Friends

Grace has the nicest group of friends. Like all 7 year olds, issues sometimes come up but I've been amazed how sweet and kind they are as a group. When Grace started the school year, she spent lots of time teaching them about diabetes. I love Grace's teacher for giving her the opportunity to talk to her friends. She has encouraged them to learn as a group and has allowed Grace the room to grow into her diagnosis.

Today, Grace spoke to her class about her new pump. They gathered in a circle and Grace explained how the pump worked. She was so proud to share with everyone and the whole class was so happy for her. You could see their excitement. The teacher encouraged a little Q&A. Here is a list of some of the questions they asked.

How does it work?

Does it suck your blood because I wouldn't like that.

Do you wear it all the time?

What if you're swimming?

What if you're swimming and it falls off?

If it falls off in the pool I'm a very good swimmer and I would get it for you because you are my friend (how sweet is that?)

Does it hurt?

Is diabetes a disease?

Is it better than all of those shots you have to take?

I hate needles.

What if you drop it?

I lost my ipod and mom was mad. What happens if you lose your pump?

What if someone knocks into you in a soccer game?

Can you watch movies on the pump?

What colors can you get?

Why do you have diabetes?

My uncle died from diabetes.

Can you do cartwheels with a pump on?

When will you get better?

Will you always wear a pump?

Grace did her best to answer each question. She didn't flinch at the "death" statement. She leaned over to me and whispered, "probably type 2 or maybe he didn't check his sugar enough." I nodded and concurred. When the friend asked if it was a disease, she responded, "No, my mom just says my pancreas is lazy." When she couldn't answer a question, I jumped in for a minute but it was her show. The last question was from my nephew Tim who is in Grace's class. Timothy was quiet the whole time but he kept sneaking smiles at me. I knew he was up to something. Tim's question: Can Grace go bungee jumping with that on? Me: Yes. Tim smiles, taps his fingers together and quietly whispers, "excellent." Grace looked nervously at me and I shook her off but gave the classic "Meet the Fockers" two eyes looking at you motion and everyone laughed. It felt so good to smile and laugh and to see how Grace has grown into a teacher in all of this. All of the kids want me to come back and sit down with Grace again once we get hooked up over spring break. It's totally awesome to be in a class that encourages this type of interaction. Normalcy is what Grace needs and she's thriving in that environment. But my normalcy, I do not mean bungee jumping, Timothy.

How I get Sh** Done

I'm a nice person-like a seriously nice person. Need help with your kids? I'm there. Have a baby and want a casserole? Here's two. Family member sick? Have some soup. You say there is a family in need? Let me raid my attic.

I'm also a smart person. When asked in interview situations, "what is your strongest characteristic?" I routinely answer, "I get stuff done." And I do. From the time of Grace's diagnosis, Tom has always joked, "diabetes doesn't know who it messed with."

I'm a fighter. I've fought for Grace since she was two and diagnosed with a severe peanut allergy. I learned how to assert myself to make sure she was safe. I removed her from situations that were unsafe. I educated people along the way. I built a strong foundation of advocacy that has served me well these past few months. I never really cared if other people looked at me like I was "that mom." I don't have time for people like that.

As I type, I wait for the doorbell to ring. UPS is delivering an insulin pump for Grace. I wish it was as easy as picking up the phone and saying, "Hello Animas? Yes, I'd like the Ping pump! What color? Pink of course!" But it hasn't been that easy. It seems like nothing ever is in diabetes world.

Grace's friend has an Animas pump. It's pink. It's like totally awesome. She loves to show it to Grace. It was the pump Grace had to have, as only a 7 year old can want something. I don't routinely buy ponies, special gifts, candies or anything else that might spoil my children. But that insulin pump? Yes, I will make that happen. And I did. And this is how I made it happen.

Animas has not released any pumps since the beginning of March. There was a software problem with leap year. We got caught in this mess right before the storm hit. They were ready to ship our pump when they stopped shipping any pumps. Animas was curiously quiet as to what was going on. Very little information was being released by the company. I'd call and get vague responses, "Next week!" "Definitely next week!" "Maybe next week!" "We just don't know."

