast. The biggest problem with it, is I have been confined to the house for a week, on percoset, with a laptop, creating trouble.

Here is a short list of my terrific ideas that I came up with last week, while "resting my foot":

Let's get rid of all our couches and get new ones that I find on craigslist.
Let me email Jer three hundered craigslist links PER DAY while he is at work.

I know! Let's be a dog foster home!! I will fill out this online application without consulting even one other family member about this! Man, I am having the BEST ideas!

I think I need a new mantle/desk/shelf/organizer.. I shall not rest until I find one on craigslist or freecycle.

I am going to lock the cat inside so she can keep me company

Let's only buy things from craigslist that require a long drive into a scary part of north Marysville, where the roads are not even paved, and there are signs about "meat for sale" along the side of said unpaved road.

Max babysat for us Sunday night just for a few hours, so Jer and I could have a "date" which was WAY overdue, and MUCH appreciated, thank you Max! We drank mango pineapple margaritas, then wandered drunkenly in Lowes, looking at flooring solutions for the kitchen. It was perfect. There are not too many people that can debatet the finer points of seventeen different shades of IVORY.. like Jer and I can.. it's all very important. Is it the right vibe? The right tone? The right feel? We had each other cracking up and had not just wandered and LOOKED at stuff in so long... it was wonderful.

We decorated for Halloween today, the kids were SO HAPPY! I am in denial that my 40th birthday is coming up on the 22nd of this month.. it just doesn't seem possible. We are getting the twins pics taken this week, and maybe even in their Halloween costumes.

My mom came today and took my ironing, (which she does whever I am injured, pregnant or really sick) and I am grateful and embarrassed, but I am almost forty and still can't/won't fold a fitted sheet properly. I even cut out a diagram from a magazine to help me, but shoot. Oh well. I think it's a question of motivation, but not totally sure.

At any rate, we are all cozed up, Jer is out to get new movies, and I am icing my toe like the great, and dutiful patient that I am. So as long as I write in this blog, I am not cruising craigslist.. replacing everything we have with something almost exactly like it.

Twins officially five!

2008-09-27T01:00:00.000-07:00

Well, by gum, we made it.

After all those sleepless nights, all the "tied to the couch tandem breastfeeding" alllllll those cloth diapers, we are at the Moment.. of having five year olds!

Even with the Di-ba-leet-eez, it's simply the best time ever. They sing and dork around, and communicate SO well .. "Mommy, we have a conflict. Can you help us say our sides?"

Here are a few pix of birthday morning... to be followed later with pics of the birthday party on Sunday.

Star Wars bank that plays the song, and lights up, and moves... they LOVE this!!!

Logan with the sugar free popsicle and I'm 5 sticker.. Gray sporting "extreme smiling" a new Olympic event .

Our day went on to include a cute scene at Costco, where I was ordering a cake for the party on Sunday.. I went to order a cake with no decoration, so Jer and I could decorate it with Star Wars guys and xwings made of frosting....

So Logan and Gray looked at the cakes Costco makes (the same twelve they always have: stork, soccer ball, golf, hearts, etc) They see a cake with a big rainbow on it.. and it went a little like this:

L&G: "Mommy which cake are we getting?"

Mommy: "Well we are getting the chocolate cake, but then (in a very excited, you can't believe how cool it will be type voice) Mommy and Daddy are going to decorate it with STAR WARS stuff!"

L & G: "Oh. (pause) We want the Rainbow cake instead" they say, pointing to the super dorked out sunshine with puffy cloud and big ole rainbow cascading in a torrent of frosted colors all over the top of the display cake.

Mommy: "Well, we are having a Star Wars party, so we were thinking of making you a STAR WARS CAKE." I say, my inner Martha Stewart starting to sweat a little...

L & G: "Well, we want a rainbow cake. If you and Daddy want to put Star Wars guys on our rainbow cake, that would be okay with us"

Finally I smile and realize, this is who they are. They want some super boyish party, and are all about Darth Vader and his imperial goons, but when it comes right down to it, they want a rainbow fricking cake. They love faries, and rainbows, and unicorns, just as much as light sabres.

