On a Day at Sea World

Sea World...so inspiring! I mean, they pump upbeat music through the trees and bushes. It put a zing in my step! We "oooo'ed and ahhh'ed" at the amazing shows. And that feeling I had as a child...you know the one...the "I-want-to-be-a-whale-trainer-when-I-grow-up" feeling?...I got it again. (And, yes, I do realize, I am a 40-something year old mom of 3!)

It was a great day...just C and me. The boys were off camping - doing their "boys only" trip. So C and I decided to go down to San Diego for the day. She had never been to Sea World before. Well, actually, the last time we'd been there was 8 years ago, when I was pregnant with her. So, technically she had been there. But, anyway...

We got up pretty early, packed some lunch, made sure we had all the necessary D items (insulin and site change, included), had a quick breakfast, and we were out the door. It's a good 2 hour drive from where we live, but we made good time. We arrived soon after the gates opened at 9:00 am. C was so excited.

{I have to share a tidbit of info here. Sea World, like everything else, is expensive. It was going to cost us $110 just for admission for the 2 of us. The night before, I went online and found this sight: RetailMeNot.com I purchased a regular adult admission and got a child's for free! It worked! I printed out our tickets for nearly 1/2 the price!}

Now, I was trying to go cheap, here, but because I saved so much on admission, I decided to put that money toward an animal experience for us. We made our reservations to "Dine with Shamu." Yes, we would be eating dinner with a killer whale! More on that later...

So, we did anything and everything that C wanted. She called the shots. We donned our trusty ponchos and enjoyed Shipwreck Rapids. We flew over the Wild Arctic in a helicopter. We saw the amazing Shamu Show. We meandered through several animal-viewing areas including sea turtles, dolphins, flamingos, penguins and sharks. We saw the perpetual Clyde and Seymour Sea Lion Show. The Dolphin Show entertained us. Then, it was time for dinner...with Shamu!

We were among a small group of people, escorted back behind a large whale tank (the one that used to be used for birthing baby killer whales). We sat poolside and got the "inside secrets" of the Shamu Show! We went through a nice buffet line with yummy beef tenderloin in a burgundy sauce, seafood creole, delicious salads and of course, all the fun kid food you can imagine. The dessert bar was beautiful. However, I waited too long to get a scrumptious piece of double chocolate cheesecake. They were cleaned out on my second trip through ! But C got her "mystery carb count" whale cookie and was happy as a clam (or a whale!)

After our dining experience, whale-side, we were escorted through the backstage area to our reserved seats for the nighttime show. This show is different from the earlier daytime one. All the lights and sounds just dazzled. It was so fun and so worth it. The grinning 7 year old is proof!

Notice how I've barely mentioned diabetes in this post? That's not to say it wasn't an issue. We tested A LOT. But, I must admit, it behaved itself during the entire adventuresome day at Sea World. C stayed 150 or below all day long! And when we were ready for a treat here and there, her number was remarkably in range!

When we finally left the park at nearly 10 pm, we did a quick finger check before heading out...146...wow, I thought! That's pretty good for 2 1/2 hours post a mystery, buffet meal. I felt good with that number, so we headed home.

When we got home around midnight, I took a sleepy girl upstairs and checked her bg. 367! Go figure. I guess diabetes liked Sea World just as much as we did.

(Disclaimer: although I would love to have gotten paid by Sea World for this review, sadly, I did not.)

"Mom, I think he's smiling at us!"

My Two Sons

Remember the old television show, My Three Sons? Well, this is the newest edition of "My Two Sons!" (Disclaimer: this goes against everything my mother ever taught me regarding boasting/bragging. Sorry, mom.) I thought it appropriate to write about my two boys for several reasons.

First of all, they're my boys and I love 'em! They have both played long and hard on their separate baseball all-star teams this summer. And as baseball sometimes goes, they both had games last night. Both their teams lost last night, which means...they are both finished with baseball. Well, at least for a while!

They are a funny pair.

Big C has brilliant red hair, stands nearly taller than I do and can pitch an insanely fast ball. He's 12. It seemed we had to re-iterate that fact several times to people during Little League this year because he stands taller than any other kid at his level. He will be going into the 7th grade this fall. He always gives us many reasons to be proud.

