Throwing Like a Girl

Posted on February 4, 2015 by Stephanie

At this time tomorrow, Tarica and I will be setting up house inside the walls of Children’s Hospital of Pittsburgh.

I feel as taut as a piano wire.

Last night, I read and reread that familiar verse, trying to saturate myself in its truth: “Casting all your care upon him, for he careth for you.” (1 Peter 5:7)

Throw all your anxiety on the Lord, Stephanie.

I’m trying, I’m trying, but it keeps falling short of its goal.

Stress has always robbed me of my sleep and my appetite. But I actually slept last night—except for a brief, wakeful watch in the hour of three—and that is a minor miracle. Now I just have to get through breakfast, lunch, and supper.

Tarica is looking forward to her hospital stay, but I suspect that has something to do with the air of Christmas around here. Such a sneaking around with mysterious parcels and boxes she isn’t allowed to open and packages arriving in the mail. It’s enough to drive any little girl into spasms of curiosity.

But she doesn’t have enough spasms otherwise.

My husband is an appliance repairman. He has lost count of the times he has gone out to a customer with a clunking washer or leaking dishwasher that runs beautifully while he, the repairman, is there. And haven’t you done this, too? You finally set up that doctor appointment, but the symptoms eased or disappeared shortly before you got there.

Despite having her medication cut in half, Tarica isn’t seizing enough, and tomorrow she is to be hospitalized to study her seizures.

It’s embarrassing to admit how much this worries me. What if she doesn’t seize enough for the doctors to locate the seizure focus?

A month ago, I would have been wild with joy to be in these shoes. Now, I am just sick with worry. A lot of time and inconvenience and prayer has been invested in these ten days at Children’s. A lot of money will be, too.

And what if she doesn’t seize?

(Okay, maybe a miracle did happen, maybe the seizures are gone, her epilepsy healed—I’m not discounting this as a possibility. But the not knowing eats at me.)

I’m trying to throw my worries on the Lord, but I have a terrible arm. I crave your help.

Pray for us.

Pray that Tarica would seize enough to give the doctors the needed information. Pray that her mind and spirit would be calm even if her brain isn’t.

Pray for Linford and me, that we would be strong and that our faith would not waver. Pray that I will be able to eat and sleep.

Pray for safe travels as Linford drives back and forth between his divided family.

Pray for the doctors, that they would have wisdom and discernment.

Pray a blessing on those sacrificing to help us.

Pray as the Lord leads you.

Pray His will be done.

Pray.

Several postscripts:

The photo above was taken this past weekend by a talented friend, bless her heart. She did a fabulous job with limited resources and time. (Jenica is seven; Tarica is five; Micah is twenty months. Dad and Mom are not as young as they used to be.)

I don’t know if I’ll be able to post updates while at the hospital. It all depends on… everything. Sometimes it’s difficult to write of an event while in the middle of it. Also, if Tarica goes ballistic, I’ll need to concentrate on her.

And thank you for praying. It’s not from lack of prayers that I feel anxious; it is my own weakness.

Have not I commanded thee? Be strong and of a good courage; be not afraid, neither be thou dismayed: for the Lord thy God is with thee whithersoever thou goest. (Joshua 1:9)

Preparing for Phase One of Brain Surgery

Posted on February 2, 2015 by Stephanie

What is involved in Phase One of brain surgery?

I don’t know all the details, not like I will in a few days. But I have been doing some reading and research on Phase One so I can look intelligent when doctors start slinging around words and acronyms like isotope and PET and magnetoencephalography. With all this information backing up in my brain, I need to sort through it by writing out what I currently know.

If I keep the technical simple, perhaps you will not mind if I share it with you.

First, a word of explanation: Our daughter will be entering Phase One of brain surgery this week, but this doesn’t mean she is going for surgery. Only one-third of all patients who enter Phase One qualify for Phase Two, which is the surgery itself.

The hospital sent us a packet of information on the tests Tarica will likely face during her stay. This shed more light on what to expect, although the information was general, not specific to her case.

Here is what we know:

Video EEG

During her stay, Tarica will be continuously monitored on Video EEG, except when she is undergoing other testing or needing a bathroom break. This means she will have 26 button-shaped electrodes glued to her scalp, which are attached to a box which is in turn hooked up to a machine. She will be confined to her room, specifically the bed and chair.

A parent is required to be with the patient at all times. Whenever Tarica has a seizure, I am to push a button to alert the monitoring staff and to create a marker on the test recording for review purposes.

MRI

She will have at least one MRI, a test which takes picture-like images of the brain at different angles. Because the patient is required to lie still for a long time, Tarica will likely be sedated for this test, which of course means all kinds of lovely food and water restrictions.

