Omnipod Tool

This idea came from our wonderful school nurse, who is amazing and deserves a parade down main street, a key to the city and a day named after her. When Bean started pumping the endo team recommended that we use sport wrist bands to support the pod on her arms. Bean has scrawny arms and the pod will flop if unsupported. It bothers her and worries her caretakers that some other kid will rip it off.
So I ran down to the local party store and picked up a package of wrist bands. Only to bad for me it didn't work so well. They were too tight and uncomfortable. Next we tried an ace bandage. But this was even worse, way too tight and very ugly. 9 year old girls do not do ugly. We then tried some medical tape and that worked ok but it wasn't easy to take off if you wanted to check the site.
And then the nurse sent her home wearing a sock on her arm! The nurse had cut the toe, heel and top off and used the part between the heel and toe as a support band. And it works great. Bean can easily take it on and off on her own, we've picked up cute socks at the dollar store with cute pictures to make more girlie ones. I also picked up some iron on patches so she can do an arts and craft project to make more. It's such a great idea I had to share.

Scary Saturday...

Friday night Bean asked me to make waffles for breakfast. On the weekends I usually do bigger breakfasts as it's my favorite meal. I agreed to make her eggs, sausage and a waffle that following morning.

I had tested her at 12 am and her blood sugar was a little high but nothing alarming. We then got up at 8 am and needed to rush my car over to the shop before doing breakfast. Bean seemed fine when she got up, we grabbed her kit and drove the few blocks to the shop. Along the way she started complaining that she was hungry and wanted waffles - really, really bad. Then she said she felt sick and puked in the parking lot. Poor girl. We had her test. 426!

So we rushed home to check ketones. Man that stick darkened so fast - the high end of moderate. I started shoving flavored water into her. She complained about being hungry but I didn't want her to eat carbs until we knew if the correction +10% worked. Thank god for cheese sticks and a fried egg. 2 hours go by with lots of peeing, demands for waffles and we tested again. This time the meter said HIGH! That's not very helpful - numbers I can understand but the words HIGH are so so scary. It's hard to put in perspective. What's higher than HIGH? At what number does it stop being a number and displays HIGH?

We do a syringe correction and a pod change. The tube is completely kinked in half and now we have the source of the insanity. I call the endo's office and the nurse line is closed, the answer service isn't turned on and I sit on hold for an hour. The office is open so I'm not sure why no one answered. We decide to test everything again with in that hour and if there was no improvement we'd take her into the ER.

Lucky for us her blood sugars came down as did the ketones. Another hour later she was dancing in the kitchen singing about wanting waffles - which she got for dinner.

Yay for Camp Sealth!!

I've been really bad at blogging as I've been suffering from burn out. Diabetes is hard.
Due to some encouragement from another T1D mom we decided to send Bean to diabetes camp at Camp Sealth. It was an incredibly hard and brave thing for me to do. My parents died in a motorcycle accident when I was a teenager and as a result I have huge issues with separation anxiety when it comes to my kid. So camp wasn’t just for her but also for me because I can’t project my issues onto her. I have to let her grow up.
The folks at Camp Sealth and the people from ADA are simply amazing. She loved being there and they did a great job with her diabetes. She made many friends – met a cute boy who also has D and learned some independence. And although we missed her so very much, having a diabetes break was what we needed to help put it all in perspective. We haven’t had a day off since September 6th. And the break allowed me to find myself again. I’ve let being a T1D mom define everything that I am to the point that I’d lost myself to it.
The week off also made me rethink a few things we do and reminded me that I need to slow down and just enjoy the moment I’m in. I also reorganized some things to make it easier for us at home. I did a small purge and cleaned out of the toy room. Reorganized furniture and started to do a purge of my sewing room. I didn’t do any sewing while she was gone as I missed her too much.
And I’m so proud of Bean. She was very compliant and bloused for everything she ate. Some of the other D kids didn’t understand the consequences of sneaking food - which is a normal part of growing up with D. And I’m proud of her for her management.

The boat to camp.

The Captain has been taking the kids to Camp Sealth for 36 years or so. Before boarding the kids will give the Captain boxes of Twinkies and other snacks that the crew will then hand out during the 3 hour boat ride. They also dance, sing songs and play games. Makes me want to be a kid again.

Family Retreat

Last weekend's Family Retreat was so much fun. We talked about diabetes, shared tips, Bean met up with her friend from the previous family retreat, and just had a ball. The best part is that while we were there Bean handled a good amount of her own care. During snack time she would add up the carbs then give me the number (so I could verify if she was right) then she'd go off to be with her friends - bolus and have her friend double check the number for her. She wanted to be more grown up. I supervised from afar, just in case she needed me, which she never did.
This time the panels were organized much better and I didn't feel as rushed from place to place. The food was still gross - thankfully they had bananas and a toaster so she could have peanutbutter toast. And the snack table was full of awsome kid friendly food. Plus I learned from last year and brought a little cooler of food stuffs. My favorite teen panel was held again and they talked about the difference between 'snacking' and 'sneaking' and how sneaking food was done out of a sense of control and rebellion. And how pre-pump many of them wouldn't bolus for the sneaked food. But now that they were on the pump they would at least 'sneak safely'. There was more - but i'll save it for another post.

