Disney & Universal Trip!

Sorry for not posting on Miss Priss for so long. We have been busy this fall - dance, football, soccer, jobs, LIFE!

On the T1 front, we have decided to put off the pump for awhile. Finances aren't where they need to be to be able to get her one, so we're waiting until we feel a bit more secure. We're fine right now with MDI and Cham doesn't mind keeping to her routine (nor do we!). Her numbers are WONDERFUL!
Aside from our Disney trip, she has maintained a pretty good average. Our next Endo visit is on December 14th!

ORLANDO!

Overall, we had a nice trip despite her numbers creeping pretty high at times. She would get frustrated and cry about them, but we reminded her about not knowing exactly how many carbs she was eating at meals. Occasionally she would be on target and that provided some relief to all of us. Even Colton was getting upset by her numbers!

Wait times and rides:
We really loved the Guest Accomodation Card (GAC) that Disney provided for us because her numbers were so unpredictable. It allowed us to get on rides through Fast Pass entrances and we barely waited at all. It was a great relief to be able to get on and off rides within a 30 minute or less timespan. We did all 4 parks in one day on our last full day at Disney because that pass allowed us immediate access and low wait times. Thank you, Disney!! At Universal, we stayed on site, so our hotel card was our Fast Pass. There were a few rides that we waited and had to leave our stuff in lockers (which made me nervous) where Cham complained of needing a snack and I had nothing! After experiencing that, I went to Guest Services and they gave me a card to give the Universal crew member working the ride and they would provide a "return time" for us if the wait was long and we had to lock up our stuff. This really didn't help much because we had fast passes onto the rides, so we just made sure she was good before getting in a line.

Carbs and other stuff:
Of course, having Mop there helped tremendously. With three adults discussing and soundboarding carbs and meals, you can't go wrong! Things and ideas I stole from others for the trip: Ask hotels for a "sharps jar," bring The Calorie King book, eat what you know carbs on already in order to better guesstimate, bring plenty of diabetic supplies - extra strips, alcohol swabs, syringes, lancets, additional meter and ketone strips, and (what I forgot about) INSULIN! I should've known that her high numbers would require MORE insulin and I should've brought an extra bottle of Novolog (fast acting). I was constantly nervous that I would drop the bottle in the park bathrooms and we would be out of luck. I won't forget an extra bottle next time. We also carried a really sturdy backpack with plenty of room and pockets into the park. In the backpack we put: her test kit, insulin in a FRIO pack, syringes, snacks for highs and lows, water bottles, the Calorie King book, my stuff - camera, wallet, etc. Yes, they do check the bags before you go into each park, but they never said anything about her stuff or the food.

We will definitely return despite the carb guessing! We had a lot of FUN!!

Latest and Greatest

I know I haven't blogged in awhile, but it's been a busy start to the new school year. Cham and Colton are well into dance and football, and Chad and I are knee deep in library books and body searches (don't ask).

We had our very first 504 meeting with our lovely new assistant principal and school nurse. It went well and we were able to get her into the system as a student with a medical need. It's important that it be there so that she can be protected throughout the rest of her public school career.

So far this school year, Cham's blood glucose numbers have been somewhat consistent. She will hit a low in the afternoon that we've been trying to correct by changing her I:CHO at lunch. We haven't had to increase Lantus (knock on wood) in awhile. I'm guessing that what we're doing now is alright - the numbers don't lie!

I'm so happy Cham's school is doing the School Walk for Diabetes this year! Her P.E. coach asked her to act as ambassador to the walk, so she's been visiting with some grade levels and discussing the myths about diabetes. We've also managed to turn it into her Science Fair Project, so we're killing two birds with one stone! Her question is: How much do people really know about Type I Diabetes? She's giving people a T/F quiz and them letting them look at their results after they're done. She thinks that people will not know too much about it....we shall see.

