Healing

A few months after Grace was diagnosed we started meeting with a therapist to help her deal with all the struggles, anxieties, and fears she was experiencing.  The sessions went well and we started to see some progress.  Our therapist warned us it could take time for all of Grace's emotions to come to the surface-like a lot of time. When she was ready to talk, Stephanie counseled us, we had to be ready to listen.

It's been almost one year since the diagnosis.  At dinner 2 weeks ago, unprompted, Grace began talking about her time in the hospital and it all just kept spilling out.  I put my fork down and started to panic. This was it. Here it all comes. What do I do? Is there an answer in a book? Who can I call? Of course you don't have time to do anything but listen so I did. Grace said she was scared in the hospital-really scared. Luke chimed in he was scared too. He didn't know what was wrong. I was watching the two of them hash out this conversation and felt overwhelmed but relieved it was coming out. Grace continued: "I felt so scared and alone. And I missed my friends. And I didn't know if anyone would like me anymore. I was just so sad." I'll give you a second to grab some tissues.

What came next practically knocked me out of my seat. I was prepared to rush to her side, hug her, squeeze her, whisper "I know." But that didn't happen. Instead, it went like this, "Hey mom-wouldn't it be awesome if I could give kids a bear when they first go into the hospital so they wouldn't be scared and they would already have a friend just like them!" Luke, "I want a bear!" She didn't stop there. She barely came up for air. "Hey mom-we can have a lemonade stand and sell cookies and drinks to raise money! Or we could buy an ice cream truck and you could drive it while I sold ice cream!" Luke, "Can I have an ice cream?"

And there it was: Grace's plan for healing is to help other kids on their path to healing. Just to be clear-Grace is not some ethereal presence sent to live amongst us. She's a normal kid. She annoys her brother, rolls her eyes at me, trashes her room, and is a flat out disgusting eater. If she asks to use your bathroom, say no, lock the doors, and tell her to go home.  That being said, her sense of selflessness continues to knock me over.

I sat on the idea for a few days and Grace kept bugging me about it. I contacted our social worker to see if this was even possible.  JDRF has a "Bag of Hope" program and, if you sign up for it, you can receive a "Rufus Bear" who is lots of fun because he has patches where he can receive insulin. We love Rufus but Grace was adamant kids needed a Brave Bear in their hands the second they are admitted. She wants it to be something they can squeeze, something they can hold with no insulin patch sites. We heard back within a few days that the idea had been approved and everyone at CHOP is over the moon about the project.  The "Brave Bears" program is off to a good start.  Our social worker is working on getting us the numbers of kids admitted each year. Once we have that number, we can come up with a fundraising strategy and move forward.  Grace wants each kid to receive a bear with a note from her. She's been working on some drafts which include messages like, "Diabetes doesn't change who you are. You are brave. You are not alone." I hope you still have those tissues handy. Every time I see her working away on this project it makes me so, so proud (even if she is a totally gross eater).

So many of you have already responded with awesome ideas to raise funds: silicone bracelets, Biking for Bears, Beer for Bears, Beef and Bears-it's fun to kick around these ideas.  So stay tuned. We'll be calling on everyone's help to get this project off the ground!

Respect

If you're like so many people I know, you're battling a weird spring virus or someone you know is dealing with an awful cold or cough. We got hit hard last week when Luke got nailed with the double whammy of strep throat and croup. I've honestly never seen him so sick. He curled up on the sofa with glassy eyes and a sweaty head begging for me to watch ESPN with him. So I did. It's what parents do. At its worst, he was up all night with a fever that wouldn't relent. We gave the advil/tylenol combo but it wasn't helping. Poor Tom looked at me at one point and asked if that was all we could do. It was but that was little comfort to Luke or us.

So it was only a matter of time before Grace got hit with something. Between a nasty virus and a highly contagious bacterial infection, odds were, we were in for something.  On Tuesday she woke up complaining her head, stomach, and throat hurt. Her head was scorching hot. I had an "oh shit moment." I tested her blood sugar-high. I tested for ketones-raging purple. We've dealt with little bugs in the past that gave us some ketones and high sugars but nothing like this. Rather than pull all my "what to do materials" from CHOP, I just decided to page the doctor. We got lucky. Our doctor was on call.

