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The Girl With The Headache - update

It's been almost a year since I first posted here about Ambria and her struggle with Post Concussion Syndrome.  At that time Ambria had already been suffering for a year, and I was at the end of my rope.  To quickly recap, Ambria came home from a church dance with a debilitating Migraine one day in late February of 2015.  And it didn't go away.  For months.  She couldn't go to school, or church, or out with friends. Life sort of came to a stand still for her.  She spent most of her days sleeping, and when she wasn't asleep she was like a zombie and in so much pain.  She was eventually diagnosed with Post Concussion Syndrome.  She'd suffered multiple sports concussions from playing soccer.  She was just supposed to try and treat the pain while waiting for her brain to start working properly again. We had many doctor's visits, tests, dietary changes, different perscriptions, so many things to try and help with the pain.  Nothing helped.  Months kept passing without us being able to find a way to help her.  Those months stretched into a year and I felt like I was losing my mind.

As a mom, watching your child in pain is unbearable.  And on top of her physical suffering, she was in so much emotional pain. Not only are depression and anxiety some of the symptoms of brain injury, but she was also just lonely and heartbroken at all of the things she'd lost.  Like the ability to go to school and church and be with her peers and friends.  She wasn't physically able to go and hang out with friends and interact socially the way she had been used to.  She was just so isolated and discouraged.  To this day I am so thankful for a best friend who stayed by her side through all of it and did everything he could to try and help her feel less lonely and left out.

As I said, I was losing hope.  I spent more time on my knees praying during those months than I have the whole rest of my life combined.  One day I had the thought to re-visit a news article my brother had mentioned several months into Ambria's struggles.  It was about a clinic that treated people who suffered from concussions.  I remember that the first time I looked at it, it didn't seem to be very applicable to Ambria's situation.  But something told me I needed to go back and find that article and read it again.  It said all the same things I remembered, but being further into Ambria's condition and the things I had learned about over the past year, it seemed like there might be more there that could possibly relate to Ambria and her condition.  So I went further and visited the website of the clinic (Cognitive FX).  Her biggest symptom was the horrible Migraine pain.  But she also was suffering from the emotional and cognitive symptoms mentioned on their website.  I decided to contact the clinic and ask specifically about Migraine.  I received an immediate response with some video links to patient testimonials of female teen athletes who had come to the clinic for treatment.  As I watched the videos, the tears just flowed.  When I listened to the girls tell about their injuries and their symptoms, it was as if Ambria were speaking.  And then the mothers.  When those moms spoke I wanted to reach into the computer and hug them.  They WERE me.  The things they spoke of feeling while watching their daughters suffer, and all that they had seen them lose or have to give up.  I knew this was the next step to try and find some help for Ambria.  I went to Jeremy and we talked about it, and prayed about it - and I'm not exactly sure how strongly he felt that we needed to do this, but at this point he was ready to try anything.  "Let's do it." he said.  He told me that we'd figure out how to pay for it somehow, and to just make the appointment.  It took some convincing for Ambria.  She was tired of trying things that didn't work.  The treatment wasn't going to be pleasant.  And being Ambria, she worried about the financial burden on our family.  She just didn't want to go to all that expense, and through the pain of the treatment just to have it not work.  Of course, we didn't need her approval to move forward, but we wanted her to go into it with a good attitude and give it her all.  Again her best friend was there to help convince her that this was worth a try.  And not just worth a try, but something that was worth putting our hope into.

We went to the consultation and were told that Ambria was a perfect candidate for this treatment.  We got it all set up, and were able to get her started much sooner than expected.  Which was good - but gave us much less time to try and save up the money.  We weren't insured at the time, and the treatment is currently not covered by insurance anyway.  We have the most amazing people around us.  One friend suggested we do a fundraiser auction like she and her husband had done to help pay for adoption expenses.  She offered to do whatever we needed help with.  We had only a short time to throw it together.  But so many amazing people (family, friends and friends of friends) came forward to offer services or products for the auction.  Several local businesses that we wrote to sent us items to auction off as well.  We had such good and generous people - some who knew and loved us, and some who just heard about it from friends -who bid on the auction items and it was a huge success.  And several people just loved us and quietly slipped us a donation to help pay for her treatment.  We were overwhelmed with the love and generosity of so many people who wanted to see Ambria get some relief from her pain. With this, added to what we were able to set aside from our own income, we were able to pay for her treatment. There are no words to express our gratitude.