We take our "PUMP" class on November 7th, where our hospital will teach us about using an insulin pump. We have to take the class in order to be given the "prescription" which allows us to purchase one. I've been doing way too much research on pumps and I know all the good, bad, and ugly about each brand. I'm now at a complete loss when it comes to making a decision. Ultimately, it's up to the Diva, and we'll know more after the class.

We're about a month out from doing our first JDRF Walk for the Cure in Houston. This year, it's at Reliant Park. We've made sure that Cham's pic will appear on Ambassabor Row! We're working on t-shirts and getting ready for the big day.

Finally....the Diaversary (I call it D-Day, honestly) is approaching, as well. Cham was diagnosed on October 19th of this past year, and wants to do a Diaversary party where she feels that she should be able to eat what she pleases while we inject her with insulin. We are planning to do it on October 22nd, and she has yet to inform me of the menu. She has created an invitation for it, as well. I guess invites will come soon!

Ready for school...and a PUMP!

Okay, some of you know that we were anxiously awaiting the Endo appointment because we knew her pancreas was kaput and we wanted to ask if she was ready for the pump. The stars were aligned because she asked us instead if we were ready to try one! I informed her that we had demo'd the OmniPod the week prior, and she offered her opinions and suggested to us that we demo the Animas and Medtronic pumps, too. So now we're waiting for the "Pump Class" to open up (hopefully in October) so we can be released and approved to begin using one.

As for school....I honestly felt like we were preparing for a hurricane as we were walking in with our 24 pack of water, Hi-C juiceboxes, "Lock Down" emergency boxes for the teachers (she has 3 this year), snacks, doctor's orders, 504 rough draft, and diabetic supplies. I'm glad we have Meet the Teacher before we begin the school year because I did not want to carry all that in on the first day of school! We were able to visit with our WONDERFUL school nurse and Cham was happy to see her, too. I think it helps that Cham knows she's in good hands with Nurse Swartz, and they have developed a great relationship throughout her first year of diabetes. Shout out to Nurse Ratchett...we lurve you, lady!

The Honeymoon's Over...Probably.

For the past two months we've been playing "catch up" with her BG levels. Her numbers go up, we adjust the Lantus, they come down. A week later, they go up again we recalculate her I:CHO ratio, and they come down. Two weeks later...the numbers start climbing and the cycle starts again! The fact that we can't get a grip on it, tells me that her pancreas has decided to quit helping us out. I'm hoping that her readings over the past two months don't effect the outcome of us getting approved for a pump. I would think that her Endo would want to help us by giving us the opportunity to get her more evened out via the pump.

Venting time: I hate it when people pronounce it: "di uh beat us." I want to scream: it's not gonna "BEAT US", it's pronounced "beet eez." Honestly, with the numbers we've been chasing here lately, I feel like it's trying to "beat us," but the OCD in me is not going to let it. With the motivation of a number crunching family, and Cham's sad face when she sees a high number, we won't let it beat us. We've got this. Oh, and Pancreas...R.I.P.

Fingers, toes, and syringes crossed!

It's official, we love the demo OmniPod and it doesn't even deliver her insulin yet.

Reasons why we love it:
1 - The mere idea that we won't be sticking her 3 times a day with an insulin filled syringe if we are approved to start using it.
2 - It withstood every test we could think of - showers, swimming, dancing, sleeping, doodling on it, and other daily abuses. The tape peeled up slightly around the edges, but it never was yanked off when she would rip her clothes off without caution.
3 - Finally, and most importantly, she would forget that she had it on. This was a big one for me because if she complained even once about "feeling it," or it "bothering her," I was going to throw in the towel and not think about a pump again. She would hit it on the wall, roll on it, catch her clothes on it, and say, "Oh yeah, I keep forgetting about the pod!"

She went through several nicknames, but the one we doodled on it in the picture below is her official name for it: "iPanc." We are keeping "fingers crossed" that our endo approves of us trying it out and taking the pump courses that the hospital requires before beginning pump therapy. I'll keep you posted!

Faux Pod or Faux Pas?