Why does this make me love them more?

Grinning and finally getting over myself and my need to "party plan", I order the cake and we gleefully leave Costco.

You can't pay for this kind of cuteness.

In prep for the party, Jer and I decided it would be best to tear out some walls, and rip out our fireplace.

Now you may be thinking.. "Nah, how bout after the party, you're NUTS!"

Well, right you are!

But it feels SO good to tear down walls, and make big changes. We thought about waiting till after the party, but can't.

So, we tore out both kitchen walls, and all the brick around our fireplace, and our house is kinda a disaster. Nevertheless, I am happy- I love the new open look and It's always nice to have a house project to keep the mind busy.

Logan is doing well, and I overheard him talking to Jer when he got his insulin shot last night.. Jer must have gotten a tiny nerve or something, because Logan said "OUCH!" and Jer asked. "oooh.. did I hurt you? I'm sorry!" Logan totally spilled the beans on me, he said "When Mommy hurts me, she cries. But it's not like, that bad, Daddy."

Awwww Logie-bear. You little toughie. I am so proud of him, because this is no fun for anyone, and he pretty much never complains.

If it was me, I'd be milking it for all it was worth.

He only makes a fuss about once every week, other than that, he accepts it.

One thing I realized tonight that I have done well is not really coddle him at all over the diabetes issue. I don't "poor Logan" him up, or give him extra chances or leeway to be rude.

In fact I was realizing tonight that we've done a pretty good job so far of not letting it "take over" our life. Logan doesn't get extra privileges or preferences, he is at the same status he was before. Gray sometimes lets Logan take the first turn or something, "Because you have the diabeeteez". I always remind him that diabetes has nothing to do with it, but I am also letting Gray show his kindness toward Logan. I know he feels for him.

Gray is the sweetest person I've ever met.. I'm sure as they grow his feelings of protectiveness will lessen, but for now, it's his choice to give up his turn for Logan or whatnot, and he can do it.

The world could use a little generosity, I always say.

I'm just glad Jer and I have the sense to not spoil Logan, or treat him as fragile or special.. we never say he "is a diabetic" we say "he has diabetes" or "his pancreas isn't working, so we have to help with this teeny shot"..

Long Mommy rant over, going to bed now.. Goodnight, y'all, from the land of Diabetes, Birthday cakes and torn out walls!

The TWINS are turning FIVE!!!

2008-09-24T23:57:00.000-07:00

Yep, those teensy little newborns who shared a moses basket are about to be FIVE tomorrow! I am so excited--- after they went to bed, Jer and I wrapped up some art supplies I had for them (artists paintbrustes for Gray- he is picky about his brushes! And brand new oil pastels for Logie, his favorite drawing medium.) And a few Star Wars things I had scored off ebay last month and tucked away.. so not much, but then.. a package came in the mail from Jer's parents, Grammie PJ and Papa John, and it was overflowing with sparkly gifts!
So I had to set them all up, and sprinkle confetti glitter all over the table, and Jer and I wrote in cards for them.. it's all set up waiting for them in the morning!
I LOVE surprising my kids (in a good way, of course) and I have all the giddy happiness of Christmas Eve. It feels SO good to be happy!

The boys (all three) are *so* much my world to me. The fact that we have all made it this far, this well, is just so amazing. Logan and Gray sure tested my limits by turning out to be two babies instead of the one I was planning on- but I have never been more grateful for their "twin-ness" than I have recently.
I go in and kiss them while they sleep, and smell their little heads before I turn in at night. I don't know why I started doing it, it just is my new routine.
Last night I kissed Logie (who sleeps nearest the outer edge of the bed.. remember they both sleep in the top bunk together "forever" they claim) and I couldn't see Gray's face, it was partially covered with his "snuggie" so I moved it. He half roused, touched his face, the reached over with his eyes closed and touched Logan's face. He gently stroked Logie's cheek twice, then tuckled his little hand back under his blanket.