Then there's Middle C. His hair is also red, but more of a subtler shade. He is reminiscent of Opie Taylor -- Ron Howard's character on The Andy Griffith Show. Grandma tells him he looks like a young Brad Pitt. Either way, yes, I think he is handsome! He'll be headed for 5th grade this fall. And, I've got to say, the humor inside this kid keeps us laughing every day!

The second reason I wanted to write about them on the blog is regarding the roles they play in our family where diabetes is concerned. Their lives, too, are affected by this disease. A lot of time and attention is given to C because of type 1. And, though it is an intricate part of our family, we strive daily to carry on our normal routines. We never want diabetes to rule whether we do activities or not. But there are times, when it rears it's ugly head at inopportune moments. My boys have seriously never once grumbled about the "diabetes-interrupted" times. A low may need to be treated when heading out the door. Or, maybe the low happens at the end of a baseball game when the team is heading to the local pizza parlor. And, we just need to sit and be patient while C struggles to feel better. Diabetes is demanding. And it's demanding on all of us, including my two sons.

They support our efforts in raising awareness and raising funds for the JDRF. They participate in walks. They've attended Family Camp Days to learn more about diabetes. They were so excited this past May, when we set up a Sno Cone sale at the baseball fields. All proceeds will be going to our walk team. At one point during the day, they took over running the booth with some of their baseball buddies!

Big C recently wrote a paper all about type 1 diabetes and how his sister deals with it all. I was so touched...I posted it back in May. It shows how much he knows about this disease, more so than many people. It also shows that he doesn't take it lightly.

The last reason I wanted to write about my two sons in this post is to highlight one other thing they do in the fight against diabetes. They both participate in TrialNet. It's the ongoing trial to find answers from lab work gathered by siblings and cousins of type 1 kids. And, although they aren't jumping up and down with excitement to get their blood drawn yearly, they do it because it's what they can do to make a difference. I'm proud of them for that!

My two sons...

The "D" Card

Do you ever play the "D" card? I do. I did this morning. Otherwise, I felt like diabetes was going to win this hand.

C's endo appointment is next week. Our doc wanted us to go in to get lab work done a week prior. The orders were to fast for bloodwork. This is tricky, as all you D folks know. Her number needs to be near perfect upon waking, or we miss the opportunity. So I started last week...each morning being prepared to go in with an "in-range" number...but not too low. I never know how long the wait will be.

Well, this morning she woke up at 85! Kind of miraculous in our book. So, we jumped on it. We dressed, put hats on and we were out the door. We walked into the lab. It wasn't just kind of crowded, it was packed. There weren't even 2 available chairs for us.

I started out very apologetic and kind. I told the young receptionist gal that we were there for C and that she's type 1 diabetic. I said I wasn't quite sure how long we would be able to wait without eating. And if it's too long and she goes low then we would have to come back. And we are running out of time because her endo appointment is next week, and... You get the picture.

Well, she told me she would do her best but that she has to take people in order. I bit my tongue and walked over to stand next to all the occupied chairs.

Now, I would have classified myself as a fairly patient person B.D. (before diabetes). However, diabetes is never patient with us and it has rubbed off on me. I also would have classified myself as a mild-mannered person B.D. and B. C. (before children). This disease has forced me to step far away from my comfort zone many times.

So, about 30 minutes later, not surprisingly, C told me she was feeling low. Okay, we dropped to the floor and very publicly displayed her meter kit. We checked. Hmmm?...71. Not super low, but not good if we need to continue to wait. My patience and mild manners were beginning to fray. I walked back up to the counter with C's meter showing the number 71.

"Just wanted to know where we are in the line-up..." I said with a semi-smile. "She's 71 and if she goes lower, the fasting thing is out the window."

"Well, we have to get this other girl in before you. Her mother has been asking the same thing." The gal said. "Then we'll get your daughter in."

"Thank you, thank you!" I said.

I went back to C. I told her we'd be up really soon and that I would have this juice box ready for her. It wasn't 1 minute later and we were called. Phew, I thought.

We got her blood drawn with relatively few tears. She took a some sips of juice. I thanked the phlebotmist. I wanted to skedaddle right out of there as I felt the angry stares from those who were still waiting. But, just as we were heading for the door, the receptionist handed me a speciman cup. C also had to leave a sample. Ug.

