TUESDAY ~ July 13, 2010 ~ 4 to 7pm

3206 Peoples Street, Johnson City, TN 37604

Johnson City Crossing across from The Home Depot

Great food for a great cause!

To benefit Emily Baughn’s Medical Fund – is it a brain injury or tumor? You can read about Emily’s story at www.TheGreatBrainSaga.com and learn how to help! Chick-fil-A is donating a portion of sales toward Emily’s Medical Fund.

Bring this flyer, along with everyone you know and enjoy a great dinner! Thank you for eating at the Johnson City (People’s Crossing) Chick-fil-A and helping Emily!

Help that girl ~ eat lots a chickin!

Affliction is one of God's medicines. By it He often teaches lessons which would be learned in no other way. By it He often draws souls away from sin and the world, which would otherwise have perished everlastingly. Health is a great blessing, but sanctified disease is a greater. Prosperity and worldly comfort, are what all naturally desire; but losses and crosses are far better for us, if they lead us to Christ. Thousands at the last day, will testify with David, and the nobleman before us, "It is good for me that I have been afflicted." (Psalm 119:71) ~ J.C. Ryle**

As a meticulous planner/researcher HEAVILY researching for my own child right now, I feel your angst! Especially feel the mentally/emotionally DRAINED part!


If you haven't already, start a "Control Journal" in a loose leaf notebook and burn up an ink cartridge PRINTING. Make tabs based on your issues/needs. File papers under tabs. Make a master page for each issue with live links (keep in a Word file too) and that way you can grab what you have looked at easier. In my brain scenario, one on pituitary tumors, brain injury, specialists, if it comes to it, hospitals to consider for surgery. That kind of thing - I don't know the topics in adoption - plane fare, clothes to pack for people, clothes to pack for Moses, etc.

Online research is GREAT, but printed pages are often easier to make DECISIONS from. So print stuff, read it on paper, discuss with hubby/the fam and decide if it is worth keeping.

That control journal becomes your BRAIN. It is IN there and you don't have to worry! And if you don't want to throw away stuff, keep 2, and keep your 'trash' in the 2nd notebook, so if you find you need it, it is there! We actually have 3 for Emily right now. No, we have 4!

-- medical notes from ALL practitioners and DVD of her brain imaging so far. I have this in chronological order, but need a bigger notebook and to switch it to by specialty: eyes, brain, therapists, etc.
-- book of what/how Emily SEES (a picture is worth 1000 words and SHOWING them gets the point across. We want help - not 20 minutes describing when 30 seconds paints the picture!) The idea being - what is the work around in her BRAIN to help her see
-- book on all fundraising activities, people, etc.
-- Travel book - a THIN book that will have ALL travel information, maps, etc. We are going to Amen Clinic, we also want to go to the Brain Injury Center in DC, and that sort of thing. Trying to cram all we can into that time. We are printing maps so we can LOOK at them, then pop in the car and use the Garmin -make sense? We have never been to DC!

So, see, when you have all of this in a NOTEBOOK or series of NOTEBOOKS, it is easier to handle. Also, the pure physicality of the NOTEBOOKS helps fire other parts of the brain/modalities, to help with decision making!

You probably already have this done - but this is the seed of a blog post on my list to write anyway! Take the stuff I outlined and make it Moses, if you haven't already!

3. Steal the old business idea and make a list of pros and cons on the toughest decisions or scenarios. Write them OUT so you understand them. This fires up other parts of the brain, and allows for easier decision making!

4. Have a prayer section - and write the answers in it!

Had to deal with a brain issue?

Run, do not walk, and go rent or buy Gifted Hands ~ The Ben Carson Story.
Based on the book, this movie tells the fascinating story of a gifted neurosurgeon, who views the brain as an absolute miracle from the Creator above!!!

We heard Dr. Carson speak at this years Chick-fil-A Leadership Simulcast (formerly Maximum Impact) and LOVE him. Encouraging, soft spoken, kind and loving - yet beyond brilliant - Dr. Carson is a rare person who makes you feel that you CAN, no matter what! And when you are dealing with a "brain situation" it is imperative that you feel you CAN! The brain is a miracle indeed, and in the midst of running to physicians, therapists, tests, etc, that can be forgotten.

If we could arrange a SPECT scan at the Amen Clinic in Reston VA, then & a trip just a tad up the road (exactly 57 miles, but who is counting!) to Baltimore, and meet with Dr. Carson - WOW!!! He is SO inspiring in real life and his story is even better! From separating conjoined twins, to regular brain surgery - he is AMAZING!