He walked me through everything we had to do. I tried to not sound panicked but I'm reasonably sure the doctor realized I was. I could tell he was deliberately speaking slowly-asking me to repeat information back to him. He asked if Grace could eat something. I asked her and she weakly replied, "no." The doctor had heard and he said "oh, that doesn't sound like the Grace I know." He gave me a plan of action that basically involved lots more insulin through the pump and lots of fluids. Grace couldn't move from the sofa. I'd page him in a few hours to give him an update. If the ketones weren't clearing out, we'd have to talk about a visit downtown.

We spent basically two days like this. We repeatedly saw blood sugar numbers in the 400s and yesterday we even hit 502. The 502 sent me over the edge. She didn't have ketones but a 502 (when normal is around 100) was just not good. Our doctor encouraged us to page him any time we had questions. He got back to us immediately and we made a few more changes to the pump but essentially he said this is what to expect when a diabetic child gets sick.  While it's certainly not "normal," it is normal in the world of diabetes. I was so frustrated at this point. Not only was Grace sick with an awful virus, but she was also hit by the truck of diabetes. It was infuriating. I just began spewing everything I was feeling and Dr. G just quietly listened. I asked if he thought I was being over reactive, overprotective, and basically a spaz. His immediate reply was a very firm, "no." He said he is the first to say "don't let diabetes run your life. Don't let it take over. Don't let it slow you down." But he said in this situation he would be the first to say, "Respect the power of diabetes-it's time to slow down and handle this carefully. This is serious stuff." We probably spent another 10 minutes talking-him reassuring me all would be ok. If I had the slightest question or doubt-page him. His last words were, "You are doing awesome. Hang in there."

We do spend most of our time pushing past diabetes. Grace most certainly doesn't let it slow her down. I try not to give it too much space and, honestly, most days it's just an annoyance and great sucker of time. But seeing what this thing can do-how quickly things can get really dicey- definitely made an impression on me. Grace weathered it well. While annoyed and frustrated, she seemed to like the mom time she got and the gummy worms for doing a good job at the doctors. This morning when she left for school she looked beautiful-happy and smiling and full of silliness (while Luke whined and carried on about something-you can't win them all). I'm hoping this thing is done and we can just move on. It was awesome seeing Grace run out the door for school. After she left I thought it was funny how excited and full of energy she was when all I could do was stare at the coffee pot wishing it would magically produce more. It's going to be that kind of day-maybe for a few days.

Just Keep Swimming

I had this profesor in college who was famous for raking students over the coals. He sensed weakness and pounced on it. If you had not seriously prepared for class, he would tear you apart. It was like sport to him. I loved it.

One day I was caught unprepared and the glee this man took in seeing me stammer was disturbing. He announced to the class, "Lawrence is frantically treading water in the deep Atlantic waters-don't any of you throw her a life jacket." I can laugh about it now. After years of therapy.

This "treading water feeling" is how I've felt lately with Grace. Life on the pump continues to be awesome for her. I know she has no regrets or questions about whether it was the right choice.  But this past week was completely awful.  Her numbers were all over the place and as much as I studied them, they were just not making sense. She's high, she's low, dear God she's really low. That was our week.

We had our check up with our favorite doctor yesterday and he got me back on course. He had pushed from day one to get Grace on a pump and he is so, so excited we made the move. He asked LOTS of questions about what we like and don't like. He's a really good listener. He totally sympathized with where we are in the process. I think Tom and I were obviously flustered while we delineated all our issues with pumping. While we talk, it's very hard to not get preoccupied with Grace to make sure she is ok. Grace is always curiously quiet in these appointments. Yesterday she was content to create an intricate doodle while we talked.  I encourage her to talk but for now I think it's important for her to find a way to deal with these long appointments filled with crazy medical talk.

A cool feature of the pump is the ability to upload all Grace's data to a web site that the doctor can then access.  We looked at the data and it was comforting to hear him say, "Oh wow, she is kind of all over the place." He walked us through how to read the data (less of a problem for Tom, more of a problem for me). Then he came up with a plan. We'll tackle one set of numbers at a time making very small changes as we go. But he also encouraged us to take control of the pump. He wants us to build confidence with our decisions and feel comfortable making adjustments--as long as we do it slowly and methodically. Once a week he wants us to upload Grace's data and he'll take a look.  He wants us to include what's going on with Grace. Has she been unusually active, unusually quiet, fighting off a bug, etc. We'll include our thoughts on what changes should be made and he'll review them. That giant breeze that overtook the Delaware Valley at 2pm yesterday? That was me-exhaling.