I failed to remember this part and of course she didn't "have to go." So, instead of slipping out we had to sit there, drink water, juice, more water. It took several tries. Finally she was finished. We left.

I am grateful that we actually were treated with exception after showing the 71 on her meter. But then, when we had to wait, drink water, and wait some more, it was a little embarassing. I just wished I could have said to everyone in that waiting room "I'm sorry...I can wait...but my daughter's diabetes won't....thank you for letting us go ahead."

The "D" card. Do you play it? Maybe we should have just gone back another time.

12 Midnight & 3:00 AM

Okay, this is for all you type 1 parents out there, especially my mom friends who can so relate to me and this life we lead with diabetes in our families. I hope I can convey what I truly want to convey here.

When C was diagnosed back in December 2003, it was a whirlwind of education! We were handed a gigantic notebook full of diabetes information. And there is a page in it that haunted me for two years. It states: For a while, you will need to check your child's blood glucose at 12 midnight and 3:00 am.

That's what we did...actually more than that at times. I mean, our little girl was still a baby. She couldn't tell us how she was feeling or tap me on the shoulder at 4:00 am to tell me she has an unquenchable thirst and that she may be high. So, that was our assignment...do blood glucose checks every 2-3 hours, round the clock.

In the beginning, I tried to take on this new job by myself. After all, my husband had to get up and go to work! How can he be waking every few hours and still function properly on the job? But soon, it was clear that I needed help. We switched off for a while. Then we tried midnight for him and 3:00 for me. He would stay up, check at midnight and then go to bed. I would try to go to bed at a decent time and then get up for the second check. Nothing was really the perfect plan. And here's why: we need sleep! We, humans, need good, uninterrupted, restful sleep. It's precious. It keeps us healthy and alert. It allows our immune system to re-boot itself. It is so necessary.

When a child is diagnosed with type 1 diabetes, there is a demand on the parents to give up this precious thing. This thing that helps us stay strong and mindful for our children. It's quite a dichotomy. It's hard to wrestle. And what of the other kids in the family? During these first couple years, I was nowhere near the mother I wanted to be. I barely functioned. Coffee and Diet Coke became my lifelines. They would replace a lunch here, a breakfast there. I began ignoring my own nutrition as I grappled to understand carb-counting for C. I was a complete mess.

I am convinced that the medical teams that are there for us, will never tell us that it's okay not to check our kids over night. They need to cover themselves. And, I do understand that. But a full night's sleep? It was such an elusive thought for us those first 2 years. Our first endo, Dr. K, finally did say to me..."this is your child and you need to feel okay about not checking her through the night. But you also need to think about the quality of your life too. And getting enough sleep is a big part of that."

In the meantime, after 1 1/2 years of injections, C went onto the insulin pump. That was a whole other learning experience. It did make managing this disease "easier" in some respects. But C's numbers still baffled us. We still made adjustments and checked at midnight and 3:00 am. But then, something else entered our lives...

In June of 2005, two months after C had gone on the pump, I was diagnosed with breast cancer. Talk about stress! Needless to say, things had to change. I would be going through multiple surgeries, chemotherapy, reconstruction, doctor appointments, doctor appointments, and more doctor appointments. I knew I would not be able to keep up these overnight checks and take care of myself too. And...I needed to take care of myself. My kids needed me! This was the biggest wake-up call of my life.

Thank God, my friends and family were all over it. Two sisters and two dear friends went out to CHLA and got "all educated" on the pump, how to change the sites (and this was with the long catheters...no Quick-Sert), and how to care for C. She was only 3 1/2 at the time. There would be no preschool for her that year as we had planned. There would be countless doctor visits and staying with people other than mommy. These wonderful people scheduled time out of their own lives to spend the night on our couch and be available for those nightly checks. These would be on the nights when my chemo treatments hit the hardest. Sometimes, they would come after the kids were already in bed and slip out before they woke, leaving us notes with numbers scribbled down and bolus corrections or lows noted.

There's far too much to share, in regards to my own story here. But for now, I want to focus on the issue of sleep. I know, all too well, what the lack thereof can do to a parent. I, by no means, think that the insufficient sleep or the stress diabetes caused my cancer. But it certainly didn't help and may have even sped up the process.

