Fever

You give me fever
When you kiss me
Fever when you hold me tight
Fever in the morning
Fever all through the night.

I’m wishing I were writing a love song instead of a post about Gracie’s recurring fevers. Alas.

On Monday, Gracie called for me overnight. It was about 1:30 a.m. When I went in her room, she was shaking and moaning and writhing around in her bed—familiar signs that she’s about to get a fever. I stumbled to the kitchen to find the thermometer and fill a syringe with medicine. We have done this many times; I don’t need to wait for the temp to climb to know it’s coming. She gets the medicine right away now, even if she doesn’t have a fever yet.

When she stopped shaking around 2 or 2:30, her temp was 102. Not the highest fever she’s ever had, but not insignificant either. She was asleep, so I went to bed, worrying about how I’d manage my work meetings that were scheduled for the next day while caring for a sick child. (It all worked out. I worked from home Tuesday, but went into the office at 3:30 for the evening class.)

Gracie continues to have fevers. She is repeating a cycle: fever, medicine, repeat. The fevers are not terribly high—that 102 was the highest one of the illness—but they keep coming back. I took her to the pediatrician Wednesday, but got no answers. Grace’s ears, throat, and lungs are all fine, and there are no obvious skin infections. She is congested and has a thick cough, but not pneumonia. Her doctor advised that it’s probably a viral infection and decided to wait before doing blood work or checking urine.

When Gracie woke up this morning (at 5:30 – about an hour and a half earlier than usual), her temp was 100.5. It’s barely high enough to qualify as a fever for medical purposes, but it’s enough to let us know something’s cooking in her body. I emailed the doctor to see if we should come in today or wait until Monday; she has not yet responded.

I have never known a viral infection to cause recurring low-grade fevers. In my experience, viral infections usually hit hard and fast—they cause high-grade fevers that don’t respond well to medicine and go away after a day or two. Bacterial infections, though, are a different story. They start with low-grade fevers and ramp up over the course of days until they are barely controllable. This infection isn’t following either course. It never hit particularly hard, and hasn’t ramped up.

I know the signs of a medical emergency; I know what to look for and when to take her to the ER. However, I don’t know what’s going on inside Gracie’s little body, and that is nerve-wracking. Where is this mystery infection??

Time will tell. It always does. She will get better, stay the same, or get worse—those are the only three possibilities. Only one of those possibilities is good, though. The other two are stressful and potentially disastrous. It is horrible to have to wait for an infection to manifest, knowing that by the time we figure out where it is it could be very serious.

But for now, we have no choice. We will wait for this beast to rear its ugly head—or retreat. Hoping for the latter.

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Appropriate

Today, the United States Supreme Court heard oral arguments in a special education case, Endrew F. v. Douglas County Public Schools. In that case, the Supreme Court is tasked with deciding whether the student, Endrew F., received a free and appropriate public education (FAPE) as required by the Individuals with Disabilities Education Act (IDEA).

Endrew F. was a student at Douglas County Public Schools in the Denver-metro area. He has autism, and was on an IEP (individualized education program). For those of you who do not live in this world of special education acronyms, an IEP is basically the plan that the parent and the school put together each year to define the accommodations and modifications the child will need in order to get through the school day and hopefully learn. IEPs have goals for the child. For example, Gracie’s goals include things like maneuvering her walker through doorways without having to be reminded about the wheels.

Anyway.

Endrew F.’s IEP had very minimalistic goals that he was meeting, but they did not bring him closer to the academic level of the other kids. He was falling more and more behind each year. In his Fourth Grade year, Endrew developed behavioral problems, which escalated through the year and became severe by the spring. The school and Endrew’s parents disagreed about how to best accommodate Endrew’s needs in the school environment. Endrew’s parents requested a behavioral intervention, and the school district eventually scheduled a meeting with a behavioral specialist, but the meeting never occurred. Endrew’s parents withdrew him from the public school in April of the school year and enrolled him in Firefly Autism, where he is now thriving.

This is where it gets interesting. Endrew’s parents billed the school district for the cost of enrolling Endrew in private school, arguing that he was denied a FAPE. The district, of course, did not pay. The parents engaged in the administrative review process, where the hearing officer determined that because Endrew was meeting his IEP goals he was receiving “some educational benefit” that was more than de minimus – more than nothing. The parents appealed, and the 10th Circuit upheld the hearing officer’s decision that even though Endrew was falling more and more behind his classmates, he was making some progress, so he was receiving a FAPE. The 10th Circuit seemed sympathetic to Endrew’s plight but did not have a remedy for him.