Dr. Carson sees patients on Monday and Friday afternoons at the Johns Hopkins Outpatient Clinic....start praying! I will call tomorrow to try and set BOTH appointments!!!

Signs and symptoms of concussion from the Center for Disease Control.

Wow - what an amazing few days we have had in The Great Brain Saga - as we have launched the site to help others learn about brain trauma, and to Emily get a brain SPECT scan at the Amen Clinic! We have literally been blown away by what the Lord is doing in and through His people!

What do you think of the Providence of God? Well, let us share with you what the LORD is doing in The Great Brain Saga, are you ready???

• 88 Facebook fans and climbing, become a fan of The Great Brain Saga!
• emails and cards of encouragement flowing in
• a fundraiser in the works at Jason's Deli in Johnson City TN Fathers Day weekend (all 3 days) and
• He has provided $1275 of the $5000 needed for the SPECT scan - we are at 26%!

Can I get a witness? He takes care of His children!!!

So thinking of Providence, that beautiful, rather old fashioned word, thought a definition was in order. We love Webster's 1828 Dictionary and used that one!

PROV'IDENCE, n. [L. providentia.]

Well, we are taking a break in The Great Brain Saga, to head out to Small Miracles to begin a summer stint volunteering with special kids doing therapeutic horseback riding! Emily would like to work with kids and horses in a similar manner, so our whole family volunteered.

We will be working with a variety of special needs kids including autism, ADD, ADHD, CP, and yes....even brain injured kids!

Can't wait to see what God has in store the next 8 weeks and how we can love these kids in HIS name!

Did I mention, horses scare me....

Absolutely FANTASTIC article on what living with a brain injury is like. Sometimes, I just feel frustrated. Why couldn't we have found this a year ago???

Anne Forrest’s experience with mild traumatic brain injury was the subject of the comprehensive article, “I Wanted My Brain Back” in The Washingtonian magazine (March 2007). The Washingtonian is a monthly print magazine about life in the Washington, DC area.  An economist before her accident, Anne was injured on June 14, 1997 and is now a volunteer at BIAA.

The story has helped patients and families understand how an invisible injury can cause unexpected damage and how hard recovery can be.  Please click here to read the article

This is in Vienna, VA!!! Right near where we are going!!! We will definitely visit the Brain Injury Association of America when we take Emily up to that area for testing - what a HUGE ENCOURAGEMENT it would be for her.

We want her to take this "new normal" and live out God's plan and purpose in her life!

From the Brain Injury Association's website:

Every 23 seconds, one person in the US sustains a Traumatic Brain Injury.

An estimated 3.17 Million Americans currently live with disabilities resulting from Traumatic Brain Injury.

1.4 Million Americans sustain a Traumatic Brain Injury each year.

More than 50,000 people die every year as a result of Traumatic Brain Injury.

hich major medical centers are doing SPECT Scans across the United States?

Emily needs a SPECT scan to evaluate what is going on in her brain. The SPECT scan will give needed images and information on blood flow patterns and help solve the question. We are evaluating brain injury vs brain tumor and trying to figure out which one is affecting her sight so dramatically. We need to determine what to do, and the Amen Clinic is our best resource. None of the insurances involved are willing to pay for this, and we are in limbo if we don't do something. Emily is a bright 15 year old girl who just wants to finish high school, with the ability to see properly to do her studies.

For brains, the pioneer in SPECT scans is definitely the Amen Clinic, started by Daniel Amen, MD.

Some other cutting edge medical centers across the United States who are doing SPECT scans of the brain and more information below:

Mayo Clinic has an article on SPECT scans of the brain, up in Rochester, MN.

Johns Hopkins Brain Injury Clinic uses SPECT scans, but you must be over 18 to see them. Emily is almost 16. We may try to get her into Johns Hopkins at the same time we are up in that general area. Article on problems after traumatic brain injury.

Yale Brain Tumor Center uses SPECT imaging in treatment of brain tumors.

UC Irvine uses the SPECT scan to look at brain tumors and notes the following:

Other brain scans. Other tests, such as magnetic resonance spectroscopy (MRS), functional MR scanning, diffusion tensor imaging (DTI), single-photon emission computerized tomography (SPECT) or positron emission tomography (PET) scanning, help doctors gauge brain activity by studying brain metabolism and chemistry and blood flow within your brain. These scans can be combined with standard MR images to help doctors understand the effects of a tumor on brain activity and function, help surgeons determine if a tumor can safely be removed and help guide surgeons at surgery. However, doctors don't typically use them to make an initial diagnosis of brain tumor.

