No one thinks America’s health care system is perfect. People argue on every side of every issue about the flaws in the system. Personally, our family has benefited from the Affordable Care Act, and I am very grateful we have its protections. Without the ACA, Gracie’s insurance would have dropped her years ago and we would have been forced to add her to one of our employer-sponsored group plans for an outrageous expense (it’s $600-700 per month to add a child to either my plan or Chad’s).

Back in the day, before the ACA, we made a choice to enroll our children in their own health insurance plans. Each child has a child-only plan (through separate insurers) that is not tied to any other person. We have never had any problems with Jackson’s plan, but then again he’s a healthy kid so we’ve never really tested it. We haven’t had too many problems with Gracie’s, either, but we were paying huge dollar amounts out-of-pocket each year between her yearly deductible, hospital stay deductibles, prescription drug costs, etc. Last year, we finally got her enrolled in secondary Medicaid to defray our out-of-pocket expenses, and it’s been a lifesaver. We would have lost our house if not for the secondary insurance; we are not out of the financial woods but things are a lot less scary now.

Ever since we’ve added the secondary plan, Grace’s primary insurer has been refusing to pay for things left and right. We ordered a wheelchair for Grace because she tires very easily and long walks are too much for her. Anthem denied it. Medicaid paid the full cost. We ordered new gloves for her—Grace wears special gloves to protect her fingers from her teeth and from accidental injuries—and Anthem denied them. Medicaid paid the full cost. We ordered some fancy wound care dressings (Mepilex Lite) for Grace—these dressings have saved us from hospital trips, including the one that seemed imminent after Grace removed her fingernail last month. Anthem denied them.

I called the medical supply company and spoke to a rep, who told me that because Anthem would not pay the full cost of the dressings, they could not fulfill the order. I asked her how much Anthem would pay, and she said they would pay nothing. I asked her what the total cost was, and she said it was $800 for the box of four 8″x20″ sheets of Mepilex. WOW. Next, I emailed Grace’s nurse case manager at Anthem and explained the situation and asked for her help. I mentioned in my email that an $800 box of supplies could save Anthem from paying for a $30,000 hospital stay, so the seemingly high cost of the Mepilex is totally worth it.

The nurse case manager blew me off for a week. I kept bugging her, sending emails and reminders, and finally one day she called with a rep from the medical supply company conferenced in. Unfortunately, I didn’t hear my phone ring. The nurse case manager and med supply rep informed me that the company from which I was ordering the medical supplies doesn’t contract with Medicaid, so because they are contractually unable to bill me directly for the cost, they could not fulfill the order. The nurse case manager drove home the point that it was Medicaid, not Anthem, holding up the order. Infuriating—I’m actually very glad I didn’t hear the call.

In the meantime, Grace’s fingers healed to the point where she didn’t need the fancy wound care supplies. THAT is a miracle—her body is getting stronger, apparently, because that wouldn’t have happened a year ago.

I emailed Grace’s doctor to find out if she knew any other way for us to order Mepilex, or if she knew any companies that contract with both Anthem and Medicaid. I also looked online and found a box of four sheets of 8″x20″ Mepilex Lite for $129 from a different medical supply company. (Keep in mind the other company was charging $800 for the exact same thing.) Amazon carries it, too, but they charge slightly more—$133 for the box of four sheets.

So, my rant is this—the company that works with Anthem and Children’s Hospital charges over six times as much for the exact same thing as a company I found using a simple Google search. Why do they mark it up so much? Because they know the insurance company is only going to pay them a fraction of what they bill. Why would the insurance company agree to this? Because it drives up the cost of health care, thereby netting more income for the insurance company. ARGH!!! This is a serious problem. The Affordable Care Act did great things to help Gracie stay insured, but did nothing to touch the fraud and imbalance at the core of the system.

There is a happy ending to this story. After I ordered the Mepilex Lite at $129, I emailed Gracie’s doctor again, and she was upset that we had paid out of pocket, so she got her office manager to work on getting it covered for us. I am expecting a call from a different medical supply company that does contract with Medicaid, and if I can get the Mepilex covered by insurance, I can return the box we paid for out of pocket (hopefully—not sure if they’ll take it back but they should because it’s unopened). At least Gracie’s doctor is on our side. She works hard for us, in between working hard for all her other patients. Now if I could only get that nurse case manager to do something, too…


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Amazing Grace,
how sweet the sound
that saved a wretch like me!
I once was lost, but now I’m found.
Was blind, but now I see.

‘Twas Grace that taught my heart to fear,
And Grace my fear relieved.
How precious did that Grace appear
the hour I first believed.

