Monday, June 29, 2009

Diabetes? I Hate It.

Okay. I tell my kids not to use that word, "hate." It's such a definitive term. I mean it's the ultimate negative emotion you can have about something. I just think it's appropriate here. I hate diabetes.

We've been trying to stay so focused around here on C's blood sugar numbers - trying to keep her averages down so when we go in for her endo appointment next month, that tricky A1c number will be lower. And, all things considered, I feel like we've done a good job the last couple months.

Then came Saturday night. We had In-n-Out for dinner and she got bolused what we normally do for this family-favorite meal. But, by (our) bedtime at 11:oo pm, she clocked in at a whopping 327. Now, that was strange, because we can usually gage that meal pretty darn well. I corrected her number and set my alarm for 1:00 am...just to make certain she's coming down.
_________________________________

BEEP. BEEP. BEEP. I fumble for the clock. I gather C's meter and head down our squeaky hallway. (Why, in 12 years, we've never fixed this? I don't know.) I test her. 387?! Ug and double ug. I check out her last sight change. That's right...it was just the day before. I check the tubing...looks fine. I check the infusion site itself. Everything appears fine. I correct her number again. Back down the squeaky hall. Back in bed. Alarm set for 2:45.

BEEP. BEEP. BEEP. 2:45 am. Rinse and repeat. 307! Something's definitely not right. At this point I should have really gotten ye olde syringes out and dosed her that way. But I could not even think straight. I corrected her and set my alarm once again.

BEEP. BEEP. BEEP. 4 in the morning. The sky was starting to lighten up already. Squeak, squeak, down the hall I went. 307?! I shook myself awake. Must change sight, I thought. I raced downstairs and prepared the new reservoir. Back upstairs with prep wipes and new infusion set. I turned C over and proceeded with our ritual. Now, I was fully awake. I was mad at myself for not changing it sooner. My little girl. She didn't even flinch. She rolled right back over and fell asleep again.

Well, I set the alarm again. This time - 5:30 am. After the beep beep beeps, I nudged Dan. "Can you please check her?"

When he returned, he told me she was at 185. Finally coming down. I took a deep breath. And then another. All I could do was lay there and think about how much I hate this disease. Was it the infusion set? Was it the burger and fries? Who knows! I could go on and write about the scary low of 50 she had about 5 hours later...but I'll save that for another time.

Friday, June 26, 2009

Low Carb Treats

It's pretty much a given around our home that when you open the fridge/freezer, you will find sugarfree popsicles, "no sugar added" fudgsicles, sugarfree jell-o, string cheese...blah, blah, blah. Can you tell, we need some new snacky-snack foods around here!

At the grocery store, sometimes I'm simply on auto-pilot. S.O.S....someone, anyone...help! What are some of your low-carb or sugarfree goodies that put a smile on your little one's face? I mean a kid can only have so much sugarfree jell-o.

Wednesday, June 24, 2009

I Guess She's Growing Up

Sometimes it's hard for me to stretch out of my comfort zone and teach, hand over more responsibility to C in managing her diabetes. It's not that I think she can't do certain things. It's just that it's become habit, my habit to finger check, carb count and dose for her.

A lot of times, I'll have her check her finger. She's even begun showing interest in checking the carb counts on snack boxes. At 7 years old, she actually knows to look at the serving size and total carb numbers! But, I'm not at the point where I allow her to guesstimate or even input all the info into her pump without supervision. Sometimes I make mistakes and know how easily things can be overlooked. Then we're staring at a scary low or a wicked high. I don't want to put all that on her yet. Sometimes...I even second guess myself.

However, something happened last Sunday at church that really made me stop and think "I guess she's growing up!" My brain was not fully functioning that morning. And as is our normal routine, Dan walked the kids to their respective Sunday school rooms. I failed to remember that this Sunday was promotion to the next grade room. New room = new teacher = new diabetes education = did not happen. A big oops on my part, I know.

Although class is only 1 1/2 hours maximum, many times there will be a snack given, a special treat. Well, since this was promotion Sunday, of course there was cake to celebrate! Why wouldn't there be? Anyway, I hadn't remembered that the kids would be switching classrooms and so there was no plan in place.

