Superhero

When most people hear for the first time that Gracie can’t feel pain, their initial reaction is a little touch of awe and envy – “Wow, that must be so cool! I would love to not feel pain.” Some even describe it as a super power. I have heard more than once that she’s like a little superhero.

Let me tell you, not feeling pain is NOT a super power. Pain is a very important part of our bodies’ function. Pain is a signal that tells us to stop what we’re doing, or tells us that there is something wrong internally. Pain tells us when a wound is infected. Pain tells us when we’ve broken a bone. Pain tells us when it’s time to go to the bathroom. Pain tells us when we have pushed too hard, or when our shoes are too small, or when we have sand in our eyes. Pain is a gift.

Not feeling pain is definitely not a super power for Gracie, but I do think she has a special power not possessed by most. You see, Gracie has the ability to make everyone love her. She is ebullient, overflowing with charisma. Everyone who meets her is instantly in love with her sweet charming personality. She is so cute and silly and fun – you cannot help but love her.

So, although I do not believe that not feeling pain is a super power, I do believe my Gracie girl is a superhero. She’s Little Love – the superhero that makes everyone fall in love with her. <3

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The Bone or Not The Bone… That is the Question

There is something filling in where that piece of bone fell out. It looks hard and kind of gnarly, perhaps bone, but then again bone is not known to regenerate in humans, and I’m pretty sure she’s not part starfish. So maybe it wasn’t her bone that fell out after all – maybe it was part of the weird fingernail or something else entirely. We’re sure to find out soon, though, because the infection is back.

She has only been off antibiotics for one week, and the finger has worsened steadily since then. I have been waiting to take her in until it got worse enough to require antibiotics. I knew that the finger wasn’t better enough to stop the antibiotics last time, and knew it was only a matter of time before it looked infected again. But, as I knew she would be, the ID doc was pleased with the progress and thought Grace would be fine stopping the medicine on schedule. Perhaps I wanted to teach the doctor a bit of a lesson, perhaps I thought she could have been right even though my instinct told me otherwise. Either way, the finger is worse now.

I hope this gamble with infection will not lead to another hospital stay. Alternatively, if we do end up in the hospital, I hope the doctors are very aggressive with their treatment so that the finger finally heals.

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And then this happened…

The bone fell out of her finger. Again. No, it’s not some comical put-the-bone-back-again type thing, more like some terrible infection tore up her bone and made it fall out. This means that her finger will be a little shorter now, a little more deformed. It also means that the reason we were in the hospital was almost certainly osteomyelitis – bone infection – instead of cellulitis – tissue infection. Either is bad but by all accounts osteo is worse.

She has an appointment with ortho tomorrow, but I fear they will do nothing. No, I fear they won’t believe me that it’s bone – this doctor wasn’t with us when the other half of the bone fell out. I don’t want to be placated. I want the doctor to be as horrified as I am, to realize the true nature of this monster we’re dealing with (the disease, not Gracie!).

Last night, the nubby stub of the bone was sticking out. It moved when I pressed on it, and I immediately stopped touching it and covered it. It didn’t look like good healthy bone – it looked like dead bone sticking out where it shouldn’t be. And now it looks like a big empty hole with white at the bottom – like the bottom of a distal phalanx, to be precise. (After her bath tonight, the hole was filled with water and red tissue. Maybe I was wrong about it looking white at first? Or maybe something happened in the bath?)

I am dreading our appointment tomorrow morning. I feel sick thinking that the doctor won’t believe that it’s bone, that she’ll do nothing. I worry that I made a mistake in switching from the nationally known hospital to the other children’s hospital in the city. (Yes, we’re lucky enough to live in a city with TWO children’s hospitals.) I worry even more that we’ll have to go back to the big hospital, to the egotistical I-told-you-so attitude we’ll surely get from the doctors. No, that won’t happen. Not yet. But still, how will I get Gracie’s ortho doc to trust me? To understand that we’ve been through this before, that I know what we’re dealing with?

I worry too that she’ll want to admit Grace. What would we do then? We just got home – neither of us want to go back now. No, that probably won’t happen. Grace isn’t as sick as she was.

All I can do is pray. Pray to my beloved deity, sweetest Amma, to guide us tomorrow. Om amriteshwaryai namah. I bow down to Amma, the Divine Mother.

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2nd Hospital Stay of 2014

We are on day 4 of our second hospital stay of 2014, the third stay in 6 months. She has cellulitis again from a bite wound on her finger, the same one that always gets infections. We were supposed to go home last night, but the doctors decided to keep her one more night to make sure she tolerated oral antibiotics well. This morning, her finger looked worse again, so we’re here for two more days at least.

I have been thinking about things to write on here. There are so many good topics – like how she’s the only kid in the hospital who’s happy (since she doesn’t feel the pain of the infection), how we’ve found about a hundred things to entertain us in the hospital, how we are getting used to this hospital life, or even how much we like this hospital better than the other pediatric hospital in town. But it turns out that all I can write is that we’re here. We’re here and not leaving any time soon.

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The Story She Hates to Hear Me Tell

Grace doesn’t like when I tell this story. She especially doesn’t like it when I tell the story to someone she likes. But everyone wants to know – how did we figure out that she can’t feel pain?

