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!

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.

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..

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

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

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.

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

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.

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.

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.

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.

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...

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

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

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.