PET

The PET scan observes the metabolism of brain cells. A radioactive substance (“completely safe and will not harm your child”) containing glucose is injected through an IV. Tarica will need to rest quietly for 30-90 minutes, until the substance reaches her brain. Once in her brain, the glucose in the substance binds with the brain cells. The PET scanner, a large doughnut-like machine, can now read brain cell activity because it is lit up with this clingy radioactive stuff.

Seizures create areas of intense activity, so no doubt it would be helpful if Tarica would have a seizure during this test. Is that too much, too strange to pray for?

SPECT

SPECT imaging detects changes in blood flow within the brain. During a seizure, blood flow is highest at the point where the seizure originates.

This test is taken twice, once when there has been no seizure activity for some time. The second test is taken after a seizure occurred. A radioactive substance (“safe and will not harm your child”) is injected during a seizure, and when the test is taken a few hours later, it reveals the blood flow in the brain at the time of injection.

I don’t understand how the test can be taken several hours later and be accurate, but I’m sure they know what they are doing.

MEG

I don’t know if a MEG study will be done this time. We were given information on it, so it’s possible, but the MEG imaging machine is located at a different hospital.

A MEG test uses sensors to form an image of magnetic fields within the brain. For once, no radioactive substances are involved. It reads the brain in ways similar to EEG. Electrodes are attached to the scalp, and then the patient is strapped down and slid into a machine. Unlike other tests, no one can be in the room during this scan, which takes about an hour.

I’m not seeing this test as doable for Tarica unless they sedate her. Between her claustrophobia and her fear of being alone with (and inside) a big machine—there’s little chance she’ll accept it quietly.

Other tests

There are other tests, not all of them happening on this stay. A language evaluation will be done while Tarica is on video EEG. This test takes several hours and may require more than one session. A psychiatry evaluation will be completed during this stay, which is largely to determine the emotional stability and coping abilities of the patient, and to discuss fears and concerns (both hers and ours) about what may lie ahead.

A neuro-psychology evaluation will assess Tarica’s developmental, memory, cognitive, language, and attention abilities. This test is not done during this stay, according to the information I have.

Last week, I received a call from a nurse at Children’s, the first of several, she said. The specifics begin. Starting today, I am cutting Tarica’s medication doses approximately in half. This is ensure that she is seizing frequently by the time she is admitted.

It’s a recognized fact that patients who are seizing regularly will sometimes stop seizing upon admission to a hospital. I could spend a lot of time worrying about this possibility, but I’m trying to trust God with those details.

I’m trying to trust God with a lot of details, but there are some details—like the packing and preparing—that belong to me. The next few days will be busy.

Not that I haven’t had help. I have been astounded by generosity over and over again recently, but that’s another story.

Thank you for allowing me to write this. I think I shall be able to remember now what a PET scan does and that there are two SPECT tests.

Sometimes the biggest preparations are the mental ones.

Thoughts on a Deadline–or Two

Posted on January 30, 2015 by Stephanie

There is so much to do.

Time is running away from me. The deadline is imminent. Soon, it will not matter that I’ve not completed my to-do list. We will go, regardless of whether we feel ready or not.

I’m trying to prepare my children. We talk of it every day, and I assure them that, although we don’t know exactly what lies ahead, this does not have to be scary. We are trusting God to care for us. He will never forsake us.

I think of it all the time. I filter my plans and actions: Does this help me get ready, or is it a distraction? Unfortunately, this does not prevent me from accidentally distracting myself anyway. I must be more focused in the days to come.

When I look at all that remains to be done, I panic. The last few weeks went by too fast. What did I do in January? It’s gone already, and I’ve barely started.

On Saturday, I was reading over the papers that outlined what to expect. It was too much, too overwhelming. I have no idea how we will manage it. I speak to my children of trust, but my own heart trembles.

This will change us, as all experiences do. I’m not sure this pleases me. I like who I am now, who we are now, and I fear being different.

And what if the answer, the result, breaks our hearts? Oh, God, let it not be so.

I’m talking about preparing for our daughter’s hospital stay.

But I could be, should be, talking about preparing for eternity.

I pray I will be prepared for both when they come.

Defining Epilepsy Terms and Our Situation

Posted on January 26, 2015 by Stephanie

It is my goal to share our adventures with epilepsy by telling it as a story.

I believe in the power of story to change lives and touch hearts. Story is more compelling than bare facts. However, story limits me at times. I can tell you only what actually happened; I cannot invent stuff in order to make a point. Also, a good story will rarely stop halfway through and give a lecture on various facts to educate readers or to remind them of what happened a few weeks ago.