Cham is on day 2 with the OmniPod demo. We put it on the back of her arm first so that it would be out of the way for dance and mainly so that her friends could ask, "What is that?" This way, it gets the explanation out there and she can see if it is noticeable or troublesome while she dances. So far, so good. She's showered, slept, and danced in it - next we will swim. She's hit it a few times on the wall, and put on her shirt without remembering it was there and it caught and pulled, but never came off. She's nicknamed it: Substitute Pancreas and Frank the Panc. Personally, I like Frank the Panc. Now...if we can only convince Cojack that it's not a "mute button" to shut her up when she's saying something he doesn't want to hear, then we'll be good. He actually pushed it and said, "be quiet" when they were arguing in the grocery store yesterday. Siblings in the summer, gotta love it. We see the doctor next week for her check-up and we're hoping to get the clearance to use a pump which, hopefully, will be the OmniPod.

Cards (not Carbs) for Sale!

Cham's JDRF card design that was entered in a contest back in March is now up for purchase on the More than Cards website! After you click on the link, it will take you to the page her card can be seen. Currently, it's located on the "Customized Holiday" page of the site. From there, it's the fourth row from the top, fourth design from the left - "Seasonal Snowmen." I was hoping they would offer to allow purchases in increments of 25, but right now the lowest amount you can buy is 50 cards. Which, of course, we bought! There are plenty of other choices, but none as cute as Cham's, obviously. Thanks for supporting Cham and JDRF!

Diabetes Applications for the iPhone

A few of these apps make T1 daily life much easier to manage! In fact, Cham and her school nurse use the Diabetes Calculator everyday at lunch when calculating her insulin dose. I'm sure there are many out there, these are just the few that we got uploaded immediately after her diagnosis.

Diabetes Personal Calculator: This app allows you to enter settings for your insulin to carb ratio for each meal, your correction factor, and your target BG. If Cham is lower than the target, it tells her how many carbs she needs to eat to return to target. If she's higher, it gives the suggested insulin adjustment to help bring her down. We love this app!!

Go Meals: This app has pretty good listings for restaurants, foods, homemade foods that you can add, and it allows you to build a meal with "Today's Plate." We use it if we forget our Calorie King book and we're out to eat.

Diabetes Buddy: This app is like a journal and we used it constantly at the beginning of her diagnosis because it has the capability to send BG levels via email. We would track her levels every time she tested and send them to the nurse if we had issues or questions about how to adjust her insulin. It has other cool features like daily activities and carbs you can enter, and it has a section to enter your medication (units of insulin) so you can remember units for each meal. This is something we are trying to get Cham to use independently so she can track her own levels and doses.

Birthday Parties with the 'Betes

Here are some lessons I've learned this first year with Cham's T1 and her attendance at parties. Whether it's birthday party, a holiday class party, or a friend get-together, I now have a few tricks up my sleeve when it comes to these events.

1 - Call the host. I have put myself in the habit of contacting the host to ask what they plan on serving so that I can look up the carbs ahead of time and I can inform Cham of her options before we get there. This typically avoids any negotiations with her because she knows what is going to be there, and if she doesn't like some of the items, I bring her a bag of chips or sliced apples to help add to her meal if she needs them.

2 - Prepare for Unplanned Negotiating. Cham sometimes thinks that she doesn't want the slice of cake, but will change her mind at the last minute. I always tell her, as long as I have already planned it into your insulin shot, you can have it. Unfortunately, she sometimes pouts after her shot because she's regretting not adding the cake. This is when I bring the slice home for her to have with dinner or as a snack if we're still at the party when she needs one. I also tell her to go run around, play, swim, or whatever to earn the extra carbs (for every 30 minutes of strenuous exercise, she earns 15 carbs). If she had the pump, this would be a no brainer - we could simply bolus her when she added more carbs (another reason why we are debating the pump).