Family Retreat

This weekend is the ADA's family retreat and it really couldn't come at a better time. We're all starting to show signs of D burn out. I've had to get on Bean's case for not testing for Ketones - and not telling us when the pod tells her too. She's not lying about her blood sugars but won't tell unless you ask. Which in my book isn't acceptable. Peeing on a stick is the easiest part of diabetes!


And having a tween is hard. Her and I are starting to snipe at each other a bit more as she fights for more control over her life but doesn't take responsibility for things. And she's struggling with learning an acceptable tone of voice. There are days where I miss having a toddler.

Instead her and I overcome our issues by curl up in her bed to watch season one of Little House on the Prairie. Ma and Pa make parenting look so easy.

9 year old epiphany

While driving Bean to school today she tells me -

"Mom I'm so glad I have to do so many shots because it's made me a stronger person. I used to be a big baby and cry about everything."

I have mixed feelings on this. She's right and I'm proud of her for embracing this part of herself. For seeing the positive in it. But deep, deep down a part of me weeps that she has to.

I'm not the most perfect Mother but they love me anyways

Flowers are the traditional symbol of mother's day love. And I like flowers. Roses, lilacs, daisies and lilies. They are all very pretty. But you know what I like more than flowers? Coffee. And my Mother’s Day started out by waking up to my husband giving me a hot cup of Starbucks. Then he made breakfast while the family showered me with tokens of love. They gave me a Wizard of Oz box set, the new Alice in Wonderland DS game (which is incredibly cute) and a plastic glow in the dark zombie set for my future ‘Christmas at ground zero’ zombie Christmas village which I feel will go well with my Disney Christmas village that goes up every year. Bean gave me the sweetest Mother’s Day card where she’d drawn herself as a rabbit wearing her Omnipod. The pod is drawn with the same amount of consideration as the color of her eyes and hair. Simply a part of who she is now. I’m proud of her.While eating breakfast we watched the newest Doctor Who (can you tell yet what a huge geek I am) as well as the older Blink episode. Then we took the puppy, piled into the car and headed for the ferry to Orcas island to do a little touristy fun.I love being a geek and a tourist.
For most of the day Bean’s sugar was on target, even though she was hyper and we had to do some carb guessing for lunch. She’s become a tween – which means she doesn’t listen as well as she used to and likes to challenge us a bit. But I monitored her levels and they seemed fine. I dismiss the attitude as a 9 year old thing. On the ferry ride home she and I wandered the ship and then she started acting truly bizarre. We were standing at the nose of the ferry watching the scenery and then she started bouncing off the walls, hanging off the railings, you know being insane. She was so hyper, and I secretly thought ‘you better be high or you are so in trouble’. Am I horrid?
So I took her back to the car to test – I could have tested on the deck but we were right near our car. She was in the low 200’s. So high but not alarming and not in trouble for her behaviour. We corrected. Thinking it was possibly the excitement or miscalculated carb guess. I should know by now that with this disease you should never assume. I should make that a T1D rule.

With diabetes – never assume.

Because we were driving back late we stopped and got a McDonald’s kids meal for her. Horrid food but easy to carb count. Chicken nuggets, apples and a chocolate milk. It’s our ‘oh crap we need to give her dinner but don’t have enough time to make it’ meal. It’s only been an hour since her correction so we don’t poke. We get the food, get on the highway, bolus for it then discover they gave her a hamburger instead of the nuggets. Luckily it’s more not less carbs. So easily corrected. She’s still hyper in the car, wants to talk our ear off - but eventually nods off for a little snooze.

We get home really late and all of us are tired. I get her to bed, tuck her in and do a finger poke. And crap – the meter reads 340. Not good. She won’t pee for me because she doesn’t have to go, so I correct and set my alarm for 2 am. At 1:40 she wakes me up and drags me upstairs because she doesn’t want to go by herself as it’s too dark. I’m really out of it and it isn’t until I hear her going to the bathroom that it hits me that I should have checked her ketones. Crap, not good. I get her back to bed and check her blood. 360. Triple crap. Now I have to change the pod. This stresses her out and I can’t blame her. Diabetes at it’s best is not a ton of fun, and at 2am it’s hellish. But I go into mommy mode and suspend the pod with the promise that we’ll remove it in the morning, and I do a correction with the humalog pen because I couldn’t remember how to read a syringe and she was so scared of it that I didn’t want to mess with it. I put on the new pod using the new insulin in the humalog pen. So I set my alarm for 2 hours later and try to sleep. At 4am her levels are down – not in target but the low 200’s. I correct and get up again in 2 ½ hours for school. And her target is back in range. As an added bonus she woke up in a good mood, giggling about how she was wearing not one but two pods.
Last night I hardly slept in between the constant blood checks, worry and fear helped keep me awake. It’s so scary not knowing what’s going on in that little body. I feel like awful at work today from lack of sleep and as I’m sitting her trying to get through my lunch the school just called to let us know the pod is reading an error and that it’s deactivated. This time it’s daddy to the rescue.