These interactions left me frustrated. Under the encouragement of Animas we had already scheduled an appointment at CHOP to get Grace "hooked up." It's hard to schedule these appointments. They fill fast. We all have lives. Finding large blocks of time to fit everyone's schedules is extremely hard. I was not going to cancel our appointment.

I contacted Animas's director of communication and received a very vague, "we're so sorry, cancel your order if you like, we understand." That was not acceptable to me. I want the pump. The pink pump. The one Grace's friend has. The one she said she can't live without. Tom suggested I get real angry-like. Call them up! Dig into them! Show them your teeth! I decided on a different course.

On Monday, I started flaming Animas on twitter. I have a twitter account and have just under 300 followers. Many of my followers are in the type one community. I was mad. I wanted to connect with any other parents out there going through a similar situation. I also wanted to unleash a social media storm. Within 5 minutes I received a note on twitter from Kerri. Keri is a type one social media star. I first came across her when Grace was diagnosed. I was googling looking for blogs and found her's. She's been type one for 25 years and has an amazing blog. I contacted her, explained Grace was just diagnosed, and said thanks for sharing her journey. The next day I received an email from her full of all the right words. I love Kerri and routinely follow her blog.

"I want to help," read her message. Kerri, in addition to being an awesome media presence, also works with Animas. I wasn't sure how she could help but I figured it couldn't hurt. To have someone reach out to you when you are at your wit's end felt nothing short of miraculous. I shared some details with her and called off my social media campaign. I would remain silent until I could see where things were going. Later in the day I heard back. Animas was calling CHOP. They would contact me the next day. I was confused and not sure what was going on. Kerri assured me she adored Animas, feels they're the best out there, and was confident she could help.

The next day I spoke to Grace's doctor. Animas offered a compromise. They can't release their latest model yet. But they would give us the older model and immediately upgrade it when the "Ping" is released. Our doc thought this was a good deal. It would get Grace the pump she wanted, keep us on schedule for pumping, and he still felt the company should be trusted. After thinking on it, I decided to take it.

Throughout this process Tom and I went back and forth on switching companies. We could have gone with another pump. Every time I brought it up to Grace she got really upset and agitated. This particular pump has a remote that I can use to dose her without really interrupting her meal. I wanted it and Grace wanted it. When you live a life of so many things being denied to you, I think it's reasonable to stick to your guns to get the things that are important.

Advocacy. If your child has any kind of chronic condition YOU have to step up to the plate. You have to be the one to make things happen. No is not an acceptable answer. The last blog entry I wrote, I mentioned "negotiated victories" and here we are. This isn't the ideal situation. We want the newest model. But it is A solution. It's a solution that allows us to move forward. It has made Grace happy. It has made me happy. It has made our CHOP team happy. A happy ending? Kind of. But an ending that is acceptable. For now.

Greetings from Frustrating Land

Frustrating Land is nothing like Disney so don't get all excited and start making plans. Frustrating Land is the land of powerlessness with limbo as its star attraction.

Our insulin pump order is on hold. It's been on hold for almost 3 weeks now. I first began the process of ordering the pump in early February. Our pump was about to ship when a leap year software problem delayed Animas from releasing pumps to anyone. No pumps have shipped since then. I get vague messages from the company. Our reps are frustrated by the lack of info. I'm frustrated right back at them.

What is particularly frustrating is that we went with Animas specifically because of their reputation for customer service. The competing pump (made by Medtronic) is essentially the same but includes a few different features. To explain the differences would require us to descend into nerdy diabetic speak and I won't take you there. When I call Animas to get an update I get an extremely vague, "We're working on that software fix. I'm sure it will go out late this week." I've heard that two times now in the past two weeks. I have a husband in software. It's what he knows. And he knows he doesn't like the sounds of this. It's shaking our confidence in Animas.

In the meantime Grace's sugar has decided to do something fun. We've never had problems with over night high sugars or lows. Sometimes Grace will have a really active day and we check her through the night to make sure she doesn't have a low sugar. The lows are the sort term baddies. The highs, the long term baddies. We don't want those lows. Some parents of T1 kids check them round the clock. I have so much respect for them. We have not been in that situation. Until now.

