Getting to know you. . . .

. . . .getting to know all about you. This is the way I feel about Grace's pump. So many of you have been so nice to check in and see how things are going.  I know a lot of you are curious to hear about our experience so far.  Sorry it's taken me so long to post an update. The truth is, life with the pump is crazy, unpredictable, awesome, and frustrating.

Here is the awesome: Grace loves her pump--completely, totally adores it.  All of our fears of her freaking out and not wanting to wear it have not come to fruition.  From day one, she clipped it on her pants and went on her way. We change her site every 2-3 days and that could be going smoother. She squirms and gets really anxious. Once it's over though, it's done.

Here is the frustrating: it's not like you just get hooked up to the pump, CHOP plugs in some numbers, and there you go. Enjoy! Our doctor sent me an email before we started pumping full of "you'll be frustrated" and "lots of sleepless nights" and "sometimes wishing you could go back to shots." I gave that a big ole whatever. We'll be fine! We're diabetes superheroes! We're so smart we'll figure this thing out in a day!  And, to a certain extent, I believed that to be true the first week.

And then Grace's sugar began dropping and dropping and dropping. And then her night time sugar began climbing, and climbing, and climbing. And then I realized what the doctor said was true. This thing requires a lot of work to get right. The wonderful thing about the pump is you can adjust Grace's insulin all day long.  Having an active morning, let's cut back on the insulin a bit. Having a waffles for breakfast, let's crank the insulin for a bit. Going high over night, let's see if we can get that back in range. But in order to get things just right, you fail. You almost kind of have to fail to realize where the pump settings need to be.  That means Grace will go low and Grace will go high as I attempt to find just the right dose to keep her where we want to be.  That means checking her sugar around the clock, getting constant updates from the school nurse, looking at numbers, and trying to identify trends. You make changes but you make them ever so slowly. I try not to get mad at myself when the numbers don't work out. I inhale, exhale, repeat. I'm tired. I haven't slept through the night in I don't know how long. It makes me irritable and, honestly, a real joy to be around. Ask Tom.

Sometimes things go wrong and they go wrong in a bad, bad way. Grace was in the 300s all night Wednesday. I figured we just needed to crank the insulin a bit more.  But when she woke up she was still in the high 300s and it was climbing. I had a major "oh shit" moment and realized her pump wasn't working. I pulled her site and saw the tube that delivers her insulin (canula) was bent at a 90 degree angle.  Essentially no insulin got into her all night long. I knew to test for ketones (the nasty acid that builds up in your body if you have no insulin). In the past, we've had experience with mild ketones. But as soon as I dipped the stick in Grace's pee it turned hot pink. Another oh shit moment. It's extremely easy for kids (and adults) on the pump to get ketones.  It's also extremely dangerous.  Too much ketones leads to bad bad things that I won't think about it. CHOP trains you for this in their classes so I knew what to do.  Unfortunately, it's a lot of sitting and waiting to see if things are working. Grace was tired, her stomach hurt (if she started to vomit we'd be on our way to CHOP), and headachy. We sat and watched a movie and I hoped for the best. By noon, she was fine and back to school. Again, I inhaled, exhaled, repeated.

To bring Grace's sugar back in range, I had to stop the pump and give her a syringe shot. Her reaction to the shot confirmed for me why the pump is right for us. She sobbed, was angry, and adement she would not go back to shots. I feel the same way.  I like what the pump has to offer us despite all the work we're putting into it. It's a challenge-like a giant puzzle with multiple moving pieces and those pieces change every day. I've never been a fan of puzzles but I'm working on this one, talking to CHOP, other T1 parents, and reading as much as I can. I'm confident we'll get this. In the meantime, patience has to be the name of the game.

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.

Community

I could go on and on about our trip to Disney but I'll keep it brief. We all had a really amazing time and it was so fun to watch the kids experience the rides, characters, and food. Grace's numbers were surprisingly good. We hovered in the low 200s and avoided ketones. We had one bad low sugar that left Grace extremely shaky but Tom swooped her into his arms and we rushed off to First Aid. Their staff was great. We just explained the situation and they asked if we needed a meter or juice (we didn't). Then they offered Grace a bed to rest while her number came up. And that was it. No checking in, no paperwork-they left us alone which is exactly what I wanted.