When I went to gather the kids after service time, I walked up to C's new room, kind of gasped inside my head when I realized we hadn't even mentioned anything about diabetes to the new teacher. I could see C inside the window putting her meter in her bag. She smiled at me and came to the door. I could also see a few pieces of sheet cake sitting on a table as she exited the door. I pulled her aside and asked if she had had some cake. One of her little friends popped her head out the door. With a smile she said "Oh, yes, C checked herself and I helped her and we had cake!"

I guess the look in my eyes signaled trouble to C and her eyes filled with tears. "Honey, I'm not mad at you," I said. "I just need to know how much you ate and what you put in the pump." After she calmed down, I took a look at the pump history and saw her BG number and the carbs she had estimated for the piece of cake. She actually put in 25 grams...exactly what I would have guessed! I suppose it just shocked me that she had done all of it on her own...well, with her friend's help :o). I hugged C and told her how proud I was of her.

I said "Mommy just needs to know about these things. I love you soooo much and I want to make sure everything is entered right so you stay feeling great. Okay, sweetheart?"

"Okay, Mom."

We'll have a better plan in place next Sunday. I'll begin by meeting the teacher!

Monday, June 22, 2009

Disney World & Diabetes

This summer, we are trying really hard to be frugal. I know a lot of people are trying to do the same. We may be going to the beach for a few nights (house-sitting a friend's place). And we more than likely will be spending time in the Monterey area (parent's place). But as for a big trip...none planned.

Our BIG trip was last summer. I came across our pictures from last summer's trip to Disney World in Orlando, Florida. I decided, "garsh, as Goofey would say, that was a huge trip for our family...first flight for the boys...first major flight with diabetes...I should write about it!"
...so...that's what I did.
___________________________________
We were sooo excited! Don't let middle C's sleepiness fool you...We awoke at 4 am to catch our flight from LAX. And I doubt any of us slept much the night before. We were going to DisneyWorld!!

In preparation for our trip, I had read up on, talked to people about, and had even questioned C's endo about travel and diabetes. I had purchased an expensive "cooling wallet" to keep the insulin cool during our travel. I had packed plenty of pump supplies and prescriptions and dispersed them between mine and Dan's carry-on luggage. I had looked into a second "emergency" pump in case C's went on the blink. (Medtronic assured me that a new pump could be over-nighted to us if need be.) I had even remembered to pack syringes in case of pump failure. Glucose tabs, snacks galore, we were set!

While reading, reading, reading, I came upon this article written by a dad of a type 1. It was great! He gave good tips for dealing with diabetes while going Disney-style. The article is called "Disney with Diabetes" and you can find it over at DLife. I thank Bennet "BadShoe" Dunlap for his candid and helpful hints to make the vacation pleasant (despite that varmit called diabetes!)

Here are just a few of "BadShoe's" tips that we used:

  • packed way-lots of diabetes stuff...in two bags...carried on (you never know when a slippery insulin bottle will fall onto a hard tile floor!)
  • asked for a sharps container from our hotel's front desk
  • ordered groceries delivered to our room from local market (case of water...saved us lots $)
  • ate most breakfasts in room (cereal & fruit = easy carb-counting for at least one meal per day)
  • carried water, snacks and Crystal Light into parks
  • tested blood sugar often
  • did lots of homework to plan must-sees in each park
  • had a ton of fun!!
It really was a wonderful family vacation for us. And I highly reccommend it. If at all possible, just don't plan it in the most humid part of the summer! The other thing we did that helped was to pay for everything up front...accommodations, meals, park tickets, airfare and on-ground transportation. We made reservations at the more elegant (pricey) restaurants since they were prepaid. That took quite a bit of stress out of the actual vacation time. I had checked pricing out with our local AAA and then actually booked everything myself online through Disney and Priceline.com. I ended up saving nearly $800 by clicking the mouse myself!

So, off we went. And like happens when I think C's numbers will be way out of range, she did pretty well on our week away!...except for the plane ride there...