Great article from Children's Hospital Boston about Brain SPECT imaging. The information below is from their website.

What is a brain SPECT?

A brain SPECT is a diagnostic nuclear medicine imaging exam that uses a radioactive substance to visualize brain function. This imaging technique is sensitive and can detect changes in brain blood flow associated with seeing, hearing and thinking. Pictures of your child's brain are obtained after a radiopharmaceutical is injected into your child's veins. A common radiopharmaceutical used for brain SPECT is technetium-99m. Once the radiopharmaceutical is injected, it rapidly travels through the bloodstream and into your child's brain. A special camera, called a SPECT camera or gamma camera, is used to take pictures of the brain.

Cedars-Sinai Medical Center in Los Angeles is using SPECT scan for various brain issues, including Alzheimer's. High speed SPECT imagery is also being used in cardiology at Cedars-Sinai

We are so thankful for the FREE resources the Lord is putting in our lives. As we are praying about taking Emily to the Amen Clinic in Reston VA, we were telling our librarian about her situation. She has been super helpful on locating useful books and information, while we go through the testing and different things that are all part of this quagmire! We had searched for Dr. Amen's books, but had not found them at our library - but she did!

We eagerly checked Change Your Brain - Change Your Life by Dr. Daniel Amen out. They have it as an audiobook CD. We began listening to it as a family, so we can familiarize ourselves with what they are doing at the Amen Clinics.

We are on the 3rd CD and thoroughly enjoying it! Lots of great tips, fantastic ideas about the brain. Emily is understanding it quite well.

Of course...there are no words swimming across the page in an audio book!

Our fabulous librarian also found Making a Good Brain Great! Can't wait to dig into that one.

Call this all homework - since our goal is to raise enough funds to visit the Amen Clinic in Reston, VA, and have her evaluated and given the SPECT scan. So the more we know and understand about HOW the brain works, the better we will be prepared to understand and ultimately use the information we learn about Emily.

Since we are devoting so much time and attention to the BRAIN, if she ends up with enough hours invested, we might just make this a summer school class!

No matter what Emily's diagnosis ends up ultimately being, improving the health of our brains are win-win solution!

Yet another great pick from the Johnson City Library - a gold mine of information that you can pick up for FREE with a simple library card!

A few months ago, while browsing in the "NEW" section in our public library, I found Brain Injury Rewiring for Survivors by Carolyn Dolan. Not sure what Emily's ultimate diagnosis was going to be, I was a little hesitant to pick this book up. Why plant the thought "brain injury" into her situation?

But pick it up I did, along with Carolyn's companion book, Brain Injury Rewiring for Loved Ones, which shares the story of how to help a loved one through a brain injury.

This series is a fascinating look at what happened in Carolyn's life, after an accident in 1976 that left her a traumatic brain injury survivor. I read quickly through the book, very encouraging to read her story. Rather than sit back and be a "brain injury victim" Carolyn has taken the initiative, and gotten on with life! Not perfectly, perhaps not quite like she would with full brain function, but certainly she has gone to great effort to put her life back together. She is now a triathlete, earned two masters degrees, and published 2 books!

Wow! My hat is off to Carolyn for NOT sitting around and feeling sorry for herself, but getting on with life!

The most fascinating part of the book is how much of it correlates with much of what we have done for years through the learning issues, and intuitively fell back into when Emily started having problems - from incredible nutrition and brain building supplements, to exercise, and our plans for enjoying more classical music and creating with art this summer! What a huge encouragement Carolyn is to this Mama trying to figure out what is WRONG with my child!

So if you know someone who is, or has a loved one with any sort of brain injury, we highly recommend Brain Injury Rewiring for Survivors, and Brain Injury Rewiring for Loved Ones, both by Carolyn Dolan. Please visit Carolyn's site, and buy your book from her - the money will go to her and you'll get an autographed copy!!

We are learning so much! Sometimes really simple things can really help someone with a visual problem!

One very odd thing that Emily has realized is that it is very difficult for her to SEE black printed on white pages.

For school books and assigned reading, this can be difficult to get around, and incredibly frustrating for her.

Our occupational therapist suggested, so simply and brilliantly, that when we have the option, get some fun colored paper and PRINT assignments, information, reading, etc. on colored paper!

It just might help!