I read through the whole transcript of the Supreme Court’s oral arguments. It seemed that the Supreme Court, too, was sympathetic to Endrew – the Court seemed to acknowledge that it would be crappy to say that because he received more than no benefit he received a FAPE. However, the Court didn’t have much of a remedy to offer Endrew, either. They were practically asking Endrew’s lawyer for a solution, and he didn’t really have one to give. His amicus (“friend of the court”), the U.S. Solicitor General, offered to the court that most children would be able to perform at or near grade level, but for those who would not be able to perform, the standard could be “significant” or “meaningful” progress toward grade level.

The Supreme Court Justices can be rather harsh toward those who appear before them. It was stressful to read the interchange between the lawyer for Endrew F.’s family and the Court; the Court seemed to be pressing him for a solution to the problem and he did not propose one. The interchange between the Solicitor General and the Court was slightly better; clearly, he is familiar with the court and is comfortable interacting with the Justices. Likewise, the interchange between the lawyer for the school district was less stressful; the Court grilled him and did not appear sympathetic to his argument that the lower court did the right thing.

Why, you might ask, am I giving a detailed analysis of the Supreme Court’s oral argument in this blog? Well, two reasons. First, I’m a legal nerd at heart and need an outlet to voice my opinions about this case. Second, and more importantly, I’m Gracie’s mom and I already knew about FAPE and IDEA and IEPs long before this case came down. That’s the world we live in, the world of special education and politely fighting with educators and schools. Oh, I’m sorry, it’s called ADVOCATING.

We have already been through a lot with schools, more than most parents of 6-year-olds. That whole debacle with Anchor Center taught me the uglier side of schools, and the limitations on the willingness of private schools to care about children who don’t fit their profiles. It also taught me that advocating for my child is one of my inherent strengths. You would think it would be a strength of any parent, but that is not actually the case, surprisingly.

Then, at Fletcher Miller we learned the other side of schools. All of the special education teachers we dealt with at Miller were amazing. I can’t say enough good things about them. They set Gracie up to succeed in elementary school by including absolutely everything in her IEP that could help her – they even thought of things like using larger manipulatives for math (little cubes to help kids count) and giving her a chair with arms so she wouldn’t accidentally fall off. Miller was our first IEP experience, and I have to say, it was a very good experience. Gracie’s Miller teacher accompanied me to the IEP meeting at her current school before her kindergarten year, and helped explain to the IEP team what assistance Gracie would need to get through the school day.

Gracie has an IEP in place for this year. There are goals on her IEP, but they are focused on gross and fine motor tasks, the areas in which Gracie has the greatest delays. She does not have cognitive difficulties, so her IEP goals do not cover academic substance.

Even so, the Endrew F. case could affect her. If Endrew F. loses at the Supreme Court, the law of the land becomes that a school need only provide “some educational benefit” that is more than nothing. Anything more than nothing counts, as stated by the 10th Circuit, and that is terrible. Children could get left behind, and their parents would have no recourse except to pay for private schooling (IF they could find it) at great personal expense. Gracie is one of the lucky ones – her disabilities are physical. For children like Endrew F. who are difficult to educate and unable to voice their own feelings, the road could be more rocky.

More than nothing is not much. Let’s hope the Supreme Court does the right thing and finds a way to provide Endrew F. and all other special education kids in the U.S. with the free and appropriate public education they deserve.

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Perseverence

Right before Thanksgiving, Gracie was lamenting that she’d never seen a movie in the movie theater. I had never taken her because it’s dark and loud and requires sitting still for two hours—any one of those things is usually too much for Gracie. She begged and pleaded, promising she wouldn’t be scared and would be able to sit there for the whole two hours.

I of course relented, being the permissive parent that I am. Gracie decided she wanted to see “Trolls.” She had been watching a music video on YouTube of one of the songs, “Get Back Up Again,” and knew most of the words by heart. So, on the Friday after Thanksgiving, Grace and Jackson and I trekked to our local movie theater to see this movie Gracie had been watching about on YouTube Kids.

It turned out to be a great movie—very cute and with a great message. Princess Poppy troll   embarks on a journey with survivalist troll Branch to save their friends from being eaten by the bergens, a miserable group of beings whose only taste of happiness comes from ingesting the vibrant trolls. It’s a kids’ movie, so of course it has a happy ending. It also has a lot of great music, from Simon & Garfunkel’s “Sound of Silence” to Justin Timberlake’s upbeat “Can’t Stop the Feeling” to Earth Wind & Fire’s “September.” But a highlight of the movie is the catchy tune that Gracie already knew, “Get Back Up Again.”