We also learned our doctor will be staying on for 2 more years. This was even more relief. Most patients see nurse practitioners.  In fact, I know of no other T1 kids at CHOP who see a doctor.  CHOP has a fellowship program that trains doctors to be pediatric endocrinologists. I knew in the back of my head that at some point the program must end and we'd lose our doctor. I feel extremely comfortable communicating my frustrations with him and I feel like, over the past almost year now, he has a good feel for how to communicate with me. I've said this before, but one of the major frustrations of diabetes is its unpredictability. To know we have some stability with our doctor is also a relief. I left CHOP relieved-relieved for stability and for the guidance CHOP continues to offer us. I always leave there feeling like we're not alone, like we can do this another three months. It sounds weird but I actually love the time I have with Grace after our appointment is finished. She babbles away in the backseat about music, school, life. It's extremely cool the way she wants to talk to me about whatever is on her mind. If diabetes is on her mind (which I don't think it is), she doesn't mention it. It's just a return to normalcy-back to our regularly scheduled program.

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.

Best Day Ever

Wednesday was pump day for Grace. We practiced for a week with saline which felt like a lifetime to her. We still had to give shots but we also had to use the pump to get the hang of it. Every day Grace whimpered, "I can't wait for Wednesday. No more shots." She was so excited for Wednesday, she woke at 6:30am and went charging down the stairs like it was Christmas.

We headed down to CHOP bright and early. We waited for a bit and Grace had fun playing with a little guy who was maybe 18 months old. He dropped his dad's jacket on the ground, Grace laughed at him, repeat. And then his mom had to check his sugar and Grace said, "I didn't know babies could get type one." It was sobering but I encouraged her to get right back to the game. Don't let diabetes stop the fun. I put on the smile while inside my heart broke. Such a little guy.

We met with our pump teacher and ran through a site change. Grace had done really well with these in practice. Basically a long needle punches a soft tube under the skin which is held there with adhesive. The needle is in and out quickly but it freaks Grace out (me too). When I went to do the site, Grace howled. I missed going in and the needle scraped across the top of her skin. Grace was not happy with me. Not happy at all. Our nurse convinced her it was no big deal, happens a lot, and maybe I deserved a second chance. I nailed the next one but not without a giant eye roll from my darling. I have no idea where she learned to roll her eyes like that.

After that, we were on our way. The smile on Grace's face--I can't even express how beautiful it was. She was just so proud and relieved. I think we were both relieved. I was completely spent after our appointment. I hadn't slept well the night before. I've been anxious about our transition and, generally speaking, a stress case. We were meeting Tom in Old City for lunch but had some time to kill so we hopped a cab over to Rittenhouse Square and Barnes and Noble. I desperately needed coffee.

We got all settled with coffee and snacks when I heard a familiar voice, "Well, hello there." It was my dissertation advisor, mentor, and dear friend who was also having coffee. I could have cried. Allen looks a lot like the old guy from the movie Up--only not quite as cranky. We spoke for a while about history, life, kids. Grace said she wanted to buy a journal because she likes to write. Allen said he wasn't surprised. Our conversation calmed me--he always had a knack for that- a knack for refocusing me. He smiled so warmly at Grace and assured me Children's Hospital never, ever lets you fall. Grace got fidgety so we were on our way. Our conversation allowed me to exhale-like seriously exhale.

We whizzed around the city again but got to Old City early. Grace thought all this cab stuff was completely awesome. We had some time to kill so we headed down Second Street. We were walking along and Grace says, "Mom-what's this funny little street?" I had totally set her up. I knew if we walked past Elfreth's Alley she would be curious. We ducked down the street and Grace wanted a quick tour. Our guide asked us how much we knew about Philly history. I responded, "not much." Grace whispered, "MOM" and gave me the squinty eye look. I made she "shhh" motion and it was our little secret. Grace giggled. She loved the tour and then we had lunch with Tom. It was our first meal on the pump and it was just so, so easy. No tears, no worry that someone would stare while we gave a shot, no concern that the dose wasn't right.

When we were finally on our way home Grace asked if she could listen to Selena Gomez. She was totally rocking out when she said, Mom-turn it down! You know what? This was the best day ever! No more shots, a new book, seeing your friend-he looked old-how old is he?-the little houses, lunch with dad. I can't believe how good this day is!" It really was a great day. To see Grace so, so happy after enduring so, so much crap from diabetes made me smile, too. The pump doesn't fix everything diabetes throws your way. But it sure does make things a little easier.

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.