March 9, 2009 - The Accident

One gorgeous, sunny almost spring day, Emily and I had run to Sam's Club to get a few things. We were rear ended while stopped at a red light, at the bottom of a hill. Our first thought, was that an EARTHQUAKE??? 6.2 popped into my mind, yes, it was a 6.2 on the Richter Scale. Alas, none of the stoplights were swaying, the trees were still, and I realized we were in Tennessee, not back home in California. There were no bad weather conditions, no reason, just slammed into by an older gentleman. I got out, feeling stunned, shocked, checking my back end and told him where we could pull off safely and deal with it. He said there was no damage - why bother? I told him that we needed to exchange information. I drove up the hill, to where it was calm and out of traffic.

He took off in the opposite direction - HIT and RUN.

We chased him down, got behind him and honked. Emily whipped out a camera and began taking pictures of the back of his bumper. The one time I did not have my digital camera with me! Knowing he was definitely busted, he pulled over to the side of State of Franklin, one of the busiest roads in our area. Great, let's do this thing with cars flying past. I got out of the car and told him to wait - that you don't just hit someone and run. Then I called the police, called my insurance agent, called Dave, called my chiropractor and sat and waited. I had been hit 6 months before - it was like a recurring nightmare, only this time, Emily was with me. I was almost over that first accident, almost healed, doing great - and this?

We were both really shaken up - by being rear ended, by his running away, by chasing him down, by someone my own father's age acting so foolishly. As I told him, "You don't just hit someone and RUN."

When the police came, I really felt compassion for him, and I did not mention that he ran.

Mistake #1. Never leave out vital information. Back home, hit and run drivers go to jail. I did not want to send someone my father's age to jail. I was so shook up - I just did not think. Emily was stunned and just freaked out. We simply wanted to go somewhere safe and get away from the situation.

Within a few hours, we were thoroughly tested, evaluated and then adjusted by our chiropractor, Dr. Brad Eldridge. He was incredulous - couldn't believe I had been hit again, this time with Emily. He is a fantastic chiropractor, gentle and deliberate, encouraging and excellent at chiropractic care. He had put me together once, I was absolutely confident he could put both of us both back together, structurally. The rest of the day was a blur, dealing with insurance companies, and all that comes with being in an accident, not to mention pain!

The next morning, Emily woke up late. When she woke up, something was terribly wrong with her vision, with the right side of her face. She could not see properly, her peripheral vision was gone on the right side, she could not see color properly, she was having trouble hearing, her face was swollen on the right side. I immediately called our eye doctor and they got her in STAT.  He gave her a thorough examination, did a visual field test and everything came back okay. He had seen her 6 months before and everything checked out the same. He told us that if the visual disturbance continued, that she needed to go the the emergency room.

We would both rather have root canal without an anesthetic than go to the ER, and we were already having insurance issues with the guy who hit us. His company was insisting that nothing was wrong, within hours of the accident and that they would not pay for medical care (they have not paid a penny, to this day!)

Add to that the fact that we aren't doctor-hopping, ER-going, urgent-care-running kind of folks. We were self employed for many years, with high deductibles and so we think long and hard before going to the doctor and we are extremely FRUGAL with health care. We just wanted to fix the structural damage through chiropractic care, which is cheaper and far more effective and it would be less conflict with the insurance company.

Please note, while it will be awkward, we have made a decision not to name, the "insurance company of the guy who hit us." It is just a personal choice at this point in time.

A few days later, Emily was still having visual disturbances, they simply did not go away. Difficult to describe exactly what was going on with her, but she still could not see peripherally and things were not clear. She was having headaches and just not acting herself, tired, sleeping a lot.

I called the insurance company of the guy who hit us to tell them I was taking her to the ER, that we had waited it out for a few days, but she had not improved. Again, they were negative about Emily receiving any further medical care. They kept insisting nothing was wrong with her.

We ended up going to the emergency room, and chose the hospital system my husband works for. At least his insurance company would get our employee discount, or if they didn't pay, it was the wisest solution for our budget. Emily was examined, they sent her in for a CT scan of the brain. She was sent home with no real answers.

So, we did what we knew to do. We kept up with the chiropractor for structural damage repair, going several times a week for a few months. We were busy dealing with the physical pain from being rear ended, and trying to heal from that.