...positive stress, perhaps?

So many princesses...

...

...so little time!

Animal Kingdom - unexpectedly my favorite park.

The Magic Kingdom

Hollywood Studios...fun, even in the rain!

Where else would I even consider spending $12 on a balloon?
And...we finally found Snow White on our last day. (whew!!)
______________________________
So, take that diabetes!! We had an awesome time, despite your tagging along!

Wednesday, June 17, 2009

10 Things I Wish I Knew When I Was a Kid

With age and experience, comes wisdom.

For some unknown reason, I have been thinking a lot about my childhood. What it was like. The feelings and emotions about certain situations I experienced. Maybe it's because summer is upon us...and my kids are driving me mad with expectations (swimming, beach, Raging Waters, sleep-overs, camping trips, movies, you name it).

Here are some things I wish I knew when I was a kid. I hope my kids will learn them.
  1. It's okay to have "nothing" to do. Soon, you will have too much to do. So enjoy it.
  2. Sometimes friendship is found in the least expected places.
  3. Mom says "no" to some things for your own good.
  4. In swimming, when your head is in the water, that's the best time to exhale.
  5. Sleep really is healthy for you.
  6. Sometimes, speaking up for yourself produces great results.
  7. Forgiveness releases you from misery's clutch.
  8. You should always hold the door for the person behind you.
  9. Sunscreen is a habit worth forming.
  10. Money has no expiration date. It's okay to save it.

Friday, June 12, 2009

Our Diabetes Menagerie

Every 3 months, we get a package. From Medtronic. It's a 3-month supply of C's pump supplies. It's a lot of stuff.

I had such a terrible time with our "mail-order" pharmacy, that for the past year and half, I've gone back to picking up prescriptions at CVS on a monthly basis. I really need to figure the "mail order" thing out again because it could save us tons of dough. But whatever...for now.

When the most recent shipment arrived, I decided to have a still-life photo shoot. In the hustle and bustle of life, I usually throw open the cupboard and stack it all up. But, I wanted to set out a 1 month supply of everything, just to take a look...and to ponder a bit.

This is what I included:
  • insulin, 2 bottles of Novolog
  • insulin, 1 bottle of Lantus for times of pump failure
  • alcohol wipes
  • IV prep wipes
  • a box of AAA batteries
  • 300 lancets
  • 300 test strips
  • 10 infusion sets
  • 10 reservoirs
  • 2 glucagon kits

Items I did not include, but should have:

  • glucose tablets
  • "quick-sert" device
  • tissues
  • syringes for times of pump failure

I could have gotten really crazy here and set out juice boxes, frosting tubes, countless snacks, but I didn't. However, there are so many times in a month that C will need to take and eat either fast-acting sugar...reason for frosting tubes :)...or take extra carbs to keep her number up, that normally a little 7 year old girl would not. I could have included her meter kit and the actual pump (my pump gear, included!), although I stuck with just consumable items.

As I look at the above image, there are lots of things that run through my mind. I remember a time when all of this would have looked foreign to me. It seems a lifetime ago...my daughter's lifetime. I remember becoming a raging, sleepless mother in our neighborhood CVS (Sav-On back then) at the time of C's diagnosis. I could not get our insurance company to accept the fact that we really did need 300 test strips per month and the CVS pharmacy receptionists got the brunt of my "mama bear-ness." I remember coming extremely close to having no usable reservoirs because several were defective. I remember driving out to Minimed's home in Chatsworth, California, because C was using the very last infusion set we had. I remember when the insurance company decided that each supply would go up $50 each, without notice (but that's for another post!)

Wow. It's a lot of extra stuff. Stuff that a kid shouldn't have to know about. And I guess that's part of the reason for this post. It's summertime. And I want my kids to have fun. When C looks back on her childhood, I really don't want it to include all this stuff. But, honestly, I know that it will. I am hopeful, though, that her memories of summer days will outweigh the memories of all our diabetes menagerie.

