T1D JillyBean

Omnipod Tool

2010-08-06T15:45:00.000-07:00

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...

2010-08-02T12:29:00.000-07:00

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!!

2010-07-28T12:46:00.001-07:00

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

2010-06-10T15:15:00.001-07:00

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

2010-06-02T12:13:00.000-07:00

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

2010-05-18T10:51:00.000-07:00

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

2010-05-10T12:12:00.000-07:00

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

2010-05-05T12:54:00.001-07:00

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...

2010-04-29T11:56:00.000-07:00

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.

2010-04-27T14:51:00.001-07:00

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

2010-03-29T11:25:00.001-07:00

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

2010-03-28T18:31:00.000-07:00

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...

2010-03-21T22:34:00.000-07:00

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...

2010-03-16T23:11:00.000-07:00

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....

2010-03-15T15:38:00.000-07:00

...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

2010-03-09T12:45:00.000-08:00

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

2010-03-05T15:41:00.000-08:00

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.

2010-03-01T22:52:00.000-08:00

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.

2010-02-21T19:32:00.000-08:00

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.

2010-02-15T10:33:00.000-08:00

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.

2010-01-27T20:48:00.001-08:00

Sailing NCL with T1D...

The cruise ship we traveled on is the Norwegian Jewel and the Norwegian cruise line offers Freestyle Cruising. Which made traveling with T1D all the easier. Their tag line is 'Do what you want - when ever...'. And unlike tradittional cruises that tell you where and when to eat NCL lets you do it pretty much how you want. The signature resturants have cover charges but they have 4 free ones - one of which is a buffet and the other is a 24 hour restaurant with a limited menu. From the 24 hour restaurant we would order a chicken sandwhich with nothing but the grilled chicken breast as she hates buns and a side of ranch for Jilly when she needed an evening snack.

We ate most of our meals at the buffet and often times took the food up to our room. We could have ordered food service but it was much easier to allow Jilly to pick out what she wanted to eat. And much more romantic to eat it on our balcony. The food offered in the buffet wasn't outstanding but it was good with lots of selection. Jilly usually eats the same things so we used the Calorie King to figure out carb counts.

The islands were a bit more difficult. We didn't find out until after the trip and going through the paperwork that local laws fobid bringing food from the ship to islands. No one ever checked our bags though. We would go to the buffet for breakfast and take some fruit and a couple of hard boiled eggs for later in the day. Jillly is a picky eater and the islands were all developing. It was very different from what we were used to. I felt I couldn't trust we'd be able to find the food we needed when we needed it. So along with the eggs and fruit we also brought some of the food we traveled with. I'm glad we did. Even though everyone assured me that we'd have plenty of food we ended up using the snacks and food we brought frequently when off the ship. Sometimes to round out her meals.

We booked all our tours through the ship. It's more expensive this way but we felt it was easiest to make sure we got back in time. And on the dune buggy beach tour the tour guides told us they had first aid training. I'm not sure all the tours had this but it made me feel safer.
The crew members in the kids club also had first aid training. And in the kids area Jilly met another little boy with T1D. They offer phones for parents dropping babies off and we requested one of these in case she needed us. We never had to use it - they are really good at putting on the schedual when the kids are eating so you can plan around that.

Overall the trip was fantastic. We even survived the chocolate buffet. We allowed Jilly to fill up her plate with what ever she wanted. Fed her a chicken breast first (it helped fill up her tummy and she had missed dinner) then figured out the carb count for a single bite of everything. Our coverage of that was perfect. No high or low.
We had so much fun on this trip and totally want to do it again.

Crusing with T1D part 1...

2010-01-19T22:36:00.000-08:00

Flying Delta with T1D...

We recently cruised the Caribbean on Norwegian Cruise lines. We had booked this vacation before diagnose and I almost canceled after finding out Jilly had T1D due to a fear of traveling overseas. Her doctor assured me it would be ok and that the only way to be truly safe would be to take him along with us. I love her D team.