Back home in California, when there is an earthquake, you first evaluate the structural damage, then you fix it. If you don't fix the foundation of a damaged structure, the building cannot stand. Chiropractic is the same way, it fixes damage to the structure. As your spine realigns and heals, it lessens pain. No drugs or surgery required. Effective. Relatively inexpensive. It works.

Meanwhile, after taking spring break and some time off from school to recover, Emily was suddenly struggling to do everything in school. At the time of the accident, she was solidly doing college prep work as a freshman in high school. She was doing fantastic, planning to get into veterinary school eventually. Emily is very goal oriented and had her life mapped out for her.

But suddenly, she could no longer read.

Summer of 2009 - Trying to Figure Out What is Wrong - Why Can't Emily See?

We kept thinking the whole thing would "just resolve." After an accident, a good chiropractor can put you back together, helping your body realign and heal, through adjustments. In the beginning, the pain can be fierce, tremendous. But you keep going, keep getting adjusted and eventually, you turn that corner. We were starting to do that with the physical pain, and were released from care, from the accident, with ongoing maintenance visits!

Somehow, we just thought the eye thing, the visual disturbance, would just resolve, and she would be back to her normal self again. Week after week, it just did not happen.

Summer burned on, the situation was not resolving and I begin calling every "specialist" I could think of. Why was Emily struggling to read? She was at grade level in 9th grade, when the accident hit, so why had she regressed? In grade school, she had struggled to read and was dyslexic. It took years to resolve and then she took off reading everything in sight.

Reading was an incredible privilege, a joy, a retreat, after all the years of struggle in her childhood. Emily would disappear for hours on end with a good book. She had eclectic tastes, and rarely read what other kids her age read. She loved reading Jane Austen, and our collection of leather bound classics, being careful not to crack the leather as she delved into a new tome. She would dabble in history, biographies, missionary stories and devoured every horse book around both how-to, horse care and everything equine she could get her hands on. She would come home from the library with stacks of books, spending many a content hour lost in the world of literature. She kept journals on books she had read, also writing about them on her website. Book held a wonderful new, treasured world that she was late coming to.

And suddenly, after a brief window of reading anything she wanted, that privilege was yanked out from under her.

I have written extensively about her reading issues, what we did to help her as a home educating family. Emily's story had encouraged so many, was been published in The Old Schoolhouse Magazine, I spoke at homeschool conventions. My most popular articles and talks were on Emily's reading struggles and on building a better brain. Emily's brain is a subject near and dear to my heart!

Having moved here from California, we were missing our old stable of experts. So, I called our local universities and colleges for help, trying to figure out what to do. Someone at ETSU suggested a doctor in Chattanooga, 3 hours away, who could help with visual perception issues, and who did vision therapy. While it sounded great, it was way out of range financially. I called MTSU and talk to the specialists there. No one had ever heard of what was going on with Emily, I am told they "cannot predict what the brain will do." They suggested Vanderbilt. Coming from Southern California, I felt lost - my specialists and hospitals were not on this side of the coast. I am not sure where to turn, who is good in our beautiful new neck of the woods, who to ask.

I tried desperately to figure out what search term to use, to try and research what was going on. What do you try, secondary dyslexia, no that isn't it. "Unable to read after being able to read" didn't make much sense, nor did "recidivism dyslexia." Google became a torture zone - no answers without the right search term. What had happened to Emily? We had no idea what it was called.

While the problem looked the same, was it dyslexia, or was it her eyes, or was it something worse. In the early days, we were not sure. Dyslexia and learning issues, were old familiar territory. We had dug out of those before, they were "knowns" in a very topsy turvy world. We aren't medical personnel. We simply did not know what was going on with Emily.

In July, we took Emily in to have a second eye exam, hoping for solid answers. She still could not see properly, the visual disturbance continued and surely, an eye doctor could figure out what it was.

The second opinion once again, revealed normal vision, by an ophthalmologist. Dr. Johnson thought the visual disturbance was in the brain, and suggested that Emily needed to see a neurologist.

This was the first real clue we had, that it might be her brain, rather than her eyes.

After the 2nd eye exam, we took Emily to our primary care physician to ask for a referral to a neurologist. We gave her the history and continued symptoms and she promptly ordered an MRI of the brain.