Oh. My. God.
I love them.
Oh My. God they love each other!

Logan is so supremely lucky to have a Twin in this diabetes ordeal. Gray simply "has his back". He is on board with the "I love you forever, you rock, you're brave with the di-ba-lee-teez" train.
Now my brother and I, we are great friends these days, but back then, he would have been like: "Ha! You have diabetes and I don't, probably becuase you are stupid and adopted!" Or something similarly comforting and compassionate. (We didn't get along until we were in our 30's. Better late than never, I always say.)
These two are like.. peas and carrots. Just right together. Not that I could ever EVER convince one of them to actually, ingest, a pea or a carrot.. but I like them.

I'm tired and off to bed, can't wait till the morning! I will try and take a few pix and get them up here soon, I am just learning how to really use this blog-thing, so bear with me.

Thank you to everyone for all the kindnesses this past week- we love all of you, and are boosted up by your love.

HAPPY BIRTHDAY LOGAN MAXWELL AND GRAY JONATHAN!!
Mommy's monkey bears- Daddy's Bundhi-bears!
I hope you never stop saying "Pactis" for Cactus and I hope you always say "I love you more than a million thousand planets, Mommy- is that a number?" I hope you always have the courage and support to be exactly who and how you want to be in this world, and make it a better place than we were able to do for you.
Muah!!

D-Day, July 31, 2008- the day Mommy ceases to comprehend reality.

2008-08-13T21:15:00.000-07:00

July 31st, 2008

D Day.

It reminds me of those video clips I like to watch, the one where something unexpected happens, and changes your life forever- not always for the good. A jumpsuited mechanic standing in the "pits" of the race track, a car skids across the curve, flipping end over end to smash into the unassuming man, who is just checking his watch, not even paying attention.
One second, the man is fine, checking his watch. The next- he is being slammed,crushed, dragged by the crashing car, then airlifted to a hospital, to lose limbs, to endure rehab, to try and reclaim the life and body he had before. I watch these videos, and am always fascinated by “the moment” of change. They can rewind it over and over, and there it is: before, and AFTER.

I never knew what it would be like to be someone who marks time that way, the way that I do now, in that everything is AFTER we found out our four year old son has Type 1 (insulin dependant) diabetes.

It was a regular Thursday, with the exception of the fact I’d scheduled an appointment for Logan with the Pediatrician, because he had peed in his bed three nights in a row. Considering he had just lost his dog and Grandpa in the same week previous, it was understandable that he might be showing signs of stress- but something nagged at me, and I just wanted to be sure. Better safe than sorry, because we were planning on going to Canada for a big family vacation on Sunday.

I will never forget the feeling I had when the doctor came in and asked me what Logan had eaten just before his visit. "Did he have a lot of sugar?" He asked me, his brow furrowed.

I knew.

Hospital time (Or, how we are introduced to the nightmare/blessing of Children's Hospital.)

Besides the swirling feeling I had, the exhaustion, the panic, the sorrow, the biggest feeling I had was utter rejection of the scenario. We were admitted and told we would be there for three days. WTF?? Yes, Jer and I had classes, Logan had treatments, and it was all a machine that started without our consent and would not stop.
Every book they handed me, I had to resist the urge to shove it back on their side of the table. Keep that shit away from me. Oh, cool syringe/pen/pokey/medicine thing! No thanks, how bout you shove it in your ear? These are the things running through my head, and I swear the nurse can hear them based on the "she's gonna be a tough one" look on her face when she glances at Jer. Fine. I'm tired of being nice anyway. I come up with a brilliant idea of cataloguing things I hate, while I ignore the smiling nurse who is trying to teach me to poke my kid with needles. My first list is of words.

