The canine miracle.

The Beast is unpredictable — We never know when he will strike.

He has attacked at home, at school, in hospitals, at the doctor’s office — he even struck in a gas station restroom.

Today, he barged into a new location — her uncle’s house.

We were visiting his home for a family birthday party.  She was enjoying time with her little cousin who adores her and they were playing in the basement, when all of a sudden her brother ran upstairs to tell us she was having another seizure.

Corey and I raced downstairs and she was just coming out the seizure. Luckily, her wonderful boyfriend had been with her and could tell us what had happened. She had been sitting on the couch and they went to come upstairs.  When she stood up, down she went.

Imagine not being able to stand up from a couch without your blood pressure and heart rate changing so much it sends you into a seizure. And, to top that off, imagine never knowing WHEN that was going to happen?

It is for these reasons we made the decision to apply for a Dysautonomia service dog for Lukah.  The dog will sense changes in her blood pressure and/or brain waves and alert her when she is going to go into a seizure by licking, circling her, or nudging her BEFORE she goes into a pass out or a seizure. This will allow her to get to a safe spot lying down before the episode happens and will help avoid injuries like she has had in the past.

We are working with a great organization called Canine Partners for Life out of Cochranville, PA.  I am told by their representatives that they have had great success with their Dysautonomia dogs!

There have been quite a few pieces to the application process. For example, Lukah had to write an essay telling a little about herself and her illness.  Here is an excerpt from the essay:

“POTS makes life hard for me.  I pass out into convulsive syncope/seizures nearly everyday, and sometimes multiple times a day.  After I pass out, I do not remember what happened, and I am normally shaky afterwards for long periods of time.  I am tired all the time, and frequently get light-headed and dizzy upon standing.  I suffer from frequent headaches and stomach aches.

I used to play softball, basketball and volleyball, however I can’t participate in them anymore because of passing out/seizures.  I am hoping to graduate high school a year early, so my illness will not interfere with schooling anymore, and then I can go to college when I am capable.

Someday I hope there is a cure for POTS, but until then I believe a service dog would be very helpful.”

WE DO TOO!!!!!!!!!!!!!!!!!!!!!!!!

The second part of her application was to write another essay explaining why a service dog would be beneficial and what she feels she could offer in return to the dog.   Here is an excerpt of her essay:

“There are many reasons I believe a service dog would be beneficial for me.  One of the most important reasons is for my safety.  With passing out, comes falling, and falling could mean getting hurt.  I have gotten one concussion and injured my neck after passing out on the stairs.  I am hoping that a service dog could sense something was wrong and alert me to sit down before I pass out. After I pass out, I am often shaky, so a dog would help support me to make sure I don’t lose my balance and fall again.

Passing out has affected my social skills, and I get nervous talking to people in fear that I will pass out mid-conversation.  With a service dog, I believe it will give me confidence in myself because I know it is something that will not judge me by what happens to me.”

These excerpts just give a tiny glimpse into what she deals with everyday.  See why she is my hero?  🙂

Another piece of the application is a letter of recommendation from someone other than a family member. We chose one of Lukah’s teachers who has been with her when she had a seizure.  Here is an excerpt from the letter:

“Lukah is one of those people who brightens the room when she enters.  She is charismatic, driven and one of the bravest young adults I know.  Despite the odds that are against her, she has never let up on who she is as a student, a friend and a model citizen.

I had the unique experience of witnessing Lukah have a seizure in my classroom.  It was and will always leave a mark on me because it was such a difficult thing to witness.

I had to help Lukah as she fell out of her desk, all while trying to make sure the rest of the class wasn’t acting inappropriately or making it worse.  Two students ran to get the nurse and the principal of the building.  It didn’t last more than a few minutes, but it was one of the most shocking events I have ever witnessed. “

I cannot fathom how it feels to have seizures and never knowing when they would happen, and the fact that Lukah does every day amazes me. She is strong and courageous because she is not letting it win or stop her from living her life.”

(Did you need a tissue on that?  I sure did!)

Lukah also has to submit a picture.  Here is the one she chose.  It was taken just four weeks before The Beast entered her life:

The final step in her application process was to make a video introducing her family members and showing her home.  Here is the video we created:

http://youtu.be/GuBphJdWDfk

It makes me cry every time I watch it — other than watching my own part where I look and sound like a doof.  LOL!

I am excited to send all of this application information off to the organization tomorrow.  I am told it will take 2-3 weeks to know if she is approved, however, we have already been told that she is a good candidate so keep your fingers crossed that she is accepted into their program!

Her doctor is very much onboard with her getting a service dog so if it doesn’t work out with this organization, we will pursue another one, but I have hope that God will make this happen for her  — for us, because . . .

“Dogs are miracles with paws.”  – attributed to Susan Ariel Rainbow Kennedy.

I will update on our progress soon.

Until then, I will keep looking for Lukah.

God bless.

 

After You Fall . . . a guest post by Corey Case

My husband, Lukah’s father, wrote the following post on his blog last night about Lukah. It touched my heart so much that I had to share it here . . .