July 2009 - Emily's 15th Birthday - Is it a Brain Injury or Brain Tumor?

The first MRI of the brain showed a nodule, or a growth, in the pituitary area. This growth was of concern and they needed a closer look at what it was. It was pretty scary to find out there was a "nodule in your daughter's brain," as we were told.

Our primary care physician ordered a 2nd MRI of the brain, with contrast.

Emily went in to have the 2nd MRI, the same day that President Obama visited our area to talk about his health care plan. It was the summer of the great health care debate. We could not help but wonder, if their health care plan went through, would she have been able to get two brain MRIs in a week? Emily had the MRI, then we headed off to Kroger, with signs asking Mr. Obama if she would have gotten 2 MRIs in a week, under his plan. It was weird to realize we were no longer a "healthy" family, but that our daughter had a potentially life threatening condition.

The results from the second MRI came in. Our primary care physician diagnosed what was going on with Emily a concussion and told us it may take up to a year to resolve. After two very expensive MRIs, and an ongoing problem, she still chose not to refer to a neurologist.

The insurance wars rage on. The insurance of the guy who hit us has steadily refused to pay for anything that has happened as a result of the accident. We have been very frugal with costs. We simply use health care realizing that we are ultimately responsible for every dollar, that insurances can refuse to pay. They do. Frustrating. Meanwhile, since our private health insurance is aware of the accident, they rightly deny anything accident related.

After years of self employment and comprehensive care insurance - it KILLS me to have wonderful PRIVATE health insurance that, for all intents and purposes, we cannot practically use to help our daughter heal. Emily's problems started after the accident.....

Worse, in the middle of this is a 14 year old girl, who turned 15 in-between her 2 brain MRIs, who continues to have upheaval in her ability to see, read, learn, concentrate and a memory like Swiss cheese. She is secretly afraid that she is going blind...

There is one possibility. I am a great fan of Daniel Amen's work, and he has a satellite clinic in the Washington DC area, 7 hours away. They do SPECT imaging of the brain. I call, cost is prohibitive. They do not bill insurance, it must be paid up front. I contact the insurance of the guy who hit me, asking them to pay for a consult and SPECT scan at the Amen Clinic. Like every other bill, they refuse. There is no way we can afford to pay out of pocket, it would take us years to save.

That beautiful summer is spent trying to fix Emily in time for school to start. I researched everything online, tried to find out what was going on, but had difficulty figuring out search terms, let alone what was going on.

Finally, we take Emily to see a nutritionist. Are you aware of how nutrition affects the brain? Having been a student of how nutrition affects the brain for many years, with many "brain building meals" in our repertoire, this was a logical step. Let's flood her brain with the very best food, supplements and nutrition. I have written and spoken about this in the homeschool community. So, we add supplements and work with the nutritionists to repair her brain. Low tech, non invasive, cash-pay, but more affordable than MDs. Emily is released from the chiropractor, but still needs visits. We pay cash for all visits. The bills keep adding up.

Fall 2009 - Hope Fading For Practical Solutions

Summer turns into fall. Emily is still not able to see properly, she sees the top half of letters on a page, her world is still all blurry. We buy new lights and rearrange her room and encourage her to try to read with different lighting conditions. Perhaps more light, less light, diffused light, or full spectrum lights will solve the great riddle, or at least help her see.

School is very creative at this point - that is the beauty of homeschooling, you can wrap it around the student.

We get the opportunity to meet Dave Ramsey at his EntreLeadership Event in Nashville. While she may not be able to read properly, Em remains entrepreneurially minded and this was a fantastic opportunity to expand her mind with sound business principles. It was exciting to meet her mentor in person!

We take her back to our primary care doctor, to ask for a consult with out to a neurologist. Someone has got to help Emily. Our primary care doctor refuses to send her to a neurologist, yet ordered $8000 worth of brain MRIs, but won't send her to a simple neuro consult?

By this time, Emily and I begin to wonder if we are insane. We largely stop talking about the problem, no one seems to have an answer, it is embarrassing for Emily to go back to struggling and we are acutely aware that we are not explaining things properly. For all intents and purposes - Emily presents as a perfectly normal teenage girl. It is the secret battle to "see" that goes on in her mind, and though we do not know, she fears daily that she is slowly going blind.