This simple tip might be useful to try with anyone who struggles with vision, has learning issues, or complains about page brightness.

We headed out to Dick's Sporting Goods yesterday, with a coupon and a need to buy heaver weights. We have been lifting weights at home since February, when Phyllis N, a personal trainer in our Sunday school class, generously taught us how to do it! Phyllis had us start slow, with smaller weights, and begin to learn form and gain strength. Quietly, over the last few months, we have all been steadily increasing weights. Slow and steady wins the race! Each time we up our weights - it is a huge triumph! Our whole family does it - we are absolutely WILD about strength training and wish we would have known how fantastic and STRONG it made us feel, a long time ago! Just thankful we are doing it now, and highly encourage all of YOU to try it!

Emily and I had been looking at a Bosu Ball, which retails for $109. The Bosu Ball is fantastic for developing core strength and BALANCE. Since Emily is struggling with balance, we were interested. We had also seen a segment with Bob Harper (from the Biggest Loser) where he stood on a Bosu Ball, on one leg and tossed a ball back and forth, answering questions for someone. He said not only does this develop core strength, but it keeps the brain fit. As we watched, it hit us like a ton of bricks that what he was doing was involving all of these muscle groups, while throwing a ball from right to left, crossing the midline, and answering questions - that is a DYNAMIC brain exercise! We wanted a Bosu Ball, but it was out of budget and HUGE (we have a small house).

While we were poking around the back section of the store, we saw a CLEARANCE table. Who doesn't like a bargain? We are rank amateurs in the fitness department, but learning constantly and love experimenting with new things. We tend to research and try to use a few criteria when we evaluate stuff: Will we use it? Is it useful and practical for our fitness goals now, in the future or when we travel? Can we store it easily in LIMITED space? Can the whole family use it? Is it junk? Will it end up in a garage sale?

Well, at the top of the red tags, we saw two items that might take the place of the Bosu Ball, and slide under the couch, for only $9.99 each! SCORE! The first was a GoFit Core Stability Disk, which helps with balance, core strength and exercises glutes, legs and abdominals - what is not to love there? One of the disks was out of the package, so we stood on it. Perfect - this is a low tech, easily storable substitution for the Bosu Ball, at 1/11th of the price! Emily could learn to balance, then balance on one leg, then add tossing the ball from hand to hand while balancing, then questions! Ideal! All GoFit items come with a DVD that teaches you how to safely exercise for maximum effectiveness on each one, generally with beginner to advanced tips. We will pay attention to the form/technique, and add brain exercises in as they are mastered!

Below the Stability Disks, we saw another intriguing product, a Core Wobble and Balance Board. It reminded me of an old wooden surf board, cut into a round circle - it just seemed ideal for surfers! This board will work the same core muscles, help with balance, strength, stress (we are supposed to cut stress out of Emily's life) and more. A second, slightly different tool, that we can work brain exercises into as well! This will be phase two, after she gets the easier Stability Disk mastered! Best of all, both GoFit pieces help reduce pain! Great solutions for The Great Brain Saga!

When you have nowhere else to turn, you design your own rehabilitative program! We are NOT giving up! End of story!

Praising the Lord for great deals, a fantastic coupon, cash from a great used book sale, and for showing us these tools and lighting up my brain with possibilities!

As the idea of fundraising to earn enough money for Emily to get a SPECT scan began to gain traction, we knew we needed to avail ourselves of the wisdom and advice of solid financial people. Our target goal is to raise $5000, enough to pay for the SPECT scan, clinic visit, anything prescribed or needed at the visit, and travel expenses. This is a massive undertaking, and we feel so unworthy of where to begin...but you know, we just have to press on. Constant, continuous prayer and a desire to help Emily's world cease to be the blur it has been for over a year, urges us on. Do the next thing!

It is our goal to keep fundraising transparent, fully accountable and done properly. If we have to stand before the IRS, we need to be able to account for every penny, not to mention to our friends who will so generously be helping us. We always need to be able to stand before the Lord, as stewards, as well. We are just parents, trying to pay for expensive health care for our child, not pros at this and definitely NOT financial experts or skilled fundraisers!

With that in mind, we interviewed several area banks on the best way to start a medical benefit account. From our work with the Gray Business Association over the last few years, we started with the experts in the GBA. We were trying to figure out the best, safest and simplest way to do this. We knew of several friends that had opened medical savings accounts, where people could walk in and make a contribution, and we wanted that to be available, along with PayPal. Yet we wanted it all to be safe and secure! In the land of identity fraud, you simply cannot be too careful!