This cruise was the second trip we've taken since diagnose. On our first T1D trip in which we went to San Francisco we flew Alaska Airlines. I love Alaska. They serve Diet Cream Soda, you can rent a digiplayer on long trips for $10, and overall the planes are nice and clean. Alaska Airlines gets an A from me. I also just got an email from them of a charity program where you can donate your air miles to go towards Haiti relief efforts and they will match what's donated. Being an Alaskan customer gives me warm fuzzies.

For this trip we flew Delta to Miami - and honestly Delta is a huge steamy pile of poo. I remember flying it in the 80's and then the airline seemed so elegant and sophisticated. Forward ahead 20 years and you can see why they are in trouble. The counters were clearly understaffed. They required you to enter a long line to print your boarding pass, and then another long line to check baggage. Even the skycap was understaffed with it's own huge line. Our check in took an hour longer than Alaska, despite being understaffed they were very peculiar about every checked bag insisting on weighing and measuring each one to see if they could charge you even more for your luggage. Alaska Airline's process is so streamlined, plenty of boarding pass kiosks in SeaTac and fast at taking luggage.

So even though we gave ourselves 3 hours at the airport - anticipating that we may have slowness between security and our extra medical bag and wanting time to feed Jilly breakfast as we were there at 4am - we spent an hour just trying to check in our luggage.

Next was scanning everything through security. On our previous trip I've had Jilly's insulin hand checked both at the Seatac airport and the one in San Fran with no problems. This time I had the worst luck of getting a super cranky guard. Super cranky people who hate their jobs appeared to be the theme of the day. When I handed guard the Humalog and Levimir pens asking for them to be hand checked. I was met with rudeness and resistance. I had to keep explaining what the insulin was for, why I didn't want it run through the scanner - I've read on the CWB that some people noticed a difference with the insulin after going through the XRay. And as I was going overseas I didn't want to take any chances and wanted some of the insulin hand checked. They happily did for me two months earlier when we flew to San Fran. I showed her the travel letter from our endo which states that Jilly has T1D and everything she needs for it. And then the woman had the nerve to slowly scrutinize the travel letter word by word then tell me that no where in it does it state that the insulin requires to be hand checked - I insisted. Because seriously they'll hand check CAMERAS with out batting an eye and they won't do her life required medicine. Funny enough Jilly was still wearing the Omnipod demo pod which they didn't even notice. So the guard finally told me she'd do it for me this one time (mainly because I wasn't going to budge on what I wanted) but in the future it needed to state that in the letter the medicine required hand checking. The whole thing felt more like she didn't want to put in the extra work to hand check it (because it is a little extra work wiping and scanning it all down) than that she was worried about security.

Flying Delta.
In total we flew 4 Delta plans for this trip counting both directions and the flights were long. Flying to Miami we had 3 personal items and 4 carry on's - one of which was a bag strictly containing Jilly's medicine. The carry on's we use are mostly pilot cases, one of which is quite small being little more than a box on wheels as it's a kiddie pilot. Another is a laptop back pack. On Alaska all of these carry on's will fit under the seats. One of the bags can be a slight tight fit to slide it under at first as the space between the seats isn't that wide but once down it'll fit under easily. All of our carry on bags fit Delta's requirements but none of them would fit under the seats. Not even the laptop bag. The Delta planes that have the small TV's on the back of the seats have the seats considerably closer to the ground. So that only personal items will fit under them - I packed the bags assuming they'd go under the seat and I would have easy access to her supplies. Once we realized they wouldn't fit we had to quickly get some food and her kit out before stowing them in the overhead bin which made the airline stewards cranky about blocking the isle. And because no one's carry on's fit under the seat that made the overhead bins overfull with more bags than space. And that includes in the first class area. For the flight home we packed one of the carry on's inside our luggage to minimize the space and ensure our luggage stayed together. When the airline stewards attempted to move our bags from our area above our seats where they all fit in order to make room for someone else's bag my husband insisted that it stay in our area and asked them to be careful as the bag contained his lap top. The airline stewardess (yeah Janice I'm talking about you) roughly shoved the bag into a different bin and said 'That's not my problem'. I can't help but wonder if we asked her to be careful with Jilly's medical bag her response would have been the same. Doesn't give me much faith in them if there was an emergency.