So we go it alone.

At 15, the Jane Austen loving bibliophile, is suddenly imprisoned in a struggle to read. Her world is shattered, a huge chunk of her life is simply gone. Determined, she starts over with "baby books."

Literally, she picked up 2nd grade books and retaught herself how to focus and read. Print must be large for her to figure it out, she cannot see her 9th grade school books. I tell her to read every single letter. Reading is exhausting, no longer her passion. She struggles to finish 9th grade (in what should be her 10th grade year).

As I write this, months later, it breaks my heart. We understand and grieve with many in our community who have buried children in car accidents, and prayed as their child relearned to sit, stand and feed themselves. We know, providentially, that we are blessed. Yet at the same time, it breaks our hearts that our precious girl, who struggled so hard to read to begin with, who devoured a childhood of books in a few years, may never have the ability to read as she did in that brief, two year window.

From the sheer joy of perusing the classics, to the agony of starting over with Amelia Bedelia. All the while, she is volunteering with children at church in preschool and early elementary, acutely aware that their reading level has far surpassed what she is able to read. She was secretly terrified that they would discover that this big high school girl could not read at their level, yet she never stopped volunteering and doing what the Lord had for her.

Her life is a paradigm shift, shattered by one man's inability to brake at a red light.

Oct 2009 - Breakthrough - Sheer Grit, Determination and Perseverance!!!

Miracle of all miracles, she begins to read at grade level, in October, about 7 months after the accident. I write it on the calendar, and put a big yellow sunshine of happiness around it. A breakthrough! Perhaps our primary care physician is right, it takes a year to heal from a concussion!

January 2010 - Emily Finishes 9th Grade in 1 1/2 Years!!!!

2010 dawned, a fresh, new year. Surely, this nightmare will end. Surely, she can catch up with school. She finishes 9th grade, when she should be in the middle of 10th, at the first of the year! We are so proud of her - insanely happy - and take her out for a celebratory meal! She chooses Texas Roadhouse, and we butter the rolls with sweet honey butter and enjoy the victory. Letting go of the shame and humiliation of being so far behind, we tell our waitress the story of how we were hit, and how Emily could not read for months, and how it took her 1 1/2 years to finish 9th grade. We all cry or want to cry! Instead of judging us harshly - or looking at us like we are weird, she is gracious and says CONGRATULATIONS! We praise the Lord, despite all she has been through, and continue to trust Him with her future as we happily buttered yet another round of those Texas rolls (which are completely NOT on strict anti-inflammatory the diet we have adapted!)

The remarkable thing about 9th, she finished with all A's. An assignment that should take an hour, often took 3-4 times as long. She completed it and with incredible effort, did it well! I was amazed as I calculated her scores, how well she had managed to do. Yes, Emily struggles - but underneath that struggle is one brilliant kid.

February 2010 - Emily Starts 10th Grade (in the middle of what should be her sophomore year)

We start 10th grade, how on earth will we cram this into the next 8 months. Her one goal is to do 11th grade and 12th grade on time. In Sunday School at church, we are beyond blessed to have Phyllis N, who was a personal trainer for many years, start a women's weight class. We excitedly buy a few starter weights and begin to learn how to pump iron. Phyllis shows us form, function and safety and encourages us forward. When we are pumping weights, we are equal, no one knows the struggles. We know exercise is good for the brain, cuts inflammation and we eagerly go to class. We bring a weight lifting CD home and the whole family begins a 45 minute routine 3 days a week. As winter rages on, and snow storm after snow storm pound our area, we persevere.

Hesitant to bring our troubles out in the open, we are feeling really stigmatized by this whole ordeal and really uncomfortable talking about it - but we go to our pastor to ask the elders to pray over Emily. Pastor Roc is gracious and kind, sets it up for that Wednesday evening. We meet, our Sunday school teacher Steve reroutes his life during Raceway Ministry week to be there, and the elders and pastors pray over Emily, the sweetest, purest, most comforting prayer. As they sought the Lord on her behalf, a beautiful calm came over us and we knew that we would be able to handle, whatever it is, it was His. Sometimes the healing is in our expectations, sometimes it is physical and sometimes, the ultimate healing is death. We leave incredibly grateful to be a part of such a sweet church body and comforted beyond measure.

