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:

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.