All four planes were exceptionally filthy. Trash in the seat pockets, ripped seats and the real kicker was the dried booger on the seat in front of me. Thank god for hand wipes. Delta serves pretzels, peanuts and these yummy delta cookies that have no nutritional information on the wrappers - only a phone number you can call. Who's going to call that in the air? They were very generous with snacks though. On our first plane we asked what diet sodas they had and were told only Diet Coke. We found out later they also carried Coke Zero. They also gave me extra cookies when I started to feel motion sick due to a neighbors overwhelming perfume.

We packed our own food because we didn't' want to deal with buying airline food. We also didn't know what to expect for food on the ship and port so I wanted extras. All the food was in our medical carry on.

For the trip we carried: Mini hillshire farms hot dogs with cheese, cheese sticks, jerky, Halloween granola bars in awesome portion sizes, Halloween grips also in awesome portion sizes (and here my husband made fun of me for buying so much during Halloween). Horizon milk that doesn't require refrigeration, 2 bananas, peanut butter crackers, cheese crackers, a couple of sandwiches, sugar free water flavoring, an empty water bottle, 2 juice boxes, a few pieces of candy.

At Miami our luggage took over an hour to show up on the carousel and it didn't help that Jilly was tired and wanted a real dinner. Everyone from the plane was mad and cranky - and staring at an empty carousel didn't help anyone. At Seatec our luggage came promptly so maybe it's just the Miami port.

More comming in part 2...

2010-01-18T21:50:00.000-08:00

Tired and jet lagged...

We just got back from a cruise and I'm planning on making a post on everything I learned when cruising with a T1D child. But I'm so jet lagged and tired that it will have to wait for later. But I have lots to share including some pretty pictures.
I have noticed that I've reached a point with T1D where it's normal and routine. Even though I hate it on those days I want to be lazy - I attempt to remain positive and see it as simply a part of who my child is. Which brings me to my pet peeve. I have to confese I'm getting a bit tired of hearing people respond with comments like 'Oh that's a shame.' When finding out she is a diabetic. It's so negative - like there's something wrong with her. And yes, T1D isn't how it's suppose to be - but I don't want my child hearing how sad or bad it is that she has it. I want her to accept it, live with it and have a good life with out trite pity. Jilly is proud to be who she is - broken pancreas and all and there's nothing to be ashamed of for it.
My other pet peeve (and I know it's shared by others) is when people realize what she has and respond with that they or someone they know is a Type 2 diabetic. I want to start responding to the next 'Oh my Aunt has type 2 diabetes' with a blood curdling scream. It's not the same thing!

2010-01-04T21:31:00.000-08:00

Time flies with the holidays...

Ni Hao!
It has been awhile since from my last post. I always get so busy and overwhelmed with the holidays. Presents, decorating, mailing, cards, activities - add in T1D and something had to give and that was blogging (or my sanity). Not enough time to do it all.
So December brought new challenges. We learned that Wii Sports was a great way to control her blood sugars over winter break. Playing even a small bit a day made an impact on her. We made our own advent calendar - decorated plain white envelopes that I stuffed with coupons that allowed her various activities, games and treats. I learned to be creative with stuffing stockers. A little candy, some sugar free gum, and small trickets made her just as happy as a stocking stuffed with sugary crap. She displayed amazing control at school when they made gingerbread houses. I asked her to wait off on trying to eat it - and passively aggressive left it out as a decoration letting it get stale.
We made some mistakes though - the biggest one was last night on her birthday. We had so much fun. Went to the reptile zoo, had a play date. Covered her ice-cream cake perfectly with an extra injection. Her night time check was in range (after ice cream cake I had to check at 3am just to be sure). Then this morning when she woke up her blood sugar was 445! She had moderate to high ketones, the color was so dark on that pee stick! And she started displaying the symptoms from the ketones. Upset stomach, not feeling well and headache. I put together what went wrong fast - we forgot her long acting insulin the night before. We've been so good at it, feeling so confident that it became routine and we were doing it with out thinking. The extra shot for the cake messed up our pattern. I got ahold of her nurse Kim who helped walk me through what I needed to do. 5 glasses of water and an hour later her ketones were back in the negative. The doctor also called and walked me through the insulin adjustments. And she was back in range in time to have a half day at school. It still gave me a huge scare. I don't know what I would do with out Jilly's medical team. They are amazing.