March 2010 - One Year Anniversary of the Accident - Still NO Answers

As the 365 days after the accident tick by, we hope beyond hope that the guy who hit us, that his insurance will pay the mounting medical debt off, repay our health insurance for what they have paid, and this whole nightmare will be done and over with. Wouldn't it be great to get our co-pays back as well? They refuse, a lawsuit is filed around the anniversary of the accident. We just want it over.

The one year mark after the accident comes with blissful freedom at the thought that perhaps that one year "pre-existing" condition is over. I am emboldened to actually try to use our private health insurance again - it is as if Emily has been uninsured for the past year. As we work on school work, I realize that symptoms continue, she struggles to see properly, her we still can't figure out quite how to explain what is going on with her vision.

Studying Equine Science - our horse fanatic - the girl who has read every horse book out there and is utterly over the moon when it comes to horses, can't remember horse details she has known since before we left CA, 5 years ago.

Slowly, it dawns on me - Emily is struggling with her absolute passion, horses, where she wants to spend her life. She has been working and saving to buy a horse since she was 10. She has read every horse book, lived, dreamed and breathed horses for so long, Equine Science should be a cake walk. Her life goal is to have a therapeutic horse ranch, nursing abused horses back to life with love and caring, and pairing them with neglected and abused children. Horses have been woven through every day of her life for years.

Something is seriously wrong with Emily....

March 2010 - Starting Over at Square One

So we decide to start with a new pediatrician. We had waited the requisite year our primary doctor advised to do, it had stolen a great chunk of Emily's high school, 1/4 to be exact. The concussion had not healed, symptoms continue, it was time to find a new path.

A friend suggested Dr. Estes at Holston Medical Group. We were able to get in right away, a huge relief.

Since we have spent so much time trying to define what was going on with Emily, and how her vision was affected and really felt like we never explained it adequately, a new approach was in order. We sat down and brainstormed, trying to accurately describe exactly how Emily's vision was affected. We took White Out and whited out the bottom of words. Tried to grab blurry text, then complied into a scrapbook, to attempt to share WHAT SHE SAW. Perhaps this would unlock the key to what was going on with her vision.

Dr. Estes came into the appointment and we were quickly aware that we had finally found someone to push this forward and help us find out what was wrong with Emily ,and how to fix it! She thought with the mind of a scientist, it was a puzzle, there are some compelling symptoms that Emily had, and she was going to work to help us find answers and solutions. We were thrilled!!! Finally, a guide through a maze we just could not find our way out of.

After a complete exam, thorough questions about the situation, Dr. Estes readily agreed that something was not right and Em needed to see a neurologist. Our insurance allows very few neurologists in our area, and the office made an appointment. Dr. Estes wanted to know the results of what happened.

We made the appointment with the neurologist and were on cloud 9. I was so excited, that I drove half an hour to his office, and filled out all of the paperwork the week before, so we could concentrate on what was going on medically, rather than insurance stuff and payment.

We are some of the "lucky Americans" that have private health care insurance. Yet, since the accident, insurance is a quagmire and it is all bottle necked. Payment completely stresses me out at appointments. Even though we are covered through Dave's plan, and remember, he works for a hospital system and we have good insurance, I feel incredible anxiety as I hand over the insurance card, knowing that very little has been paid and we owe 5 figures in this whole mess and that figure is climbing with each appointment. The minute that ICD-9 code alerts them to an accident, our private insurance flags it and doesn't pay. The insurance of the guy who hit us won't pay. The practitioner is left waiting. Bills mount. We technically have 2 insurances that should cover this, auto and private, yet neither are paying. Even though we are insured, with a doctors referral, I panic, knowing they probably will not get paid in the foreseeable future.

Is there ever a point in this mess where a 15 year old girl is the important part of the equation, not merely an ICD-9 code to batted around between insurance agencies?

Once the paperwork was done, I headed next door to get all of Emily's MRIs and CT scan on a disk for the neurologist. We were set! Finally, 14 months after the accident, she had an appointment to a neurologist, a brain expert!

The day of the appointment dawned and we were so excited. We had arranged to volunteer at church that morning, putting together folders for a giant simulcast, partially to take our mind off the appointment.