Ambria went through the week-long treatment.  I'm going to do a follow up post with specific details of what the treatment entailed, because there's too much and it deserves a separate post of it's own.  Treatment was difficult, as expected.  And there were moments where the tears fell, and she just wanted to give up and go home.  But she's a fighter, and she worked hard and did everything they asked of her.

By the end of the week, her follow up tests showed significant improvement from the tests performed before treatment.  And she was noticing significant improvement in her cognitive and emotional symptoms.  The headaches were still a problem, but she felt that there was an improvement in how quickly she was able to bring the pain under control.  And there was a significant improvement in her ability to tolerate car rides without her pain getting too unbearable.  It was a start.  She said that she definitely felt that the treatment had helped.

We returned home and she was able to go to almost all her classes every day for the final 6 weeks of school.  Before treatment she was only able to make it to 1, sometimes 2 classes, and only a few times a week.  She had been sent home from the clinic with exercises she needed to continue on her own, as well as returning to the clinic once a week for some follow up on working out her headaches with neuromuscular therapy for about a month after.  As weeks went by, and summer came, she kept improving and improving.  We were still very anxious for what kind of toll high school would take on her condition.  But fall came, she started school, and although it was a struggle at times, and she had a couple setbacks with pain and cognitive issues, she pushed through, continued her at home exercises and improved week by week.

She is not able to play soccer anymore, or any sport that has a high risk of head injury.  This was something she did NOT overcome with a very good attitude.  But she grudgingly gave tennis a try.  She has grown to LOVE it and can't wait for warm weather to return so she can get back on the courts.  Tennis and being out in the sun was hard on her at first.  But she improved each week and is steadily gaining her athleticism back, as well as building up more of a tolerance for sunlight.

She went in for treatment just under 9 months ago. A year ago she couldn't step out in the sun at all without developing an instant migraine.  She had to wear dark, ugly (her description) wrap around sunglasses and the sun STILL gave her a headache. She couldn't do anything physically exerting without it triggering a migraine, and car rides were torture. Today she has played a full season of tennis on her high school tennis team (with plans to take private lessons from her coach in the spring), she has been able to return to wearing her cute, stylish aviator sunglasses and even occasionally forgets them and is able to survive the sunshine for a short time without glasses.  And, if  the driver is aware of her situation and drives carefully, she is able to tolerate most car rides without getting a headache.   And her personality.  MY DAUGHTER IS BACK!  The funny, spunky, sassy, acting crazy no matter who's watching, girl I used to know is back.  Her laughter fills the house again.  Her antics make us roll our eyes but secretly our hearts are bursting with joy.  She is back to being a light to her friends and peers in school.  Her confidence and outgoing nature is returning and we are SO BLESSED.

As I mentioned previously, our gratitude runs deep.  For our wonderful supportive and loving family.  For everyone who loved us, prayed for us, helped with the financial burden of her treatment, checked in on Ambria or helped in any of a million other little ways.  I also can't express enough how thankful we are for the wonderful people at our amazing school who did everything to help her over the better part of 2 school years to be able to be successful in her classes and keep up with her grades and be able to earn all her credits and move on to high school this year.  There is no way she would be where she is in school with all the time she missed, if it weren't for these devoted and amazing people.  We're forever indebted to the wonderful team at Cognitive FX who treated Ambria, made us feel like family, and helped her heal in all ways.

Most importantly I'm thankful for a loving Heavenly Father and Savior who held us up through all of it.  There is no way we could have faced this without our faith, and knowing we could turn to our Heavenly Father in prayer for strength and guidance.  I KNOW we saw many tender mercies, priesthood blessings fulfilled, and were part of a beautiful miracle of healing because of the love of our Heavenly Father. I am grateful for this trial, the people it brought into our lives, and the ways we were able to learn and grow.

First day of High School

Little sis was her biggest fan.

Receiving the coveted "Princess of Poison" award - player who won the most rounds of Poison (one of their drill games they did each practice).

Photo shoot for her brother for his missionary application.


Karen Peterson said…
This makes me so happy! I've thought a lot about you and Ambria over the last year and I'm glad to know she's doing so much better!
Mom22Paynes said…
I'm so happy things have more hope now!! Is she still close with Justin?
prashant kumar said…
Great thanks for sharing this may help me on my blog Sciece Atom

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