I dislike stories in which the characters talk to each other in order to talk to the reader—you know, when they say things that they both already know and wouldn’t say to each other in real life. If people did this in real life, one of them would say, “Duh. I was there. You don’t have to tell me all about it.”

The writer is doing this to tell or remind the reader of past events. It’s an easy trap for a writer to fall into.

In a book, a reader’s questions are more easily answered. If you can’t remember what exactly happened at the beginning, you can flip back and reread it. Here, on this site, it’s a little harder. And some of you have not been here since the beginning.

For these reasons, I’m going to give you some answers to the questions I’ve been receiving, online and off. Here are the facts. Not much story today.

What is a seizure?

The simple answer: haywire electricity in the brain. The complex answer? Uh…I’m sticking with the simple answer.

Everyone has electrical activity in his brain. A seizure is when those electrical signals go crazy.

If someone has a seizure, does that mean it is epilepsy?

Not necessarily. Fever, illness, or head trauma could provoke a seizure. Epilepsy is not diagnosed until someone has had two or more unprovoked seizures.

What kind of seizures does Tarica have?

A quick rundown on seizures: There are two main types of seizures, generalized and partial.

Generalized seizures mean both sides of the brain are involved from the start of the seizure.

Partial seizures begin in a specific area of the brain and remain there.

Complex partial seizure bridge the gap between the two types. They begin in a specific area and spread to involve more of the brain, sometimes becoming secondarily generalized.

The doctors believe Tarica has intractable complex partial seizures. The upcoming tests will reveal additional information.

I can’t define seizures more than this without getting confusing and wordy. Because each brain is unique, it is difficult to group seizures neatly into categories. There is overlap between the types.

What are intractable seizures?

Seizures which cannot be controlled by medication are known as intractable. They are also called “refractory” or “drug resistant.”

What do her seizures look like?

With no warning, she falls over backward. Her muscles are drawn tight, and her face is contorted. For the first part of the seizure, her arms and head twitch convulsively. Then her back arches and the convulsions spread to involve her whole body. Her head will tilt back until it seems it might break off her neck. Her eyes are wide and staring. While she does not wholly lose consciousness, she is not able to communicate or respond during a seizure.

The seizure lasts somewhere between 30-60 seconds. She is exhausted after it is over.

Why did her seizures change?

Back in March of last year, Tarica’s seizures lasted 10 seconds, maybe 20, at the most. Only her left arm and head seemed involved in the seizure. She did not lose her balance, and she did not convulse.

The tail-end of a seizure – March 9, 2014

By the end of the year, her seizures had escalated to what we are seeing now. Why? I have no idea. In my research, I’ve stumbled across repeated assertions that seizures do not usually grow worse over time. Why have hers? This is a question I want to ask the epileptologist.

What is an epileptologist?

It is a neurologist who specializes in the treatment of epilepsy, especially involving methods other than medication, such as diet and surgery.

How is Tarica doing now?

She is doing very well. In the two weeks since her big seizure, all of her seizure activity has been confined to nighttime. We are praising the Lord for this break.

The doctors will likely lower her medication dosage to induce more seizures while she is hospitalized.

Didn’t the doctors already find her seizure focus?

First, a definition: A seizure focus is the place in the brain where a seizure begins.

Do you remember the doctor told us back in March that there is a tiny speck of abnormality in her brain which they considered to be the seizure focus? At our appointment in November, the epileptologist told us that he cannot be confident this is the actual origin. They consider her seizure focus to be unknown at this time.

Is she going for brain surgery?

No. She is going for testing to see if she qualifies for brain surgery. She will qualify if the seizure focus can be found, and if that focus is in an operable area. For example, if her seizures originate in an area of her brain essential to her memory, the doctors would not be willing to risk surgery, lest she be altered tragically and irrevocably.

Do you want her to have brain surgery?

Yes. No. Yes. I don’t know. She may qualify, she may not, but either result will be difficult to accept and to process.

More than anything else, I want her to not have seizures. If it takes brain surgery to accomplish that, then so be it. Of course, I’ll take a miracle cure, too. (God, are You listening?)

If she qualifies for brain surgery, we still have to choose to go ahead with it. I don’t look forward to making that choice. If something goes wrong, we could regret it all our lives.

Other than seizures, is Tarica “normal”?

Let me tell you one story.

While traveling on a December night, Tarica said, “Dad, guess how many Christmas lights I counted? It’s in the thirties.”

Linford said, “Thirty-three?”

“No,” she said, “it’s four more than that.”

“Thirty-seven?”

“Yup.”