We arrived early, with our book prepared to show the neurologist what Emily saw, and how her vision had been affected and we had the control journal with notes from all doctors who have treated Emily since the accident. We tried not to miss a thing, this was our chance for answers on what was going on in her brain. The nurse examined Emily and did all sorts of tests with her, taking notes the entire time. Then the neurologist came in, asked questions, did an exam, asked more questions, performed a few mental tests, looked inside her eyes, examined visual tracking and then asked more questions. He did a complete exam.

At the end, he diagnosed Emily as having silent migraines and suggested she take an Aleve, or if we wanted something stronger, he could write a prescription. He also said that she had "post concussive syndrome" and something to the affect of after the accident, she essentially defaulted into the "learning disabilities" of her youth.

Take an Aleve?

By this time, we had been there several hours, it was around 4, we had arrived at 1:30. We were exhausted and we essentially left, not really sure what to think, but that did not seem to cover the situation adequately.

While we did not get the practical answers to help Emily, the neurologist certainly taught us how to focus in on DEFINING what was going on and he helped us understand how to talk about it. It was invaluable in that regard. While he did not solve the mystery of what is going on with Emily's eye sight or brain, he was a great help in narrowing things down, making it all more concise, to hand over to the next specialist. We realized we needed to emphasize the BLURRED aspect of Emily's vision, and the fact that the bottom of letters are often missing and that is what makes reading hard. We thought our handy dandy notebook would show him that, but he did not really pay attention to it.

When she had dyslexia, she could not read. Period.

Now, after painstakingly retraining her brain after the accident, by reading one letter at a time, she is able to read. She can pick up anything, from Socrates to Plato, the Bible to Jane Austen, a book of poetry or a magazine and read. Her ability to read is there. It is her ability to SEE that is causing the issue. Post accident, she cannot physically SEE well enough to read. Emily needs someone to stop the blur that her brain is apparently twisting letters in to.

(We will go into memory and concentration later)

Ah, the stuff we keep learning along The Great Brain Saga. It is almost like we have to figure out what is going on, figure out the vocabulary, the correct terms, then hand it to the medical professionals so they can tell us what to do. It is exhausting.

And let me tell you, six years of dyslexia are a cake walk compared to brain trauma. A walk in the park. This is new, uncharted territory, where we have no experience. It is a wilderness.

After the rather disappointing appointment with the neurologist, I reported back to Dr. Estes. She seemed surprised, and concerned - Emily wasn't better and she knew it. Something was wrong, it had gone on for too long. Dr. Estes was also acutely aware that we are caught in the great insurance quandary and how can she get a pediatric patient help in this situation. She is a total blessing from the Lord, she simply does NOT give up! She decided to send us to an occupational therapist, to see if we could get help with balance issues that our weight lifting had shown that Emily now had. All these little pieces of the puzzle - what is causing them?

We scheduled an appointment with an occupational therapist. Rather than make us wait until July, she put us in that week!!! We were so excited, just knowing that the OT was going to be able to answer our questions and help Emily regain what was lost. Enough with evaluations, lets get on to solving it.

That ended up being such a tough week in The Great Brain Saga! Ups and downs, high hopes, evaluations, therapy visits, ending with a 3rd MRI of the brain. It just felt like it all came tumbling down by the end of the week. The weekend stretched out interminably long, as we waited to hear the latest results. Had the nodule on her pituitary gland grown, did she have a tumor in her brain, or does it look like a brain injury?

The million dollar question: What took Emily's ability to see clearly since last March and what can we do to help her?

Occupational Therapy

The much anticipated visit with an Occupational Therapist, Julie Fish, at Wellmont Occupational Therapy, was fantastic! We loved Julie right away. She was warm and friendly, put as at ease, listened and asked GREAT questions! This was the first person, beyond Dr. Estes, that we had really connected with. If OT would work, we felt we had someone squarely in our corner that would guide us on our journey to help Emily, after the last 14 months of being in limbo. As we sat in the cheerful OT room, I could not help but hope that Julie could do therapy that would help bring Emily back around.