Those words really speak to me, especially the second stanza. I never knew fear until Grace first had a life-threatening incident. But Grace, being so amazing, pulled through. Every time, she pulls through. She is amazing.

She managed to avoid antibiotics for this most recent finger infection. It never got to the point where she required a hospital stay; this is the first time she’s ever gotten that close and pulled back from the edge without medical intervention. We are not quite out of the woods yet; there is a purple area under her skin that could still necrotize and poison her bloodstream. But, it could also come up through the skin as a scab. Time will tell which way the wound will go. Right now, it looks pretty good, all things considered.

As for her vision, it is getting worse. The other day she couldn’t find her cup in a brightly lit room; it was right in front of her. I gave her verbal directions and eventually she found it through a very blind-seeming groping. It hurts my heart to watch her vision deteriorate; it won’t be long before it’s gone. But, medical science is advancing quickly in vision areas, and there’s a chance she could regain some or all of her eyesight through technology. Was blind, but now I see. I know that verse is metaphorical but it might become literal for her. I hope so.

What I do know is that Gracie is amazing. She continues to defy the odds, to learn the impossible, and to do it with grace and charisma. She is not limited by her disabilities and I should not be, either. How precious has my Grace appeared since the hour I first conceived.

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Four Months

Gracie’s last dose of antibiotics was on October 17. She has made it four months and about a week, which is either her longest stretch ever or her second-longest. When she was 8 months old, she got RSV, which turned into pneumonia, necessitating her first-ever course of antibiotics. She spiked a fever from the RSV on Easter Sunday in 2011—it’s easy to remember timelines when events occur on holidays.

After that RSV/pneumonia episode, Grace got pneumonia again the following October. Then again in December, then in February, which led to her first-ever hospital stay in February 2012. I remember clearly that she had a bunch of unexplained wounds on her fingers during that hospital stay—it was the beginning of her finger-biting, but we didn’t know it at the time. On Easter 2012, Grace bit her finger at church, which was the wound that turned on the light bulb and made us realize she doesn’t feel pain. She had a course of antibiotics for that wound too, and for many other wounds over the next few months, culminating in gangrene and her first amputation in August 2012. She had a five-month course of antibiotics after the gangrene/osteomyelitis incident, stopping antibiotics in January 2013. Five days after her last dose, she caught a nasty virus which again led to pneumonia and another long course of antibiotics. She finally was off the medicine again in about March 2013.

In June 2013, Grace bit open the finger with the amputation (and a few other fingers, too) and her bone was exposed. It was not long before the wounds became infected and she was again on antibiotics. In August 2013, we found Dr. D, the awesome infectious disease specialists who just switched hospitals, and she followed Grace through a shorter course of antibiotics. About ten days after her last dose of medicine, Grace spiked a fever—the day before we were supposed to fly to NYC to see a doctor who specializes in people who don’t feel pain. She got worse and worse over our trip and was admitted pretty quickly when we got home with a bad kidney infection. When she stopped the meds after that kidney infection, it was about 10 weeks until she developed a bad finger infection. That was January 2014. She was on antibiotics for most of 2014, usually with no more than 10 days in between courses for various infections. That all culminated in August 2014, when she had the bone infection and amputation and antibiotic resistance. She finished her course of meds to treat the osteomyelitis on October 17, 2014.

Today, I am taking Grace to the doctor because one of her fingers is badly infected. She removed her fingernail Saturday (I don’t even know how that’s possible!) and I’ve been having trouble keeping the wound dry. Yesterday, purple spots appeared in the wound. Purple is a bad color for wounds—it usually seems to indicate gangrene or tissue death. I texted her doctor but she never got back to me, so off to her office we go. I do not know if oral antibiotics are going to work for Grace; she has had so many infections and courses of antibiotics that they don’t work for her any more. I am worried that she needs to be admitted, but the finger doesn’t look bad enough for an ER doc to admit her. Hopefully her doctor will be able to find a solution; I’m not sure there is one at this point except to wait and see what happens.

But still, four months is great. She had a chance to start to recover from her antibiotic dependence. There’s a chance the medicine will work for her now. I’m not feeling optimistic but am trying to keep my hopes up that she will get by on oral meds. Fingers crossed… (Except the infected one.)

UPDATE: We just got back from the doctor’s office. Grace’s finger actually looks better now than it did this morning—could it be that her body is fighting the infection on its own?? Her doctor, who is absolutely awesome, took blood and x-rays, even though we both expect it to be normal, just in case Grace ends up being admitted so we can have a baseline. She didn’t prescribe any antibiotics. She knows as well as me that there’s no point in using a medicine that doesn’t work anyway. So, we’re going to wait and see what happens. Maybe, just maybe maybe maybe, we can get through a few more months without antibiotics. Still keeping those fingers crossed!