Is she normal? I’ll let you be the judge.

* * *

Do you have any questions? What have you been wondering? Your questions will help me tell this story more clearly.

It’s snowing like crazy, and I’m going nowhere today. Go ahead and ask away.

How to Make an I Spy Bag–the Easy Way

Posted on January 23, 2015 by Stephanie

In two weeks, Tarica will be in the hospital. My to-do list is as long as my leg.

One of the things on that list was an I Spy bag for Tarica. I could buy one, but I didn’t feel like spending $20.00 for something I could make myself. When I looked online, I found dozens of patterns and ideas. However, most of them involved sewing.

Don’t get me wrong: I like sewing. I’m a Mennonite; unless I want to pay someone to make my dresses, I need to sew and might as well like it. But right now I’m booked solid at my sewing machine. Tarica has been in dire need of dresses, and I want to take enough clothes along to the hospital so I’m not worrying about laundry every few days. Plus, I need a few new dresses as well.

With all that sewing to do, I didn’t feel like stitching together a craft project. So when I found instructions for a no-sew I Spy bag, I was thrilled. All I had to buy was a pencil pouch at Walmart for 97 cents. I had everything else I needed.

Two things, before I begin:

1. This idea is not original with me. I refuse to take credit for it. Google this project, and you will find many who have gone before me, and more creatively, too.

2. I am not a photographer. These pictures I am about to show you would embarrass anyone endeavoring to be one. I’m sure editing would improve the photos, but I edit words, not pictures.

Enough with the excuses. Let the game begin.

We started with this:

a pencil pouch with a large window
2 cups of Perler beads
little odds and ends from craft boxes and around the house, i.e. junk
a paper to list all the…uh…junk before it went into the pouch

The girls had spent the previous evening ransacking the house for little things. They waved more items than these under my nose, but those I rejected because they were too large, too sharp, or too indescribable. A few indescribable items did make the grade, because I didn’t have the heart to say no every time.

We filled the pouch with beads, and then I listed each I Spy item, the girls tucking them into the pouch as I wrote.

I also collected my own pile of treasures, but I didn’t show them to Tarica. I want some of the things in the pouch to be a surprise. Buttons and beads are featured prominently.

Jenica put my collection into the pouch while Tarica hovered at the other end of the room.

And then, we zipped it shut. Done. I’d do more crafts if they were all this easy.

Everyone approved. There’s something addictive about the slide of the beads, the challenge of the hunt, the thrill of the find. Even I am not immune to it.

I want to type up the list and slide it inside the pouch for safe keeping. There are more clever ways to do this, involving laminating and hole punching, but I’m sticking with easy. I could also print out the photos I took of the junk, but as good as Tarica is at this kind of thing, she needs the challenge of not knowing exactly what each item looks like.

In looking over the photos, I just realized that we put two orange heart beads in the pouch. I’m going to have to change that. How would you ever know if you found the second one, or if you’re seeing the same one over and over again? Duplicates do not work in a pouch of moving parts.

This is one toy I’ll be keeping out of Micah’s reach. The site where I found this idea recommended putting a blob of hot glue on the zipper so it doesn’t “accidentally” come open. I didn’t do that because Jenica contributed the Perler beads—last year’s birthday gift—and she wants them back. I told her perhaps I’ll get her more beads, but until then, we won’t seal the zipper. I hope I don’t regret it. Did you ever pick up a thousand Perler beads?

Oh, and I guess what I found at a thrift shop the other day?

I like how this book has pictures of each item to be found, with a number beside it. Not only will Tarica have the fun of looking for bugs, but she will get practice counting—and she can work independently. I’ll need to babysit her with the I Spy bag, since she doesn’t know what to look for next.

A big thank you to all those who told me about the Usborne books. I doubt it would have stood out to me at the thrift store otherwise.

That is not all: The first grade teacher at Jenica’s school offered to lend us her 1001 Things to Spot on the Farm. From Tarica’s response to the bug book, I know she will enjoy the farm book as well.

Last week, I went through a period of wondering if I was overreacting. Did Tarica really need all this stuff I was thinking about taking?

Then we received a packet in the mail from the hospital, a stack of papers detailing what to expect during her stay and describing all the tests that would be inflicted upon her. The more I read, the worse I felt. Nothing short of divine intervention is going to get Tarica through this. Many of the tests involve sticking her head into a huge machine, and she is semi-claustrophobic. Besides, she is fully uncooperative when it comes to doctors.

We were at the orthopedic on Wednesday for one last elbow checkup. Tarica refused to move her arm for the doctor. He was a safe distance away, and she knows him by now, but she automatically locks up when anyone in a white coat gives her a command.