After you Fall (by Corey Case)

Since last March, my daughter Lukah has started having terrible seizures. We have been through many doctors and many hospitals to try to find an answer. It breaks my heart to see this once athletic lively girl reduced to being afraid to be in public for fear of having a seizure in front of people. She has shown me more courage than I could ever have imagined and her strength is what gives her mother and I the ambition to keep striving for answers. I truly believe that someday, this will all be a very bad memory and she will be flashing those huge dimples at me as often as she used to. Here is a picture of her when she was little.

 

See what I mean about those dimples. She has been diagnosed with POTS syndrome. Never heard of it? That’s okay, neither had we. Nor have most doctors that we have come in contact with. It stands for Postural orthostatic tachycardia syndrome. It basically is an extremely high jump in heart rate from lying to upright position that can cause fainting or even seizures. So they think it is caused by that or really deep in the brain epilepsy. It has taken almost a year and slogging through many internet forums to get ourselves to the correct doctors for this diagnosis. If you want to read more about the disease and coping with it, my wife has started a blog detailing her journey as a parent dealing with a child affected by this. http://lookingforlukah.com/Now let me show you a picture of Lukah before the monster came after her.

 

That is my little girl getting a kiss from me. Lately, there has been too many times where I have had to move wires aside to kiss that same cheek.

 

I want with everything in me to give her life back to her. She hates it when we say this but I wish that the monster had went after me rather than her. Thanks for listening and allowing me to educate.

AFTER YOU FALL

(for my sweet daughter Lukah)

There was a time

not so long ago

where our main worry

was if you had enough sunblock on.

You were so pretty

running around chasing your brother

as the wind blew your hair

and the sun kissed your face.

I can actually hear your laughter

as you roll around in the grass

fighting with the dog

over his coveted chew rope.

Somehow, some other force took over

ending those carefree days,

making you a prisoner of your own body,

robbing you of your youth.

There were so many calls

to rush to the school

that even when you are home

a ringing phone sinks my heart.

As a parent, I live in fear from this monster.

But I can’t imagine what you feel

when you drop and shake

and lose hours of your day.

Just know we won’t leave you.

We won’t give up on an answer.

As John Paul Jones exclaimed,

“I have not yet begun to fight!”

After you fall, we will be there

hopefully to catch you.

But sometimes its too late

and we have to just pick you back up.

Your strength gives me strength

and I’m amazed that you can still smile.

Remember, I will always be your dad

to help you after you fall.

Corey Case

2/4/14

This kind of post is pretty unusual for Corey — his blog is really funny.  If you’d like to check it out, the address is

http://coreycase.blogspot.com/

God Bless!

Save you.

Today, I lost it.

It is not a bad day. Nothing has technically “happened.” But the thoughts of last week came pouring in and I caved into them.

I tried to push the thoughts away, but I felt the lump in my throat swell and the pools of tears flooding my eyes and I knew it was too late. I had been holding it in.

As I drove to work, (my usual “think time”) the events of last week replayed in my mind and I just kept thinking of how much I want to save her because I never want to see her have to go through that again.  EVER.

Thursday, January 30 had been a pretty “normal” day (as normal as our days can be that is). I spent my day at work and knew things were ok at home because I hadn’t received any texts or calls saying Lukah was having a bad day.

I left work at my usual time and drove my 30 mile commute. When I hit a stoplight, I picked up my phone to check it quickly while I was stopped. I read this text from my husband and was instantly terrified:

“Go straight home. Lukah had a seizure and says she can’t sit up without passing out.”

While I was only about a mile away from my house when I read that text, it felt like the longest drive ever. I pulled into the driveway (no time to park in the garage) and raced into her room to find her laying the wrong way on the bed with her legs dangling off of it. Her brother was sitting with her. When I met his gaze I could see the look of pure fear in his eyes.

“What is going on?,” I asked.

“I had a seizure and hit my head on the wall and ever since I can’t sit up without passing out,” said Lukah.

My stomach dropped.

“When was the last time you tried?, ” I asked, trying to sound calm.

“About 15 minutes ago,” she said.

“Well, let’s try again,” I said.

Sure enough, she tried to pull herself up into a sitting position and about 3/4 of the way up, her eyes would roll back in her head and down she would go.

I asked her how many times she had passed out. “Four before you had me try,” she replied.

So that made five. I knew this wasn’t good.

I went to get her a glass of water when I heard a fall and ran back into the room.

She had intentionally slumped to the floor of her room, crawled to the hallway and into the bathroom because she felt like she was going to throw up. She was dizzy all the way.

She made it to the bathroom in time, and after getting sick, collapsed on the floor. She didn’t want to go anywhere — she just wanted to rest on the cold bathroom floor. I got her a pillow and blanket. And I got myself a kitchen chair and parked it in the hallway.

What a sight we would have been to someone walking in — her laying on the bathroom floor and me parked dutifully as her body-guard in a kitchen chair in the hallway.

Lukah tried to rest and as I watched her on that bathroom floor, I thought about how much I want to take this for her. She hates it when I say that but I do. It is not fair that she suffers so much. If I could only take it away and bear it for her . . . if I could only save her. . .

She decided she was ready to try to move to the couch. I called her brother in to help me. Surprisingly, we got her up and leaning on our shoulders as we walked. We made it to the living room before she passed out again (that makes 6). Unfortunately, we weren’t strong enough to hold her and she fell to the floor as she fainted.