Grace's sugar has started spiking in the night. Grace used to be between 120-200 when I went to bed. This is perfectly acceptable to me. but lately it's been 360, 320, 290. This is not acceptable to me. If she goes that high for too long, the ketone monster shows up. Ketones are those ugly acids that build up in your system and make you feel poopy.

Consequently, I'm waking Grace every few hours to check her sugar and give her a shot of insulin to keep things under control. A pump would make this a whole lot easier to deal with. Not the lack of sleep-you still need to check their sugar but at least you can be a stealth doser. Plug the info into the pump and off it goes. Buh-bye needles. Grace's arms are so bruised from the shots. I know the sets for the pump are no picnic. One of my T1 mom friends said today her son's bottom (where he likes to wear the IV hook up for his pump), looks like a pin cushion. There is no real "solution" in all of this that gives you 100% satisfaction. Lots of diabetes management involves negotiated victories and reluctant losses.

Ironically, Medtronic (competitor to Animas) called and left a message today wondering if they could send us a pump. I have to confess I was REALLY tempted to pick up the phone and scream YES. But I have some inquiries in the pipe line and I want to see where they take us. I tweeted about my frustration this morning and one my T1 heroes is a rep for Animas and picked up our cause. She's trying to get our questions answered for us and I'm grateful.

In the world of good news, Grace had mentioned while watching Cupcake Wars that she wants to open an allergen free, low carb cupcake bakery for kids like herself. I LOVE this idea largely because I'm pretty sure she would hire me. On a whim, I contacted our town farmer's market and they agreed for us to be a "star business" one week in the summer and we can sell "Type One Cupcakes" as a fundraiser for CHOP or the JDRF. When I told Grace this, she rushed to my cookbooks and grabbed every cupcake book she could find. She's making lists of cupcakes, allergen free ingredients, and icing concepts. She is all over this. I love doing things like this with her because it shows we're not totally powerless in all of this. Here is great example of turning a really negative two weeks into something positive as we plan for the summer.

I'm giving Animas a few days to inspire confidence in me once again. If they can't do that, I'm moving on to Medtronic. It's our endo's favorite pump and they're ready to ship me one now. If that's what I have to do to get our management back on track, then that's what I'll do. A negotiated victory or reluctant loss, I'm not sure. But at least we'd get off the limbo ride.

The Terrible, Horrible, No Good, Very Bad Week

I am so ready for this week to be over. This one has been a doozy.

I rarely cry anymore about diabetes. I get angry-really angry. I have days when I'm sad and struggle to get anything done. I spend my sleeping hours clenching my jaw and grinding my teeth. Most days I'm just flat-out frustrated. It's been a while since I've had a good cry over this.

Yesterday broke me. The week started off with Grace having insane blood sugar numbers. We basically spent a day in the 300 range, unable to get it to budge. It all made sense when Luke's nose started running like a faucet. Even if Grace doesn't actually get sick, the act of fighting off a bug brings on wacky numbers. My sweet Luke whispered to me anxiously, "I hope it isn't me making Grace sick." In that moment I hated diabetes so, so much. He's five. No five year old should have such worry. We spent a day high, and the next day dealing with low sugars. I hate the lows. They sneak up on you. They're dangerous. And for me, almost always unanticipated.

My phone rang at 10am yesterday. Every time my phone rings my heart jumps. It jumps again when I see it's school. This time it was Grace calling and she was crying. The birthday treat was not safe. It had soy and traces of tree nuts. I kept telling her I would run something up to school and she finally calmed down. When she did calm down she said, "Oh, and my sugar is 49." It was so nonchalant I almost missed it. She said she had a juice and was feeling better but I could tell she was mad, sad, frustrated-everything. For a 7 year old, this was the terrible, horrible, no good, very bad day playing itself out.