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This past weekend, Gracie and I attended the funeral of the little boy whose sister goes to the school that kicked Gracie out last fall. It was heart-wrenching; those poor parents look haggard, as to be expected, and there is just nothing that can take away their pain. I was glad to be able to give the mom a hug, and the dad, too. They need to know how loved they are.

The funeral raised other emotions for me, because we were surrounded by people from Gracie’s former school. I was dreading seeing those people, but when the time came and I was face-to-face with them, I had no sense of animosity. Interestingly, both of her former teachers seemed to be fostering ill-will. The one who utterly betrayed us — who assured me over and over again that I could trust her, and then turned around and used all the information I gave her about Grace’s medical condition to get Grace out of the school — wouldn’t even speak to me. She has no reason to be upset with me. I have never done anything to her, other than trust her and confide in her. But she has done a grave injustice to us. She is the one who put on the band-aid that turned Grace’s infected finger into a life-threatening bone infection, so maybe she feels too guilty to look at us. I doubt it, though. I think she’s just small-minded. Who would have thought?!

The other teacher said hello to Grace but did not look at me at all. She is the one who called to tell me “Grace isn’t listening and it’s been 10 minutes.” So I guess I can see why she’d be upset with me — I pulled my daughter out of the school because of her phone call. She’s also the one who was terrified to have Grace in her class, even though her own daughter has an unusually high pain tolerance. Maybe she doesn’t want to look me in the eyes because she wouldn’t want that to happen to her daughter? I don’t know.

Despite these surprisingly bad reactions from the former teachers, the executive director of the school was classy as usual. I was not about to talk to her, but she approached us at the reception and thanked us for coming to support T & H. She may not have been happy to see us, but she didn’t show it. I am grateful to her for her reaction, even though I know she was the one who truly pulled the plug on Gracie. When we had that awful meeting with all the school folks, she was also very classy. Even though ultimately she ruled against my child, she was just in her approach. I respect that.

As for the other school staff that weren’t involved in the breakup, it was nice to see them. We got a chance to say goodbye, a chance to get some closure with these folks who really meant a lot to us. I found out from the kindly front-desk woman that no one knew what happened — they just knew that one day Grace was there and the next she was not. I told her I wasn’t sure we’d even be welcome at the funeral, and she gave me a big hug and said we officially were. She is kind. I am glad we got a chance to say goodbye to her.

And it was truly great to see some of the other parents. I care about these people, and apparently they still care about us too. I suspect that they’ve heard through the grapevine what happened, but they were glad to see us and we were glad to see them. I told J’s mom that Grace broke up with him and M (Gracie’s old “girlfriend”), and now she’s “dating” a different boy and girl at her new school. C’s mom and dad and I chatted while Gracie & C played, and we all realized we need to get our kids together for a playdate — they were just too cute together. The PTA mom from the school gave me a big hug. And even T, the mom who lost her son, seemed genuinely happy to see us. They truly are family, even if we’ve been dumped. And they are innocent bystanders, anyway — the siblings and cousins of the ex-boyfriend, so to speak. We are still allowed to like each other even if we are not allowed to be part of the family anymore.

It hurts to know that we’ll probably never see any of these people again. But the ultimate hurt is the loss of that sweet boy. At least the people from the school are still alive, and if I wanted to make a fool of myself I could reach out to them. T & H will never see their sweet child again. My little heartache is nothing compared to their huge ocean of sorrow.

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When Gracie was at the school for blind kids, she had a classmate who also had significant medical needs in addition to being blind. I always felt extra-connected to her mom, because we both knew what it was to have a kid with multiple difficult needs. This kid had a brother, a beautiful little boy with no special needs and a radiant smile. On Friday the 13th, the mom was taking her two kids to the library when they were hit by a car. The little boy bore the brunt of the impact and suffered a skull fracture. He died Saturday (Valentine’s Day).

I’m shattered by the loss of this beautiful boy. What a precious child, what a sweet kid, what a perfect boy. Why, whywhywhy WHY, did this have to happen? And why did it have to be him? His parents must have wondered a thousand times if their daughter would make it through her medical issues; they probably never considered losing him. It’s heartbreaking. Tragic. TERRIBLE. I ache for them, knowing what I feel for his loss isn’t even a drop in their ocean of sadness.