I mentioned this on Facebook but wanted to return to the sweet encounter we had with another diabetic girl. I carry our JDRF backpack because it has an insulated pocket for insulin if it's too hot. On our way out of the Animal Kingdom I heard this little voice say, "Excuse me? Does someone in your family have diabetes?" We turned around and there was the sweetest girl-about 10-with cute red, curly hair. She and Grace hit it off like they were eternal best friends. Lily's mom assured us it does get better and Lily was proud to show off her "Pod" insulin pump. She also told Grace all about diabetes camp and what fun it is to meet lots of other kids just like her.

I was so struck by this encounter for a number of reasons. One-practically every kid we meet with diabetes is amazingly articulate about their condition. Lily had no fear of approaching us, breaking down how you use the pod pump, and all the cool things her remote did. She was nothing short of an advocate for diabetes normalcy. She was just oozing, "HEY-you're just like ME!" And Grace beamed. Grace repeatedly asked if Lily stayed at our hotel and how great it would be to see her again.

Pushing into the new year it's become very clear to me that as important as my diabetes community is, Grace needs one, too. We have a few options including a new kids' support group in our area and reaching out to the JDRF. Camp also sounds great but even under the best of conditions, I'm not ready to let Grace go to an overnight camp. This will be open to discussion.

Second, I'm learning just how important community is to the diabetic families we meet. Grace has been increasingly frustrated with the insulin shots. This frustration seems to come and go and we're knee deep in it now. She is *really* fixated on getting an insulin pump. We're totally fine with that. I think we've reached the point where we can push through the classes and tackle this piece of technology (I'll post later on what the pump is, how it works, etc.) But last night was bad at bedtime. Grace had lots of tears and is clearly frustrated and tired of all this nonsense. After I settled her down and swore a solemn pinky promise that we would get the pump, I headed downstairs to find this on our dry erase board in the kitchen:

"I HATE DIABETES."

Grace writes all kind of things on the board. Usually she chooses peace signs, hearts, butterflies, sweet notes to me. I swear this one shook me hard. I was still thinking about it when I looked at my messages and saw I had one from a mom who has a young son with type 1. She needed to vent. It had been a rough night. Her son, too, was just tired of the whole thing. Grace was crying because she wants a pump. Her little guy was tired of the pump. I've never actually met Alyssa in person. We were introduced by a mutual friend. But the great thing about this community is you don't need to actually meet that person face-to-face. You just need to know someone is there to listen. Not to judge. Just a set of understanding ears.

Reaching out is such a huge part of the support network. None of us is superhuman. Somewhere out there, there is a parent and child having a rough diabetes day. Last night that was me and Alyssa and my friend Lisa. Lisa's son is currently at CHOP dealing with high blood sugar and a confusing diagnosis of pneumonia/asthma. I know she was having a rough night. I had a rough morning with Grace's low blood sugar and her reluctance to let go of my hug to head back to class. When you share these stories with people in the community they nod because they know. This is not to say those of you who don't have a diabetic child don't know. But it's that connection thing I wrote about last month. The connection is huge and it's what helps us all survive day to day.

Thankful

This time of year is all about being thankful. This could easily turn into a post about how I'm thankful for all the great doctors and staff and CHOP or how we have a roof over our heads and food on our table. Perspective is a good thing. But this post is slightly different.

Lately, I've been thankful I realized my breaking point and have done something about it. As I've said time and again, diabetes management is a 24/7 operation. We don't get a break around here. There is no taking it easy or "let's just take a few hours off." The stress and the worry weigh on you in a way that is almost impossible to capture in words. There isn't a moment I'm not worried. A constant knot has set up shop in my stomach.

About 3 weeks ago I snapped. Grace had a bad day of lows and went to bed low. After I tucked her in and explained I had to check in with her every few hours, I just collapsed into Tom's arms. I sobbed and sobbed and sobbed. We both agreed it was time to page the doctor and I prayed and prayed and prayed our doc would be on call. And when it was our doc and I heard his sweet southern draw, I sobbed and sobbed and sobbed some more. Long story short, Grace was fine but I was not.