Our Diabetes Community (Expanded)

C was diagnosed on December 29, 2003. A diabetes community? We were it. We knew no one else who had type 1 diabetes. Our family and closest friends were as supportive as could be, but they, too, had no idea what this disease would mean for our family. It felt as if we were placed inside a maze. The only thing we could do was move forward.

Hospital. Education. Prayer. Sleepless nights. I remember being discharged from the hospital on a Friday. We had to be on our own until Monday morning when we were set to be at CHLA (Childrens Hospital Los Angeles), where the doctor assured us that we’d be taken care of. But we had to get to Monday. I was so scared. Injections? All on our own? I had dropped out of the nursing program in college because of this. The perfect irony.

I used the doctor’s cell phone number several times that weekend. But we did get to Monday. There we were at CHLA, learning soooo much. My head ached. We were given a gigantic notebook full of diabetes stuff – carbohydrate counting, scheduling, the different insulins, injection sites, etc.. And, that’s when we first met those wonderful people at CHLA…Dr. K and the dear, sweet nurses. How we clutched to them for our daughter's very life.

So, now, it was us, close family and friends, the CHLA nurses and Dr. K...our diabetes community. It was scary. It was lonely. Because, really, when we came home, and we weren't on the phone with the nurses, and Dan went back to work, and the boys were in school...it was just us...C & me.

Family and friends surrounded our little family with meals and help with the boys. But when it came to the diabetes stuff…I was it. I remember thinking “I did not sign up for this.” But as you all know, the job was mine, applied for or not.

On the phone with nurses constantly...I can still hear their calming voices, helping me to gather my senses enough at 3 in the morning to measure and give an injection of 1/8 of a unit of insulin to my baby.

During one of those first weeks after diagnosis, I had to get my wits about me in order to pick up my oldest (then, in 1st grade). As I wheeled C’s stroller past the classrooms, someone came walking right up to me...gave me the biggest hug with tears in her eyes. “My name is K, and I know exactly what you're going through.” She handed me a bag, over-flowing with goodies for C...cute band-aids, Crystal Light mix, small bags of snacks (clearly marked with carb counts), stickers, small toys, a wonderful purple teddy bear...and her phone number. She said “diabetes is so difficult. Call me whenever you want.” Come to find out, her daughter was a second grader that year and had been diagnosed when she was just 3 years old.

So...now it was us, friends & family, CHLA staff, and now...K & her family. I can't tell you what a comforting thing it was to hear her say that diabetes is terrible...it's so difficult. In a strange way, that eased the burden slightly. Because, finally, someone else felt it too. I wasn't alone. To this day, when someone tells me something like "Oh diabetes?...Well, at least it's manageable." Oooooh...I just want to scream! It’s hard, people! And, no, sometimes it’s not manageable at all.

Well, time has passed. It’s been over five years of learning, failing, trying… In those five years, we have met 3 other families in our immediate city with type 1. I have passed on the goodie bag to another family I heard about through a friend. We’ve met a newly diagnosed toddler and family at a neighborhood park to talk to and encourage in all this crazy stuff. We’ve been welcomed with open arms to a JDRF walk team and have joined them for the last 3 years. We’ve spent time at Family Camps through CHLA talking with dozens of other families with stories so similar to ours.

So…now it was us, friends & family, CHLA staff, K & her family, 3 other families, our walk team and…

Enter the DOC.

Like the #1 post stated, I’ve been a lurker for years now. It started with searches about diabetes, the pump, a 504 plan, etc. And then, I came across a blog about real life with type 1 diabetes. This was a young woman’s life, out there, nearly every day for me to peer into, and learn, and laugh. Her writing encouraged me so much. Here was this lady, living a full and eventful life…with diabetes. Her writing was so rich, so vibrant, so full of humor! What hope I found at her site, sixuntilme.

Kerri’s blog pointed me to others. I couldn’t believe the wealth of diabetes knowledge I found…not from medical people, per se, but patients themselves. These were real people living wonderful lives, despite diabetes.

So…now it was us, friends & family, CHLA staff, K & her family, 3 other families, our walk team and “just the tip” of the DOC.


And, then there's Twitter! Another extension of the DOC...supportive, inviting and encouraging. And I haven’t yet mentioned sites like tudiabetes and type1parents. There are some great things growing out there. I have been truly touched by this community. Support is just one mouse click away.

Thank you DOC! Keep doing what you’re doing! And, thank you, Gina, for the privelege of posting here!

You can find us on Twitter (@mypumpgear); on Facebook ; on our blog; or on our site mypumpgear.com

Wednesday, June 10, 2009

All Freaky on Mr. Frito-Lay

Okay. I must admit that this diabetes thing has really made the inner monster in me come out ferociously at times.

I was asked just recently about the early days of C's diagnosis. No warm, fuzzy memories. Fear, consumption, the unknown...that's what comes to mind. But, here's a memory that I can look back on, and if not laugh at, at least rustle up a little chuckle.

It was in the very first days at home after the hospital stay and after we got "all educated" on this crazy new way of life. It has to do with the counting of carbohydrates. Now, this is, for me, one of the great annoyances of this disease. No longer can we just put a bowl of chips out for all to munch from, but we need to count each one and know exactly what our little 2 year old (at the time) would be eating. Talk about irritating. But all you parents out there who go through this, day in and day out, can certainly relate. Well...I wonder if you can relate to my inner monster that slipped right out of me as I wrestled with this new routine. (If you can relate, I'd love to know...so I won't feel so alone in this area!)

Anyway...we were having Frito Corn Chips...nothing abnormal about that. But I was still learning about carb-counting and nutrition guides and grams and so on. I turned the bag over, and for the life of me, could not figure out what the guide was telling me. Half of this confusion was due to the new-ness of diabetes. But the other half stemmed from the tremedous lack of sleep I was experiencing.

Clearly, it was written at the top of the nutrition guide: Serving Size 1 oz. (28g/32 chips). But then, down the guide it read: Total Carbohydrate 15 g. Ug...28 grams or 15 grams? Which one was it? Through my clouded eyeballs I could not get a grasp of this. My little one wanted fritos and I was bound and determined to let her have them, diabetes or not. So…I decided to call Frito-Lay. I got the 800 number off the back of the bag. After the initial punching of millions of buttons in order to talk with a live person, there he was, Mr. Frito-Lay, himself.
“Hello. My name is [Mr. Frito-Lay]. May I help you?”

“Yes. Hello. I have some questions regarding the nutrition guide on a bag of Fritos.”

“Yes ma’am. What seems to be the problem?” (Grrrr at the word “ma’am”)

“Well, I’m confused about the grams. At the top of the guide, it says a serving size is one ounce at 28 grams for 32 chips.”

“Yes, ma’am, that’s correct.”

“But then down at the Total Carbohydrates it says 15 grams.”

“Yyyyes, that’s correct.” His tone was beginning to sound patronizing.

“Okay. But I don’t understand. 28 or 15…which is it?” My voice began to quiver.

“Ma’am, I can see that this issue is very important to you, but I can assure you that the information on the nutrition guide is correct.”

I began to sweat. In the background, C was beginning to fuss.

“Okay…You don’t understand!” My voice started rising and my eyes were filling with tears. Then, I let it all go.

“I don’t know what to do! My baby! She wants fritos and I don’t know what to do! Is it 15 grams or 28?! I need to give her a shot! I don’t understand this! She’s diabetic and I don’t know what to do!” By this time, I'm sobbing.

“Okay, ma’am? Calm down, please calm down?”

Sniff, sniff, “yes,” I squeeked.

“Okay, ma’am, you hold on and I’ll go ask someone about all this. Now, hold on, okay?”

“Okay,” sniff.

I sat there, head down over the high chair tray, holding the fritos bag. C was content playing with my hair. As I grabbed a tissue and blew, a voice came back on the phone.

“Ma’am?”

“Yes.”

“I’m now understanding a bit more clearly about what you’re asking. You need to focus on the 15 grams of carbohydrates. The serving size of one ounce is about 32 chips and it should weigh 28 grams…that’s the weight. One of my co-workers, here, knows a little bit about diabetes and explained it to me. I hope this helps.” There was no patronizing tone now.