We talked to Pete Roller at Bank of Tennessee, the GBA president, who is always solid on everything financial, along with Travis at First Tennessee, and Suzy at Green Bank in Jonesborough. All had slightly different solutions on the best way to do it. It is easy to get lost in terms, TUTMA, TUGMA, savings account, checking account, medical savings account, etc! Wow - so many options. Since First Tennessee seems to do a lot of medical savings accounts, and people are familiar with their work helping kids get the care they need, we chose them!

After talking to local banks, we then ran the entire thing through our CPA, Jim Cline, to make sure it was all okay. Jim is an excellent CPA, an Endorsed Local Provider for Dave Ramsey, and just an all around good guy! Jim gave us the go ahead. We thank him for generously donating his time to "The Great Brain Saga!"

Emily Baughn Medical Benefit Account

Anyone who would like to donate, in any way, including anonymously, can donate to:

Emily Baughn Medical Benefit Account at First Tennessee Bank, 222 Old Gray Station Road, Gray, TN, 37615, (423) 477-8344. You can visit your local First Tennessee branch all over the state or mail them a check if the Lord moves you to donate! Thank you!

We thank EVERYONE who volunteered so much time, wisdom and advice to setting this whole thing up properly - from the get go! We thank you for prayerfully considering donating to Emily Baughn's Medical Benefit Account!

TIP for anyone starting a "Medical Benefit Account." If you are in the same boat we are in and trying to pay for your child's care, realize that laws may vary state to state. It is a good idea to check with several banks in your area, and compare what they have to offer. Don't get confused with all the options, or get bogged down. Choose what works best for your particular set of circumstances. Check with an accountant or CPA and go for it - your child needs your help!

Here is a fundraising article that may help any potential medical fundraisers out there! We gotta stick together and pass on good information!

As ever, we are putting all of this information out there in the hopes that it will help others. This is a tough road to walk down...and knowing someone else has walked it makes things a little better!

One of the things that Julie Fish, the Occupational Therapist that saw Emily suggested, is that we have her do mazes, which might help with figure/ground issues and help visual perception. A friend just posted Mazes To Print, with oodles of free mazes ready for the printing, right off your computer at home!

This is a great resource full of mazes for anyone that enjoys mazes or homeschools as well!

Julie also suggested we have Emily do difficult "word find" puzzles, to keep her brain working in different ways. Can't hurt!

Okay, so now what do we do?

Immediately after the accident, in March 2009, we went to the chiropractor, the eye doctor when she woke up with visual disturbances the next day, then emergency room when the visual disturbance did not go away, where she had a CT scan.

Kept up with the chiropractor for structural damage repair.

Summer of 2009, had a 2nd eye exam that revealed normal vision, told that the visual disturbances were in the brain and she needed to see a neurologist. Saw our primary care physician, who promptly ordered an MRI of the brain. A growth in the pituitary area caused them to order a 2nd MRI of the brain, with contrast, the day Mr. Obama visited our area to talk about his health care plan. Sigh. Would she get to brain MRIs in a week? Our primary care physician diagnosed it a concussion and told us it may take up to a year to resolve. Will not refer to a neurologist.

Summer burns on, the situation is not resolving and I begin calling every "specialist" I can think of. Why is Emily struggling to read? She was at grade level in 9th grade, when the accident hit, so why has she regressed? 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. While it sounded great, it was way out of range financially. I called MTSU and talk to the specialists there. No one has ever heard of what is going on with Emily, I am told they "cannot predict what the brain will do." They suggest Vanderbilt. Coming from Southern California, I feel lost - my specialists and hospitals are 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.

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. 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. 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.

We take Emily to see a nutritionist. Are you aware of how nutrition affects the brain? I have studied this for many years, and we have many "brain building meals" in our repertoire. 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.

Summer turns into fall. Emily is still not able to see properly, she sees the top half of letters on a page, it is all blurry. We buy new lights and rearrange her room and encourage her to try to read with different lighting conditions. 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, spent $8000 on 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.

She still struggles to read, but has started 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).

Miracle of all miracles, she begins to read fluently 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!

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, 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.

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 passion, where she wants to spend her life. She has read every horse book, lived, dreamed and breathed horses for so long, Equine Science should be a cake walk. Something is still wrong....

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.

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!

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.

Last week was 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 it. (when your auto/private insurance are not paying, it really cuts options based purely on financial reasons). I was 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?

Still waiting on MRI results...