Friday, August 6, 2010
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.
Monday, August 2, 2010
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.
Wednesday, July 28, 2010
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.
Thursday, June 10, 2010
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.
Wednesday, June 2, 2010
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.
Tuesday, May 18, 2010
"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.
Monday, May 10, 2010
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.
Wednesday, May 5, 2010
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.
Thursday, April 29, 2010
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.
A T1D Mom
Tuesday, April 27, 2010
Monday, March 29, 2010
Crochet string or yarn
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.
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:)
Sunday, March 28, 2010
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.
Sunday, March 21, 2010
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.
Tuesday, March 16, 2010
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.
Monday, March 15, 2010
There's something so peaceful and normal about a child using an everyday object as a toy.
Tuesday, March 9, 2010
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.
Friday, March 5, 2010
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.
Monday, March 1, 2010
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.
Sunday, February 21, 2010
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.
Monday, February 15, 2010
Wednesday, January 27, 2010
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.
Tuesday, January 19, 2010
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.
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...
Monday, January 18, 2010
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!
Monday, January 4, 2010
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!