Gracie sang that song around our house for days before and after the movie. She would belt it in her best breath-support voice, doing arm movements for certain parts and grooving through others. I thought she only liked it because it was a fun and theatrical song to sing. I was wrong.

A few days after the movie, Gracie was wandering around the house singing her favorite song when suddenly she stopped. “Daddy, do you know why I love that song?” she asked Chad. “Because it has a really good message. It’s all about not giving up.”

Wow.

We were in awe. Once again, Gracie amazed us. She understood the deeper message of the upbeat tune. Our impish little child with the angelic blonde curls and the missing teeth once again taught us a lesson about strength in the face of adversity. The child who I was worried would be afraid in the dark theater was simply awaiting her opportunity to hear HER song, the song that could have been written about her life. (We coached her ahead of time about being quiet in the theater; she still sang along with the song, just not at the top of her lungs like she does around the house.)

Gracie is the queen of not giving up. She doesn’t think twice about it—if she wants something, she gets it. Self-sufficiency is second nature to her. This is the kid who shouldn’t be able to walk, but figured it out anyway. The kid who got her own pacifier even without the use of her hands. The kid who, when she broke her right hand this summer and lost the use of her fingers while they were casted, learned how to write with her left hand. The kid who falls and falls and falls and falls and falls, but never cries—she just gets back up again.

We could all learn a lesson from Gracie. Except, that kind of strength through adversity cannot be taught. It can be learned, but it comes from within. Gracie is just a little kid, but she already knows what it takes a lifetime for some of us to learn. She has always known. She is grace personified, amazing grace.

And when they knock, knock her over, she will get back up agaaaiin.

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Hot Lunch

Before the school year started, I purchased 10 hot lunches for each of the kids. For whatever reason, though, they didn’t use any of them until this month. One day when I was feeling particularly tired (and it wasn’t election day, although that was a TERRIBLE day), I convinced the kids to try hot lunch the next day. They were having cheeseburgers with fries so it wasn’t a hard sell. Gracie could even eat it, just without the bun.

The kids LOVED their hot lunch. They came home that night asking to have hot lunch again the next day. But I looked at the menu — teriyaki chicken and noodles — and once they heard what was being offered they changed their minds. However, they kept asking, and later that week Jackson had spaghetti and meatballs for hot lunch.

Spaghetti is one of Gracie’s favorite foods. Since she’s been on the gluten free diet, I have been making it with spaghetti squash or gluten free noodles, and she’s loved it every time. So, when she found out she couldn’t have spaghetti and meatballs at school because they would be regular glutinous noodles, she was crushed. She cried and cried, big alligator tears and wrenching sobs. I think it was the first time she’s felt cheated by the GF diet.

We talked about it, and I told Gracie that if she wanted to stop the GF diet, I could call the doctor and try to have an appointment with him. She agreed and told me to call the doctor so she could get off the diet.

I couldn’t bring myself to make that call.

It bothers me to prostrate myself before a doctor who won’t listen to me and doesn’t have the basic decency to return a phone call or email. Customer service is everyone’s job, no matter what kind of advanced degree they may carry. Lawyers know that not returning phone calls is likely to get a grievance filed against them; why don’t doctors have the same problem? There is no excuse for failing to alleviate the client’s concerns (or the patient’s, in this case).

I also thought back on all the other appointments with this doctor. At one of our first appointments, I told him that we gave Gracie digestive enzymes and that it was the most helpful thing we’d ever done for her GI issues. He told us to stop giving them to her. The digestive enzymes have helped her digest food better. Before we started giving them to her, we would see whole pieces of food in her diaper, and not just corn and peanuts. We could identify whole pieces of oranges, strawberries, carrots, broccoli, etc. Those foods should have digested, but didn’t. I worried about whether she was getting any nutrients at all from her food, whether her body was able to extract anything before expelling the food.

At our appointment with the awful dietician that the GI doc sent us to, she told us to stop giving Gracie her vitamins and Vitamin C supplement. Before we started giving Gracie her current vitamin regime, she would get every cold that came her way and had pneumonia multiple times each winter. When we started this regime (she gets half the dose of an adult multivitamin gummy and one Vitamin C gummy per day), she stopped getting sick. Now, she gets about one cold a winter and it doesn’t progress into pneumonia. She hasn’t had pneumonia since she was 3. She had it five times before that, multiple times per winter. That says a lot to me.