Big breath…”Yes…yes. Thank you.”

“Well, thank you for calling Frito-Lay. And if there’s anything else we can help you with, please call again.” Click.
_______________________

I’m a grown woman. College-educated. Masters degree even. Obviously, I wasn’t thinking clearly. There I sat. I slowly counted out 32 chips for my daughter. As she happily munched away on them, I prepared her injection.

(Sorry Mr. Frito-Lay. I didn’t mean to get all freaky on you.)

Monday, June 8, 2009

Hey There, DOC!

I am sooo excited to tell you that we are the featured blogger at the Diabetes OC! And by OC, I do not mean Orange County! It's the Diabetes Online Community. So if it looks like a post has been repeated, it may have been to help describe who we are. So, check it out at the DOC! Let us know what you think...
___________________________

How best to introduce myself? My name is Nan. I am 44 and not ashamed of that. I have earned every single wrinkle that I have. But gray hair? I have an appointment to see my hair lady next week.

In short I am a: Christian, wife, mom, sister, daughter, daughter-in-law, sister-in-law, aunt, friend, teacher, business owner, chef, chauffeur, medical insurance investigator, nurse, diabetes advocate & educator, cheerleader, short-order cook, personal shopper, tutor, editor, housekeeper, activities director, breast cancer advocate, tired, and...a cancer survivor!

I am thrilled to be the featured blogger this week on the DOC. Although, I don't feel worthy to be here. And I don't expect I can live up to the wonderful posts I've read on here recently. We are super new to blogging (and by "we," I mean "I"). Admittedly, I have been a lurker for years now. After my 22 month old was diagnosed in 2003, I began searching the internet for answers, support...anything to help me grapple with this new life that was thrown at us. A couple months ago, I decided to de-lurk myself. And I have found a real sense of calm & purpose after writing. Our blog is pretty much dedicated to diabetes-related issues. It continues to amaze me that I really never run out of ideas for posts about this disease. It will be wonderful if, one day, we could all truly say "hey, that's it...nothing else to say on the subject!"

I feel the best thing to do is to re-post about my daughter's diagnosis. If not to anyone else, it at least proves to me that it's okay to be here. So, here goes...


“So, how did you know she had diabetes?”

Inevitably, if enough information about my family is exchanged in an introduction, a new friend will come up with that question. I don’t ever want to give a pat answer. I judge the amount of time left for my response and decide which road I’ll take…

#1 answer…(not much time)…She was very, very ill with flu symptoms and ended up in the hospital. We are fortunate that it was diagnosed. Or...

#2 answer…(longer version)…

It was December 2003—all the usual hustle and bustle for the holidays. We would be hosting Dan's side of the family. I convinced him that we would need to paint nearly the entire interior of our home, add a patio cover and heat outside. So, the race was on! We would be using every waking moment (+ a few moments when we should have been asleep!) Juggling 3 young kids in and around all the commotion was a difficult task. Although, we were exhausted by the time our family Christmas gathering date arrived, it was a great time.

However, I remember the morning of the party…Claire seemed out of sorts…you know…kind of cranky, small appetite. I thought…maybe she’s coming down with a bug…but…the show must go on! She was asking for a drink of milk quite often, lifting her sipper cup up to the fridge with a “mmmm." I thought not much about it at the time. At least she’s getting some calories in her, I thought.

After our festive evening, things wound down. As we tucked the kids in for the night, we noticed Claire’s face flushed with fever and sure enough it registered on the thermometer as low-grade. She was asking for more to drink. So, a cup of juice, then off to bed. It would make sense to keep liquids in her…she had a fever.

The fever went on for a couple days, so off to the doctor we went. After a short exam--flu. You know the routine...rest and lots of fluids. Several more days went by...still feverish, drinking furiously, and now there were middle-of-the-night diaper changes. There was noticeable weight loss. That was probably one of the first nerve pings I got. This is more than a flu bug, I thought. Off to the doctor, again. Quick check...ears, nose, throat. I got a "look" from the doc--"Lady, the flu is going around." I shrank, scooped up my baby and went back home. A couple more days of the same. But now, there was vomitting (one of the great tests of motherhood, in my book). But this was not your normal "vomit several times and then get better." She would vomit and then not for a whole day, but then do it again. It just didn't make sense. Another call to the doctor. "Rest and plenty of fluids." Somewhere between doctor visits, Christmas day came and went. Dan and Claire stayed home. I took the boys out to my sister's house to celebrate with the rest of the family. And I remember calling home to see how she was doing. Dan said she had seemed really hungry and ate a bunch of scrambled eggs and seemed better and happy! (In hind sight, we know why...)

Four days after Christmas found me visiting at my sister's house. I got a call from home. Claire had woken up from her nap, vomitted, looked glassy-eyed and Dan was concerned. Some kind of nerve sensation hit me like lightning and I raced home. It was the weekend, so I grabbed the diaper bag and Claire and headed off to Urgent Care. When the "on-call" doc saw us, she checked her out and mentioned something about not having the right equipment in the office to check for this or that or "diabetes"...Our instructions were to take her to the Emergency Room across the street if she seemed any worse later that night. Around 11 pm, I peeked in to check on the kids. Both boys were sound asleep. When I entered Claire's room, her eyes were open, but glazed over. Her breathing was so shallow and rapid, almost as a panting dog. It was as if God simply took over my actions and made me pick her up, get the diaper bag and head to the E.R..

With juice in sipper, we arrived about 11:30 pm. It was packed! They checked her vitals and then, we waited. She had her blankey. We waited. She drank more juice. We waited. I changed her diaper several times. We waited. Out of drink...nearly out of diapers, I wanted so badly to go home. We almost did. I sincerely believe God took over and made me stay. Thank you! By 4:30 am, we were finally called back. I explained things as best as I could to each nurse and attendant that came by our little curtained off spot. I mentioned to the main nurse that the urgent care doctor had mentioned something about "diabetes" in a list of other issues. It was not even 5 minutes later when he came back, opened her diaper (which was on the verge of rupture!), held some kind of strip down into the moisture and said some number under his breath, something in the 500's. From that moment on...it seemed as if I was physically moved - shoved out of the way while 8-10 people converged onto Claire's bed...doing what?...I did not even know. I just knew this was serious stuff and I lost it!

I called Dan. "We're being admitted. I think she may have diabetes," I said. I cried it. I didn't even know why I was crying. I knew nothing about this disease...except maybe the sensationalism of it in the movies...losing limbs...going blind...my baby!

Suffice it to say, we were admitted to the hospital and up in a room on the Intensive Care Pediactric floor by 6:00 am. My little girl and me. I.V. hook-up. Finger pokes. Toe pokes. Blood drawn. Crying. Screaming.

Doctor entered our room. He was a kind, older man. He explained to me that Claire seems to have type 1 diabetes and that she will need to begin with insulin in her I.V. as soon as possible.

Insulin? All I ever had heard about insulin was that once a person starts on it, that's it...a lifetime. No, I didn't want that. I needed to talk with someone...someone who knows about this but who loves us too. But, there wasn't time.

The doctor was kind, but very stearn. He took me by the shoulders. "If we do not start her on insulin, she...will...die." I nearly collapsed. I sank down into the chair next to the cold, metal hospital crib. I stared at Claire's innocent little face. She was finally sleeping now. I nodded my head slowly and signed all the papers the nurse was holding.

She scurried out of the room and was back in seconds. She fiddled with the I.V., and said "there, she'll start feeling a lot better now." She turned to face me and gave me a long hug. "I'm so glad you brought her into the E.R.. You did good, mom."

So...how did we know she had diabetes? We didn't. God did.

Wednesday, June 3, 2009

School - Changing It's Mind

To say I was a little apprehensive in the months before C began kindergarten last year is this century's biggest understatement. I really didn't know how this whole diabetes thing was going to gel with public school. I had wrestled with the idea of home schooling but have never been an advocate for it. I was, after all, a public school teacher for 8 years prior to kids. In fact, my entire family, with the exception of one brother-in-law, are teachers! So...there we were...public school.