So a new rule:
Don't forget the night time shot!

2009-12-05T21:57:00.000-08:00

Life can be rough...

We've been battling a swing of blood sugars the last few days. The numbers will be normal. Then suddenly spike up to alarming levels requiring me to wake up every 3 hours for corrections. Then it'll go back to normal. Tonight has been high and I'm praying it'll drop down because I'm feeling so burned out. I know it's always going to be like this - but I can't help but wish that it would give us like a week's vacation. After 3 months don't we deserve at least that? Or at least some regularity? Unless chaos is the new regular.

On a different note I've discovered blogging is a useful threat. Jilly was being a wee bit naughty today. Doing something and not stopping when told to. I finally threatened her that if she didn't stop I was going to blog about what she was doing. That stopped her shenanigans fast!

2009-11-26T18:27:00.000-08:00

Kids say the funniest things...

I have a family tradition of watching the Macy's Thanksgiving parade. A tradition I'm forcing on my daughter. And while she likes the floats and giant balloons she finds the multiple high school bands and singing floats dull. A bored 8 year old equals a naughty 8 year old.

Me: You know if you don't start being good Santa isn't going to give any gifts. You know that right?
Jilly feeling overly saucy: Yeah. Instead he'll stuff my stocking full of chocolate cake with out any insulin.

2009-11-22T22:28:00.000-08:00

Another reason why she's amazing...

When Jilly started grade K her teacher had the class make these little school buses out of construction paper for the front board. Each bus was brightly colored and had the child's name and the words 'I can (fill in blank)'. One kid said 'I can say my A, B, C's'. Another said 'I can play with my dog'. All pretty normal 5 year old thoughts.

Jilly's said:

'I can save the world.'

I hope she keeps that belief with her forever.

Double checking doesn't mean it's perfect..

2009-11-17T23:24:00.000-08:00

The morning routine...

Our morning's are becoming a consistent pattern now:

6:45 - Alarm goes off and I smack snooze.
7:00 - I finally get out of bed. Let the old dog out, use the bathroom, feed the cat and take my pills.
7:20 - I pick out Jilly's clothing which often involves me going out into the laundry room because who has time to put the folded clothes away? I then cuddle up with Jilly and try to wake her up. Usually it takes me blowing in her face and tickling her ear with a lock of her hair to get her to wake up. And by waking up I mean 'she pretends to sleep while trying to hide a smile'. I then end up removing her blankets, and telling her she needs to wake up because I can hear the puppy crying.
7:35 - I have a 50% chance of remembering to put my pants on before I walk the puppy. Otherwise I realize it as i'm standing out in my slippers and pajamas in front of all the traffic driving by.
7:45 - Puppy is in her big crate having breakfast, then gets walked again then is let loose to play. While she's having breakfast Jilly comes up stairs with messy hair and hauling a blanket, 2 stuffed animals and her D kit. The first thing she says to me is 'Can I watch TV?' to which I always reply 'Is your hair brushed and your back pack packed?'. Answer is always Oh..yeah..
8:00 - Jilly checks her blood sugar. I've made breakfast: 1 cup of cereal, 1 cup of milk, 2 pieces of bacon, and a fruit (usually bannana).
8:10 - Jilly gives her morning injection after me asking multiple times if I need to turn the TV off so she can focus. She checks her kit to make sure it's got everything she needs for the day. Then while she's eating I check her kit again because you can never be too careful.
8:15 - I'm making lunch. She wants to eat the same thing over and over again for lunch and I've relented. I'm learning to pick my battles. I make her a bento box with mini hot dogs, a milk, a cheese stick cut up, a fruit, crackers and a little dessert such as one mini twinkie. I make it look cute and pretty, something she can proudly show off to her friends. Food that shows my love. And as I'm putting it in her lunchbox I look up at the clock. Poop!
8:20 - I'm yelling at Jilly to turn the TV off, get her shoes on, get her coat, get her bags and kit. As we're late. I'm scrambling to get dressed, brush my hair, put make up on, get pets where they need to go, find my wallet - find my keys, yell at Jilly again that she needs to put a 'coat' on as it's winter. Not just a light weight hoodie - her coat. Get out to the car, verify we have the kit, lunchbox and D kit. And then I realize I haven't had time to make my own lunch or breakfast.