At times like these, people offer all sorts of platitudes – “God needed another angel” – “His work here was done” – “God only gives us what we can handle” – but I’ll not say any of those terrible things to his parents. What kind of God would take a beautiful almost-4-year-old child? There weren’t any adult angels to take instead? And what parent could endure this loss? What a terrible, minimalistic thing to say to someone whose heart will never be whole again. I don’t know what I’ll say to her, this friend who has endured the worst possible thing in the history of endurance, but it won’t be any of those awful things.

Grace and I are going to pay our respects at his memorial this coming weekend. I am dreading seeing the two-faced discriminatory a-holes from Gracie’s old school, but that is nothing compared to the emotions T & H are suffering through. They deserve every respect and kindness at this terrible, terrible time. Prayers for them – prayers for love and light and peace from the agony of their loss.

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Gracie is doing amazingly well lately. In fact, she’s thriving. She is doing great at school, she is learning to write and draw (she drew her first-ever stick figure family the other day), and she is getting stronger and stronger. This may be the healthiest she’s ever been in her whole life—or at least it’s the healthiest she’s been in a very long time.

One of her cutest newly-discovered talents is jumping. She is getting really good at it, and her favorite jumping venues are puddles. We find every puddle in the parking lot on the way in to school, and she gears up and jumps. And jumps. And jumps and jumps and jumps. She LOVES puddle jumping.

I probably shouldn’t encourage her to jump in puddles, but it’s just so amazing. It was only a little more than a year ago that she really started to walk, and now she can JUMP! She does such a great job, too—she has great body position and lands really well without twisting her ankles. I’m so proud of her. It makes my heart swell every time—jumping is not an easy thing to learn for someone who doesn’t feel her feet, and each jump is a reminder that she once again defied medical logic and learned how to do an impossible task.

For Gracie, no gross motor feat is to be taken for granted, not even a childhood staple like puddle jumping, and each time she does it it’s amazing. So much is uncertain for Grace, and thinking about her future can be very scary indeed. But watching this kid defy the odds over and over again is the surest sign of all that things will be okay for her. She will overcome any obstacle. She may lose her sight, she may have devastating infections, but she will get through it because she is amazing. My sweet Amazing Gracie, puddle jumper extraordinaire.

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We had our first doctor visit of 2015 yesterday. I had texted with Gracie’s pediatrician Saturday because the wound on Gracie’s index finger, where she pulled out her little stump of a fingernail, started to look like it had exposed bone. After some serious soaking, though, the part that had been concerning looked much better. However, her brother’s eyelid became red and swollen, so we visited the doctor for Jackson. (While we were there, I showed Dr. A. Gracie’s finger and she agreed that it isn’t looking bad at all, so *whew* on that.)

Jackson’s eyelid is strikingly red and swollen. It looks terrible, especially when he first gets up in the morning. The doctor told us it’s a stye and prescribed some antibiotic eye drops, which he is to receive three times a day for the next week. Jackson, who feels pain extraordinarily well, cannot stand even the thought of the medicine. He starts screaming if I even mention the eye drops, and getting him to keep his surprisingly strong arms away from his face while administering the drops is a challenge indeed.

Jackson’s reaction to the eye drops is a stark contrast to his sister. For six months, we had to administer drops to both her eyes three times a day. She has macular edema — swelling in her eyes — and we were trying to lessen the swelling in order to improve her vision. It didn’t work, and after six long months we were able to stop the drops, which is a double-edged sword because we were unsuccessful at improving her vision. The eye drops were reported to sting, and she certainly didn’t like them. But, after a few days, she stopped fighting and allowed us to administer the drops. We know they bothered her, but she was so brave. She would steel her little chin and let us give her the medicine.

I am grateful to her for her bravery. She faces things that most kids — most PEOPLE — never encounter, and instead of crying or running in fear (which, by the way, would be perfectly normal reactions), she stands her ground and accepts that we are trying to do our best for her. She bravely faces needles, casts, eye drops, and any other crazy medical interventions we subject her to in the name of helping her get better.

Jackson is the opposite of brave. He is afraid of anything new, even if it’s helpful to him. Really, though, I’m glad he hasn’t had the experience with medicine and medical things that his sister has had. I’m so glad he hasn’t had to do stinging eye drops for six months. I’m glad he’s never had surgery, and he hasn’t had to go months without the use of his hands because of wounds that wouldn’t heal, and he hasn’t had to take terrible tasting antibiotics several times a day for months on end, and he hasn’t had to have IVs or repeated blood draws or breathing treatments or any of the other medical interventions Grace is too familiar with. I’m glad he hasn’t had occasion to be as brave as his sister. Still, I wish a little of her bravery would rub off on him.

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