Julie set about evaluating WHY Emily has not been able to see clearly since the accident. She had Emily do all sorts of tests to figure out where she was. It was such a pure and clean relief, to go through the evaluation. Something REAL, concrete. Something to hang our hat on. Answers based on testing that made sense. Toward the end, during the visual exam, as Julie had Emily identify when she saw little fish puppets coming from behind, it suddenly became as clear as a bell where and how Emily struggled to see. Julie redid the exercise several times. Em had trouble seeing the motion on the right side, and definitely could not tell color, but saw it all as black.

It wasn't such a relief to hear Julie's initial thoughts on going forward. She recommended that we take Emily to a Vision Therapist and a Pediatric Neurologist down in Knoxville (with our own pediatrician's referral, of course). At this point, Julie thought there was nothing further she could do, before gathering more information from these appointments. She also said, while she is not a physician, it looked visual neurological, issues with the right eye. No matter how much we liked her, or wanted to hang out, there was nothing she could do.

We left stunned and a little down - we had found someone we really LIKED and occupational therapy seemed fun, practical, worthwhile and our insurance had APPROVED 12 visits (the first time our insurance approved!) But it did not look like it would help Emily at this point.

After our appointment, we talked to Dr. Estes and asked her to refer Em. We had already called the pediatric neurologist, almost 2 hours away in Knoxville. His first appointment was over 2 months away, July 8th. At that point, Dr. Estes decided to just redo the MRI on Emily's brain. Enough waiting and wondering if there is a brain tumor growing inside, or, as a friend suggested, a miniscule bleed. She ordered an MRI of the brain and her staff got back to us that it would be Friday AM.

Meanwhile, we made the appointment to see if Vision Therapy would help Emily regain her ability to see. We had checked into VT last summer, a few months after the accident. The only Vision Therapy we could find was down in Chattanooga, which is on the other end of our beautiful state, over 3 hours away. It was very cost prohibitive and totally out of our reach financially, for the therapy itself and travel costs weekly. To have Emily evaluated by a local optometrist who does Vision Therapy was a great option!

Over the years, we have met many people who have used Vision Therapy successfully. It can help kids with learning issues and focusing issues. Since March of 2009, Emily has struggled to see. Her world is a blur, her vision has all sorts of issues that she never had. Something has to help her, perhaps this is it. I called Family Eye Care and Pediatric Vision Center in Kingsport to see how much it would cost. This would be her 3rd vision exam in 14 months, I needed to know all the particulars, since we would probably be paying cash for it. (when your auto/private insurance are not paying, it really cuts options based purely on financial reasons). We also needed to know how much Vision Therapy was, since that would probably be out of pocket too. W were thrilled to find out that we could afford to pay CASH for all Vision Therapy appointments, if need be, and we eagerly made an appointment with Dr. Holliman.

Friday Morning Brain MRI

Friday morning, we were up early and off to Wellmont Outpatient for Emily's 3rd brain MRI. Dave had worked all night, so he was able to go with us. As always, the Wellmont staff was absolutely cheerful and fantastic. This was our third experience - and they are all so upbeat with the patients, kind and helpful during what can be a stressful time.

We are ruling out a brain tumor here - that is pretty stressful!

When you get an MRI with contrast, the nurse has to put an IV line in. She had a hard time finding Emily's veins, which is typical. Emily was so patient, so mellow, she just watched. They ended up doing both hands, and the second hand, were able to get a baby IV in. Proof that Emily is still a "Tiny Baby" no matter how big she gets! Emily went bravely back to the MRI machine. I snapped a few shots for her journal, and went out to wait. Dave and I sat and watched HGTV. It was a welcome relief, mind numbing information.

Emily came out and we headed off to Chick-fil-A for breakfast. Chick-fil-A makes everything better, and it has become a ritual after we do testing at Wellmont.

Dave went on to work for a few hours, and we headed off to get a quick work out in. Anything to relieve the stress, raise the endorphins and make this awful day pass. We were hoping for same day results on the mornings brain MRI, so did not talk on the phone, just tried to keep life calm, busy and wait for the call.

Vision Therapy

We headed off to Vision Therapy late that afternoon. Normally, I am on target and bring Emily’s Control Journal, with all test results and a 2^nd notebeook that we put together, trying to document how and what Emily is seeing. We have truly realized in the last few weeks that trying to DEFINE THE PROBLEM is 9/10’s of the problem! We aren’t doctors – we just do the best we can.

