Let's get Pumpin' already!!

We've been going through the "ordering of the pump" process since about mid-June. Today was the first day that I feel like we're getting somewhere. It's probably because we were asked what color pump Cham wanted (pink, of course), how long of tubing she needs, and what type of infusion set she wants (angled). We were also told how much it would cost us up front or out of pocket, and monthly. All I can say is, thank God for good insurance! So, hopefully within the next couple of days, we get the message that it's shipped and then we have to meet with someone to help us get started with it. Nothing like waiting until the end of the summer to learn something stressful and different than normal. Ugh.

Cham's been dancing all summer at her studio, taking tumbling, going to dance intensives and working her tail off. She's had the opportunity to learn from Alison Holker from SYTYCD and Anthony Gonzalez who appeared in the new Step-Up Revolution movie. She will attend a week long intensive at the Houston Met August 6 - 10 and learn from more great choreographers.

School starts August 27th - new school, new teachers, new nurse...Geez! Can we please add a little more to our plate? Well yes, certainly, let's get Cham a pump right before she goes off to 6th grade!! Woo. Hoo. We are waiting to see about the Dexcom CGM until she gets used to wearing the pump. I would love to be able to look at her levels hourly without pricking her. Especially with the scary aspects of the pump.

Her last visit to the Endo revealed that her A1C had gone from 7.6 to 7.3. Not too bad. She's grown since April's visit and I think she's grown even more in the past 2 weeks! Dr. Hwu likes her numbers but wants her to test before bed. A BAD habit she has developed, and we've let her continue to develop it. She eats late at night after dance so the "bed time" we would test her falls around 10 PM. I don't feel like testing her or waking her up at that point so we've let it go. But, NOT with the pump. We'll be testing every 4 hours in the beginning to make sure she's leveled out.  One thing Cham has figured out that she likes when she has a low at dance are the new Level Life glucose gels that give her 15 grams of carbs, but don't make her numbers crazy at the next meal like a juice box would. She learned this trick from her new favorite diabetic dancer, Ms. Catherine - The diabetic ballerina.

As soon as we know where we are with the pump process, I will post again. Thanks for reading!

Slumber Party Nightmares

Sounds like a horror film, right? Ugh - the dreaded question anytime she's hanging out with friends..."Can Cham spend the night?" And then I get "the look" from Cham - it's the please-Mom-let-me-be-normal-and-spend-the-night-away-from-you look. This decision stinks for me because as much as I want her to lead a normal life - the fact of the matter is, she can't. To ease my mind in this situation, I have created a sheet that goes with her to every friend's house. It just helps the parent understand what a high, low, and her symptoms for either. It always depends on the parent, and how far away they live from our house as to whether or not she can stay the night with her friends. Cham still relies on me (or my mom or her dad) to give her the breakfast and dinner mixed insulin shot. She can't draw it without the risk of overdrawing or accidentally mixing the two in a vial. She does her lunch on her own (draws and injects). But, since I have to do the AM and PM shot, spending the night with someone gets a lot harder because I have to go over to the house (or meet them at the restaurant) to give the shot at dinner, and then wait on her call in the morning to do the shot then, too. It's a lot of traveling back and forth which is why I always try to flip the question back at her friends - "Why don't you come spend the night with us?" This tactic usually works and I sleep easier knowing she's near me. Otherwise, I'm texting her constantly - how do you feel? have you tested? what's your number? why are you still awake at this hour? tee hee.. Anyway, this is just one of the MANY reasons why getting on the pump will make life easier for her when it comes to this particular situation. She will be able to bolus at meals and sleep in at a friends rather than me wake her up because the Lantus has worn off. I know I will still bother her with the texts, though - that's a lifelong hang-up that she's going to have to deal with. Seriously - what T1 parent has had a decent night's sleep since their kid was dx'd? I've said it before - I haven't slept since October 19, 2010.

So it's official - she's getting the Ping. We're still waiting on it to run through insurance, and we'll have to be trained, but Cham's excited and really can't wait to get started.

Update Schmupdate....

Good Grief! Post much? My laptop has been out of commission for about 7 months which is where I really like to post from (in my bed). I hate sitting at the computer desk after everyone has gone to bed. So, needless to say, I have not been posting due to lack of technology and our busy lives. So quick update on us...

This has been a stressful school year - not because of diabetes problems, just because of the problems that diabetes can create. Chad has left education altogether and has entered a whole new world as a process operator. This opportunity has given our family some financial breathing room. Diabetes is an expensive disease and we want Cham to have the best that is out there to treat it (aside from offering her our own pancreas..so wish we could really do that).


Cham ended her school year as a 5th grader and will go to a whole new campus next year. New nurse, new surroundings, new faces, etc. She's worked hard this past year and has earned her way in to a program called OMEGA, which puts her with hard working kiddos who love school and projects (yippee). She's apprehensive at the moment, still says, "I'm nervous about next year." Once we take her for orientation, all of us will feel better. For me, this change has me focused on several zombie thoughts...  "must talk to all of her teachers in a 504 meeting, must talk to the nurse, must look a cafeteria menu to see carb counts.." The nurse will be new to us and the school as well - the former nurse left (of course, the one Cham had met at an orientation on electives).

Cham has had an excellent dance season! Her team has really come together and finally gelled at our last competition. Her solo piece has done awesome, too - she came in 2nd overall at the last competition. In fact, before she went on stage, she and Ms. Rebecca (her dance teacher since she was 3) were both wiggin' out because she didn't eat all of her lunch and was going low on us. We pumped her full of juice, held our breath, and shoved her out on stage. Diabetes danced in the wings that time! Phew!

Cham and Angell duet

Cham also had a duet this year with her 8th grade friend, Angell. They dance beautifully together and it placed 1st and best overall at the last competition.








Colton has us really busy right now doing baseball as an ALL-STAR! It's been a long baseball season and it seems like it's never going to end having to play a game every night here lately. Last night when we got home, I was giving Cham her shot (in the butt is where she has to have to big ones - Lantus plus Novolog) and he snuck up and asked if he could push the plunger, so I let him much to his sister's chagrin. He did a good job, took it slow - she didn't complain.

Okay, so all that hype about the Omnipod and getting the pump....to expensive to manage at that point, AND she didn't like how it felt at dance. Currently, I have her considering the Animas Ping. When we were at our last competition, she and I were in the bathroom waiting in line and the mother in front of us tells her daughter, "disconnect your pump so you can go on stage.." I immediately asked her if she was T1 and told her we were considering a pump. She said what MANY others have said about the pump - "We love the FREEDOM." The fact that she can take it off for the stage and that we can move it around on her leo depending on which class she's taking, appeals to Cham. We also found the blog: A Diabetic Ballerina - she wears an Animas Ping and shows many pics and talks about how she sews pockets into costumes, etc. So, at the moment, we're focused on a Ping and filling out the necessary paperwork.

Other than that, we are settling into a summer without grad school! Of course, once I get my freedom, Chad has to go and get a job that places him on shifts. Oh well, "gotta do what you gotta do." I know now that I'm not focused on library lessons, I will be able to post more and hopefully get more followers! It's tough being a diabetic pancreas, I mean parent!

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.