It seems backward to me that a doctor would tell us to stop the things that help our child but won’t give us the go-ahead to stop something that doesn’t help. Gracie’s blood test was negative for celiac disease, and she hasn’t responded to the diet at all, so it seems unlikely that she actually does have celiac. Also, Gracie’s diagnosed disease is known to cause gastrointestinal dysmotility — which exactly explains her symptoms; things either move through her too quickly or don’t move at all. That’s how it’s been her whole life. It explains why she’s not digesting her food, too — she moves it too quickly through her body and is unable to extract the nutrients.

The other thing that is stopping me from calling this doc is that he has not helped us at all. He has done nothing but make our lives more difficult. He has wanted to perform multiple invasive procedures under anesthesia without addressing my well-founded concerns. It’s hard for me to justify visiting a doctor who isn’t helping. If he could add something to our lives other than hardship, it would be easier to swallow.

Gracie really wanted me to make that appointment, and she kept bugging me about it. (She is a great reminder-er; she will let us know absolutely everything we might forget, multiple times, even before we’ve had a chance to forget it.) I finally told Grace that I didn’t want to go back to that doctor. I told her that any doctor who wants us to stop things that help and won’t let us stop things that don’t help isn’t really listening to us and doesn’t respect us. I told her that if we ever needed a GI specialist again, we would look for one who has seen other people who don’t feel pain, but we wouldn’t go back to this guy. She liked not having to go back to the doctor who wanted to scope her repeatedly, but still wanted to stop the GF diet.

After weighing all the pros and cons, we decided to let her try gluten again. She started with pizza (maybe not the best transition food) and loved it. She has had gluten in her food every day since then and has been fine. There has been no change in her bowel movements. This confirms to me that she does not have celiac; I would expect to see severe gastrointestinal repercussions from the gluten if she did indeed have celiac disease.  That’s what I’ve always heard happens with people who do have celiac.

Ironically, she has not had hot lunch since going off the GF diet. She has not thought the menu items sounded appetizing — even the “gooey grilled cheese” didn’t sound good (she thought “gooey” meant “soggy,” apparently, but even after I explained the difference she was unwilling to try it). I can’t really blame her. My own memories of hot lunch include a lot of greasy napkins from sopping off the food. But now, Gracie is free to have hot lunch whenever she wants. She doesn’t have to worry about the gluten.

Thank goodness. We all have enough to worry about.

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Thank you

Hello, dear readers. When I last posted, we were in the throes of a seemingly insurmountable problem – little lemon grenades were coming at us from every direction. I am pleased to report that all the good energy worked. We immediately felt the shift and were able to resolve the situation amicably. Thank you all for keeping us in your hearts. We greatly appreciate it.

And now, for something completely different.

For my day job, I read a lot of blogs, looking for content or news I can report on my company’s blog. This past week, I read an interesting post about the difference between discipline and motivation. The author made the point that motivation is often situational, and that to continue doing challenging work one must cultivate self-discipline. The author quoted Newton’s first law of physics: an object in motion tends to stay in motion and an object at rest tends to stay at rest. The analogy is that a disciplined person is like an object in motion, while a person who relies on motivation is essentially an object at rest, waiting for an external factor to prompt his or her movement.

Because I am inherently insecure, I immediately thought of this blog. Lately, I have not been disciplined about posting here. Usually, I try to post about once a week. I like to post when I’m motivated because those posts tend to be better written and flow more easily. However, motivation waxes and wanes. Thus, posts on this blog can be inconsistent. When we are in the throes of intense personal struggle, it’s hard to discipline myself to do anything extra, including posting here. (The exception is when the intense personal struggle is related to Gracie’s medical condition.)

Excuses, excuses, excuses.

I am torn between wanting to commit to writing more on this blog and accepting the reality of my schedule. I wish I could be disciplined enough to commit to a post a week, maybe more. But between working full time at my day job, taking care of the household and children, and now working a second job of sorts as well, there is not much of me left. It’s unrealistic for me to add anything to my life right now (except maybe a fluffy puppy if one happens to cross my path… kidding, mostly).

So, if you will all bear with me, I will commit to posting when the muse strikes, or when Gracie is having yet another medical crisis, and occasionally in between too. It may be a while; the muse is fickle. And I certainly hope it’s a while before Gracie has yet another medical crisis, although that may be sooner than we would like. Gracie’s occupational therapist was here today, working with Grace to get strength back in her right hand, and I noticed Grace’s hand is unusually swollen. Grace also mentioned a few times that her hand “tickles” – this is a word that other children who don’t feel pain use as well; it tends to signify injury. However, Gracie’s ortho does not want to subject her to any non-infection-related x-rays, and she is already in a hard cast-like splint, so there seems little utility in trekking her to the doctor at this point. We shall wait and see.