3 - Increase insulin a bit. Knowing that Cham is about to eat high fat, sugary foods at a party has taught us to add just a bit extra insulin to her injection. For example today, she wanted the chicken nuggets (9 carbs), BBQ dip (11 carbs), Cheetos (15 carbs), and caramel dip with apples (19 carbs), which brought her to about 54 carbs. Our iphone app (love this diabetes calculator) told us that she needed about 5.2 units - we rounded up to 5.5 units because of the nuggets and dip. We probably could've gone to 6.0, but I feared a "low" because it was a outdoor swimming party and I knew she would be burning carbs.

4 - Expect the "HIGH." No matter what, we always seem to run high on party days. They are very difficult to tackle and we have only come out on top a few times (BG at target). We just do what we know to do, and let it go if her numbers are ridiculous. (Here's where we sing the Annie song...Tomorrow, tomorrow, I luv ya tomorrow, you're only a day away!)

The "LOW" down on Blood Glucose Levels

When Cham's BG level is low she has several key phrases that she uses with us to let us know.
1 - "Mom, I feel low." - When she can verbalize it, I know she's at about 60 - 70. She can feel her BG level drop and knows to test and treat it with carbs.
2 - "My legs feel jiggly." - When she says this, I know she was busy doing something else and wasn't paying attention to her body. She's let it go on too long and is in the 40 - 50 range.
3 - "My head hurts." This is a new symptom that she's developed recently, and it occurs mainly when she's swimming and her level drops. I think it has to do with being in the water, then getting out, and her body recognizing the need for carbs.
4. "I'm hurting." When she states this, I know she's pretty low, because she starts cramping and she has no other way to say it.

Sometimes, she gets really irritable, whiny, and cranky. This type of low occurs when she's playing in her room, chilling in front of the TV, out to eat and can't get what she wants (big ice cream sundae) and after dance, at times. I feel like it creeps up on her and when it does this, she gets overwhelmed with this emotional response. We call it her "alter ego," because she is most definitely not herself. The first time she threw a fit, I thought she was being bratty, so I griped her out. After we understood it as a low, from then on we just say one phrase..."go test." It's crazy how just giving her a juice box can return her back to us. Seriously, it's like the juvenile version of Jekyll & Hyde.

To pump or not to pump?

So I've researched a variety of pumps, requested tons of information, and even have a demo for Cham to try after we talk to our doctor. We currenty manage her diabetes with injections three times per day and are looking to reduce the amount of times she's poked each day. I'm still torn about the idea of her being "tethered" to something, especially since she's a dancer, and spends roughly 3 hours per day in a leo and tights. Where will she put it during dance? Will she feel different wearing it to school? She is, after all, the ONLY person with T1 at her school. Will the pump just make it worse? I read about the depression that can occur with some after they've worn one for a month or two. It supposedly "sinks in" that they are dealing with this for life...or until there's a cure. At the present moment, she's all about it and wants to try it. It's her T1 and she has a right to manage it as she pleases. The mommy in me wants to keep her happy, but what if the pump makes her unhappy? We go to the doctor in August and our plan is to ask if she feels Cham's a candidate for the pump. Until then...prick, poke, repeat.

Summer "HIGH" lights

Cham's had a great summer despite the 'betes! Yes, vacations have sent her father and I into insanity mode due to the flux of her BG levels, but she recovers and prevails every time.

We found out from More than Cards that one of her card designs was chosen as an "alternate" and will make its debut on the website in August. We are excited to be able to order cards with her hand-drawn design soon!

Cham has been a dancer at the same studio since she was three. She is now ten and has been on the Competition Team for her studio for the past three years. We traveled to Chicago for her team this summer and they did really well! I can't tell you how frustrating it is to have to eat out most meals and depend on restaurants for carb counts. Most of the time the waiter/waitress looks at you like you're some crazed dieter when you ask for the nutrional guide. It surprises me, more often than not, when the manager of the restaurant doesn't understand T1 and suggests low-calorie plates or items, when I know I've said "I need the CARB count."