And so I decided to make some changes. Running to me is always the perfect analogy here. You can't treat diabetes like you're in a constant training cycle or you'll burn out. I burned out. But then again, I've always been known to go out too fast. Something had to give. I decided each day I would do something just for me. And so here is what I am thankful for:

Walking the dog. Something so simple as taking Shelby for a short walk clears my head and leaves me just plain happy. She pushes her nose through the leaves, flicks my hand as we walk as if to say "HEY JEN ISN'T THIS AWESOME!" (Shelby always speaks in caps). And sometimes I run into a neighbor or friend. Walking is a good thing.

Running. I stopped running right after Grace was diagnosed. So did Tom. I simply did not have the energy for it. Now I'm back. Not every day. Not every week. But the great thing about running is it's always there for you. Shoes just sitting there waiting to go. I'm not training for anything. The goal is to get out the door. Sometimes it happens, sometimes it doesn't and that's ok.

Reading. I found myself watching a lot of idiot TV. Idiot TV is ok in limited doses but I found myself just staring and not even really enjoying the dumbness on the screen. I bought myself an inexpensive Kindle so I never have an excuse not to read a good book at the end of the day. This was a bit of an indulgence but I'm so glad I got one.

Church. I was raised Catholic but have fallen away from the Church for a variety of reasons. My house teaches tolerance and while we have not gone to church with the kids, I have always made a point to discuss Jesus and the importance of living his philosophy. I've started attending our local Presbyterian Church with the kids. I'm not all there with the savior stuff but I am there with the principle of "sometimes you just need to let it go and have faith things will be ok." It's an hour of peacefulness on Sunday morning that leaves me recharged.

Food and wine. I should just leave it at that. Food and wine are good things! I was going down a bad road of not eating well, of dodging meals and snacks, and then eating crappy food (Halloween didn't help). But now I'm back on track. I'm largely eating a vegan diet before dinner and thinking about what food I need to get it through my stressful days. I've also decided good wine is a must. The little treat of a nice bottle of wine makes me so very happy at 8pm.

My relationship with Tom. I adore my husband. One of the reasons I adore him so much, is he puts up with my lunatic ways. No matter how stressed or upset I am, he is my rock. Of course he gets upset and stressed too, but expresses it much differently. Once Thanksgiving passes I am taking up one of our babysitter's offers to get us out of the house regularly. Annie is a sweetheart and said she knows how stressful this all is and wants to help. In a giant step forward, I am letting her help us. Once a week is date night out. A cup of coffee, browsing the book store, a beer and sandwich--Tom and I need this time to recharge.

Friends. Social media has been wonderful. Diabetes management can be damn lonely. I know when I have a bad day, I can throw something up on facebook or twitter and someone will respond. I also know that when I post something my sister Meghan and my friend Joanne will text me until they know all is ok with Grace. That support means everything. When Grace is having a bad day and my phone is buzzing with texts, it just eases that loneliness.

Writing. I'm thankful I decided to commit all this to "paper." Sharing our experiences has been cathartic for me. To have a place where I can "dump" all this stuff is such a relief. Thank you for reading and giving me an audience.

Inhale. Exhale. Repeat.

This was one busy week for us at CHOP. On Monday we had our visit with Grace's therapist and on Thursday we had an appointment with Dr. G. Both appointments went so well. I swear I'm sleeping much better.

On Monday, we continued discussing how we can best help Grace accept her diagnosis. Grace played with a social worker while Tom and I talked strategy. We struggle the most in two areas: Grace's grumpiness and cranky behavior when she has a high blood sugar and taking an insulin shot in a reasonable amount of time. When Grace's sugar runs high, she is very emotional and irritable. In the past, I've treated this as a strictly behavioral issue. Simply put, it's behavior I find unacceptable. When discussing this, our therapist suggested a different approach. If Grace wants to crawl into my arms and have me hold her, I should do it. If Grace needs me to drop everything I'm doing to give her the attention she is demanding, I should do it. Some behaviors though, are just unacceptable. Hitting, being mean, rudeness, nastiness-not to be tolerated. We should also be sure we are using these moments to help her figure out how she feels when she is high, so she can tell us.

The other strategy we discussed was how to make insulin go more smoothly. Grace had been creating increasingly complicated rituals to put off getting her insulin. She needed her blanket, something to squeeze, a dog, a cat, another cat, Luke to make a funny face. It was taking upwards of 10 minutes to get her settled for a shot. Of course prolonging the inevitable was making her more and more anxious and were caught in a vicious cycle. Our therapist suggested a sticker reward chart. If she sits down and takes a shot quickly, she gets a sticker for her chart. Insulin should be like flossing--a little uncomfortable but something we need to do. I was floored how quickly Grace took the system. I'm looking at a wall of stickers in my kitchen. For now, problem solved.

On Thursday we got great news at the doctors. Grace's A1C blood test was fantastic. The test monitors progress overs a 3-month period in how we are managing the diabetes. The doctor *hopes* for around a 7. We came in at 6.1. The doctor's smile was HUGE--he was positively giddy with that number. The only thing we need to do differently is deal with Grace's lows. Recently, Grace has had a lot of lows. Practically every afternoon and before bed she goes low. So we're going to adjust her long-last insulin (levemir) and see if that helps.

Grace told me she likes Dr. G because he's so nice to kids. I like Dr. G because he's so nice to kids and freakin' smart. He and his practice took us from an A1C test score of over 14 to a 6.1. He commented that we've reached the part where we are controlling the diabetes rather than it controlling us. I do feel we've made that transition and while all the bumps have not nearly gone away, we are settling into some sense of normalcy.

Advocacy

Soon after Grace was diagnosed, I was listening to a program on NPR that featured a discussion of Juvenile Diabetes. The host posed the question, "For you as parents, what is the hardest thing about this disease?" There was the standard response of the worrying, the frustration, etc. One dad went down a slightly different path and answered, "the isolation." This really resonated with me. He went to explain that for him, and many parents of diabetic children, there is a tendency to withdraw from family and friends--to not even talk about how their child is doing. Unless you have a child going through this, it is very hard to convey to people how life-changing this disease is. So, you don't convey it. Family and friends may catch a glimpse of what "a day in the life" is like but it's such a technical and chronic disease, I find it hard to even explain to people how Grace is really doing. People ask and my stock response is "we have lots of ups and downs." It seems to beautifully answer the question both from a physical and emotional perspective. Most people don't understand what a low or a high is, or what an A1C number means, or frustrations with carb ratios-- it's so hard to explain. So typically, I don't.

Back to the dad. He said the one thing that helped his family was getting out there and being an advocate for his child. He became very active in the Juvenile Diabetes Research Foundation where he met other parents who shared his same frustrations and struggles. They spoke the "language of diabetes" and he had a sympathetic audience. It's not to say our family and friends are not sympathetic--because you all are. The check ins, phone calls, texts mean so much. But there are times when you need to connect with people who share your fears, anxieties, frustrations, and anger.

So I took the plunge and reached out to the JDRF. The JDRF has been rolling out its "Promise Campaign." They are hoping families with type 1 children across America will meet with their local representatives to advocate for more research funding. On Monday Grace, myself, and a JDRF advocate met with Congresswoman Schwartz. Grace was very, very quiet. Schwartz explained last year there was a little boy who was so excited to show her his insulin pump, and how it worked, and what his numbers were, and he was just gushing with diabetes information. Grace didn't do that. She curled up in a ball on my lap and buried her face in my shoulder. I didn't make her come to the meeting-she said she wanted to be there but she still struggles to talk about it. I would have loved if she could have explained the hardships of diabetes but I think actions sometimes speak lourder than words. She sat there, vulnerable and sad, crushing my hand. And I think it made an impression. Diabetes isn't all about whiz-bang technology that makes everything all better. Kids fundamentally struggle with this and people need to know that.

Congresswoman Schwartz is not only smart and articulate but also kind and compassionate. She whispered softly to Grace that she would be her friend and fight for her. And I believe her. After our meeting I spoke with the JDRF advocate. Her son was 7 when he was diagnosed and is now heading off to college. We spent a good amount of time sharing the frustrations of this disease but it was also so reassuring to hear how well her son was doing. I got that connection I was looking for. And now I have a new friend who knows the ups and downs and has promised to be there for my family to answer any questions and be a source of support. She looked me right in the eyes and said "You are not alone in this." Those were exactly the words I needed to hear.