It was humbling to see her there, so helpless. And I, her own mother, can’t do anything to help her. It is out of my hands.

We decided it was time to head the emergency room, so I called my husband and he came home from work.

When he got home, he went to our neighbor’s house to ask him for help getting Lukah into the van. They got her upright and supported by having her arms around their shoulders and she made it all the way to the van but then passed out as they were getting her into it (that makes 7).

We drove the 25 miles to the hospital. She did pretty good, but she was laying down the whole way.

When we got to the ER, I went in to talk to the admissions nurse. I explained that she could not sit up without passing out, so they wheeled out a bed for her instead. Three nurses and my husband helped guide her out of the van and onto the bed. She passed out again (8).

We talked to the ER doctor and nurses about her condition. Did I say talk? Oops I mean educated them on it (no one knows about this disorder I swear!).

They wanted to do orthostatic blood pressure readings on her. To those unfamiliar with them, that means they take your blood pressure in various positions: laying down, sitting up, squatting and standing. I thought to myself, “How is THAT gonna work?” Of course they were able to take the laying down one ok. But when they go to the sitting up one, she passed out (that’s 9). They gave up on all of the others.

In the ER, they drew some blood did a urine test. The nurses started her IV . . . typical stuff. Everything had to be done while she was laying down though of course, or she would pass out.

Here is her “lying down selfie.”

The blood work came back and her “D-Dimer” level was high. I had no idea what that meant but the ER Doctor explained it is an indicator for a blood clot. GAH!!!!!!!!!!!!!!!!!!!!!!!!!!

They whisked her off for a CT Scan to check for a clot. “WTH? NOW THIS?” I thought! About 1/2 hour later we found out there was not a clot. Whew.

About 5 hours into this, the ER doctor was unsure of what to do next so he called Lukah’s cardiologist, Dr. M.

Dr. M asked him to admit her, keep her on complete flat bed rest, and he would see her in the morning.

When Dr. M greeted us the next morning, he told us that her urine had tested positive for a urinary tract infection (also very common in dysautonomia). He checked her ears and noticed she had an ear infection, too. He started her on antibiotics.

He went on to explain that he believes her constant fainting was her body’s defense against the infections. In other words, because of those minor infections, her autonomic symptom of fainting, became extremely exaggerated.

I called Lukah’s autonomic neurologist in Chicago, Dr. B., to discuss, and he agreed. He said anything can set off her exaggerated autonomic responses: an infection, stress, a shot, etc.

C-R-A-Z-Y!

Here she is feeling a bit better on Friday when she was able to at least sit up partially for the picture.

Lukah remained in the hosptial until mid afternoon on Saturday when she was able to come home because she could walk without falling. Here is her nurse helping her walk the halls of of the hospital.

So far, she is doing well at home (as far as the passing out goes).

The Beast took her down for a bit, but she fought and thankfully, she is back on her feet. For now anyway.

I’m sure the image of her passing out time after time will replay in my mind for a while. It’s not something any mother wants to see. And it saddens me that this is her life — that this is what she deals with on a constant basis.   I want to save her from it.

There is a song that expresses exactly how I feel when I talk about saving her. It is by Simple Plan. Take a listen . . .

While I’m learning that I can’t save her, there is one thing I know I can do — keep “Looking for Lukah.”

God Bless.

The Photograph.

They say a picture is worth a thousand words.  That may be true, but can it also be worth a thousand tears?

The photograph was nothing phenomenal.  No heart wrenching, award-winning shot of someone looking to the sky and weeping after a disaster. It was just a traditional “yearbook” picture of the CHS Concert band in a cardboard frame folder, with an individual shot of Lukah holding the clarinet she has played since 6th grade.  But the second I saw it, the sadness hit; raw and to the core.

I have purchased team and group photos of Lukah for years — Ever since she began playing softball when she was 6.

But when she brought that band picture home, I suddenly realized it was probably her last.

It is unfair.  She should still have two more years of “group photos” — two more years of sports and band and fun.

But instead of enjoying her high school years, she is at home, lying in bed recovering from seizures and suffering from the debilitating symptoms of POTS.

I have hauled Lukah all across Illinois for her sports and organizations for 7 years, and in an instant that band picture made realize I will probably never do it again.

In a weird way I am grieving, and I feel selfish. Thankfully, I am not grieving the TRUE loss of her.  I am instead grieving what once was. I am grieving her life BP (before POTS).

Her life BP was filled with activities: softball since she was 6, basketball and volleyball starting at nine, band and track starting at 11.  She did everything, and she did it well.

She currently holds the school record for pole vault for 7th grade at the Junior High.

Here she is, when she was strong,  flying nearly seven feet in the air:

Things are so different now, than they were even a year ago when she was gearing up for her first high school softball season.  She only made it through a few weeks of practice before The Beast introduced himself.

Here she is in her uniform, the night they were handed out.  Too bad she never got to use it.

And here she is in another uniform she didn’t get to use . . . volleyball . . . her favorite.  She practiced in the summer but The Beast had other plans for her by the time the season started. She never even got a chance to play in a game.

The Beast steals its victims’ youth.  Not just Lukah’s — so many others suffering from POTS have the very same story.  It is so sad.

One of Lukah’s doctors told me that for some reason, POTS is known to affect “overachievers.”  Many kids suffering with POTS were once strong athletes who also excelled academically.  Lukah fits that profile.

I read story after story in my online POTS forums about once high achieving kids who barely end up graduating because they have so many absences from school.

When Lukah was first diagnosed, we were hopeful that she would outgrow her POTS.  The statistic we were given was that 80% of children diagnosed with POTS outgrow it by the time they are in their early twenties.

That statistic quickly changed.

A few months after she was diagnosed, Mayo released new statistics:

20% of children diagnosed with POTS outgrow it
60% of children diagnosed with POTS remain the same
20% of children diagnosed with POTS get worse

The odds are against these POTS kids, and it is heartbreaking.

But I believe in miracles.

I got Lukah the movie “Soul Surfer” for Christmas.  It is about a young surfer by the name of Bethany Hamilton.  Just as she was on the cusp of a professional surfing career, a shark took Bethany’s arm, leaving her with only one.  Bethany overcame many obstacles to achieve her dream of becoming a professional surfer.

I believe Lukah will overcome her obstacles, just as Bethany did.  She will become one of the 20% that recovers, and go on to do great things.

Afterall, as Bethany said, “”I’ve learned that life is a lot like surfing. When you get caught in the impact zone, you need to get right back up because you never know what is over the next wave, and if you have faith, anything is possible. Anything at all . . . “

God Bless.

Angels and iPods

 Today, I am posting the second in a series of three posts about angels making “appearances” in our lives during the last year in Lukah’s battle with dysautonomia.  

“Dashing through the snow . . . in a silver mini van . . . o’er the hills we go, with our favorite Chicago Bulls fan!!”

  My son Callahan is a Chicago Bulls addict, and every year, the only thing he wants for Christmas is Bulls tickets.  So, I happily spoil — oops I mean oblige —  him.  This post-Christmas overnight trip to Chicago is quickly becoming a family tradition.

We go up early in the day and spend time as a family having lunch in the city and viewing the incredible Macy’s window displays.  In case you haven’t seen these windows before, here are a few pictures of them:

In the evening, the boys go to their Bulls game and the girls go shopping on State street.

 It was very warm in Chicago on December 28  —  we barely even wore coats that evening as we conquered the State Street shops.  After hitting Target and T.J. Max (my favorites), we waited at a stop light to cross the street.

The warm temperatures caused the intersections to be really crowded — it seemed EVERYONE was taking advantage of spending their Christmas cash in the city on this beautiful evening.  We barely made it across the street before obnoxious honks erupted from anxious cabbies waiting to hit the gas pedals.

Not long after we got to the top floor of Old Navy (YES!  A two-story OLD NAVY!  How cool is THAT?), Lukah turned to me and said, “I think someone stole my iPod.”

I said, “Now why do you think someone stole it?  Maybe you dropped it?”

She went on to tell me that as we were crossing that crowded street, she felt someone lightly touch her lower back area.  At the time, she just thought they accidentally brushed up behind her since it was so crowded.  But, when she got to Old Navy, she reached for her iPod and it was gone.  It was then she knew that she had been pickpocketed!!!!!

I couldn’t believe it.  After everything she has been through?  Now some idiot steals her iPod?  The same iPod that helps her remain connected to her friends, through apps like Facebook and Twitter, as she lies at home in bed?

My husband and I actually took it harder than she did.  She said she was sad but that there was nothing she could do about it so why dwell on it.  But we kept going back to the fact that she has been through so much . . . two hospital stays in a 6 month time frame, countless doctor’s appointments (with no answers), near-daily seizures, headaches, stomach aches and other digestive problems, exhaustion . . . I could go on and on.  She is 15 years old, had to drop out of her beloved sports, can’t get a driving permit, barely sees her friends anymore, and had to go on homebound school all in a matter of 9 months.  And now, someone steals her iPod?

In a moment of anger, I posted the following status on my facebook page:

“To the person who pick-pocketed Lukah’s iPod today in the city, I wish you knew that you stole from a sick girl who finds comfort through that device when she is down. It not only helps occupy her time on long days and nights at home, but it helps her remain connected to her friends who she rarely sees anymore. I hope it was worth it to ya, weasel!!!!”

The comments started pouring in.  They started with ones like: “Scumbag!”  “Makes me sick!” and “How terrible!”  and  then somehow turned to “We should all pitch in and buy her a new one.”  “Yeah!  I’m in!” and “Let’s do it!”

I quickly said, “Thank you!  You guys are so generous but that is really not necessary!”

Well, guess what?  It was out of my hands.

My husband’s cousin began organizing a funds drive to get Lukah a new iPod. The donations came pouring in.

Within the next two weeks, she brought over not just one batch of donations, but two!

And, we had people mailing donations to us or dropping them off at our house, too.  It was unbelievable!

My husband posted the following on facebook.  I couldn’t have said it better myself (other than the fact that I am not silent about her disease.  🙂 )

“I have been pretty silent so far on Lukah’s illness but the recent selflessness of people has prompted me to speak out. I don’t like to bother people with our troubles but it truly was heartbreaking to me when Lukah’s iPod got stolen. I almost think we were taking it harder than she was. I just couldn’t believe yet another bad thing had happened in the worst year of our lives. Two years ago, I didn’t think I could have had a worse year than that one until Lukah’s problems started and proved me wrong. We have had so many medical bills in 2013 (think shoe box crammed as full as you could get it) that replacing the iPod was not an option. She was gonna return some Christmas gifts and use her own money to get a new “used” one. So, when Andi showed me on Facebook what you guys were doing to get her a new one, I literally had tears in my eyes. We have had so many things go wrong in the last 2 years that it makes one question everything spiritually and emotionally. But then people come together for a cause and show that there is still goodness and compassion in the world. I thank you, Andi thanks you, and most importantly Lukah thanks you. You all are my heroes for doing this for my little girl and I can’t thank my cousin enough for using her big heart to always step up and organize these things for others. We will make sure that you guys get an update when she gets her iPod. Thanks again for giving my baby a good day, we don’t get that many anymore.

Thanks again,

Corey Case”

To me, the people who donated to “the iPod fund” are angels — and not just because they gave money to a material item.  You see, the iPod is not the important thing here . . . it’s the lessons of humanity that came along with it that Lukah learned that are important.

 Because of these random acts of kindness, Lukah now knows how many people are on her side —  she realizes how many angels are supporting her in her fight.  She understands that, through all of her pain, there are still bright spots in her life, and angels that will pick her up when things are not shining quite as brightly.  Many times, it’s angels that she does not even know!   She saw true compassion in the works, and she will never forget it.  She was reminded of humanity and selflessness, and wants to pay it forward.

It also taught her that staying “connected” to people runs deeper than keeping in touch through the internet.  While the internet was the vehicle used to bring in these donations, they really came from relationships she and I have with people. It  was a reminder to be thankful for and to nurture those relationships.

Through all of this, Lukah also learned another important lesson: NEVER CARRY VALUABLES IN YOUR BACK POCKETS IN CROWED PLACES!!!!!!!!!!!!!

To each of the angels that contributed to her new iPod, thank you for your kindness.  It will always be remembered . . . long after iPods are the “latest” gadget to have.

God Bless!

Note:  Lukah ended up with a few hundred dollars more than she needed for the iPod.  Rest assured, it will be put to good use.  We are in the early processes of getting a service dog for her.  This dog will help alert her to seizures and syncope episodes BEFORE she has them so she can lay down and not be injured.  The dog is quite costly, so the extra donation money is in her new “Service Dog” savings account!  More to come on this application process and the dog in later posts.  🙂

Angels and ID’s.

It was late August.  The smell of autumn was in the evening air despite it technically still being very much summertime.  The kids were back in school and this small town was gearing up for football season. The Boys of Fall were meeting Friday Night Lights . . . tailgating . . . bonfires . . . My favorite time of year!

Lukah and her boyfriend Cristian attended the first football game of the season, just as many high schoolers do.

Unbeknownst to us, on their way home from the game, something terrible happened.

Lukah wanted to stop to use the restroom at a gas station and local teen hang out (yes that’s what teens do in Smalltown, Central, IL.  They hang out at the local Shell station.).  Cristian stayed in his truck while she ran into Shell.

He thought she was taking a long time, so he went in to check on her.

It was then that we got a call I will never forget.

It was Cristian.

“Lukah had a seizure in the bathroom at Shell and hit her head.  I can’t get her up.”

The words were barely out of his mouth when we practically dropped the phone and raced to my van.

Shell is only about 3/4 mile from my house, but of course, it seemed like it took an hour to get there.

While I have seen Lukah have seizures DOZENS of times, I was still not prepared for what I would see.

The  first thing I saw were two young girls about the age of 12 sitting on the floor crying.  They were propping the bathroom door open with their backs.  I said to them, “Is she in here?”  They nodded — tears streaming down their beautiful young  faces.

I went to Lukah.  She was awake, but lying still on the floor, in pain with her eyes fixed on the ceiling.  She was disoriented, but she said her head was throbbing and she was extremely sensitive to light, despite having the lights off in the bathroom.

I asked Lukah what happened.  She did not remember.

I  asked Cristian what happened.  Of course he didn’t know, because he had been in the truck.

I asked the young girls what happened. .

“We just walked in and found her.  She was laying there on the floor and was shaking with her eyes rolled back in her head, and the water in the sink was still running,” said the young blond girl.

“I think she was having a seizure,” said the young brunette.

I told them she probably was — that she is prone to them.

“I have seizures too,” said the blond.  “So does my mom.”

I wanted to cry.   I think I welled up but, as usual,  didn’t let the tears fall.

All I could think about were those young girls,  walking into that horrific sight of Lukah seizing on the floor.  I have walked into it many times at my house, and it still rattles me to my core.  I can’t imagine seeing that  at the age of 12.  I’m quite sure it is a vision that won’t ever leave them.

While the vision may haunt them like the devil, those girls are true angels.  Guardian Angels at that. And those Angels acted fast.

When they entered the bathroom, one of them went to comfort Lukah and the other went to get her bottle of water, because she remembered her mom is always thirsty after a seizure.

Lukah “came to” soon after they found her, and Cristian came in soon after she was awake.  When she wouldn’t get up, he called us.

When we got there, we stayed with Lukah while she rested on the floor for about 5 minutes.  We finally encouraged her to get up, thanked the girls, and  guided her to my van.

She didn’t think she needed to go to the hospital.  We debated it for a bit but decided to take her home and watch her.  I remember sitting in candlelight because the lights hurt her head so badly.

She continued to have a bad headache through the night and the next day, but showed no other signs of a concussion until the next evening, when she began having ringing in her ears and nausea.  Off to the ER we went and the concussion was confirmed.

Lukah’s concussion got better in about a week, but I remained fearful.  How times is she going to get hurt falling to the ground?  We had been lucky so far but our luck was running out.  And, this time, she was away from home . . . all alone!

While I can’t stop her from falling, I can do something to help the Angels who find her in that awful position next time.

Lukah now wears a stylish medical id bracelet.  On the back, it indicates her condition and has my phone numbers on it.  It helps me rest easier knowing that if she falls again while alone, the Guardian Angels who come to her rescue have an easier time knowing what is going on and who to call.  Here is a picture of it:

I see those young Guardian Angels around town sometimes.  I don’t think they remember me, but when I see them, I smile from afar and say a little prayer to God for putting them there to rescue Lukah in her time of need.

To those battling conditions causing sudden unconsciousness, just remember that Angels are everywhere . . . sometimes they even come in the form of Junior High girls.

God Bless!

The Beast.

Monday, January 6, 2014 was a day we had been waiting for.

We met “Dr. B.”

In early November 2013, soon after Lukah’s POTS diagnosis was made by a cardiologist at Lurie Children’s hospital in Chicago, I decided to take her to a neurologist, too.  I did this because I believe both types of doctors will play a huge role on Lukah’s Dysautonomia treatment team.

But, I didn’t want to see just any neurologist.  I wanted one well-versed in autonomic disorders.

Too many doctors around here in Central, IL., know NOTHING about autonomic disorders, and I was sick of wasted appointments with no results.

So,  I dove into researching who we needed to see.

 For me, distance was not much of an obstacle — I just preferred it to be in the Midwest if at all possible.  Afterall, we have already spent a week in St. Louis Children’s hospital and also had a week-long trip to Mayo Clinic in Minnesota under our belts.  What’s another trip if it includes answers?

So I asked my virtual friends on my POTS mom facebook group.  Those mom’s never fail me.  Like us, those folks have been through the ringer with their children’s illnesses.  They know what works, what doesn’t, who’s a good doctor and who is a waste of time.

During the “conversation” on the forum, a husband and wife team of neurologists from Milwaukee came up.  They were described as “mad scientists” who will keep going and going and trying  for answers.  I liked that approach and was just about to call to make an appointment when someone posted recommending we try to see  “Dr. B.”  He had recently relocated from working with the Milwaukee “mad scientists” to Rush University Medical Center in Chicago (only two and a half hours away from us instead of 4).  Recommendations for “Dr. B” kept pouring in, so I called to make the appointment.

We had to wait two months.

January 6th came as did the snowstorm and subzero temperatures, and  I questioned if we should make the trip.

I decided to try it.

We made it.  And I am glad that we did.

“Dr. B” was wonderful.  He talked . . . and listened.  We were with him for about 45 minutes.

I’m not going to get into a lot of what he told us in this post, as I am not ready to do so yet, but I do want to talk about one thing today:  what he said about her seizures.

Dr. B is worried about them.  He says seizures are rare in dyautonomia/pots.  He explained that he  knows Lukah has been hooked up to inpatient video EEG two times already this year, so he doesn’t want to go that route again, but he is worried that her seizures are not registering because they are too deep in her brain to show up on an EEG because the wires are on the SURFACE of her scalp.  If the seizures stem from deep within the brain, they will not register on the typical EEG or video EEG.

Here’s a picture of Lukah at St. Louis Children’s hospital, hooked up to her video EEG equipment

Dr. B decided to start Lukah on a new seizure medicine, and I am glad.  She has not been on a seizure medication since April, because when her seizures did not register on the video EEG in St. Louis, they yanked her off of the seizure medicine.

Corey and I have never felt like seizure meds were given enough time to work, or that perhaps a different seizure med could be the answer, because we had only tried one kind.

It’s too soon to tell if the new meds are working, and unfortunately, she had a seizure again last night and again this morning.

As usual, they weigh heavy on my heart.

Long ago, I named her seizures “The Beast.”  Now that  Dr. B is looking at epilepsy again, I recalled a poem I wrote when all of this started last Spring entitled “The Beast.”  Here it is:

The Beast

I knew it the first day– it was like women’s intuition. I realized what it was well before we saw any medical clinician.

She was only eight, in a grade known as “the third,” A mere baby when her first episode occurred.

She fell to the ground and shook and her name she could not hear,

Even though I yelled time and time again, “Lukah wake up! Lukah my dear!”

It seemed like an eternity, and I was on a mission; as I dialed the phone to her long-time pediatrician.

“Do I call an ambulance?”  I ask.  “No,” she said. “I’ll see her right away.” I won’t ever forget her appointment that day.  

“This is your freebie,” the doctor said with a pause.  “If it happens again we will test to find the cause.”

I knew right then it was no fainting spell, you see; I knew in that moment it was EPILEPSY.

Round and round we went with specialist after specialist. And every time, the true diagnosis was dismissed.

“Drink more water. . . get more sleep,” We would  shake our heads, sigh and climb back into the Jeep.

“This can’t keep happening,” I would say. It seemed like with each different doctor, she was being  cast away. 

Years went by, the episodes few and far between. Until one evening when she was 14.

Back with a vengeance the beast returned; Several spells in one week—we were very concerned.

A new doctor saw her right away;   And diagnosed her with epilepsy on that very same day.

It’s not something, as a parent, you ever want to hear. It’s a heavy diagnosis – I still want it to disappear.

Yet I had known long ago that epilepsy was the beast we were about to face, In the life of our daughter, Miss Lukah Rose Case.

While I had known it since the first time, it’s still hard to endure. For with this horrific disease, you see, there is no “cure.”

Medicine may help but it takes a while, Until then, you hope no one notices the constant worry behind your smile.

Each day I wonder, “Will it happen again or tonight will she be free? To live the life of a normal teenager –wistful and full of glee?”

It’s hard not to smother . . . not to overprotect; While we wait and wait for the medication to take effect.

Even if it helps, I still wonder in the back of my mind, “Is the dosage right or will it happen again?  And if does, what kind?

Atonic, complex partial or myoclonic? And, oh God, will they continue to be chronic?

Will the effects be minimal and she’ll be back fast?  Or will it steal her for so long that several hours will have passed?”

The unknown is the scariest part, yet she is as brave as can be. Her motto is, “I may have epilepsy, but epilepsy does not have me.”

Perhaps, I’ll adopt that positive motto one day, Until then, though, I shall pray: “

Dear God, please keep my baby safe and out of harm’s way, as she enters each moment of every single day.”

And if it becomes her time to fall, Please guide her to safety through her grand mal. 

Please give her strength to endure the unknown, Especially, at least, until she is fully grown.

Please protect her from those that are mean, And, I also pray that she not pass on this horrific gene.

I ask that you help me be strong, And selfishly, I still pray that you will make their diagnosis wrong. 

But most of all, I pray for peace, for all of those suffering from this beast, may their seizures completely cease.”

—  Andi Case, March 28, 2013

 Today I pray for those suffering from “The Beast.” 

God bless them.

One Week.

Seven days.

168 hours.

10,080 minutes.

604,800 seconds.

That is how long it has been since Lukah passed out or had a seizure.

To some, a week does not sound like very long.  But, to someone dealing with this problem on a daily — and sometimes multiple times per day– basis, a week is a significant milestone.

It has been one week since I have had to watch helplessly as my baby is taken from me by “The Beast” (what I call her seizures).  Seven days have passed since  I have had to watch The Beast overtake her young body with convulsions and then what seems like a never-ending blank stare.

One-hundred-sixty-eight hours have passed since I have had to face the aftermath of The Beast when it steals her from me, leaving her confused and disoriented for minutes to sometimes hours.

While I do not know what has caused this “break”  from The Beast, I am hoping we are on the right track with her medications.  Her cardiologist, “Dr. M” has increased her beta blocker — she is now taking it three times per day.  Perhaps that is slowing down The Beast.

We shall see.

We’re not on the homestretch yet though — Lukah’s longest period  without a seizure since March 11, 2013 is seventeen days.  So, we’ve got a ways to go.

But, I will enjoy this peace for her and  I will rejoice and praise God and celebrate and breathe a sigh of relief. . . for now.

Not only is one week significant with her being seizure-free, but one week also is significant to me because, exactly one week from today, Lukah will  be seeing a new doctor.  A POTS specialist in Chicago who I will refer to as “Dr. B.”

He comes highly recommended and I can’t wait to meet him and see what he can do to help her.

I hope, after visiting with him and having him develop a treatment plan for her,  I am able to write a celebratory post declaring that “The Beast” has left her alone for two weeks, and then a month, and then a YEAR!

That is my goal.

Until then, I will continue “Looking for Lukah.”

God bless!

Better Days.

A few years ago, I did something that warmed my heart.  I volunteered for our local organization that helps families who cannot afford Christmas for their children.  It is a wonderful organization called “Angel Tree”, and I helped out a few days before the parents came to collect their gifts.

As I sorted HUNDREDS of gifts, I was overwhelmed with emotion as I placed each carefully selected gift into each recipient’s “pick up box.”  I remember thinking it was so unfair that my kids had everything they could ever wish for underneath their Christmas tree at home, yet several hundred children within my own small community had to rely on others for help in receiving ANY gifts at Christmas time.

And I remember feeling sorry for the parents that could not get their children what they wished for and thinking how humbling of an experience it must be for them to have to ask for help.

This year, I signed up to help with this great organization again, and was looking very forward to it.  Then, in early December, I came down with pneumonia.  I was sooooooooo very sick for two whole weeks.  I had to cancel my volunteer day.  😦

As I was home in bed, coughing my lungs up, I caught glimpses through facebook of the local “angels” as they worked hard to fill each family’s donation box with the gifts that the “angels” had selected for them.

Look at all of those boxes.  Each box represents a family in need from within my small town.

As I watched the pictures being posted, it dawned on me that I had something VERY much in common with these parents.  

I cannot give my child what she wants most for Christmas.

Of course, there are dozens of beautifully wrapped gifts underneath the tree, just waiting for her to unwrap on Christmas morning.  But that’s not the gift she wants.

She wants to be healthy.  

Here’s a facebook post she recently wrote:

“I can’t think of anything I want for Christmas other than to be healthy again!”

Ouch!  Complete dagger through my heart, because I can’t help her.

For once in my life, I can’t give my child what she really wants for Christmas.

But, I can pray to God that He can grant her Christmas wish, and I do believe He will.

Someday.

Ever since I was little, I have always been able to easily relate the experiences I am going through to songs — Music has always spoken to me.

The song, “Better Days” by the Goo Goo Dolls,  has been a favorite Christmas song of mine for several years.  It is a good reminder of what Christmas is really about.

But never has it spoken to me like it does this year.

If you’ve never heard it, I hope you’ll take the time to listen to it. Here’s a link:

And if you’d rather just read the lyrics, here they are:

Better Days by the Goo Goo Dolls 

And you ask me what I want this year
And I try to make this kind and clear
Just a chance that maybe we’ll find better days
Cuz I don’t need boxes wrapped in strings
And desire and love and empty things
Just a chance that maybe we’ll find better days

So take these words
And sing out loud
Cuz everyone is forgiven now
Cuz tonight’s the night the world begins again

And it’s someplace simple where we could live
And something only you can give
And thats faith and trust and peace while we’re alive
And the one poor child that saved this world
And there’s 10 million more who probably could
If we all just stopped and said a prayer for them

So take these words
And sing out loud
Cuz everyone is forgiven now
Cuz tonight’s the night the world begins again

I wish everyone was loved tonight
And somehow stop this endless fight
Just a chance that maybe we’ll find better days

So take these words
And sing out loud
Cuz everyone is forgiven now
Cuz tonight’s the night the world begins again
Cuz tonight’s the night the world begins again

Please join me in thoughts and prayers for those searching for the gifts they may not receive this year, whether because of a monetary situation (like those receiving gifts from the angels in my town through Angel Tree) or for those struggling with their health who need to see “Better Days.”

Please remember them with a thought or a prayer on Christmas morning.

God Bless.

Merry Christmas..

Cheers.

And here’s to “Better Days.”

Homebound.

Today was a rough day for me as a mother, and it wasn’t because Lukah has seized/passed out twice already this evening.

It was a rough day because, with one phone call,  it dawned on me again how real this is — how it is not getting better and how POTS is stealing her youth.

And how brutally unfair that is to my 15 year old daughter.

I remember going through my high school days jolly and carefree.  I participated in EVERYTHING I could (theatre was my ABSOLUTE passion) and I enjoyed every second of every year . . . breathing it all in. I loved my high school years and always say that I would go back in a second if I could.

Unfortunately, Lukah will not be able to say the same.

Lukah has always been athletic.  She has played sports competitively since she was young eight years old.  She was good, and sports have always been her passion.

This is one of my favorite pictures I have ever taken of her.  It was during her first season of competitive softball and she looks so young, thoughtful and intense!

Lukah’s health no longer allows her to participate in sports.

But the lack of sports is not what got to me today. It is the “normal” things that she can’t participate in that are upsetting to me . . . not the extra curricular stuff.  She is now to the point that she can’t even participate in what the state of Illinois REQUIRES her to, let alone the thing she wishes she could.

Lukah has missed 39 full days of school since the start of this year in August.  But that’s not all she has missed, because many times, she will show up for school and then pass out and have to come home. For example, while she has missed 39 FULL days of school, she has missed 51 days of science class so far this year.  C-R-A-Z-Y!

A few weeks ago, we had contacted the school to discuss options for her schoolwork, as it is hard for her to keep up and it is stressing her out big time.

Don’t get me wrong, she has AMAZING grades (all As), but we are worried about how long she can sustain that pace and also, since she is not in a classroom setting or being tutored, if she is getting the quality of education she deserves — one that will prepare her dream of going to college to become a teacher.

Today, the school administration called me about her situation.  We had a great conversation and the district will be making accommodations for her to relieve the stress of keeping up and also ensure she is receiving the quality of education she deserves.

Beginning next semester, Lukah will be a HOMEBOUND student.

It is unbelievable to me, and it makes my heart heavy.

One year ago, Lukah was a happy freshman in high school, with straight As,  her first “real boyfriend”, and was gearing up for her first high school softball season.

Eight months later, she can’t even attend “regular” school as she is too sick to do so.

Don’t get me wrong — I am most grateful for her to have this opportunity to get her rest and continue her education from home.

Yet at the same time,  I can’t help but despise the disease that brought me to the phone call I had to take today —  the disease that has my beautiful daughter within its’ evil grasp.

To anyone reading this who also battles an illness that keeps you from things that you love to do — or even the “normal” things in life, God bless you.

To others who can do “normal” things, please don’t ever take them for granted.

Today was rough, raw and real, yet it was a reminder of why I continue to fight for answers — why I will always be “LOOKING FOR LUKAH.”  

God bless.