After the surgeries and the chemo and more surgeries...and after I started to slowly feel stronger (and my hair started to grow again!), I knew I needed to let go of these nightly checks. I wrestled with it. I prayed. Dan and I talked about it. It was time. It was time for us to release this from our hands.

Now...we are Christians. And I have a deep faith in God. But I always hesitate sharing this on the blog because, well, I just don't want it to turn people off. But that faith is so key in the release that occurred. I must share that fact. I know God loves C even more than I do. I know that He intervened when C was close to comatose at diagnosis. And, so, I place my trust in Him each night. It's not easy, but I do it. And this is not to say I don't worry anymore. I do. I wake up with an anxiety that is difficult to explain to people who don't live with this disease. And when my body wakes at 4:00 am with a sudden panic, I may still creep down our hallway and do a quick check.

My 3 inspirations.

I just know that I want to be around to raise my kids. Therefore, I must take care of myself. And allowing myself to sleep through the night is where I choose to start.

We still check her periodically in the middle of the night. When we get ready for bed and she's super high or low, of course we set the alarm and check again. When illness hits, of course, we check her every hour if need be. But on a nightly basis, we've released it.

Sugar-free Candy and Pickle Pops

Birthday parties. They are always interesting when diabetes comes along.

C was invited to a summer birthday party for a little school friend just this week. Whenever she gets an invitation, I honestly am so grateful. Recently, I was told by a mom that she was so sorry that her daughter couldn't invite C to her party because she (the mom) thought it would be too hard on C to not be able to eat the cake and candy. Yes, that really did happen and after my initial shock, I let that mom know that C is perfectly able to eat cake! Anyways...so, yes, I'm grateful now, when she gets an invitation.

This party was at Raging Waters, not too far from our house. We met outside the gates. The birthday girl's mom sided up to me and almost whispered, "I brought sugarfree candy for C."

"Thanks," I said. "But you didn't need to do anything special for her."

"Oh, I know," she said. "I just didn't want her to feel left out."

Ug...I wished the attention wouldn't be on C like this. I'm there, at the party, to try and help C blend in and be safe. I just had to muster up a little diabetes education.

"Oh, well, she can have cake," I told her. "It was so thoughtful of you to bring the sugar free candy. What's kind of funny is, C's never had any before!" I didn't want to turn down her thoughtful generosity, but I really don't want C eating stuff like that. We've even been directed by those lovely CHLA nurses, to let her enjoy holiday and birthday treats...in moderation (as all of us should) and guesstimate the carb counts as best as we can. This was decided early on after my feeble attempt in making her first and last diabetic birthday cake with Splenda...resulting in a "brick!"

So, after that little awkward moment, the party began. C had fun with her little friends. And, I must admit, I had fun on Neptune's Fury with 3 screaming little girls!

After a couple hours of water fun, we headed to the picnic area for pizza, cake and gifts. This is where more diabetes talk ensued. One of the birthday girl's grandmothers was all over the subject. She kept talking about "pickle pops." She kept insisting how delicious they are. "They're made out of crushed dill pickles, frozen like an Otter Pop. They're backed by the American Diabetes Association. They are low glycemic. Even appetite suppressant. They would be wonderful for your daughter!"

I finally clued in to the fact that she sells them! She's a distributor...you know, multi-level-marketing! Ug.

Okay...first of all, they sound disgusting (to me). Secondly, my kid can eat nearly anything she wants. And...who in the world would want to suppress the appetite of a cute little 7 year old girl?! Give me a break! Is this what D bloggers mean by "diabetes police?" I did not say any of these things out loud. I simply smiled and nodded...and put in a couple "hmms."

She's going to send me some to try. (Smiled, nodded.)

I'm glad C got to go to a birthday party, but...pickle pops? I don't think so.

14,000 Finger Checks!

No, the title does not mean C has checked her blood glucose 14,000 times! But that is an interesting thought. I will need to do the math around here soon and figure out just how many finger pokes she has actually endured these past 5 years...another time.