Can you imagine the panic you would feel at having your vision affected severely, and not being able to adequately describe it at 14 and 15 years old? Emily is such a trouper…and all the while she has been secretly convinced she is going blind.

We are finding that each appointment lately has helped us narrow down what is going on, and give us words to describe it. When you have limited time with a specialist, every minute needs to count!

Vision Therapy was feeling like our last resort! We had high hopes and met with Dr. Holliman. His assistant did all sorts of tests with Emily and realized that she has an issue with color on the right eye. She was fantastic, very thorough. When Dr. Holliman came in, we quickly realized that he has the heart of a scientist. Something was going on with Emily, and he was going to find it. We were excited and answered his myriad of questions. She was given a full evaluation and once again, her eyes checked out perfectly fine. Emily has 20/20 vision, her optic nerves look healthy, no swelling. Pending the brain MRI results of that morning, her problem is not the eyes, but in the brain. He continued to ask questions, probe, trying to figure it out.

He did have several fascinating ideas on what MIGHT have happened in the accident. I am hesitant to relay them here, we were exhausted by that point and I would not want to misinterpret what he said. Realizing that, here are my hastily scribbled notes. It is possible that at the time of the accident, it knocked a small emboli (blood clot) which prevented oxygen from getting to the eye. It is possible for it to flush out without a trace. That could have decreased the oxygen, resulting in a permanent change. This made perfect sense and was the first thing to actually explain what may have affected her sight. Again, I was one weary Mama, and I hope that is right.

Since her vision is fine according to all testing, she is not a candidate for Vision Therapy. Another local hope dashed. Not trying to be overly dramatic, but we sat there and felt rather hopeless. Dave had worked for most of the last 36 hours, taking time off for the two tests and I had been taking her to doctors all month – it just felt awful. Something is wrong with Emily’s brain, and it is coming out perceptually in her vision.

Vision therapy won’t work. What will? Who or what can help our daughter?

Monday morning, bright and early, Dr. Estes called with Emily's results from the 3rd Brain MRI. After an anxious weekend waiting to see if Emily had a brain tumor and if the "nodule" discovered last summer had grown, it was great to see HMG on the phone display, and hear her voice! Answers!

We cannot say enough good things about Dr. Estes at Holston Medical Group in Kingsport. She has absolutely taken this entire situation with Emily and done everything she can to figure out what is going on, and how help her! Dr. Estes is patient, brilliant, thoughtful and best of all, she truly has the heart of a scientist. We could not ask for a better, more thorough, more persevering doctor! We are thankful to have her now, a year into this whole thing! We highly recommend Dr. Estes as a pediatrician if you are in the Tri-Cities area!

Now for the MRI report from my hastily scribbled notes. Remember, I am NOT a medical professional, just a Mama, doing the best I can to help others along this path, and to retell what is going on in Em's life! (Marked image is not Emily)

Emily has a pituitary enlargement, with minimal enlargement, since the last MRI, if any. There appears to be a 1mm increase since last July, which could be considered normal. It could also be a slight difference caused by machine or by those who administered or read it. Overall, not significant enough to cause major concern.

Emily has an irregular pituitary, a pituitary enlargement. This COULD be a micro adenoma, which is a non-cancerous tumor. If that is the case, medication can help with symptoms.

It does not appear to be pressing on the optic nerve, causing symptoms.

For now, with this 3rd MRI of the brain, whatever IS on her pituitary does not APPEAR to be causing the issues Emily is having with her vision.

Last Friday, Dr. Holliman agreed, during the vision exam said her optic nerve looked healthy and good. So that is a praise!

We have a friend who had surgery on her pituitary while Em was getting that MRI. Emily has shared symptoms with Linda - who has encouraged us NOT to give up on this, in case she has a tumor too. We are relieved to know that it doesn't look like our daughter's has grown or is significant.

That being said, it IS unnerving to look up micro adenoma....it just adds to the mystery.

Talked to Dr. Estes about the Vision Therapy appointment and that Vision Therapy was not an option for Emily. Also talked to her about the upcoming Pediatric Neurology consult, don't have high hopes there. We talked about the Amen Clinic, and the special SPECT scan possibly being able to show blood flow patterns and give us insight and a treatment plan.

To be continued....