That's my morning. So it didn't really surprise me today when the school nurse called to tell me the humalog vial in Jilly's pen was empty. It was then that I remembered that when I had done the 3am check earlier that morning I had seen that the pen was low and had made the mental note to replace it in the morning. Who can remember what they were thinking at 3 am? Not me that's for sure!

I had them check her BS and feed her lunch while I had a frantic drive home from work. I then grabbed two vials - one for the pen and the other for the nurse's fridge as a back up. Now that we're into month 3 with T1D we're starting to get enough supplies to be properly prepared. When I got to the school Jilly was fine. She was sitting in the nurses office playing a game with another little girl. She replaced the vial, did her injection and went back to class as I drove back to work. She also thanked me and told me how much she loves me. Which is really the most important part of it all.

So the new rules I learned today:

Even if I make a mistake in her management she'll still love me just as much as ever.

And

Double checking doesn't mean it's going to be perfect.

Family Retreat

2009-11-15T22:11:00.000-08:00

Time really flies when you're busy with D...

I haven't posted for a bit - been busy with home, work and fun. We are now going on 2 months with T1D and it's beyond amazing how far we've come. Not to go all sappy but I'm so proud of Jilly. When we were first diagnoised one of our biggest fears was full day - day care. Our family is dependent on both of our jobs so quitting wasn't a possibility for either of us. But with no one to give Jilly her injections at day care I had no idea what we would do. Talk about stress!
I brought my fears up with her endo and thanks to him she is giving her own injections, is learning to carb count and read her chart. And following the endo's advice (and with the help of the day care teachers) we ran through two 'trial' injections at after school care. Ren picked up McDonalds for dinner on his way to pick her up from the center (we never eat McDonalds or most fast food so it was quite a treat). And she did her dinner injections there with the staff. Then she had a full day of day care on Vet's Day. Her and the staff handled the injections, and double checking the dial up amount perfectly! I'm still nervous about summer care because the kids take 3 field trips a week. But we'll make it work.

Jilly and I went to Family Retreat two weekends back and I can not recommend it enough. She met a really good friend, interacted with other T1D kids and had some good mom bonding time. I discovered that our family having T1D is an invite into a club of supportive parents. The club even has it's own lingo. I haven't discovered if there's a handshake yet, but I feel a sense of kin ship with these other families.
The panels I went to were very informative. My favorite was the teen panel where a group of kids honestly told us what it's like to be a teenager with T1D. I want Jilly to be as confident as these kids were. Because they were really amazing in individual ways.

The retreat taught me a new rule:
Never get mad at a kid for high blood sugars. It's just a number, and getting angry or using terms like 'bad and good blood sugars' makes a kid feel responsible or to blame for the diabetes when it's no one's fault.

First Blog Giveaway!!! - Closed

2009-10-25T13:23:00.000-07:00

Because who doesn't like free stuff...

I caught a cold and have been feeling very under the weather the last few days. Lucky for me my husband has really stepped up and took over JillyBean's D care - leaving me to get some rest and not spread my germs to the rest of the family. He also took care of both hyper dogs and our very fat and very lazy cat. Being sick made me realize how very lucky I am to be in this marriage, I can't imagine how incredibly strong a single parent of a T1D child must be. To do all this on their own? It can be so very difficult with just the two of us. If there are any single T1D parent readers out there - I just want you to know I think you are amazing.

2009-10-21T12:26:00.000-07:00

The rollercoaster of D...