Thanks for the D

There are some days that I forget we have Diabetes. Where it's so routine and normal feeling that it's like brushing your teeth, or combing your hair. Something you do with out much thought. Then there are days that are full of tears and stress. Where numbers are crazy, emotions run high, and you hate this disease so very much as it runs your life.

I'm not having either of those kinds of days. Even though our numbers have been up and low...and low. I just feel kind of feel resentful at diabetes and at how very few people really understand what it's like living with it. How they binge on cupcakes and fruit with out a care. They're lack of co pays and nights of sleep. How unfair it is. And yet I'm also marvelling at how much diabetes has changed me as a person. In real life I am shy, I have anxiety, I hate crowds. I am a person that worries and is in fear of everything, even the unexplained and uncontrollable. I’m a scaredy-cat that’s afraid to talk to people least they dislike me, or I look a fool. Or at least I was. I'm less of that person now. Those things that used to worry and scare me so much - now seem so trivial with the reality of this cruel and unpredictable disease. I guess I should be thankful that diabetes put it all into perspective.

Dear Stupid Diabetes...

Dear Stupid Diabetes,

Thank you for keeping me up last night, because after 3 days of insomnia the last thing I would possibly want is to sleep. And it's not like I can take anything for the insomnia anyway out of fear of sleeping too soundly and not being there if needed.

Thank you for last night's unexpected high blood sugar that left us all scratching our heads and wondering where that came from. From a fluke? From the new BBQ sauce? Maybe aliens caused it.

Thank you for the moderate ketones and having to wake Bean up at night for a pee check. It's so easy to drag a half sleeping 9 year old up the stairs and to the bathroom. And there's nothing more fun than dipping things in pee in the middle of the night.

Our next house will have to have a master bathroom. Not because it's cool and stylish but to simplify things. And a larger kitchen. We really need a larger kitchen to hold all the diabetes supplies. Thank you for showing us that.

Yours truely,

A T1D Mom

Still around - just been busy.

Life doesn't slow down with D. Heck, life doesn't slow down for anything. We've been super busy the last month. We had lovely company over, visited an island, and later took a day trip up to Canada. We've had sickness, and asthma attacks from hiding under the bed during a play date. I'm working on a pod arm cover that is more comfortable and stylish than those sport bands, and we've done a bit of house purging. The spring weather has been delightfully chaotic with sunny rainshowers. Overall things have been good.

So busy that I've fallen behind on blogging.

Instructions for String Easter Basket & Eggs

I was asked to share this fun craft from my previous post. It's very easy to do.

Supplies:
Balloons
Crochet string or yarn
School Glue
Paint brushes
Small paper cups.
Parchment paper or plastic bags to cover your work space because it's messy.
Optional: Glitter and spray glue. Print outs of easter clip art.

Steps:
1. Blow up balloons. We used tiny ones to make doll sized baskets.
2. Wipe a bit of Pam cooking spray on the balloon to make them a bit slick.
3. Mix school glue with a bit of water. You don't want it too runny or it won't harden - but you want it smooth enough to spread around and soak into the string.
4. You can either dip the string into the glue mixture or what we did was start wrapping the string around the balloon then using the paintbrush smear, soak the string with the glue. You want it super coated so that it hardens when it dries. I usually wrap the handle first then around the base, then pile string on at the bottom. The glue makes a sticky gloppy mess.
5. Rest on on a paper cup to dry or suspend from a ledge with tape. It will drip so you'll want something under them. I save the glue mixture - just in case we missed a spot.
6. Once dry check to see that the string is harden all over. If not reapply more glue.
7. One dry, take a pin or old lancet (had to get diabetes in there some how) and poke the balloon.
8. Pull out the old balloon leaving a 3d basket/egg.
9. Decorate. We're going to use glue spray and sprinkle glitter on the eggs. We're also going to use sculpty to make tiny doll easter eggs, chocolate bunnies and cut out easter clip art and ribbon to fill the doll easter baskets. But our eggs are still to wet to show that step:)

Crafting with Bean

I call Jillian 'Bean' or 'Jilly', sometimes even JillyBean which is now really fitting as Jelly Beans are hidden everwhere in this house because it's our favorite low treat. I really want to rename my blog 'Counting Jelly Beans in the Dark' because I do it so well. I'm a pro.