TuDiabetes' founder, Manny Hernandez, has asked for us all in the diabetes online community, to spread the word: On Tuesday, July 14, 2009 (tomorrow) at 4:00 PM Eastern Time (that's 1:00 PM for us west-coasters), over 14,000 people with diabetes will check blood sugars together. Here are the directions, straight from a message sent from TuDiabetes:

"People with diabetes have to test their blood sugar as part of their daily routine: it’s like drinking water or brushing your teeth. July 14 at 4 pm ET, 14,000 people with diabetes are going to test their blood sugar simultaneously and share their results online to help raise diabetes awareness.

Participating is easy: if you are a member of TuDiabetes or EsTuDiabetes, click on the home page banner and share your reading; if you have a Twitter account, post your reading on Twitter (use the #14KPWD hashtag) and link back to: http://14kpwd.org/; if you prefer, update your status on Facebook or your preferred social network, linking back to: http://14kpwd.org/.

If you are a few minutes late, however, or are able to post your blood sugar reading earlier or later that day, it’s OK. What really matters is that you test your blood sugar regularly. If you don’t have diabetes, just tell someone who does to test and share on July 14.

Please tell everyone you can!"

So, let's all join in! Let's raise awareness...and, if you're not a member of TuDiabetes yet, join today!

Visit TuDiabetes - A Community for People Touched by Diabetes

Fast-Acting Sugar of Choice

C was diagnosed at such a young age...22 months. She was still in diapers. She was still a baby. She had never even had a piece of candy before.

So, when diabetes came into the picture and an entire double cupboard in our kitchen was dedicated to all of her supplies, we started stalking up on all the suggested fast-acting sugar sources. We included juice, of course, sodas, sugar packets and even tubes of frosting. But no candy.

In the early days, the item of choice was a juice box. We would buy those cute little 4 oz. boxes of apple juice with "Clifford" on the front, Hansen's Junior Juice. The size was great since she really only needed about 2 ounces to bring her number up. It was easy to use. It didn't need refrigeration. And, it had Clifford on it! The only downside was carrying it around long-term.

I remember our Grand Canyon train ride. Before exiting the train, we checked, and of course, C was low. When I searched her bag for a juice, they both had been jostled around so much and worn down that they were slowly leaking. We scrambled for something else. Some nice lady gave us a regular soda. After this experience, we started carrying glucose tabs.

Glucose tabs really are wonderful. They are portable. C likes them. They bring her number up nicely most times. Juice can spike it, but the tabs bring it up to a good range. However, they're quite expensive. And while we've used them for years now, I'm beginning to look at different options: candy.

I know how tempting and addicting candy can be. Up until this time, I really didn't want to put that temptation out there for C. But, as I read more and more blogs surrounding diabetes, I've discovered that so many type 1's have their favorite candies to treat lows. I go back and forth with this idea. We have used Smarties, jelly beans and such, on occassion. When certain candies are handed out to the kids, I've always allowed C to receive them. She used to be happy just to give them to her dad or brothers. But now, we stash them in her bag in case of a low. The main problem with this has been rearing it's head lately...

C will announce to me "I feel low." Okay, let's check...189...nope, not low! Then she'll ask "When I am low, can I have the lollipop I got from the party?" Ug...okay. I fear that she may create a low just to get the candy! I've talked with her about it, telling her how dangerous this could be. I really am fearful about this possibility. But her reaction to me when I mentioned this, she really seemed genuinely (at 7 years old) surprised that I would think she would do that. I don't know. I feel like I'm going into unmarked territory with this.

I suppose we'll do what seems best at the moment. I guess diabetes is just like that.

Recall!

Okay, so we've had some crazy relentless high numbers the last few weeks! It's taken a toll on the sleep issue for us, not to mention doing a "number" on C's A1c, no doubt. It's been frustrating, irritating and...downright mysterious...until now (maybe!).

As I sifted through Twitter news from all our diabetes friends, I came across a notification from @DiabetesMine Recall on Medtronic infusion sets (seek link). Okay, I thought. I'll have to look into that. I forgot all about it until our UPS man dropped off a nice big package for C just a few hours later. Yep. Recall. 1 new box of infusion sets and directions to send any unused sets back to them.

As I read the recall letter, lightbulbs start flickering above my head like a cartoon.

Question 1: Why is Medtronic recalling Lot 8 Quick-set infusion sets?