When Grace was about 16 months old, she came home from daycare one day with half her thumbnail missing (top half, right thumb). I called her daycare lady, who had no idea what had happened. She didn’t think it could have happened at her house, since Grace hadn’t cried or anything. I didn’t think it had happened at home, since Grace hadn’t cried or anything. Well, the next day, about a third of what was remaining on her thumbnail was gone (the left third). The following day, a little more disappeared. We kept the nail covered for a long time after that and it eventually healed.

Then, she got a bad cut in the crease of a finger. Then, she lost another fingernail. Then, she had a circular wound on the tip of a different finger. And another. And another. We had no idea how she was getting these wounds, what could possibly be causing them. No one ever heard her cry when it happened, and it was before we learned to follow the trail of blood.

On the day before Easter, we gave the kids a bath at night and put them straight to bed. We got up early and went to Easter mass. While we were sitting in the church, I noticed a weird brick colored stain on Gracie’s new white cardigan. And then I noticed a brand new wound on her finger – it was the index finger on her right hand, and she had a cut about 1/4 of the way through the finger on the crease. The wound hadn’t been there when she went to bed, and she wasn’t around anything sharp that morning – we got up and immediately got dressed and went to church, and anyway it’s not like we were letting our 18 month old play with anything sharp. At that point, we figured out that the only thing sharp enough to cause that kind of damage was her teeth – her sharp little baby teeth.

We still didn’t put it together that she couldn’t feel pain, even after we realized the wounds were self-inflicted. It was when we were explaining the situation to her physical therapist and she (the PT) asked us, “Do you think she can feel pain?” that a light bulb clicked on. Not at first – of course, at first, the answer was, “Well, I *think* so, I mean she’s always been tough but everyone feels pain, right?” It was after a while, after thinking about all the times she should have cried and didn’t and all the unexplained finger wounds, that I realized her PT was right. THAT was a shock!

The index finger wound got infected, and I took Grace to her pediatrician. I will never forget that conversation with Grace’s doctor – I was so nervous that she wouldn’t believe me, that she might even think we were hurting our daughter. (It turns out that many parents of children who don’t feel pain are falsely reported to CPS so my fears were not unfounded.) Her doctor listened to me, stared at Grace’s finger for a second, and then got her boss and a needle. While the one doctor distracted Gracie, the other poked her with the needle, even drawing blood. Grace didn’t react to any of it. She had no idea about the needle – she was having fun playing with the doctor’s keys.

I left that office stunned, suddenly facing a future that was scary and unknown and hardly could even be real.

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It was Meant to Be

Today, I was late to work. We should have left the house early in order to take Gracie to daycare and then Jackson to school before I went to work. We didn’t, and the whole morning was changed because of it. We missed our window to take Grace to daycare, so we took Jackson to school first, but then Grace and I had some time to waste while we waited for the daycare provider to return from taking her kids to school. We came home. I did some blogging; Grace watched some TV. We left our house right at the time I’m usually getting to work.

We came across an accident on our way to daycare. It had just happened – I hadn’t heard the crash, but both cars were smashed up and airbags had deployed in both vehicles. Another motorist pulled over ahead of me and I followed suit, thinking my first responder training might be necessary.

One driver was out of his vehicle. He was dazed but not injured. In the other vehicle, though, an elderly couple were sitting. The husband, who had been driving, had open fractures in his hand but appeared otherwise fine. The wife was quite shaken but did not appear injured. I stayed with them, talking to them and reassuring the woman, until the police arrived. It was only a couple minutes, but it changed my day. I was meant to be there, meant to talk to that nice couple.

As the day went on and I had time to think about the events of the morning, I realized that if I was meant to be there for that couple, Gracie was meant to be here now, just as she is. Although her body does not work the same way others’ bodies do, she is not broken or imperfect. She is beautiful and sweet and impish and funny and cute. Yes, she has some serious medical issues, but she was meant to be this way. Just like I was meant to be late today.

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Grace Elizabeth – A Story of a Name

When I was younger and childless, I used to dream of the kids I’d have. I would have at least two – a boy named Jack and a girl named Olivia. Now that I’m a grownup with two kids, one of them is indeed named Jack (well, Jackson, but Jack for short), but I’m not as in love with the name Olivia. Livvy is so cute but Olive doesn’t sound pretty at all! Now, I love the names Emma and Abby (but not Abigail).

Chad has an ex named Emily, so when we were first tossing baby names around, Emma was never an option. Grace was one of our first choices. After all, this baby that was conceived with one less-than-cautious act must have come to us by the grace of God. The middle name wasn’t as quick to come to us, though.

When I was very little, I loved long, beautiful names – Samantha, Elizabeth, Anastasia, Alexandria. I was disenchanted with my plain and ordinary name and wished I could have a more glamorous moniker. My beautiful and extraordinarily awesome sister’s middle name is Elizabeth, so that added charm to the name for me. I’m sure you can see where this is going – how I contributed to the naming of the baby – since the title of the post is “Grace Elizabeth – A Story of a Name.”

Chad and I both loved the name Grace Elizabeth immediately, and it was chosen before we knew the gender of the baby (we had more trouble coming up with a boy name but had a few possibilities for that too). When Chad related the baby’s name to his mom, she was shocked – her mother, who had died when she was young, was also named Grace Elizabeth! This sealed the deal – the baby would definitely be named Grace Elizabeth, after her maternal grandmother and also because we liked the name.

Thank goodness it turned out to be a girl after all! Tyler Elizabeth just doesn’t have the same ring to it.

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