I took a deep breath and ran to find her a special treat she could enjoy. Practically every sweet treat out there has damned soy in it. I felt like calling Michael Pollen and shouting, "I NOW GET IT." I finally discovered peeps have no soy, no tree nuts--basically it's just plain sugar. Good to know for future low blood sugars. I ran them up to school and headed to Costco.

When you have a diabetic child you blow through a lot of juice--like you wouldn't believe how much juice we go through. When they discharge you from the hospital they should also hand you a membership to a discount club because that is where you will be spending your money. The trick to fixing a low blood sugar is 15g of carbohydrates. We prefer juice because it's fast. No chewing of sugar tablets. You just suck it right down. But finding juice boxes with only 15g of carbs is hard. Try looking the next time you are grocery shopping. Costco carries perfect little juice boxes that are exactly 15g.

So I needed juice. Sometimes Grace hates juice (she has to drink so much of it) so some time ago I picked up fruit chewies but the nurse told me Grace thought they were "disgusting." Sigh. So I added new a brand of fruit chewies to my list. And then I needed to add some kind of allergen-free sweet treat to the list because of all the school birthdays coming up.

That's when I lost it. Right in the middle of Costco. Pouring over labels, looking for allergens, trying to find the right amount of carbs. I just lost it. A little old Russian lady looked at me like I was crazy. I texted Tom, "I feel like there is an elephant standing on my chest." Just when I thought I would have to leave the store, I spotted giant packages of peeps. This solved one problem and my excitement over the brilliantly colored chicks helped me to calm down. People must have thought I was crazy--wow, that crazy lady really likes her peeps!

I spent the rest of the day angry. I was pissed that for some reason Grace's pancreas decided to kick in a little insulin that morning and didn't let me know I should back off her dose. I was angry it brought Grace to tears. And I was seriously angry at the parents who continue to send in treats full well knowing there are kids in her class--not just Grace-who can't enjoy those treats. And they can't enjoy those treats not because they might get rashy, or have gas, or hives-they could die. Am I being dramatic? No. My kid landed in the ER because of an allergen in her lunch. Do people really not care? I think, more often than not, that people are like me. As I become a more "solid" adult, it's occurring to me this is not the case.

In the short run, the peeps solved the problem. Grace burst out of school and jumped into my arms thanking me for the treat. In the long run, I'm increasingly frustrated that allergies and diabetes are impacting Grace's little world too much. It's a lot for a kid to go through day after day. It's a lot to watch her go through it day after day. It takes a toll on all of us: me, Tom, Grace, and even Luke. Sometimes I guess it's just best to accept this week sucked and try to move on.

Rock Star:)

Yesterday we were looking for something fun to do with the kids. We ran through the usual suspects of Philly area attractions but none were floating our boat. Tom remembered a woman he works with loves to take her girls to a rock climbing gym in Oaks. We made a call, set up an appointment, and loaded our two monkeys into the car.

Grace loves to climb. She loves it so much I wonder if she actually is part monkey. Luke isn't that much of a climber. If it can't be tackled, thrown, or kicked, he's generally not interested. We thought it would be something different to try. There's only so many times we can go to the zoo. Or the Franklin Institute. Or the Academy. So off we went.

Tom endured the climbing lesson while I entertained the kids. Then they were ready to climb. As expected, Grace took off. Her first few climbs were on the short side. But then she got bolder and bolder and pretty soon was flying up a 30 foot wall. I watched as Tom belayed her. The usual things ran through my head:What if she slips? What if her sugar goes low? How will I reach her if her sugar is low? What if she falls? I was watching Tom watching Grace and I knew he had her. It's not like he's ever dropped her or anything. Except that once when she was a baby and it wasn't really his fault. Kind of. His eyes were locked on her and I swear I could see little grey hairs popping out everywhere. But I knew he had her.

Grace repeatedly went up the giant walls. A few times I locked eyes with Tom and he just nodded. We were both thinking the same thing. Nothing stops this kid. Seriously, nothing. She didn't slip or fall and we had no problems with managing sugar. She did awesome. We talked about it later and both agreed that seeing Grace do stuff like that just makes our hearts swell. Here is our girl about 30 feet off the ground: