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:

Pump It

Grace loves the Black Eyed Peas so the title of this post goes out to her. . . .

I think one of the most frustrating aspects of diabetes is how technical a condition it is. When you say to someone, "I have cancer," people get that. They roughly know what cancer is and how it's treated. When someone says, "I have diabetes,"most people really don't get what that means and generally think Paula Deen is representative of the diabetes community. Explaining to someone what exactly diabetes is (and isn't) is ridiculous. "You see, you have this organ called a pancreas and it makes insulin. . . . . " And then try explaining how you manage diabetes. "You see, you need to take insulin. No, not a pill. . . .No you can't control it with diet. . . " And then I usually give up and conclude, "It just sucks."

The technology of diabetes is another doozy to explain to people. When we were in the emergency room when Grace was diagnosed, I remember a doctor who is also type one showing us her test kit. She wanted Grace to see that you can get it in all kinds of cool colors. Hers was purple and she thought Grace would like that. I remember her unzipping her bag to show it to us. I just stared, I had no idea what she was showing me. I remember thinking, "What the hell is all of this? What do you even do with all of that stuff?" Even now, when we're testing Grace's sugar in a public space, I don't think people are staring to be rude but it is very curious this whole technology thing.

From our first endocrine appointment, our doctor has pushed us to get an insulin pump. A lot of you have heard me talk about the pump and you may or may not have a good idea of what exactly a "pump" is. An insulin pump works like an IV. Here is a picture of one:

This is a pump. It's about the size of a cell phone-a little heavier. Attached to the pump is a tube that then attaches to Grace.

This is a medtronic pump but you get the idea. The pump delivers insulin via the tubing. It is completely awesome in that it eliminates shots. We will go from 18 shots every 3 days to 1 shot every 2-3 days. The site hook up lasts about 2-3 days and then you attach it to a new part of the body. Where the pump is not completely awesome is the learning curve.

The pump is a fairly complicated piece of technology. You have to learn a whole new vocabulary and a new approach to managing diabetes. It's damn intimidating. We were resistant for a while because getting the hang of managing diabetes has been a long process. We finally felt we had the hang of injections and things were going well. But every blessed appointment our doctor brought it up. And he got Grace fired up who would turn to me with her big, gorgeous blue eyes and plead for the pump. I'd say, "We're just not ready," Grace would beg and whine, and her endo would say, "I think you should listen to Grace." And then I'd shoot him the death stare. And feel like the worst parent in the world.

The pump offers us the chance for tighter control of Grace's numbers. Without going into too much technical stuff, the pump offers more precise dosing of insulin. We can also get better control of her night numbers. Sometimes when I check her in the middle of the night her sugar is high and we would normally fix that number but that requires a shot and I'm not waking Grace at 2am for a shot (or even a hug. She's just plain mean when she's sleeping). The pump offers us the ability to simply enter the information without disturbing baby bear's sleep.

We did our research and decided to go with a local company. Animas is known for their amazing customer support. I've read stories of people who needed a new pump because a screen broke and they simply drove to the company (in West Chester, PA) and there was one waiting for them at the front desk. Practically everyone who I've dealt with at the company wears an Animas pump. Our sales rep confirmed it's kind of like a cult. I like that. Cults are good. The animas pump comes with a remote. So Grace will wear her pump in a pouch kind of like this:

And then we use this remote to enter in her dose:

We like the remote feature because once Grace has her pump in a comfy spot, she won't have to fish it out for us to enter her info (which you can do if the remote goes missing). She begins eating, I count her carbs, enter a dose, and it delivers the dose. Talk about technology. . . .

So that's pumping in a nut shell. And this is where we are at. Animas is processing our paperwork and I'm sure there will be insurance issues because there always is. It's an anticipated fact of life around here. Grace is so, so excited. Personally, I'm mixed. I know this thing can really help us but it's something new and scary. It brings back lots of bad feelings from the summer of feeling overwhelmed and scared and angry. And I know as much as Grace wants this, the road ahead of us will not be easy. Wearing a pump 24/7 is going to be a huge adjustment--physically and emotionally. It's going to mean lots and lots of work (largely by me) to get a handle on this new piece of technology. But I think we've come far enough to know when to lean on our CHOP team and T1 friends for help. Grace will need her space and I'll need mine as we learn to accept this new aspect of diabetes management. In the meantime, Grace is kind of like Bart Simpson assaulting the mailman every day, "Where's my spy camera!"

Our next step is to get the pump and then head back to CHOP for another round of pump education. We'll walk out with Grace pumping saline for a week to make sure we have the hang of it before we "go live." I'm thinking around Easter we'll be up and running. Just in time to cover the peeps, chocolate eggs, jelly beans. . . .

Mistakes

I've been meaning to post something about our decision to move forward with an insulin pump for Grace. We have our first class next week. I'll catch everyone up to speed next week after class.

This blog is about Grace's courage and that spans a broad spectrum of experiences. Last week we had an experience that again demonstrated to me that Grace is much braver than the vast majority of adults I know. It also taught me a valuable a less in control.

At Grace's last allergy check up her peanut allergy had significantly gone down. This was amazing news. We had always accepted it would just be a part of Grace's life. On Friday, Grace's class celebrated the Chinese New Year with Chinese food from a local restaurant. I did confirm that that food was peanut free. At 2:45 the school nurse called to tell me she thought Grace's cold was taking a turn for the worse and she had developed a cough. I thought that was strange since she didn't have a cough when I last saw her. Thirty seconds later the phone rings again. The nurse is speaking quickly but I hear it in slow motion. Grace's back and stomach were covered in hives. Giant hives-the size of quarters. Her cough was not part of a cold. She was now wheezing. She was having a severe allergic reaction.

I live a minute from school so I rushed up there. The nurse wanted to hit her with the epi pen and call 911. Here's where I slipped. I said no. I would take her to the ER immediately. There was some back and forth about this but I was insistent. This was a dumb move. School was dismissing and I didn't want Grace's friends to see her go out in an ambulance. I thought to myself, "I can get her to the ER in 5 minutes-faster than an ambulance." I can hit her with the pen if I have to. I know the school nurse well. I know she knows her stuff. I should have listened. Maybe in the back of my head I was thinking, "I give the shots." I honestly don't remember.

Grace was kind of loopy-for lack of a better adjective. She complained her stomach hurt while Luke kept yelling "go faster mom!" I silently cursed my environmentally friendly car and it's inability to accelerate at lightning fast speed. I tried using Siri on my iphone to text Tom but unfortunately Siri was busy or something because she "could not process my request." A failure of technology all around led me to use words that I hope do not find their way into my children's vocabulary.

We got to the ER and they took us right back. Grace's sugar was up to 385. In the back of my mind I'm thinking, "Who cares." But it sent the nurses into a tizzy. "When was her last insulin?" "We'll get an order for insulin to cover the high!" "What was her number this morning?" It took every ounce of strength to not freak the hell out on them. I know they don't see a sugar like that every day but DID YOU NOTICE MY CHILD IS WHEEZING AND COVERED IN HIVES????? We got back to a room and saw a physician's assistant. She rocked it. She wanted to give an epi shot immediately but she was as cool as a cucumber. Wasn't concerned about that 385. She told me to run the diabetes show. She asked a few questions to make sure I had it covered and concluded-let us know what you need. I agreed and began to realize I had just played with fire by not letting the school nurse give the shot.

An epi shot is a big puppy. It would make most adults cringe. I silently gasped. The nurse did not hide the shot from Grace who began sobbing "No more needles." I insisted they administer it in her leg. They wanted an arm but I told them the poor kid wouldn't be able to lift her arm. They got her leg ready and all I could see were all the little bruises on her leg from her insulin shots. Grace was sobbing harder but not fighting it. I surprisingly kept myself together.

They began talking steroids and I immediately remembered Grace's T1 friend William who had to be put on steroids and what a nightmare it turned out to be. His sugar was in the 500 range and he was in and out of CHOP. I paged our edno at CHOP and I knew by the way he picked up the phone the situation was not good. His voice was urgent-his voice is never urgent. We discussed the impact of steroids. He was deeply concerned for Grace and ran through what to expect for the next 24 hours (crazy highs). He concluded by saying try to push them to keep Grace off steroids and get him back on the phone if I had to. He also said to page CHOP allergy (which I did not). I can only handle so many CHOP doctors at once.

In the end, the ER doctor kept Grace off the steroids arguing more harm than good would come from it. We would wake Grace for benadryl in the night and take it from there. The doctor spoke so softly to Grace. I was surprised how much time he spent with us. His ER was hopping-it was packed with patients and people crying in the hallways. He spoke in an almost whisper-like voice saying he understood what a drag T1 is and a food allergy. He was trying to hard to make a connection to Grace but she just stared at the ceiling and nodded every once in a while.

We walked out of the ER and Grace told me she likes CHOP's ER better. They have more games, check in on you more, and have better TV. And boom-she was back to normal. Squealing and laughing on the way home, demanding I play her music on the radio-while I stared numbly out the window.

I apologized to our school nurse and explained that I basically panicked. She completely understood but we both agreed that if there is a next time, she's going to administer the pen shot. In the end, no one is really sure what happened. There may have been peanut in the lunch. Or, it may be a new allergy. On Friday we go back to CHOP allergy to discuss what happened and maybe run a few more panels to see what's up. My take away from all of this is to give up a little of the control I have over Grace's health. I also took away a realization of just how many people care about Grace. Our school nurse called twice while we were in the ER to check on her. Her endo checked in all weekend by email to see what her numbers were doing and offer advice as to how to adress the highs and lows we were seeing. Her pediatrician received the ER report and called on Tuesday to make sure we were all ok. In summary: give up some control and let the people who care about Grace and have the medical training to help her do their job.

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.

Honeymoons and Vacations

We had Grace's 3 month check up today and I was dreading the blood work. December completely sucked. Her numbers were ridiculously high and I felt like I spent my days chasing ghosts. We adjusted her nighttime insulin, her carb ratios and then I began to notice how much insulin we were going through. In the back of my head I wondered if our "honeymoon" was over. The honeymoon period is when the diabetic's pancreas still produces some insulin. Eventually the pancreas tires of the relentless attacks and stops producing insulin. I wasn't sure if Grace's highs were a function of all the sweet Christmass goodies or the honeymoon ending. Ends up it's the honeymoon.

Grace's blood work was surprisingly good today. It took nearly half the appointment before the result was in so I sat there in a panic wondering if they tell the really bad patients at the end of the appointment. Or something like that. I get irrational when stressed. Grace had a 7.1 on her A1C. We both got an immediate high five from the doc. Our goal from the last appointment was to eliminate a lot of dangerous low blood sugars she had been experiencing and we did just that. Our doctor was really, really happy with the score.

They have this nifty program where they download all the numbers from your blood sugar meter. I was saying how frustrated I was trying to figure out what the heck was going on. He took one look at the data and started nodding and wincing and tilting his head in a way that gave me the "oh crap" feeling. He said the numbers told him that the honeymoon was over. I absolutely knew this was coming but there is still something so awful about hearing a major organ in your child's body has given up. The doctor nodded sympathetically as he told me but I kept it together in front of Grace. I guess maybe it's the finality of it. And I guess a lot of parents get upset given the way he delivered the news.

And then we discussed Disney and everything changed. The doctor was excited and his boss (the head of the practice) is a big Disney guy. When we reviewed Grace's case Dr. W. was raving about all the rides we need to hit and told us to avoid others based on lines but then caught himself. He shared (and I already knew) that Disney makes accommodations for kids like Grace. Not necessarily a "go to the head of the line" but a special priority when getting on rides. I said I felt a little bit bad about taking advantage of this because we emphasize all the time "You are just like the other kids." Dr. W. (who is not known for his bedside manner) told me to stop being ridiculous. To remember every sleepless night we've had. Every cry over a scary low sugar. The anger and frustration of all of this. "Put you and your family in the front of the line. It's what Walt wanted. You all deserve some fun." I laughed and then took a deep breath so I wouldn't cry in front of Grace.

I find these appointments incredibly emotionally exhausting. I stress for days ahead of time over the blood work score wondering if I'm doing everything I can to manage this beast. I stress going into CHOP and seeing all the other families with their own struggles. I told our doctor this and he just kept reinforcing what a great job we're doing and to try and relax a little. "You got this" was what he repeated over and over. I wonder if that self doubt dissipates over time. Do you get increasingly confident that "you've got this." Or is the stress a constant-something that never really goes away? I do know I won't let it in next week at Disney. The doctor explicitly told Grace to eat plenty of sweet treats and have fun. And to treat mom to an ice cream. I think Grace and I will seek out the biggest ice cream sundae we can find and celebrate all our hard work:)

Making a Connection

The kids do this funny thing at school called "making a connection." Instead of the whole class screaming "ME TOO" or "I HAVE THAT" the kids make a silent sign that looks a lot like a surfer's "hang loose." Luke does this all the time at meals. It's fun to try and guess the connection.

Over the weekend I took the kids Christmas shopping. Each year I organize friends and family and we adopt a Breathing Room Family. The Breathing Room is a local charity that helps families with a loved one going through cancer treatment. Not only is it hard for people to shop when they don't feel well, but also families struggle with heavy financial burdens.

We were shopping for boys ages 8 and 5. The kids LOVE to do the shopping and we were plowing our way through Five Below when Grace announced her sugar was low. The store was mobbed so I said let's take a break and head back to the car to do the check. Grace was INSISTENT this would not interrupt our shopping so we set up by the giant ball bins. She dribbled a basketball while I did the check. People shoot you the weirdest looks in public when they spot you doing a check. Admittedly, it is kind of a process: opening the kit, swabbing Grace's finger, getting the meter ready, lancet ready, sticking, bleeding, etc. Two moms gave me the "WTH" look and I shot them an icy stare. I know they don't know what's going on but seriously-mind your business. We always emphasize with Grace there is nothing to be embarrassed about.

After Five Below we went to Costco. I got the kids some food and realized I had forgotten napkins. I told Grace to check her sugar and I'd be back. When I returned Luke said in a whisper, "That lady over there was checking her sugar and she has a pen needle like Grace's." I looked up to see who he was pointing to and there was this little old lady who looked me in the eye and gave me a wave. I felt like we were in a secret club. We didn't talk but the smiles we exchanged were enough. We had made a connection.

Shoes Dropping

I was out for a run on Friday morning and it occurred to me that I had not updated the blog in a while. I was thinking about how I should update it even when things are going well because I don't want to give the impression that all we do is move from one crisis to the next. It's actually far from that. Most days are "normal" days around here. They certainly don't look normal to anyone else but blood sugar checks and insulin sticks have become incorporated into our daily routine. I don't think it will ever actually feel normal but we've accepted it.

While I was running I started to write the blog post in my head. I do this a fair amount. I write introductions to papers, blog entries, responses to student questions. I was going to title the entry, "Waiting for the Other Shoe to Drop" because it's been a while since since there was a bump on the road. Grace has successfully dodged any number of bugs, insurance is moving smoothly along, and we're all in a decent place with all this. I thought it was important to share this with everyone.

And then the school nurse called, "Grace has had a severe hypoglycemic episode." Thank goodness she also spit out "She's fine." I'm not sure if it was the seriousness of her voice or the fact that I was just about to pen a piece on how well we were doing, but it completely stunned me. The nurse explained Grace bottomed out at 43 in music class. I've seen Grace at 43 and it's not pretty: shaky, pale, lethargic, slightly incoherent. There's two pieces of good news in this. One, the system worked like it's supposed to. Grace felt awful, told her music teacher who immediately called the nurse, who, after hearing Grace couldn't walk to the office, immediately responded with juice and her test kit. Two juices later and a bag of pretzels and she was out playing at recess like nothing ever happened. Two: I know what happened. I hate the scary lows when you have no idea what triggered it. But I know exactly what happened. It was one stupid banana. We use a book to calculate carbs and I swore the number was too high for the banana I gave Grace for a snack. Ends up it was way off for it to bring her sugar down so low.

The rest of the day I was in a fog. I was supposed to be geting materials together for next semester and instead found myself worried, unable to concentrate, wanting to hug my girl. The nurse called a few times to let me know Grace was perfectly fine. I decided to give up on the day and read a book instead. After school I asked Grace about what happened and it was all very routine if not slightly comical to her. The school nurse running, all the extra juice-- an insulin free bag of pretzels! Of course I didn't think it was funny but I rolled with it. I make it a point to never let Grace see how upset I get when stuff like this happens. I save that for Tom. But again, Grace rebounded just fine. To her it was just another kooky day and she giggled when she told me maybe we should lay off the bananas for a while. So I smiled and she smiled and we just chalked it up to another day in the world of diabetes management.