Thank you all for your support, for the good energy, and for being there for us—both virtually and in real life. We know we have a lot of good friends and family who love us dearly, and that means the world to us. In fact, love is the only thing that matters. Thank you all for spreading the love our way. Right back atcha. ❤

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Energy

When life gives you lemons, make lemonade. We all know that, we’ve all heard that adage before. What about, though, when life starts throwing the lemons at you, and they’re actually bombs, and every time they even get near you things get worse than you can even imagine?

We are going through something extremely challenging right now. I can’t share what it is here; things are beyond bad already. But please, all of you who read this blog, all of you who love us, please send us all the good energy you can muster. Please send us a protective shield of love and peace. We need all the help we can get.

energyshield

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Burned

We parents of special needs kids are frequently plagued by burnout. I just read a post on “Love That Max” today about a special needs mom’s head exploding. It was tongue-in-cheek, but quite appropriate. My head feels explosive today—or maybe it feels like it’s already exploded, like there’s nothing left.

Gracie and I came home yesterday afternoon. I am glad to be home, but so apprehensive about how the hospital stay ended.

Yesterday morning, the pediatric infectious disease doctor visited us, informing us that Gracie’s CRP and sed rate were normal so she could not have had an infection. I told him that she has had terrible infections before with normal blood work, but he said, and I quote, “inflammation is different from infection.” This ID doc is relatively new to the hospital, so he was not there in August 2014 when Gracie had a bad infection that streaked halfway up her arm—her blood work was normal then, too. It perplexed her then-ID doc, but the doc didn’t stop treating her. (THANKS for that, Dr. D. Miss you so much.)

Meanwhile, the nurse and the floor’s charge nurse were trying unsuccessfully to start a new IV. They tried three times before the ID doc came in; he told them to stop because Grace could just have oral meds. Oral meds = no need for us to stay at the hospital.

Right after the ID specialist left, the floor doc came in. Again, the floor doc is someone who has never worked with us before—he has seen us there, but never been the doctor assigned to our case. He was very careful not to use the word “infection” in his short conversation with me. He talked about switching Grace to oral antibiotics and getting her discharged “because he could not justify the hospital stay.” I tried to reason with him and watched him bristle at being questioned. Yet another doctor let ego get in the way of patient care yesterday.

Chad happened to be at the hospital through all this, although I don’t think he was aware of the significance. I cried on his shoulder, and decided that I wanted to try to talk to the doctor one more time. We need this hospital. And it makes sense that a doctor who has seen lots of kids with infections in his career would not automatically believe me that Grace is different—Grace doesn’t follow the rules. But I don’t know what I can show them to prove that I’m telling the truth, I’m not just a hysterical overprotective drama mama, if they won’t even believe their own records from a previous hospitalization.

I did speak to the nurse later. The floor doc was literally in the office right next to where we spoke; I know he heard every word. I tried to make the point that Grace is different, that she’s had terrible infections with normal blood work, and she looked in her computer and verified what I was saying. Even so, after that conversation she treated me differently. She was cold, not as nice, obviously careful and guarded. Guess it makes sense… she has to do what her boss, the doctor, wants her to do, regardless of what I say.

I am so tired of this. I am so tired of having these conversations. I’m so tired of worrying about whether Gracie’s care will be affected—if the doctors will not take her infections seriously now unless she is extremely sick, if the doctors will automatically disregard what I say because I’m “that” mom.

Gracie could have probably benefited from one more day of IV antibiotics, but I didn’t fight for it. Luckily, her hand looks a little better today—the swelling is down, the redness is down, the wounds are healing. It worked out okay this time, even though I didn’t fight.

I don’t want to fight. I don’t want to be labeled as confrontational. I don’t want any of this—I just want my kid to get better. I don’t want to have to choose words that will soothe a doctor’s giant ego just so he will listen to me. I don’t want to have my child suffer because a doctor is going by what he’s seen his entire career—even though he’s never seen Gracie before and has never seen anyone with her disease, either.

I am so tired of all of this.

This is basically the same reason we stopped seeking treatment at Children’s Hospital. I lost the fight that time—the infectious disease specialist didn’t like it when I questioned her treatment plan, and she wrote nasty things about me in Gracie’s chart. Nasty untrue things. Nasty untrue things that will be in Gracie’s chart forever, that will affect Gracie’s treatment at that hospital for the rest of her life. I can’t let that happen again. That’s why I tried to talk to the nurse yesterday, tried to explain my viewpoint. It didn’t work, though—she was decidedly cold to me for the rest of the day.

I am tired. I don’t want to fight. All I want is for my child to get the best possible care. Is that too much to ask?

Apparently it is.

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