I'm sick. Just a sore throat and achyness most likely caused by sitting in a very cold room that had the AC on at full blast yesterday at work. The AC might not be the cause of these germs but i'm pretty certain it's played it's part in how I'm feeling today. So under the orders of my husband I was ostercised to our bedroom where me and my germs could be contained. It was also a great excuse to play some Professor Layton on the DS. I love that game.

Jilly's bloodsugar has been high the last two days. At first it was 'high normal' then it was 'high alarming'. Usually her blood sugar is in the range of 150 to 250 at night after recieving her long acting insulin. Last night she tested in at 375! I gave her a correction, tested this morning and she was 335 - only a wee bit better. I had her test Ketones and the stick lit up with a new color that we've never seen before 'mild'. At this point I started to freak - mild? What am I suppose to do with mild?

I left a message for the doctor, cracked open the pink panther book and read that I should check and correct every 2 to 3 hours for mild ketones. The school nurse isn't always staffed at the school (we adore Jilly's nurse) but she handles several other T1D kids at another nearby grade school and as she has two schools has to bounce back and forth between them. So I called into work sick today - which technically I am even though I was just planning on working the day anyway with my good buddy Dayquil. But I can't commute to work and get to Jilly's school in time for a correction. So I curl up on the couch with a cup of tea.

At 10:30 I go in to her school and test her again. 386! I open a new vial of Hummalog - because at this point I think she's either getting sick or there's something funky with the insulin. I correct her and then call and talk to the nurse. We decide I'll call back for lunch to see how her blood stands. Which I do and what do you know her blood is now in the low 70's! Huge amount of difference. Jilly starts to experience the symptoms of a low so they jelly bean her up with Hello Kitty jelly beans no less, retest then give her half a granola bar for good measure. I decided then that they could let her have her lunch and just cover the carbs for it. I'll pick her up from school today - which she'll be cranky about because she wants to go to daycare and play with her friends. But better a cranky child with controlled blood than a kid passed out in a pile of legos.

Today I hate T1D even though I feel a bit of satisfaction that I'm starting to understand it better. We have a new rule to add to the list:

If BS won't go down switch to a new vial of insulin - then watch carefully for a low.

Restaurant Review - IHOP

2009-10-20T13:27:00.000-07:00

A chain restaurant should offer a wider range of nutritional information...

Before T1D Jilly LOVED to eat at IHOP. She's always been a big breakfast eater and like me loves to have breakfast food for lunch and dinner. On our drive from San Francisco to Modesto we finally decided to try it with T1D. It wasn't our first time eating out and we went in armed with a copy of the CalorieKing which has a very small IHOP section that isn't very kid friendly. When they sat us at our table we asked for a copy of their nutritional information. We've found that most chain restaurants have a separate little booklet you can look through. After a few confusing minutes of the server not understanding what we needed, and us having to explain not only what we needed but why we needed it so that he would finally get what we were asking for - he told us the information was in the menu. Now we assumed that meant there would either be a separate section in the menu that lists everything (Claim Jumper does this - and this is one of the reasons why we love Claim Jumper) or that under each item it would list the information.
We were a bit surprised to find that the information wasn't listed under each item, or listed in the back of the menu. Instead IHOP has a 'diet' page that has a few meagre choices with the information listed below them. The french toast meal Jilly picked had egg beaters (she likes her eggs sunny side), turkey bacon (which she hates) and a slice of wheat toast that wasn't really battered just toasted with a sliced up banana on it. It was healthy but looked more like hospital food than something she would actually enjoy eating. Who willingly likes to eat hospital food?
We like to stress to Jilly that she can still have a normal happy life with T1D, that she can still eat the same foods only we have to be smarter about it. We have to consider portion size and the food pyramid. Eating off the IHOP menu made her T1D feel very limiting.

Rating: D+
Overall: The banana was a nice touch where so few restaurants provide a kid friendly fruit option. But the menu choices were limiting and left her feeling disappointed. A chain restaurant that has such an extensive and well measured menu should be able to provide their customers with a better list of nutritional values.