Words I hate:
Diabetes
Blood
sugar
Blood Sugar
Bolus
insulin
poke
check
low/high
clinic
hospital

Also, as a footnote, I hate people who smile when they talk about diabetes. I want to smack every one of them. Plus I won't say Diabetes. I say Di-a bleet-eez. Sue me.

Day two in the hospital. I hate it, shocker.
Luckily I had an old quilt of ours in the car, and I covered Logan's bed with it, so he didn't feel so out of place. Three days of this nightmare of classes, injection classes, nutrition classes, social worker visits... I don't think we ate or slept the whole time. We had to start taking Logan to the
"treatment room" to have his blood tests and shots, because he kept waking up the very sick baby on the other side of the thin curtain that separated their beds.
The treatments are the "pinch and the poke" as we call them.. the poke is the check- blood draw. The pinch is the insulin shot..Logan sometimes calls it the HSP for “Horrible Stupid Pinch”.

There was a lot of screaming, fear, terror, and begging. The mother on the other side of the curtain would break down and cry every time Logan begged us "not to hurt him any more", so we had to leave each time.

I also hated being alone. Each time I took a shower (in the well appointed family lounge on the fifth floor, taking the "train" elevators) or went pee, I’d just sob. I was trying so hard to stay strong for Logan, whenever he was not around, I’d fall apart. I would eat my lunch, then if I was alone, and I'd sob till my lunch came right back up. Sometimes the timing sucked and I had to cry through an entire “class” on either nutrition, how to do injections, or Diabetes 101. I had so many panic attacks and queasy times because of my unreasonable fear of needles and blood, I ended up having to pull my hair, pinch my thigh, or bite my fingers just to stay with it and not pass out.
I was (and am) so angry and ashamed of my fear, because I could see that it was the least productive fear to have in the moment. I am going to look up hypnotherapists and/or anxiety counseling when we get back home.

Finally the day arrives when we can leave, and rush home and pack up for our week long family trip into the Sunshine Coast of Canada. Jer and I decided on Day one, we ARE GOING ON THIS TRIP BECAUSE THE DIBALEETEEZ WILL NOT STOP US. (pant, pant) We don't want Logan to believe or even think that he is 'sick'. He is not sick. He has parts that no longer work.

Dieballleeeteez for newbies:
Your small, seemingly insignificant pancreas does an amazing thing. After your stomach breaks down your food into sugars (your fuel) your pancreas unleashes the perfect amount of insulin to allow the sugars to pass into your cells. We call insulin the "key master". (think Ghostbusters, you'll get there). The insulin unlocks the cell door, allowing sugars out of your bloodstream, and into your cells, and voila! You have energy! Life! Liberty! Pursuit of Happiness!
So all the poor fuckers with Type 1 Diabetes... their immune systems rises up (just like it does to fight a cold or virus) but it gets confused (all the very important doctors don't have a clue why) and instead of attacking something BAD.. it attacks something GOOD. Like certain cells in your pancreas. The cells that produce insulin. So their immune system happily goes to work, destroying the pancreas, until your body doesn't make insulin any more.
The lucky winner of this disease gets to kind of create an artificial pancreas outside their body int he form of a glucometer (blood sugar test kit) and insulin in syringes. Not to mention the Pythagorean theorems, cosign dependant, sickle cell bad ass calculations we have to figure out at each meal and snack to exactly compensate for his every bite of food.

There you have it. That is Type1 Diabetes. Fine. I guess I can say Diabetes without barfing sometimes.

Vacation Notes:
Loaded up with insulin, 4 jillion syringes, etc. We begin our journey into the most beautiful place I've ever seen, the Sunshine Coast of Canada, Powell River and Desolation Sound area.
Jer's parents have rented a fabulous large home for us to call home base while we explore. The first day there, we were still in shock, but the kids came up with a new game that spoke to their acceptance of the situation.