Answer: We recently identified that approximately 2% of "Lot 8" infusion sets do not allow the insulin pump to vent. This can potentially cause too much or too little insulin to be delivered.

Huh. I remember having to change C's site several times ahead of schedule due to consistently high numbers during the last several weeks. Perhaps we are part of the 2%? When we're part of the small percetage of something, it sure feels like 100% to us!

Needless to say, C's site has been changed and I've gone through the steps to send back our unused sets. I already messed up one set. It got all sticky and stuck in the quick-sert device. (Arghh!) So, we are down to only 8 from the new box. I will hope our other replacements will be here soon.

A side note. Smack-dab in the middle of the recall letter?...could potentially result in too much or too little insulin being delivered and may lead to serious injury or death. Gee, diabetes, you're so subtle.

The Cat in the Hat Dilemma

So C tried out for Seussical the Musical last week. Even though all the kids make it, it was still exciting for them to be given the packet for each part (even if the part was simply the chorus!) Wednesday night C was given the part of "Jungle Citizen." I don't know. I've never seen the show. I suppose she'll be a citizen of the Jungle of Nool?!

Parents were given a schedule of practices and performances. In an earlier church bulletin, we had read that the performance would be some time in late September. I thought, okay, that'll work. It will give C something to be participate in, through the summertime...cool! She had performed in the last Christmas show the previous year. Honestly, it was stressful. Bunches of late-night rehearsals on school nights right before break. It's a wonder we all didn't get sick! Needless to say, I already knew we would be passing on the Christmas show for this year.

Well, I was shocked when I read the schedule. It showed that this was actually going to be the Christmas show on December 22 and 23! 5 months of rehearsals...another crazy, chaotic Christmas time?? They had changed their minds on the performance dates as the script and songs are quite difficult and didn't think it could be done by September...Trouble is...we, parents weren't notified. Hmmm? What to do???

Now, you might be thinking, "just let her do it...What's the big deal?" I guess this is where I need some sound advice. Maybe I am being selfish about it all. No...I know I am. I will need to be at every rehearsal. It will not be possible for the sweet show director to take in all of the diabetes issues and be responsible for C to test and ward off any lows. I can't expect her to clue into the seriousness of diabetes when she has 50 other kids to direct. So, of course, I would be there...every time. But then comes people's assumptions that while I'm there, couldn't I just help out with costumes or snacks or sets or miss all the performances and supervise all the out-of-control children while they wait to go on stage? And on...and on...and on. It is difficult, at best, to explain the true reason I'm always there! Gosh, this does sound selfish! It's for my daughter's well-being! And, it never fails, that while I get caught up in "helping," I lose focus on C. On her numbers. Then, we're dealing with an unexpected low or forgetting to test before she's on stage or something else important. Ug!

As I look at this post, it's a mess...sorry! But I'm really needing some other type 1 parents to lend me some sanity here. Any thoughts? Even if you think, "just suck it up and do it!"...I want to hear from you.

What Tehnorati Wants, Technorati Gets

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I Love the 4th of July

Fourth of July! We're gearing up for a great day tomorrow...home-town style! Our tradition begins with Dan taking all the kids to the local Fireman's Pancake breakfast (always a tricky carb count!). I love this tradition. It allows me some great quiet time in the morning for me to leisurely shower and get ready for the day. I may even get a delicious white chocolate mocha brought back to me!

Then, it's on to the parade. Both our boys will be in the parade this year to celebrate their "all-star" baseball teams! A parade is always exciting. I can't help but be touched at the beginning when all the veterans march with the flag. I love it! Dan, C and I will cheer them all from the sidelines!

Later in the day, we hope to do a little swimming and relaxing. Maybe we'll head down to the fair festivities at the high school.

And, in between all these wonderful things, there will be diabetes. But it won't take center stage. We won't let it...because...

By 6:00 we'll be enjoying a picnic dinner with family and friends on the high school football field. The kids will be playing catch with a football or frisbee. Music will be playing. Friends will be visiting. The kids will keep asking when the fireworks show is going to start. We'll spend way too much money on glow sticks. And then, when the last remnants of sunlight are gone, the show will ooo and ahhh us for about 30 minutes. We'll hear patriotic music that will focus everyone's attention on the beauties of our country. It will put a lump in my throat.

I love the Fourth of July!