2009-10-19T20:32:00.000-07:00

Traveling to San Fran with T1D

We are now back from our 5 day trip to San Francisco. This was our first time traveling with T1D and we did some things right and many things wrong. And the thing I was most afraid of (getting all the medicine through airport security) was painless and the security folks were very nice. We should of pre boarded the airplane with the 'young children and need extra time' group. It would have made it easier to get all the carry on's on board with out whacking everyone in first class along the way (although really don't they deserve it?) Alaska Airlines had Diet Cream Soda on board to Jilly's delight. She hates Diet Coke and almost everywhere else we went they only served Diet Coke. So kudo's to Alaska who also served 12 gram Cinnimon bagle chips - we will always try to fly with them first.
We visited with Jilly's Great Grandmother at her very nice retirement home. We ate two meals there and they were amazing to us. They even sold us a pack of Diet Root Beer when I complained how we couldn't find it anywhere, not even at a convience store. The food they served was perfect and they let us hobble together a balanced meal for Jilly off of the menu and the salad bar. I'll make another post later rating the other restaurants we visited, some of them were surprisingly awful and I don't know if we will visit again.
One of the things we did wrong was that we often forget the scale and the Calorie King book when we went out to eat. Neither fits in Jilly's supply kit so we kept them in a seperate backpack. Thankfully Ren was able to get to the Calorie King website and verify carb counts with his phone. But it was still frustrating. For our next trip I'm going to put together a small Jilly's Favorites book that will contain the carb counts for the basic foods she tends to order that way she always has the basics covered with her kit.
The rental car place didn't have the car we reserved. They tried to give us a big SUV that I said no to due to size and gas milage. They then gave us a black Chevy HHR. We named the car Tommy as it felt like some old 20's gangster car. It was a horrid car with very little room in it. Then at the retirement home an old man approached Ren and oddly asked if he was 'here for someone'. We didn't know what he talking about at first but it later came out that he thought Ren was an undertaker and the black rental car was a hearse. It seriously scared this old man who thought one of the other residents had died during the night and we were there to collect the body.

2009-10-08T21:59:00.000-07:00

Counting to 800...

Jilly's blood was 309 tonight and we were told that we had to do a half correction for anything over 300 at bedtime. Poo! But I really didn't want to do an injection as it's so close to the line. Then I remembered this book which I read in the hospital. It helped me keep my sanity during that stressful time. So R bought us our own copy:

One of the tips is to run around the house to lower blood sugar. A messy split entry isn't really a good running house. So I had Jilly jump on the mini trampoline while counting to 800 (her choice on the number). We then retested her and her blood was at 250! Much better. The mini trampoline has always been useful for getting her to exercise a bit more, but now with T1D I think it'll be a great tool for the winter. We have her bed up on blocks and store it under the bed when not in use.

So another new rule in the house is:

When BS is high jump.

2009-10-07T22:18:00.000-07:00

Injections...

I feel like throwing confetti in the air. Bean has done her last 6 injections by herself. By herself! The only help we gave was encouragement and double checking what she dialed up on the pen. I feel like we can actually handle this - well once we get her blood sugar down. It's still 50% of the time too high. But her doing her own injections is a huge accomplishment.

We're doing an incentive program every time she takes her own blood sugar she gets one sticker for a bookmark, taking her own injections gives her 5. When she gets 30 stickers she can trade her bookmark in for a little present. So far it's been a great motivator.

2009-10-06T22:42:00.000-07:00

One month with D...