I suppose I was being a bit ignorant, but I truly believed I would be able to come in there like the "diabetes super-mom" and teach anybody and everybody how best to care for my precious little daughter. Well, they knew I was coming. I had 2 older boys in the school already. They even were familiar with diabetes, having just had a type 1 girl finish 5th grade the previous year. So, I quickly was jolted out of the role of "diabetes super-mom"...

However, after the first week of school (during which I spent each moment in C's classroom), I marched in with our 504 plan in hand. The prior type 1 students had not implemented one and so the office staff looked at me, quizzically. In another couple of days, we actually sat together - principal, teacher, me and C - to go over and fill in all the information. When it came to specifying the supervision that would take place during finger checks, hypoglycemic episodes and working the pump, I was told a nurse would be there each time. And if she was not on campus, she would get there to take care of things.

Well, of course this worried me. A low must be treated immediately. And I didn't want my kid to have to sit around waiting for the nurse to get to school so her insulin pump could be worked. I spit out the idea of allowing the health aide to help C and be the supervisor. Oh no, no, that would not be okay, they told me. There were regulations to be followed. Only a registered nurse would be allowed to be the supervision. "Even if I give my permission for the health aide to do it?" I asked. Correct...even if.

So that's how it was. I finally left it alone. The year came and went.

And so, here we are...the end of C's 1st grade year. The nurse stopped me one day a couple weeks ago and asked me what I thought about C being put on a more independent routine next year...that she would be able to manage her pump with the supervision of the health aide...that she (the nurse) would be able to get to campus if need be, but that C would be manipulating the pump with the health aide on the phone to confirm numbers and such...

WHAT??? What was going on here? She acted as if we had never discussed this before! I said "What?" to her.
And she just smiled and said "oh, I know how it's been. But I really think C could handle it."

I'm so confused at this point. I told her that I would bring this up at C's next endo appointment in July. "But," I said, "I don't think she'll go for that."

What was with the big change?...Budget cuts, or what? Hmmmm...we'll see what happens.

Monday, June 1, 2009

Sno Cones for Sale

It was cold. It was gray. But still we sold sno cones.

Our JDRF fundraiser was actually a success in spite of the cool weather. The sun has been hiding from SoCal for the past several days. We set up our booth at the Little League Carnival early Saturday morning. We decorated the booth and set up the sno machine. The snack bar graciously allowed us to borrow it for the day. So instead of buying sno cones from them, people were directed over to our booth, where they found regular and sugarfree flavors, of course! The carnival is actually an annual fundraiser for the league, so we weren't sure about doing one for our cause. But the board was great about it and said of course we can do it. We just thought, hey, look at all the years of support C has given at this field, let's set it up here and it was great!

We had our booth right between the 2 fields where the big brothers would both be playing later in the day. It was perfect. We had a bit of a slow start with the sweatshirt weather and all...but by noon, customers came in a steady stream. We so appreciate all the donations beyond the sno cones. It was also a great opportunity to educate those who asked about our involvement in the JDRF. We may have even found a corporate sponsor for our walk team in October! You never know what can happen when you put yourself out there!

There was, however, something that took me by surprise. Maybe we've done too good of a job in not bringing attention to our diabetes situation. A family from one of our teams came to the booth and asked how we're connected to diabetes! I mean, this is a family we've gotten to know throughout the season, sat with, game after game. She looked shocked when I told her, C is type 1. Later, I thought, wow, that's so strange that it wasn't apparent to her. (She's actually in the medical field.) When it comes to diabetes, I feel like we wear it out on our shirtsleeves. But maybe we're getting too good at finger checks and solving lows!

We thanked the snack bar lady for the use of the machine and donated all the gooey, sticky, leftover syrup to the league. We had planned on giving some of the proceeds back to the league as a thank you but were told to just donate all to the JDRF! So we will be sending our profits in to go toward our team's efforts for the walk this fall. It felt good to do something for the greater good. It was so wonderful to watch the kids pitch in and help too! We thanked the other 2 "D" families who came out to help too!! Hey, we're all in this together!


To view the rest of the day's pictures...