We had packed in utter time crunch, so we had minimal toys, but one thing I brought were the two main characters of "Toy Story" Woody and Jesse, 15 inch stuffed toys with pull strings that say obnoxious things like "Hey howdy HI!"
The kids soon came up with the game of "Throwing Jesse and Woody Off the Deck". After they found some bungee cords, it evolved into "catapult Jesse as far as you can" (Woody was spared this for some reason..)
Watching them crack up, I finally start to realize they may play normally again,and be happy little dudes.. then my favorite thing of the whole trip happens: Gray pulls Jesse waaaaaaay back, gets ready to launch, and as she flies out over the deck, he shouts out “Watch out for your Pamcreas!!” (he also calls pancakes, "pam"cakes so it's cute, see?!)
I feel hope for the first time, and tears stream down my face as I see my kids accepting this even before I can.

One day we went to Powell Lake , at a public park- it was seriously the most pristine, mountainous, gorgeous beach I have been to in a long while. Max cajoled me into the water, even though I had to swim in a sarong and tank top (no suit) but once I was in the water, it felt so amazing. The cool, clean water felt soft and silky on my skin.. I wanted to swim forever. I didn't feel like the mom of a kid with Diabetes, I didn't feel afraid. I didn't feel like my life, or Logan's, Gray's or Max's was ruined.

I think I smiled.

I did not get out of the lake for the next three hours.
Max and I swam to a big huge stump that was out in the lake, and climbed up it. Max dared me to jump off, and I wasn't going to, but then I thought.. why the hell not? I jumped off- it was amazing- hitting the water, coming up, seeing Max's huge grin of pride and love.

Jer searched for driftwood, and the boys found a frog that they played with till it was in shock, then we let it go. It kind of struggled, I was worried about it, but then it got it's bearings.
As it swam off, Jer said to it- “Hey, YOU get your life back.” No matter how scared that frog was, or how stunned he got – in the end, he got to swim away, back to everything he knew before. We did not have that infinite luxury. Jer and I quietly watched him swim off until he disappeared into the lake. Jer hugged me, and it made me cry.

The next day we found the most beautiful beach I have ever seen in my life.. on Savary Island, which is accessable only by ‘water taxi’. We biked the entire island (no cars allowed- it's a refuge of some sort). I exhilarated in the sights, not only of nature, but of my three boys discovering, playing, splashing, Max helping Gray catch “Fighter Crabs”.

All of our emotions crashed at "pinch time", when Logan again needed to reject Daddy, and cry about his lot in life. He screamed at the ocean "It's NOT FAIR!!!!" So many ups and downs per day leave you feeling exhausted, like a wrung out washcloth, and a thin one at that.

As we biked along Savary Island, I saw some squirrels playing in the trees, jumping from one to the other. Instantly, I was angry- jealous of their carefree existence, but more so, I could just FEEL that they were taking their pancreas for granted. How does a dirty little squirrel on some back asswards island get the great good fortune of having a working pancreas???? Little fuckers!! I knew I hated squirrels, and I especially hate these.
Fuck squirrels, I thought as I pedaled away from them.
Fuck everything.

How can there be divine order when my kid gets to suffer? I fooled myself into thinking I had some control over my life. I fooled myself into thinking the hard part of my life was behind me. I fooled myself by thinking I had a right to a sweet life, unmarred by this type of tragedy, fear, and worry. You know what W said.. "Fool me once. um. Fool me.. the point is, fool me once, I can't get fooled again."

Interesting how Jer and I keep shifting blame, but mostly onto ourselves.

Here is the Blame List

1. I have an autoimmune disorder, so it’s my fault.

2. He had a cleft palate, it’s his fault.

3. I have a fear of needles and blood, so the universe is using my kid to “help me overcome my fears” so it is my fault.

4. He said something in the week previous about healthy kids, and did not knock wood, his fault.

5. I said something about learning to scuba dive, and overcome fears- my fault.

It goes on and on in every quiet moment, new ideas about how this happened, who is to blame, could it have been avoided if we were better parents/had better DNA to offer..?

Now I am scared to go home and face our real life... more when we get there.