Today is our one month anniversery with D. It's been hard, and rough but also amazing. We had a doctor's visit yesterday and Jilly is now giving her own injections. She's resisting it a bit and is still sad to do them. But it's easier...every day it's easier. And we are sticking to our guns and not letting her talk us into doing it for her. Which she tries to do with every injection. It's hard but she will be better for it. Today was also the first day I've felt relaxed with it all. Like seriously relaxed and ok. I mean it's never far from my thoughts - but today it felt like a lighter burden, it was (dare I say it?) normal.
And the doctor's office yesterday she met an amazing boy who's one year older than her. A real cute kid. He showed her his new Omnipod and went over it's functions. He'd only been on it for a week now but he was like a sales rep - impressing even the nurses. One thing we've noticed is that all the T1D kids we've met are brave and amazing. Very bold and self assured. And even the T1D adults we've met share this trait. And the parents of T1D are so supportive, it's like belonging to an exclusive club with this shared experience and support. A month ago I couldn't have imagined we'd be where we are now. Where will we be in two months? Hopefully happily getting injections and counting carbs correctly with better blood sugar control. Did I mention how much I love restaurants that have nutrional guidelines? Thank you Claim Jumper and Red Robin!
We also got our Omnipod trial yesterday. We haven't opened the box yet but will soon.

On the fun side of things I made Jilly a bento for lunch today. I love bento boxes and have amassed quite the collection. Now they serve multiple functions - not only do they keep her food but they also impress her classmates who 'oh and aw' over the tiny cuteness of the containers. Having D doesn't seem so bad when your lunch is adorable. And the size keeps the portions right. I didn't do much decorating inside this box this time, but it's nice and tidy. Later I'm going to do a blog give away for some bento items for T1D kids. Because seriously they are great for portion sizes.

Contents of Jilly's lunch:
Crackers: 5 at 2 grams each
Cheese Stick: 0 grams
Little cheesey hotdogs: 5 at 0 grams
Bar-b-q sauce: 0 grams (special no carb one)
Bannana: I believe it was 24 grams
And a special chocolate: 5 grams

Yummy right? But here's the sad thing - I didn't have time to make a lunch for myself this morning so you want to know what I ate? A stale doughnut! It was nasty and unfullfilling. I'm sure there's a lesson about better time management there...

2009-10-01T21:49:00.000-07:00

Rules for D...
Bean and I are reading Meg Cabot's book: Allie Finkle's Rules for Girls. It's a great story so far (we are only on chapter four). Out of all the rules in the book my favorite has to be 'Never own a pet that can poop in your hand'. I agree with that rule.
The book has me thinking about D, about how it's different for everyone and is a never ending challenge. It's a handful of poop on some days, other days it's two handfuls of poop. And yet it has it's rules. Like taking injections before you eat and don't take a shower 2 hours before (or was it after) you have an injection. Keep multiples of everything. Keep CakeMate Gel in your glove box, purse and next to the bed. Lot's of rules! I'd like to add this to the rules of D -

When you get home from work and everyone is cranky insist on a blood test.

Because most likely blood sugar is to blame. And fixing that is much easier than running away to join the circus (even if as Jilly pointed out the circus isn't in town).

Last carb free ice-cream

2009-09-30T23:05:00.000-07:00

Uploaded some pictures and found this one on my camera. This is two days before D-Day and is her last 'carb free' ice-cream. Looking back (and knowing what I know now) I can totally see that she was sick then.

The first day

2009-09-30T21:26:00.000-07:00

Our own little D Day story...

I'm now the mom of a Type 1 Diabetic. Jilly was diagnoised Sept 6, 2009 after a week of odd to us but normal to T1D symptoms. The first odd thing was the frequent late night trips to the bathroom, the thirst, then the weird mood swings which included lots of shrugging and "I don't knows". But when Jilly then asked to go to the doctor we knew something was wrong.

First we went to the local clinic who then sent us to Seattle Children's Hospital. We were there for three days as they put her on IV's to clean her system and trained us how to manage it. Our stay was amazing and all the nurses on the wing were friendly and very pretty. When we started we were in shock, overwhelmed and scared. But they promised that by the time we left we'd have the tools and understanding to manage her needs. I didn't believe them at the start, but they were true to their word. They told us it would be OK and this new life would become the new normal, and although it's too soon for it to be 'normal' yet, I can see as a family we're reaching acceptance.

So now she gets injections before every meal, she does her own finger pokes and tests her blood. She's even starting to learn to do her own shots thanks to her wonderful Endo - who's promised us she'll be able to do it on her own by summer. And we as a family are learning to grow and live with T1D.