I got her to move her arm by telling her to give me a high five, and once she moved it, she relaxed and cooperated a little. But it’s getting her out of lockdown mode that will be tricky.

By the way, the elbow looks wonderful. Praise the Lord for healing!

Seizures aren’t any harder than an elbow for the Lord, right?

How to Entertain a Hospitalized Child

Posted on January 9, 2015 by Stephanie

When Tarica broke her elbow in November, it felt unforgiveable. Why did God allow it to happen to her, of all people? Wasn’t she suffering enough?

My mom, a curious mix of optimism and fatalism, had another perspective. “Perhaps,” she said, “more exposure to doctors will help Tarica get over her fears.”

In this, Tarica needs all the help she can get. The hospital stay in March was a nightmare, although I attribute much of her behavior to side effects from the quarts of drugs being pumped into her seizing body.

But her behavior in the months following had not reassured me that her next hospital stay would be any better. She hated doctors, hated attention, hated, abhorred, despised needles.She drew into herself like a frightened turtle the minute we walked into a medical office, no matter how big her talk was in the van.

Could any good thing come out of a broken elbow? Not likely.

The morning of the first orthopedic visit, I dropped Micah off at my mom’s. My sister ran out to the van with a gift bag. “Here’s a birthday present for you, Tarica,” she said and handed it to her. In the bag was a Melissa & Doug chipmunk house with puffy, reusable stickers: Mama and Papa Chipmunk, three fat-cheeked offspring, and more furniture than we have in our own house.

At the doctor’s office, I helped Tarica out of the van and, at the last minute, grabbed the chipmunk house. That decision ranks in the top ten wisest impulses I’ve ever had. As soon as we settled into waiting room chairs, Tarica wanted me to open the package. She played with her chipmunks the rest of the visit and tolerated the doctor’s presence more calmly than usual, thanks to the distraction.

The doctor wanted to see Tarica again in a week. At her second visit, her cast needed to be replaced because the swelling had gone down, loosening the first cast. The nurses cut the cast off, with surprisingly little fuss from the patient, and then prepared to put on cast #2.

They slid a long sock over her arm, a thin layer of protection against her skin. Without prompting, Tarica reached over, picked up a scissors, and prepared to cut the sock off just beyond her fingers. The two nurses looked at each other, eyebrows raised. “You remember what comes next, don’t you, sweetie?”

They let her cut the sock.

When they were wrapping her arm in plaster, she again reached for the scissors to make a cut in the plaster around her thumb. Without prompting. She snipped the plaster, her eyes intent.

I stood with my mouth slightly open, brain churning. This discovery was important, and if not for her elbow, I might not have realized it before her hospital stay.

If she could somehow participate in events instead of feeling like a helpless victim, she relaxed and cooperated.

And the chipmunk house. If she was distracted, she was more likely to behave.

My mom was right. Even a broken bone had some good in it.

* * *

I need your help.

Tarica will be hospitalized for ten days next month. She is not sick. She is a healthy child (other than epilepsy) with a need for exercise and activity. Instead, she will be attached to wires and made to stay in sight of a camera at all times. And she doesn’t like doctors or nurses.

I don’t have to describe all the ways this scenario could go wrong. Your imagination will do it quite nicely.

I need suggestions for ways to keep her involved and distracted, not necessarily at the same time.

The suggestions should be

inexpensive
easy to pack and transport
suitable for a five-year-old

She enjoys numbers and hates coloring. Because of the drugs, her hands shake, so anything requiring fine motor skills wearies her. She loves stickers and dolls. She likes I Spy and Can You See What I See? books, but I think we’ve borrowed most of them from our library already. Do you know of any age-appropriate search-and-find books other than these?

She likes games, but many of them are too bulky to pack. Are there any travel-size games you can recommend?

The hospital has a children’s library on the same floor as the epilepsy center, so I’m not planning on taking storybooks. Unless you have a can’t-miss book to recommend?

Here are some ideas and suggestions I’m already considering:

A hand mirror, so she can watch the wires being attached to her head
A doctor set, so she can give the nurse the needle in turn
A balloon pump and those skinny balloons to make animals, which I don’t know how to do, but I can learn
Her beloved preschool books—if she doesn’t finish them all before February

I need enough variety to keep her from being bored, but not so much that we need a moving van to haul the luggage. The hospital has some resources we can use, but I’d like to be as prepared as possible. In addition, I’m hoping the collection of fun activities will give Tarica something to anticipate.

Can you help me?

Stephanie J. Leinbach

finding grace in the grit of an imperfect life

Tag Archives: hospital