Today Bean and I did a bit of crafting. She has never made string easter baskets or eggs before. I remember making these in school all the time. But now that the schools do not celebrate easter there's a whole generation that is missing out on this fun easy craft. Well not my kid! I can't wait till these babies dry and we can pop those balloons.

Opps...

Did you know that we have diabetes? Because today I sure forgot....
After lunch Jillian was a little needy so I had her spend time with me showing her how to sew. We were sewing a hampster when half way through she commented how exhausting sewing was. She seemed kind of tired and quiet so I suggested maybe she needed a nap.
That's right. A nap. Because you know a nap makes everything better.
So a few more minutes go by and she says 'Mom I think I'm low'.
And then I recall that we have diabetes. We tested and she was 68. A few jelly beans later she was back to herself. And I'm so proud that she figured out she was low.

So today's rule is:
A nap will not cure a low.

She will only eat this for cold lunch...

Bento boxes!



And always with mini hot dogs, cheese block, cheese crackers, Horizon milk, a bannana and a small treat - like this mini rice krispie bar from Halloween for only 9 carbs. I keep asking her if she wants something else...but she won't budge. She does eat hot lunch 2-3 days a week as well.

So I've learned to live with the T1D rule...

Let her have some control over what she eats.

A childhood with diabetes means....

...using the three spent pod's from the saline trial as hover cars then later as a herd of computer mice that are about to attack the I-Carly dolls.

There's something so peaceful and normal about a child using an everyday object as a toy.

Loving the pod

We love the Omnipod. We're not really on it yet. Just the saline trial. But it's in many ways so much easier than shots. And I love that I can check her trends and I don't have to get cranky that one of us forgot to fill out the log book. I get cranky about that alot.

What I don't love is the test strips. And the light for the strip is pretty useless in a dark room. But that's why they invented night lights. I also don't like the waiting period . We should hear from Insulet in 3-5 days what the insurance will cover. 3-5 days! Lol. That's like a life time! I'm nervous though. Hopefully our insurance will accept that having one is a medical neccesity. It'll make a huge difference in her levels and ability to self-manage. And it's cheaper than a trip to the hospital. Come on insurance!

I keep meaning to do a diabetes related craft. I have some things floating around in my head but I just haven't gotten to it yet.

Having an 'I hate Diabetes' moment

We check Jilly's blood every night before going to bed. Last night I tip toed into her dark room like every night. Pulled out the pod to check her. I poked the inside of one finger and squeezed out a large drop of blood. All while holding her hand tight. She's learned to sleep through this but still will sometimes pull her hand away and I'll have to start over.
I'm not used to the Freestyle strips and find them more difficult than the One Touch. The blood never seems to want to go into the side of the strip and instead smears around. I eventually got it to read though. I held my breath and waited for the number to come up as it would tell me if I got to sleep through the night or not. And I was lucky she was in range.
I put everything away, tuck her in and kiss her good night. Walking back to my own bedroom. I look down at my hands to see her blood smeared all over them and and that point the self-pity came out.
How unfair. That while other parents get to tuck their children in to bed with out a care before heading off to sleep themselves. I get to go to bed with her blood on my hands. What really gets to me is how oblivious so much of the world is to Diabetes.
Stupid Diabetes.

The start of something new.

It's official...

We are now on the Omnipod saline trial! We have a loaner pump from the office and despite my nervous butterflies we are totally loving it. Jilly was a little scared at first - but quickly overcame it. If it works out we'll be putting our order in next week. Which is fantastic as we've already met tis years insurance deductable. We also ran into the family we met at ADA's family retreat at the doctor's office which was a totally fantastic surprise and helped set the mood for the visit. They are such a great family.

Time heals all...

When we were diagnoised everyone told us it would become normal. At the time that felt impossible. How could anything be normal again? It was all so overwhelming. But now it's so routine, I still end up getting up at 3am 3 days a week. On the nights I don't have to get up I often wake up anyways. It can still be stressful. Like when we can't get her blood sugar down. And her behavior is odd. Or the copays. Thankfully we have insurance because it is all incredibly expensive even the copays. Our once perfect budget is out of control. I know we just got back from a cruise - but that was funded by family. And I live in dread of another hospital visit. Our 3 day hospital stay was over 15K. We only had to pay $1,500 of it. I can't imagine the families who do this with out insurance. This is our normal.

But we have awsome days. For my birthday we did Seattle's Ride the Ducks. And had such a fantastic time. We quacked our duckie whistles and saw the Sleepless in Seattle house. Bean can do all her own shots. And the best news? We start pump training on March 1st.

My Sunday....

High - high - WTH? LOW - Eat jelly beans - high - almost in range - SUPER high - check pee, no ketones - high - almost in range - high - high - check pee, no ketones - ????

The blood has it out for me.